Maxwell Charles Munakata
Friday May 26, 2006
I go for my regular check-up w/my OB-GYN, Jeff Kerr-Layton. We really
want him to be the one to deliver Max, rather than any of the other 12
docs who might be on call when I go into labor. Jeff jokes that this
Sunday would be a good day for him.
I run into Yuhong and Doug, a couple from our birthing class, w/their 2-week
old in the lobby. Yuhong explains that they first went to the hospital when
she thought her water broke, but it turned out to just be her mucous plug
coming out, and they sent her home. I wonder how any reasonable pregnant
woman could mistake her water breaking (a watery event) w/losing her mucous
plug (a mucous-y event).
Sat May 27, 2006
Randy and I walk out the door to see a 4:30 showing of the movie ``Water,''
after high-fiving each other in celebration of completing our post-semester,
pre-Max work projects (3 articles, 2 chapters, and a grant for me, though
there is some controversy over my article-counting methods...). We decide at
the last second to wait for the evening movie, since we're running a little
late, have some smaller work tasks to finish up, and want to enjoy a decaf ice
cappuccino in the sweltering afternoon heat. Half an hour later, my water
I jump up from the couch. I never understood how any reasonable pregnant
woman could mistake her water breaking (a probable event) w/peeing her pants
(an improbable event) -- a common confusion according to the pregnancy books
-- but I do actually think that I have peed my pants. I come to my senses
seconds later, and start to panic as I clean myself up. Randy asks if he
should be taking pictures. (No.)
I call Bonnie
Slater, my doula, from the bathroom. I actually find myself wondering how
to tell the difference between water breaking and losing the mucous plug.
Bonnie explains that water is watery, mucous is mucous-y. I come to my
senses, and confirm that my water has broken. Max is coming!!
Randy leaves for several hours of errands (shopping for last-minute baby
items, doing laundry, paying rent and depositing checks, picking up stuff from
the house, filling the car w/gas, etc.) -- a remarkable amount of stuff given
all the prep we've been doing over the preceding weeks. I mainly hang out in
the bathroom, constrained there by surprisingly steady water leaking. I call
various folks to share the news. In response to incredulity that Randy is off
doing errands, I explain that we're going w/the non-Hollywood style birth, and
actually plan to stay at home until 5-1-1 (contractions every 5 minutes,
lasting 1 minute, for 1 hour) or until 5 am (12 hours after water breaking),
as recommended in our birthing class.
With all the errands, packing, conversations, small work tasks, and
adrenaline, we end up staying up past midnight, instead of sneaking in as much
sleep as possible before contractions, as recommended. Randy gets cranky, and
reprimands me for working on my lab newsletter, of all things, as one of my
final tasks. He does manage to humor me by shooting a video of us expressing
our pre-Max thoughts just before bed.
Randy gets a whopping 4 hours of sleep, I'm up all night. My contractions
start ~ 3 am.
Sunday May 28, 2006 (Max's Birthday!)
We drive to the hospital ~5 am, with a spectacular sunrise.
My contractions are coming every 5-7 minutes, and feel remarkably
manageable -- a 2.5 on the 1-10 pain scale that I'm constantly asked
to assess. When we check into Labor & Delivery, the nurse asks if
there's a full moon -- 5 other women have just checked
in, the staff were amazed to see a line at the door, and they have
several inductions and Cesareans scheduled on top of this. We hope
there are enough nurses and doctors to go around! We don't know
enough at this point to start counting anesthesiologists.
I'm examined ~7 am, and have dilated to 4 of the target 10 cm. We're
amazed that I'm almost halfway there, and my pain levels are still
minimal, ~ level 3 (aside from the stunning pain of the examination
itself, which turns out to be unique to that one doctor, who
thankfully rotates off so I never see him again). Randy and I
speculate that I may be a freak of nature who will experience a
painless childbirth -- how exciting! How wrong.
The next several hours are wonderfully easy, but unfortunately
unproductive. When I'm examined ~10 am, I'm still at 4 cm. The
doctors don't want too long of a delay between water breaking and
delivery, so I'm given pitocin to induce labor. I've heard horrible
things about the increased pain of induced labors. The doctor tries
to reassure me by saying that is a misperception -- women think they
were laboring fine and then pitocin drastically increases pain, but
really they weren't laboring fine and pitocin just gets things going
normally along with normal levels of pain. This makes some sense, but
can't explain away friends who have served as their own controls
(births with and without pitocin), who curse pitocin.
I can't really say what happened during the next several hours. You
would have to ask the non-verbal, non-thinking, purely sensory being
who inhabited my body during this period -- though I guess you
wouldn't get much of a response. I'm vaguely aware that Randy keeps
asking me what I'd like him to do, and doula Bonnie explains that I
won't be able to answer him. I had heard this would happen (and that
in fact, my feared scenario of yelling at Randy throughout the labor
would be physically impossible), but I couldn't comprehend being in so
much pain that I would be unable to talk for such a prolonged period.
The pain is completely different from what I expected -- not at all
high-pitched and focused around the baby, but instead very
low-pitched, deep, and all-encompassing.
At some point, I'm told I've made it to 5 cm. When I'm examined many,
many contractions later, the nurse kindly proclaims that I have made
it to "more than 5 cm." She couldn't say 6, but she knew how
demoralizing it would be to say 5 again. I decide that I've labored
without pain medication long enough to know that I don't want to do it
any more. I am also filled with awe for all of the women who have
managed natural births since the beginning of time. And I feel just a
little afraid of my friends who have accomplished this feat -- that
kind of strength seems a bit terrifying.
The anesthesiologist is called, comes quickly (despite the crowds
giving birth today, whew!), and sets me up with an epidural. If we
hadn't been so set on the name Max, I would have been inclined to name
him after the anesthesiologist. Wow. I open my eyes and emerge from
a fog. I announce that I'm here, and start saying introductory
hello's to everyone in the room. (I believe there was also some
delirium about telling everyone how beautiful they looked.) I am so,
so happy to feel like I can now be "present" for the birth. This was
one of our goals on very basic birth plan list -- healthy baby,
healthy mom, presence of mind to appreciate this miracle. After much
rejoicing (which the anesthesiologist captures on our new hi-def
videocamera -- quite a versatile guy! who is also into gadgets),
Randy and I sleep off and on through the afternoon. Our friend Akira
was later quite confused to hear this. He couldn't imagine how I
could fall asleep while trying to push my baby out. But pushing is
actually a very small part of labor -- again, contrary to Hollywood
depictions! I learn later that Randy was quite baffled himself,
watching the monitor graphing my ever stronger contractions and
marveling at me sleeping through them.
As I get closer to 10 cm and pushing-time, Bonnie asks if I'm ready to
no longer be pregnant. This seems like a bizarre question. But I
have in fact loved being pregnant -- knowing Max's heart is beating
inside me, feeling his kicks and squirms and hiccups, having him all
to myself. So I can see how one might want to brace for missing all
of this. But I am so ready to meet and to know and to love him.
We get the go signal at 8:15. Jeff Kerr-Layton (our desired OB) has
arrived for the delivery! After some brief instructions (push like
you're pooping), I start pushing 3-4 times with each set of
contractions. Randy decides it would be helpful to shake my shoulders
while I push. No one suggests this technique, and in fact several of
us indicate that it may not be useful (and verges on annoying), but he
can't help himself. We've been told throughout the labor that Max is
positioned low, ready to emerge. Sure enough, we're soon able to see
a spot of the fine black hair on the top of his head. I'm told this
is often the most painful part of delivery. I can't feel a thing.
Have I mentioned what a wonderful human being the anesthesiologist is?
A large mirror is set up so that I can see Max descend with each push,
just the smallest perceptible amount. But then he retracts, what
seems to be the same distance back. I find it too unsettling and
distracting to watch, and close my eyes.
Bonnie needs to instruct me to look when Max's head pops out. Seconds
later -- at 9:32 pm -- he emerges completely, to Jeff singing Happy
Birthday and telling him he's zero! Max is placed on me, and Randy
blinks away his tears to cut the umbilical cord. Jeff exclaims to
Max, "You're free! You're free!" "Wait til you see the remodel!"
(We're scheduled to move back into our house in a month, following 3
months of home renovations that began with just wanting a place to put
We've been warned that newborn babies can seem rather unattractive --
bloody, goopy, misshapen. Max couldn't be more beautiful. Randy and
I can't take our eyes off of him. We cry tears of joy, amazement,
relief, and love. We get to hold Max for an hour before he is taken
briefly to a corner of the room for his measurements and tests.
Everything looks perfect.
I can now comprehend not only how you could confuse water breaking for
peeing your pants, and how you could endure hours of pain so great
that you can no longer speak -- but also how you could confidently
pinpoint the happiest moment of your life to your baby's entrance
into the world.
Mon/Tue May 29-30, 2006
Blissful groggy days when we are never separated from one another. We learn
that Max seems incredibly easy-going (not sure who he got that from...), loves
to gaze intently at Daddy and hear songs about himself from Mommy to the tune
of itsy-bitsy-spider, and is objectively the cutest baby in the whole world
(as confirmed by every nurse we pose the question to directly ;-).
Weds May 31, 2006
We are supposed to go home from the hospital w/Max, but instead we get
transfered to the neonatal ICU in Denver, because Max hasn't pooped yet.
(Most babies have their first poop within the first 24 hrs, most of the rest
within the first 48 hours. Max was 48 hours old Tue night -- we were all
figuring/hoping he would just poop by Weds morning since all of his other
health measures were totally normal, but he didn't.)
The doctors do various tests and determine that Max has some kind of complete
blockage in his small intestine, which is preventing his food from passing
through and needs to be treated quickly. So Max goes into surgery at 9:30pm,
and comes out ~11:15pm. The surgery seems to be successful at removing the
blockage, and Max's prognosis is excellent.
Thurs June 8, 2006
Started yesterday to eat Yuko's breast milk from bottle -- some going through
the system, some coming back up. It is a slow process to dilate the intestine
past where the block was (it shrunk from disuse). This could take a couple
more weeks. He's happy and alert (when not sleeping) and not feeling any pain
or discomfort. We've been bathing him and doing other basic parenting things
(with some expert coaching from the nurses), which feels really good!
Sat June 10, 2006
In the end, Max ended up spitting up all the breast milk he was given, whether
it came in periodic feeds (6 cc every 3 hrs) or in a continual feed (2 cc/hr).
Because his food is not getting through, we are preparing for a second surgery
sometime this week -- stressful for us, but at the same time, relieving. The
surgery is straightforward and pretty much guaranteed to work, and it will
ease the discomfort Max showed when attempting to eat. So, we'll be in the
NICU a bit longer, but again, Max's prognosis is excellent.
Mon June 12, 2006
Max's second surgery went smoothly tonight -- we're very relieved, happy, and
exhausted, and will post more soon.
Tues June 13, 2006
Today is a mellow day for Max, as he rests and recovers from
Weds June 14, 2006
Another mellow day for Max -- lots of well-deserved sleeping, which is good!
His recovery is going well. He is already off of his ventilator (which is
standard issue after surgery), in half the recovery time of his first surgery.
He is comfortable, which is a big relief. We're looking forward to being able
to interact more w/him again over the coming days!
Fri June 16, 2006
Max gets to meet his Uncle Dave! Dave is back in Colorado this week
for a conference he is organizing, and then heads back to finish his
summer in Stuttgart, Germany. Max stares intently at Dave, perhaps
recognizing his voice after repeatedly hearing him from the womb?...
Sun June 18, 2006 (The Diagnosis)
This is a difficult update about Max's diagnosis. It turns out that he has
the most serious and rare disease of all of the possible options given his
symptoms: the long-segment aganglionosis version of Hirschsprung's disease.
The doctors had indicated early on that this diagnosis was unlikely given
Max's specific profile, and they thought they had ruled it out with a
preliminary test during the surgery on Monday (which made us very relieved and
more confident that he had immature ganglion cells that would mature in a
month or so and he would be all better (More
Details)). But, more substantial and systematic follow-up testing has
revealed definitively that aganglionosis is the condition he has. It has
essentially the same clinical symptoms as immature ganglion cells: in both
cases, essentially no peristalsis occurs, and stuff doesn't move through the
gut. The difference is that the immature case is transient, but aganglionosis
is unfortunately a permanent condition. Although the condition is serious, it
is treatable in various ways, and we're going to be learning a lot more about
this in the coming days.
In Hirschsprung's disease, ganglion (nerve) cells fail to migrate to the
intestinal system, so that it does not produce peristalsis, and does not move
things through the system. The long-segment form has been traced to a random
genetic mutation (in the RET gene) in most of the cases that have been
analyzed -- none of the parents had the mutation, but the kids acquired it.
This is presumably why it is so rare (one estimate is .1% of the Hirschsprung
cases, which are 1/5,000, so this is 1 in 5 million). We'll get genetically
tested to see if either of us has the mutation though -- the genetic story is
complex and other forms of Hirshsprung's are heritable. We won't know with
certainty how much of Max's system is affected until further tests this coming
week, and this will determine how he is treated and what his prognosis is.
We met with Dr. Morrie
Ziegler yesterday (who happens to be one of the world experts on this
condition) and he stepped us through the situation (we have also been doing a
lot of reading). He said that the minimum length of functional intestine
needed for normal function is 40cm, and probably 20cm is the real lower limit.
If Max has 40cm or more of ganglionic intestine, then his prognosis is good --
he will have a stoma and then later potentially a ``pull through'' that
connects back to his colon so he'll be completely normal (with likely some
more minor digestive & dietary issues). If he has less than 40cm, then things
will be a bit more challenging, but not without hope. It turns out that
Ziegler invented a procedure (in 1985, written up in a 1993 paper) that takes
less than 40cm of ganglionic intestine and essentially turns it into the
minimal 40cm worth of intestine needed, using the aganglionic section in a way
that enables it to pass stuff through even without peristalsis (essentially,
stuff gets pushed down from above). He said that two of the patients he has
treated with this procedure and followed up with are now 23 and 15 or so, and
doing really well -- getting most if not all of their nutrition orally. One
of them lives in Boulder! We will likely meet them soon and that will be a
great source of support and encouragement.
To the extent that Max cannot get all of his nutrition from the gut, then he
must rely at least in part on IV nutrients (which is what he's been on so
far). Although the IV can provide very good nutrition (called total
parenteral nutrition or TPN), and can be supplied with portable fanny-pack
unit that is minimally invasive, it taxes the liver and has risks of infection
and other things. It seems that these liver problems are greatly reduced when
at least some ``enteric'' (intestinal) nutrition is also coming through. So,
the goal is to get as much enteric nutrition as possible.
The plan for the next few weeks is probably as follows. Max will have another
operation this coming week (maybe Tues, but maybe a bit later) to find out how
much of his intestine has functional ganglion cells. A stoma will be brought
out at that point, or, if he has less than 40cm, at 40cm. He may also need a
G-tube to drain stuff from his stomach and provide continuous feeds. This
should make him a lot more comfortable -- he really doesn't like his current
nose tube. Then, we wait to see if stuff starts coming out the stoma (as long
as a couple of weeks). If that starts to happen, then feeding will start and
will be incrementally increased as the system starts going. If he has < 40cm
of ganglia, Ziegler said it is possible that the aganglionic part will just
work anyway (we know for example that it was capable of moving the mecnonium
all the way down to near the end of the small intestine), but if it does not,
then the Ziegler procedure can be used to make it more likely to move stuff
Depending on how all these things go, Max may also be put on a donor list for
transplantation -- this would not happen until he is older than a year. These
transplants restore complete function and are a real cure to the disease. The
risks come from immunological rejection of the tissue, and other complications
of the major surgery involved, but recent studies showed as high as 86%
success rates. The issues here are that often the people who get the
transplants are in very bad shape by the time they get them, because of the
way the transplant waiting list system works. Drugs to manage the immune
rejection stuff are progressing very rapidly apparently. Again, we'll learn a
lot more about this.
So, overall, there is still substantial basis for optimism and hope, and we
are in excellent hands here. It is quite amazing that the world expert on
this condition, Dr. Ziegler, is here, and will be one of Max's primary
doctors. We'll be transferring to Children's Hospital (where Ziegler is
based, right next door to St. Joes where we've been) for Max's next operation
and subsequent care.
All of us (including the staff here), have been stunned by this diagnosis,
because it is so rare, and because there seemed to be lots of reasons to hope
for simpler outcomes. The two of us have had moments where we have been able
to be strong for each other and for Max. Mostly, we have been alternating
among feeling numb, devastated, accepting, and hopeful. When we are numb, it
seems like this is all just a dream, and we'll soon wake to the idyllic life
we had envisioned, w/frequent strolls along the Boulder Creek path w/Max.
When we feel devastated, we are overwhelmed by the sadness of our precious
baby having to struggle with this 1-in-5-million condition, and all of the
uncertainty and difficulty in our futures. When we feel accepting, we
recognize that Max has had this condition basically from the very beginning --
it is just gradually unfolding for us to understand, and we are so fortunate
that things can be done for it. When we feel hopeful, we think about the many
possible ways that Max can pull through this, and go on to enjoy a rich and
fulfilling life. We love Max so much -- he has brought us incomparable joy.
We envision him coming through all of this and becoming a very strong person,
who will inspire us all to better appreciate the beauty of life.
Meanwhile, Max is continuing to recover well from his surgery and was alert,
happy and curious a lot over the past two days! He is very comfortable and in
great shape for the long road ahead.
Mon June 19, 2006
Today was a big adventure for Max -- we moved to Children's hospital.
Even though it was just next door, and he is completely stable, an
elaborate transport team with an amazing infant transport device was
dispatched (see photos). The three
team members all had matching action-hero jumpsuits and looked the
part perfectly. They were all really nice and joked about their fancy
outfits. We traveled in an ambulance. Randy felt sorry for the
people who saw us -- it looked like some kind of major disaster had
happened. A woman in the parking lot came up and caressed Yuko for
comfort -- who fell apart a bit at the drama and kindness of the whole
scene, but Max slept peacefully through it all! At Children's, Max is
already winning the hearts of all the nurses, and trying to pick his
new favorite! He is now comfortably settled in.
It is always hard to come to terms with new and scary-sounding information,
and there will be lots of uncertainty about exactly what will happen at
various steps along the way in coming months. But as we adjust from our
initial expectations and learn more, we are feeling increasingly optimistic
about Max's prognosis for a long healthy life. We've had a lot of good
discussions with doctors, and have heard inspiring stories about other
families who have faced similar challenges. We're in excellent hands, and Max
is strong, healthy, loved-beyond-belief, and ready for the next steps.
Tues June 20, 2006
Max is becoming a real pro, and did another great job w/today's surgery. Good
news -- the surgeon found preliminary evidence of ganglion cells, at
~20 cm down. (We had all been bracing for the possibility of none.) Max's
stoma was brought out ~25 cm, so that he should have the minimum needed from
Ziegler's perspective. Although this is not the magic 40cm number, Ziegler
had said that more modern estimates for this number are around 20cm. The main
motivation for bringing the stoma out at 25 instead of 40cm is that the
(hopefully) fully functional 25cm should have a very good chance of moving
things through and enabling Max to more quickly start eating. This is the
best way to protect the liver from the negative effects of total parenteral
If this 25cm segment proves to be functional, some additional length of
aganglionic intestine may eventually be added on. (All of the intestine
beyond the 25cm point remains inside, and also has a stoma for flushing things
through). As mentioned earlier, as long as this aganglionic intestine is not
too long, it can have stuff propelled through it by the upstream functional
portion. This procedure worked for the two Ziegler patients we mentioned
earlier, who actually had no ganglion cells -- so Max is in comparatively good
In any case, the evidence of ganglion cells at 20cm is still preliminary
because it was obtained by a quick but not as accurate "frozen section" method
during the surgical procedure. This is the same method that gave us
false-positive results last time. One reassuring piece of data is that there
was clear anatomical evidence of a transition zone at this point, with the
upstream intestine being dilated relative to the downstream one at this point.
Anyway, we'll await results from the more definitive tests over the coming
days -- still more uncertainty to live with at this point.
The reason this is being posted so late is that Max had some interesting
adventures with his epidural, which he had implanted during surgery so that he
wouldn't need so much systemic narcotic pain relief after the operation
(during the operation, he is on strong gas anesthetics). Although it turned
out that his epidural was placed correctly, it was not being run at a
sufficiently high volume, and he was in some pain. The anesthesiologist who
did the epidural during surgery left for home (surgery took a while, ending at
around 7pm), and unfortunately the night shift guy was tied up in another
emergency surgery case. Furthermore, many of the NICU staff were also tied up
with another emergency. Therefore, it took a while to sort everything out,
which was excruciating for us. But now the epidural is working great, and Max
is very comfortable. In the end, this should be a great boon for a quick
recovery for him -- he was already off the ventilator right out of surgery,
and his bowel function should resume much more quickly without the depressive
effects of systemic narcotics.
Weds June 21, 2006
After a long day of up and downs, trials and tribulations, Max is now doing
very well. It was pure joy to just sit and watch him sleeping peacefully for
several hours this evening, following a good hour or so of comfortable, alert
time. Max listened with rapt, super-cute attention as we described our future
lives back in Boulder. (Have we mentioned that this kid is cute?...) We
spent the day focused on pain management (details below), and haven't heard
any updates about the actual status of Max's ganglion cells.
We now have some valuable perspective on this whole pain-management process.
A major contributor to the problem is that the hospital has a special "pain
management team" that is separate from the NICU staff. Furthermore, this pain
team dictates orders to the NICU folks in a unidirectional manner -- the NICU
people cannot make their own decisions as situations evolve. Unfortunately,
at night, this "team" is just a single on-call doc who is often in emergency
surgeries. Even during the day, the team is spread pretty thin, and
coordinating between the local NICU staff and the pain team is suboptimal.
This seems like a recipe for exactly the problems we experienced: delays,
miscommunication, lack of coordination, etc. The nurse from last night (on
again tonight) said she was going to write a complaint about this situation
(she was at least as traumatized by the whole process as we were!). We are
contemplating doing the same.
The final resolution of the situation, at 6pm today, was to change the mix of
goodies in Max's epidural bag, and give him occasional tylenol and fentanyl to
cover the stuff that the epidural doesn't. This shows that pain management is
a very tricky business. It constantly treads a fine line between too much
(risks stopping breathing and other important functions) and too little.
There are lots of different drugs with different interactions (some
beneficial: tylenol apparently potentiates fentanyl) and some not. Anyway,
this is more than you wanted to know, but it leaves us with a great
appreciation for the complexity of medicine, and the need for appropriate
organizational structures to allow this complex dynamic process to be managed
more effectively. One final thing: the difference between Children's and
St. Joes is that St. Joes just used the safe but blunt instrument of fentanyl
(and also ended up under-treating Max's pain several times), whereas
Children's is developing these more advanced but trickier epidural
Thu June 22, 2006
We find we are growing increasingly nervous about when we'll hear back on the
biopsies. Our sense is that the longer this process takes, the worse the
news. (The original Hirschsprung's results took almost 3 full days.) We
paged the surgeon and the pathologist yesterday, but neither got back to us.
We page them first thing this morning. The pathologist says she'll try to
come see us as soon as possible. The surgeon says he'll be in this afternoon,
but the pathologist should be able to give us "the full report" before then.
No contentful information is communicated to the nurse who paged them. This
only adds to our anxiety -- if the surgeon could have just said that things
were fine, wouldn't he have? So we enter the all-too-familiar process of
trying to kind of brace for the worst, while not allowing ourselves to
ruminate too extensively about all of the possible scenarios and their
implications. (But we do find ourselves second-guessing the decision to place
the stoma at 25 cm, if the original pathology was wrong.)
The pathologist, Sarah Mengshol, shows up a little before noon. She
asks how Max is doing -- small talk that seems a bit unlike her and a
bit like procrastination. She then starts her description of the
pathology results by stepping through some general information about
intestinal anatomy, and where Max's samples were taken from. Randy
and I are ready to leap from our seats to shake the information out of
her. After what seems like eons (but is probably a matter of
seconds), she brings the good news: She and the pathology team are
very confident in the conclusion from the preliminary results -- that
Max has ganglion cells at 20 cm!!!! The permanent stains were
readable at 5 cm, 25 cm (the stoma site), and 30 cm -- the 5 cm stain
showed normal ganglion cells, the 25 cm stain showed some ganglion
cells but not full innervation (consistent w/the idea that this is a
transition zone between innervated and non-innervated intestine), and
the 30 cm stain showed no ganglion cells. There was not enough tissue
left from the 20 cm biopsy after the frozen sections for a permanent
stain to be readable. But they did extensive tests on the frozen
sections and determined that there are ganglion cells, in the right
Now we wait -- as long as a couple weeks -- to see whether stuff starts coming
out the stoma. The hope is that by bringing the stoma out at 25 instead of
40cm, this length of intestine should have a good chance of moving things
through and enabling Max to gradually start eating. So, please add happy
stoma-output thoughts (yes, happy stoma-output thoughts) to your healthy
ganglion thoughts!! ;-)
In the meantime, Max's pain management has continued to go well. He slept
quite contentedly on Randy for several hours this afternoon, waking for only
one brief fuss, during which Nurse Kathy expertly coached Dad on how to soothe
rather than overstimulate Max.
Also, we had a few nice moments today that made us feel like we could actually
start envisioning reconnecting with the real world. I ran into Rich Boada, a
former DU grad student, in the hospital cafeteria -- it was so wonderful to
see a familiar face! He's now a clinical neuropsychologist here. And we
chatted with the surgeons about matters other than Max, which brought a
welcomed sense of reduced urgency. We confirmed with surgeon Dave Partrick
that he is in fact a foodie -- as suspected when we learned that his 10th
wedding anniversary trip to Aspen last weekend was timed with the food and
wine festival there. And we talked with surgeon-in-chief Morrie Ziegler about
the smallness of the world -- he had a phone meeting today with another
pediatric surgeon, Bob Telander (who also happens to be the father of one of
my college housemates), who asked after Max. He also told us about his older
brother Max and how this gave rise to his name, Moritz, from the German story
Max und Moritz.
We obviously still have a long road ahead, but it's incredibly exciting for us
to start thinking more about Max getting to meet all of you!
Fri June 23, 2006
We go by St. Joe's and talk with two of Max's favorite nurses, Diane and Barb
-- it is great to see them and we already feel very nostalgic for our times
there. We find it amazing how much the staff really cares for Max -- we would
have thought that seeing so many patients with so many difficult health
conditions would make the NICU people more desensitized and uninvolved, but
this certainly does not seem to be the case here!
By the end of the day, Max's stoma starts producing some stuff, and we
get a lesson on changing the stoma dressings. This makes the
otherwise fairly intimidating process seem more manageable...
Sat June 24, 2006
Big events for Max today:
Max loves to be held by all of us, and is very happy and curious!
- He's continuing to produce good quantities of stuff out his stoma, and
the docs are pleased. They may start trying very gradual feedings tomorrow
using elemental, easy-to-digest nutrition.
- He's fully weaned off of his fentanyl pain medication.
- He got to meet his Grandma Anna!
Sun June 25, 2006
The big picture still looks the same for Max, but today is kind of a
bump in the road. His epidural is turned off in the morning and
removed around noon. He is very unhappy about this, fusses through
much of the day and night, and requires more pain medication. His
broviac (heavy-duty IV) becomes dislodged at some point; the nurse
does a temporary fix, but the longer term fix will require an
additional surgery. It will be minor and straightforward, but is
quite stressful to us in the context of Max being so unhappy today.
The most painful part for me is that Max is also now clearly
hungry. His gradual feeding through his G-tube starts in the
afternoon, but probably isn't enough to satisfy his stomach and does
nothing for his mouth. He waves his hands frantically around his
face, tries to put his fists into his mouth, and cries and cries. I'm
desperate to nurse him, but can do nothing. I promise him
repeatedly that as soon as he's ready, I'll be there.
Mon June 26, 2006
Today is a wonderfully restful day for Max. He sleeps pretty much all
morning (before we arrive), and then in our arms during the afternoon.
He needs only a dose or two of pain medication all day, so he seems to
really be on the mend (and/or worn out from all his fussing
yesterday!). He has only one seemingly-inconsolable crying fit in the
evening. Randy employs his usual strategy of trying to reason with
him: "Daddy's right here, Max. Max, look at me. Look at me, Max."
This time it actually works! Max has a strikingly cognitive moment
where he stops wailing, locks eyes with Randy, and is instantaneously
Max seems to be tolerating his initial gradual feeds (at 1 cc/hr) --
he's keeping everything down, and it appears to be coming out his
stoma at a good rate. (You want stuff to come out the stoma, but not
too quickly or it can be dehydrating.) The docs are considering
upping his feeding rate (to 2 cc/hr). They are also trying a couple
different "recipes," which contain different proportions of medium
chain fatty acids (which are relatively easy to digest and good for
nutrition) and long chain fatty acids (which are harder to digest, but
good for stimulating growth of the intestine). One of the fellows
gives Randy two thumbs up for asking informed questions about these
We feel like we're starting to adjust a bit to the local ups and downs
of this whole process -- though it's probably not coincidental that
we're feeling this following a really good day! Still, with time
we're feeling less numbness and devastation and more acceptance and
Wed June 28, 2006
Today is Max's 1-month birthday! He celebrates it by:
- Drinking mama's milk, by mouth!! It's just a taste and from the
bottle (so that the 5cc of its long chain fatty acids can be carefully
doled out). But it feels great.
- Upping his feeds to 3 cc/hr (after being upped to 2 cc/hr
yesterday). This is good progress.
- Preparing for his grand media debut! Max spends much of the
morning posing for a US News & World Report story on the nation's top
hospitals. It's tough work being that cute for that long, but
sleeping through most of it makes the work considerably less grueling.
- Sleeping in Grandma Anna's arms for several hours this afternoon.
- Adding a page of fun stuff to his website.
Thu June 29, 2006
Max had a small surgery (his 4th) to replace his broviac (heavy-duty
IV) line. He had kicked it out earlier in the week. The surgery was
much less disruptive than his earlier ones -- he recovered very
quickly, and is just on Tylenol for pain for a short period. He is
doing great, resuming his continuous feeds and his special 5cc's of
mama's milk every 6 hrs! Also had another special visit from Granna
on her birthday.
Fri June 30, 2006 (The Plan)
We have become increasingly optimistic about Max's prognosis, and would like
to share the basis for this optimism, so that it can hopefully spread! First,
here is the short-term (next several months) scenario:
Based on many many articles on long segment Hirschsprung's and short bowel
syndrome, the number one priority for maintaining overall health is avoiding
bacterial infection of the intestine, which is achieved by having good flow
through the system. The vast majority of cases that don't go well can be
attributed to things not flowing well. Max has already demonstrated good flow
quite robustly, so this is a major advantage for him. We are very happy that
the doctors brought out his stoma at 25cm, which allows his 20cm of
ganglionated intestine to move things through very well without being blocked
by a longer aganglionated segment afterward. This was "conservative" relative
to having a longer segment (e.g., 40cm), but this clearly reflects the
importance of flow.
The countervailing number two priority is to absorb as much nutrition as
possible from the intestine, because of the longer-term risks associated with
the effects of TPN (IV) nutrition on the liver. These risks are much more
gradual and can be managed in many ways by controlling the TPN brew, and they
also appear to diminish after the first year or so of life. Furthermore,
getting at least 20-30% of nutrition from the intestine provides a significant
protective effect on the liver. Max should be in very good shape given his
existing good health and the robustness of his functioning intestine.
So, the near-term prognosis looks quite good at this point. Furthermore, as
you can see from the pictures, Max himself continues to look and feel great.
Indeed, it is often very difficult to actually convince ourselves that he has
any kind of medical problem at all!
In terms of the more specific treatment plan, for the next 4-6 months
(minimum), Max's functioning intestine will be slowly and incrementally
challenged with increasing amounts of food, and in response should adapt in
amazing ways, getting larger in all dimensions (length, diameter, and
thickness), and becoming increasingly able to absorb different nutrients that
other parts of the intestine normally process. The new mantra is now "happy
intestine adaptation thoughts!" -- catchy.
Max will remain in the hospital for this time period, so that this process can
be carefully monitored and his diet adapted, etc. As soon as a space opens
up, we will move from the NICU to a longer-term care area down the hall. We
plan to set up his new home like our home would be -- lots of toys and fun
things for Max, laptops for us to allow more of a return to the (virtual) real
world when we're not holding and playing with Max (this is how we get most of
our work done anyway). We recently transitioned into driving from Boulder
rather than staying in a hotel by the hospital -- this is a tolerable ~35min
drive, and the comforts of home far outweigh this drive.
Once Max's system has stabilized, we will be able to take him home! We will
almost certainly need to give him his IV-based nutrition (TPN) and other
specialized dietary stuff, with the TPN likely being periodic (maybe every
night, maybe only a few nights a week, maybe more than that). His system will
continue to adapt and hopefully improve the amount of nutrition that he gets
from eating compared to the TPN. Thus, we will have to monitor him closely
and have regular checkups with the folks at Children's.
Depending on how much TPN dependence he still has after around 9mos to a year,
we may consider various surgical procedures to increase the length of
intestine available. This may be the Ziegler procedure (attaching roughly
15-20cm of his aganglionated intestine to his current 25cm (which will be
longer by then)) or various other more recent intestinal lengthening
After 1-2 years, and depending on how everything goes, we may look into
transplantation procedures, which have really been advancing dramatically in
the last 5 years. We will probably not want to rush into this, to allow
things to develop even further, but all depends on how Max is doing.
There are reasonable chances that he will be able to go off of TPN entirely,
and get rid of his stoma. But we are also becoming more and more comfortable
with the idea that he may need to be dependent on some level of TPN and/or
have a stoma for the rest of his life. He is such a happy, beautiful, and
bright baby boy who we can easily see making the most of life. We will
provide all of the love and support possible for this, and appreciate every
minute of it all the more. We know there will be many ups and downs in this
whole process -- right now things are definitely looking up so we are savoring
Tue July 4, 2006
Recent exciting events in Max's life:
Somewhat more disappointingly, Max's g-tube feeds were upped to 4
cc/hr yesterday, but had to be dropped back down to 3 cc today because
they were taxing his system too much. We know this will be a very
gradual and nonlinear process. But everything is getting through,
which should continue to promote adaptation of his intestine. Go
- Moved Friday from the intensity of the NICU to the longer-term care
area down the hall.
- Got to meet Grandpa Dick and Grandma Julia this weekend. Showed off
just how alert and happy (and of course, cute) he can be.
- Getting pretty good at drinking mama's milk! Some of his feedings
have been a bit clumsy, since he is really just (re)learning this
skill now. But he's starting to gulp them down, and to show signs
that he's anticipating them and soothed by them.
- Docs are looking into a new kind of IV nutrition made from omega-3
fatty acids instead of the standard omega-6 fatty acids -- this may
be much better for the liver, as per a
from yesterday that we flagged for the docs.
- Spending endless moments gazing lovingly into mama's eyes. The
power of these moments is undiminished by the fact that Max
occasionally bestows similar attention upon the giraffe stuffed
animal on the side of his swing...
- When Max cries now, we often find that we can comfort him in good
old-fashioned ways -- changing his diaper, holding him, feeding him.
Regular parenting stuff! We're also getting good practice w/the
non-regular parenting stuff (like changing stoma bags). Both the
regular and the non-regular feel very empowering for us. Keep in
mind how impressive the non-regular parenting is given that before
Max entered our lives, Randy couldn't even hear the words ``belly
button'' without turning a little green!
Wed July 5, 2006
Today is a good day for Max -- lots of happy alert time with us in the
late morning and early afternoon (during which he is ruthlessly
hogged by Randy!), followed by sleepy swing-time.
We've gotten the impression that some folks may be wondering whether
we are delusionally upbeat about Max's situation. We don't think so.
We definitely recognize that there are tough and uncertain times
ahead, and we grapple with all the emotions you might expect --
despair, anger, helplessness, longing, fear, etc. This doesn't come
across much in Max's page, in part because we tend not to write during
those times. But we also have the benefit of one of the best
antidotes for those feelings -- Max himself! We get so much pleasure
from holding him, kissing him, gazing at him, smelling him, soaking
him in, savoring him. He has opened up whole new reservoirs of love
in us, for him and for each other. And we have so many additional
sources of comfort that we are deeply grateful for:
Huge thanks from us for now, and we'll look forward to when Max can
thank you himself down the road!
- the incredible doctors and nurses here in Denver, as we've
mentioned many times.
- medical support via Max's extensive fan club! Chris Chatham (a grad
student in my lab) flagged the omega-3 press release we mentioned
yesterday. Heidi Feldman (professor of Child Development and
Pediatrics, also married to our graduate advisor) put us in touch with
a doctor who knows the STEP procedure, a promising new technique for
extending short gut. Dave Telander (a college housemate) and Susan
Goldin-Meadow (a colleague) set us up to consult with relevant family
members, who turned out to know Ziegler and his expertise in this
- your many, many uplifting messages. We have been truly awed by
the outpouring of love and support.
Fri-Sun July 7-9, 2006
Max is the cover baby for the US News & World
report website! The photo is fairly medically-oriented, but it
does capture how very happy Max has made us. Max also is the lead
2 paragraphs of their cover story on the web, on America's best
hospitals. The actual magazine (out next week) should include a
couple of photos. We hope those photos will better showcase what led
the photographer to ask, "How did you two end up with a baby this
Two other exciting developments: We get a couple of remarkably
effective tips on how to calm Max when he gets upset, which is usually
when things need to be done around his abdomen. It turns out that
just supporting his head in one hand, an inch or two above his crib,
is often all it takes to make everything ok. We also start to think
about longer term plans for providing the kind of environment we want
for Max to the extent possible while he's in the hospital -- our
contact person on this issue is Ayelet
Talmi, another DU PhD now working at the hospital, who will be a
great advocate for Max!
Mon July 10, 2006
The highlight of Max's day is meeting Corrie, his first cousin once
removed! (to the extent that Max experiences highlights while
sleeping...) The highlight of our entire hospital dining experience
to-date is enjoying a picked-fresh-from-the-garden salad and raspberry
pie from Corrie!
Otherwise the day is filled with ups and downs -- probably just the
usual bumps in our very long road. The day starts with a care
conference of Max's entire team: surgeons, nurses, neonatologist, GI
specialist, and developmental specialist. The down side is that they
naturally focus on areas of concern for Max, which can feel
overwhelming for us. The up side is that these concerns are being
directly addressed by this expert team:
- Max had a fever starting Saturday morning; test results suggest a
bacterial infection rather than a virus. He was immediately put on
antibiotics, and his temperature returns to normal today. Various
tests indicate that everything looks fine in potential places of
concern (liver, kidney, functioning intestine, IV line).
- Max's iron levels are low, a common situation for kids with short
gut because they have difficulty absorbing iron enterically (and you
don't want to give iron through the IV, because that can promote
bacterial growth). He receives a blood transfusion this afternoon.
He does great with this procedure, which will be very useful while we
wait for his gut to adapt over the coming months.
- We're told that Max is unlikely to be able to drink my milk, and
that it may make sense for me to stop pumping. Although he was
getting really good at gulping it down last week, my milk was taxing
his digestive system, which has been much more stable since he stopped
drinking it last Wednesday. The medical team is addressing all of
Max's related health issues (e.g., nutrition through his IV and
g-tube, oral stimulation through small formula feedings). He will be
fine. They are even helping me with my issues. Lizz (yep, Lizz --
like Buzz), the nurse practitioner, encourages me to recognize that
there may be a grieving process associated with stopping pumping and
not being able to nurse Max. It is a tremendous relief to hear this,
since I had been grieving already, and could not fathom the suggestion
that I should be relieved and eager to stop pumping (though I could
imagine having this exact same thought prior to Max!). Nurse Tina
constructively suggests thinking of this step in terms of putting
my energies elsewhere for Max. I'll be stronger for thwarting future
Max-hogging attempts by Randy!
Tue July 11, 2006
Max's fever is back. A number of tests are run to try to determine
the site of infection. His central blood test (easily obtained via
his broviac) is still negative. Another easy sample is the output
from the top of his distal intestine. While we're waiting for those
results, Max undergoes a couple more difficult tests -- a peripheral
blood test (requiring needle pricks) and a urine test (requiring
catheterization). I hold Max's head and free hand while he is poked
for the blood test. His soulful eyes plead with me to do something,
and he screams as the nurses struggle to get a sufficient sample. The
needle pops out, so they must try again. They give him a tight
swaddle, I lock eyes with Max and talk with him about what a very
brave boy he is, and the nurses get a good sample from the other hand
without much further difficulty. Max is soon resting peacefully in my
arms. I am bracing for the urine test, but it turns out that Max
practically sleeps through it -- even as cold water and blown air are
applied to encourage more production! Good boy!
The infection appears to be in Max's distal (unused) intestine. We
need to wait for results to determine what kind of infection it is,
but in the meantime, he is receiving a broad spectrum of antibiotics
to treat it.
Wed July 12, 2006
Max is still fighting something, as indicated by his continuing fever
(which is being controlled with Tylenol) and rising white blood cell
count. It's just not clear exactly what. A CT scan reveals diffuse
swelling in his distal small intestine, indicative of bacterial
growth. This is scary at many levels -- it is taxing on his liver, it
is difficult to access because there is so much nonfunctional
intestine that nothing can be flushed through the system to try to
treat it directly, and it may spread to other parts of his system. I
break down, and the thoughts that I have not been allowing myself to
think come flooding through.
Reason eventually sets in. This infection may be treatable with the
systemic antibiotics that Max has been receiving. The output from the
top of his distal intestine has not shown bacterial growth yet, which
may indicate that his system is successfully killing the bacteria by
the time they reach that point. His proximal (functional) intestine
continues to flow well, which is important for avoiding bacterial
infection and supporting adaptation for nutrient absorption. All
tests to-date indicate that the infection has not spread elsewhere.
Our docs are coordinating with Children's Hospital Boston (where
Ziegler used to be) about their omega-3 IV nutrition that may be
better for the liver. And, even in the worst case scenarios, there
are further treatment options. Meanwhile, Max continues to seem very
strong and healthy, and able to fight off this infection!
I know you are all eager to meet Max, but we'll need to hold off on
visitors until he's through this, and as Randy and I continue to work
through how to share this sweet little man! After just a day away,
Randy can't believe how much older Max seems. And how strongly bonded
to mama. Max stares and stares at me, unphased by Randy's attempts to
distract him with funny faces and noises. Randy speculates that it is
only the dark contrast of my glasses that holds Max's attention. So
we put my glasses on Randy. Randy later speculates that I must have
just been better positioned for Max to stare at -- we'll test this
Thu July 13, 2006
Max is the man! All of his numbers are looking better this morning --
white blood cell count, C-reactive protein, etc. Very gradual
improvements, but all good signs that he may be on the road to
recovery from his infection. The antibiotics are slowing Max's
digestive system (an anticipated side effect), so his feeding is
reduced to 1 cc/hr for now. His temperature is fine all day, without
any Tylenol. And he is
happy. The nurses encourage us to try to move him toward more
of a sleep-at-night schedule, so after rousing him, we spend much of
the morning talking, playing, and dancing with him. He shows small
hints of smiles (or gas?), but nothing to demonstrate a full
appreciation of the spectacle of his parents dancing. In the
afternoon, Max delights in a vigorous shampoo. His hair has seemed to
be quite the blend -- black (from me) and greasy (not from me) -- but
it has been getting lighter and now shows distinctive brown
highlights. It is a luxury for us to take in mundane details like
Today is a good day for replenishing our strength, in terms of both
Max's progress and our time with him, and our own nourishment. We
take comfort in chicken soup from friends here, and feast on a gourmet
spread sent by friends in Madison!
Fri July 14, 2006
Max's numbers continue to improve and his temperature continues to be
fine! His digestive system is still very slugglish from the
antibiotics though, so his feeds are stopped -- to be resumed once
he's done with the antibiotics. He is still getting nutrition from
his IV and oral stimulation from his pacifier. And we should be able
to start putting dabs of breast milk on the pacifier for him soon,
which may help to soothe him and to sustain us. (I have gallons of
frozen supply, and have slowed my pumping frenzy but haven't yet
finalized any decisions about stopping.) Max is quite happy sleeping
in our arms for much of the day. We figure we can work on the
sleep-at-night routine more diligently when he has fully recovered
from this bug.
I get a voice mail from my OB's office in the afternoon, reminding me
about my regular postpartum checkup on Monday and encouraging me to
feel free to bring my baby boy. This hits hard. Erica, a nearby mom
in our longer-term care unit (and former next-door neighbor in the
NICU), warns from experience that the checkup itself will be hard too,
with everyone asking where my baby is.
As always, Max is the best cure for any associated worries. And for
this situation, he goes all out. As I'm holding him at the end of the
day, he looks up at me and gives a couple of quick smiles that seem
quite genuine -- his very first!! Turns out he's only warming up. He
moves on to a big broad beaming grin, holding my gaze all the while.
I melt. Randy is so enamored with the first quick smiles and his
photo attempts of them that he misses Max's broad grin. We receive
reassurances that Max will smile again.
Speaking of how cute Max is, he showed up as a centerfold in this
week's hard copy of US News & World Report, in a foldout page as part
of their opening story. It includes the same
photo that was on their web site, and another photo of the surgeon
checking Max out. Neither photo shows how cute he is though -- we
agree with our friend Jan that this would have been just too
distracting from their story line!
Sat/Sun July 15-16, 2006
Max starts to realize that he can completely control everyone around
him with just a simple twitch of his zygomaticus. He doles out smiles
for Randy and me, for the nurses, and for our friend Michael visiting
from Tucson. I'm relieved that Max seems to have worked through any
confusion associated with me crying in response to his first smile --
to which he had responded by frowning, hiccupping, and going to
Mon July 17, 2006
Today is an incredibly dull day with Max. All of his numbers look
great, no unexpected medical issues come up for discussion (unlike
every other day, where we've been constantly kept guessing by even
minor developments that are quickly resolved), and after a few smiles
for everyone, Max spends most of the day sleeping in our arms.
Boring, boring, wonderfully deliriously boring!
My postpartum checkup goes much more smoothly than expected -- it
turns out that everyone we talk with at the doctor's office is reading
Max's page and rooting for him! So we get lots of support instead of
the painful questions we feared.
Tue July 18, 2006
Max is 7 weeks, 2 days old. For the first time in his life, he can be
held in my arms to go for an untethered stroll. (We strolled at Good
Samaritan, where Max was born, but they required all newborns to be
placed in rolling carts for that.) Now Max is stable enough to take a
half hour break from his IV nutrition. For the moment, he's free! He
cries briefly as we leave the familiar confines of the longer-term
care unit, then settles into an apparent state of wonder as he takes
in the new sensations up and down the corridors. (We postpone going
outside until at least tomorrow, so that Randy can be part of this
celebration -- Tuesdays have become his work-at-school day.) As we
stroll, I try to encourage Max to look not just at me, but it's a
halfhearted attempt -- his quizzical "Mom, what's happening?" look is
too endearing. He finishes his contemplations after about 10 minutes,
then dozes off for the remainder of the field trip. A simple stroll,
a joyous event.
Thu July 20, 2006
Today is Daddy's special day alone with Max, while Yuko goes to work at school
(and has a good day with her lab). This was a perfect day, after a
particularly cranky and sleepless night (for Max), which caused me
considerable trepidation on the drive in. When I got there, Max was just
stirring -- I picked him up and he relaxed in my arms, and we had a great,
long nap. I put him in his bed for more rest (and got a little bit of
programming done on the laptop), and then he woke up and we had a really nice
conversation about all kinds of things, for about 20 minutes. Max expressed
two heartfelt grunt/squeaks, and lots of very expressive smiles and other
interesting mouth shapes. Then, we went for our 30min walk through the
hospital! I couldn't wait to take him down to this big Rube Goldberg
contraption on the first floor, with balls going through all kinds of hoops
and levers and jumps. He was unfortunately a bit groggy and only expressed
the faintest of interest in this. Maybe later. Then, we went up to the 5th
and 6th floors, to look for purported mountain views. We didn't find them,
but Max woke up a bit, and really enjoyed sitting on a window sill in the sun,
staring at the traffic and people below, and gazing off at St. Joe's in the
distance (he didn't seem to remember being there, or at least didn't let on to
it..). On the way back, Max stared with great interest and intensity at a
series of paintings -- each time we went to the next one he seemed somewhat
startled, but then became equally absorbed again. He was pretty wiped out for
the rest of the day, and slept soundly!
Fri July 21, 2006
Max goes outside today! For us, this event is much more relaxing than
our previous adventures with Max in the outside world (traveling from
Good Sam to St. Joe's, and from St. Joe's to Children's). For Max,
it's all equally relaxing, so he takes his usual nap. We do catch him
sneaking a few peeks at the sky, trees, and flowers.
For some reason, Randy and I are both feeling impatient today.
(Usually we are out of sync, so one of us can reassure the other.)
Although we understand in the abstract that this process will be very
slow, we find ourselves wondering why it's taking so long! My former
student, Meg Ryan (yep, Meg Ryan), suggested that Max is just waiting
until we can move back into our house after our remodel is done --
originally scheduled for July 1, then Aug 1, then ?? A lot of waiting
on all fronts, but what an amazing homecoming it will be.
Sat/Sun July 22-23, 2006
Randy and I have been inexplicably terrified of one aspect of Max's
care -- cleaning around his g-tube, where he has been extremely
sensitive. While we've become pretty comfortable with treating Max's
stoma (even discussing details of its output over breakfast!), we've
left the g-tube to the nurses. Finally, over a month after it was
inserted, I declare that I'll give it a try. Randy's jaw hangs open
in disbelief. I get started, but after a few seconds, Randy is
saying, "No, no -- not like that, like this!" and jumping in to do it
better. This reminds me that soon after Max's diagnosis back at
St. Joe's, Nurse Barb reassured us that we would become experts at
these foreign medical procedures. This seemed inconceivable then, but
after just starting to tackle the g-tube, we come away feeling like we
can learn whatever it takes to become masters of Max's care.
Max gets a very special visit from Boulder great aunts Carse and
Paula, and first cousin once removed Morgan. He emerges from
hibernation for the event, spending most of Sunday in a content, alert
state! Paula is the first to declare Max the cutest baby she's ever
seen. He rewards her with his focused attention. Carse asks him what
he's storing in his cheeks, and Morgan credits Randy for Max's
protruding forehead. Max is unphased, and happily gets passed around
for everyone to love.
In small world news: The neonatologist, Patti Thureen, comes in for
Max's regular checkup (all looks good), and we discover that we are
related! Academically, that is. We collaborated on a grant proposal
submitted last month, on perinatal dietary supplementation as a
prevention strategy for schizophrenia. I would test infant cognitive
outcomes, and she would supervise any dietary safety issues. We had
never met because the grant team is so large, and it is coordinated
primarily through the Principal Investigator, Randy Ross. Now we're
meeting thanks to Max. Go figure.
Tue July 25, 2006
One of the twins in the unit next to Max goes home today. I jealously
ponder how easy their lives seem in comparison. Then I hear that they
used to be triplets. It seems there's always more to the story than
one might think. That's certainly the case with Max. He looks so
healthy and strong, strangers always ooh and ahh over him on our walks
-- having no idea how fleeting these moments of normalcy are for us.
Lizz, the nurse practioner, is calling a care conference of Max's team
for next week, to discuss ways of treating his distal intestine
directly with antibiotics, to prevent future infections. She also
wants to discuss transplant and further surgery options. I'm thrown
by this, because we had thought these options would not be relevant
for some time -- and as far as we understand, this is still the case.
We're trying to expect the unexpected, but I'm starting to wonder
whether this is really possible.
We continue to take great comfort in food, including delicious quiche
and banana bread from our Sunday visitors!
Wed July 26, 2006
Today is a beautiful day for Max. He is alert and happy for most of 2
am -- 3 pm! This gives him wonderful opportunities to stare at his
mesmerizing new Symphony-in-Motion
mobile, to meet our colleague Eliana Colunga and her husband
Gustavo, to wave his arms and kick his legs at his mobile, to welcome
Grandma Anna (Nana) for her second visit to town, and to coo at his
mobile. Max has been gradually transitioning from his backward
day-night schedule, and at the same time seeming to get much happier.
The nurses used to describe bouts of extreme fussiness in their
informal reports to us (particularly about Max's nights). Now they
more frequently mention how smiley (and flirty!) he's become.
Fri July 28, 2006
We learn more about the transplant issue from Max's GI team today.
There are some indications (e.g., bilirubin and enzyme levels) that
Max's liver is being taxed -- a risk associated with IV nutrition and
lack of nutrition from the gut. This may have been exacerbated by his
infection and may resolve as he continues to recover from it -- we'll
get a better sense of this next week. Regardless, Max's team is
aggressively pursuing different options for him. One is to coordinate
with transplant experts, likely the ones based in Pittsburgh. We may
take a trip out there in a few weeks for Max to be evaluated, both to
get the experts' input and to get Max into the transplant system just
in case. This is much earlier than we had expected to be thinking
about transplants, but this is just one of many possible scenarios
that Max's team is considering. As usual, we will gradually learn
more, and very much appreciate being in such good hands -- with Max's
team actively coordinating and working through options, and with
transplant experts in Pittsburgh, a place we love to visit from our
grad school days!
Meanwhile, today is Max's 2-month birthday! He doesn't pose for a
national publication this time around, but Nurse Maryanne repeatedly
calls him an Anne Geddes baby. He celebrates today by:
- Enjoying his first full day off of his antibiotics course, and in
his own room at Children's! (He moved yesterday from the more
standard unit -- an open area with curtains). We'll get kicked out if
someone who actually needs this room arrives -- it is under negative
pressure, and so is typically used for kids who need to be kept
isolated (not Max). But we'll enjoy it for now.
- Being held untethered for the first time by Nana!
- Being alert and happy all day long, after throwing Randy a
particularly cranky day yesterday. Max even remains wide-eyed while
lying on his sleeping Daddy, as if he is just humoring him.
- Sucking at empty breast! (right after I pump). This has nothing
to do with feeding, since Max doesn't actually get milk, and there is
no indication that he'll be ready for it in the future. But it has
everything to do with bonding. I'm particularly thrilled after a very
rough start this morning, where Max and I were coached on our initial
attempts by no fewer than 3 people (one of whom was actually an
- Doing a good job w/his feeds, which have increased from .5 to 1
to 1.5 cc/hr over the last week.
- Being whisked off for his daily stroll by our
Banich, after being introduced and dumped into her arms in the
same breath, so that Randy and I can attend the meeting with the GI
Sat/Sun July 29-30, 2006
Max continues his ``empty nursing'' over the weekend. He gets
completely blissed out during these sessions, as do I. This takes us
all back to our halcyon days at Good Sam, where Max was born and
nursed for 2.5 days. In honor of this, I finally update Max's page
with details of what transpired on his birthday!
Tue Aug 1, 2006
Max's bilirubin levels (drawn once per week) were slightly worse
yesterday -- the neonatologist characterizes them as about the same.
Max's care conference is scheduled for tomorrow afternoon. Topics for
So, lots of uncertainties to be resolved, probably very gradually.
- When will we go to Pittsburgh for the 5-day transplant evaluation?
This could be as early as next Monday, because their team and
medical transport should be available then.
- What can we expect if Max does get a transplant? On average, a 4-6
month waiting period (which we can probably spend in CO), then a 4-6
month recovery and monitoring period (in Pittsburgh).
- What else is on the table? Pittsburgh wants Max's distal bowel
removed before the transplant, to reduce risks of further infection
and taxing of the liver in the meantime. We will get more
information on this possibility, and on other surgical and
In the meantime, Max is a little tired/cranky today, but gets cheered
by a visit from his Evergreen great aunt Jeanie -- who even manages to
soothe Max to sleep in the middle of a bag change procedure! I'm a
little tired/hungry today, but am nourished by Jeanie's company -- not
to mention the homemade feast she brings for today and beyond!
We may not post updates as reliably this week, while we're moving back
to our "done-enough" house. And we will eventually send thanks for
all the wonderful gifts we've received -- from the morbidly
entertaining primer for parents ("the notorious early Shel Silverstein
classic you won't want your children to read"), from a CU colleague, to
the sweet multicolored hand-knit hat from a woman in Philadelphia who
we've never met.
Wed Aug 2, 2006
It looks like we'll go for the 5-day evaluation in Pittsburgh next
week. In a Learjet! This boy does things in style. Max's docs
clearly state in the care conference that they are just being very
proactive in exploring multiple options, which we really appreciate.
When we return to Denver, they will continue to pursue non-transplant
Why do we need to go to Pittsburgh? They are transplant experts,
handling ~50% of the country's transplants and training many of the
staff now at other top transplant hospitals. Being on-site will allow
Max's transplant team to closely monitor his status and confer about
it. They will test Max's eligibility for a transplant (e.g.,
recipients must be cancer-free to take the immunosuppressants required
with transplants), and assess other strategies. (We learn in the care
conference that removal of the distal bowel is just one of many
possibilities the Pittsburgh team wants to consider, not the definite
request we had understood it to be initially.) Another explicit
purpose of the trip is for us to get educated on the whole transplant
We're preparing Max for Pittsburgh with stories of how mama and dada
met and spent many wonderful years there -- often referred to as the
Camelot years, by our roller-hockey, rock-climbing, hackey-sacking,
sailing buddies from that era. Max gives the hugest, longest smile
yet in response to my story about how dada (as a first year graduate
student) took mama (as a prospective student) out for a "recruitment"
lunch -- to a lovely establishment near CMU known for serving buckets
of fries! And then made her pay for it. Randy tries to tell
similarly incriminating stories about mama. Max listens politely, but
doesn't find them nearly as compelling.
Thu Aug 3, 2006
Turns out "next Monday" means Aug 7 to the Denver team (and to us!),
but Aug 14 to the Pittsburgh team. We'll go to Pittsburgh Aug 14.
This will give Max lots of time "this" week with baba (Grandma
Munakata) and jiji (Grandpa Munakata)!
Fri Aug 4, 2006
Max gets to meet for the first time Maya (his second cousin) and Yves
(his first cousin-in-law once removed), and to see for the second time
Corrie (his first cousin once
removed) and Jeanie (his great
aunt). (We'll put up a family tree one of these days!) Max has been
growing ever more curious about people around him -- making him ever
more popular with the nurses -- and he gazes intently taking everyone
Randy and I are back in our house. It feels great, even amid the din
and the dust and the steady stream of contractors. We tell Max all
about the home that awaits him.
Sat/Sun Aug 5-6, 2006
Max's stoma output has been on the high side for a couple days -- he
and I take a break from empty nursing so the situation can be
assessed. Max takes it in stride, turning his attention to the
important matter of meeting jiji and baba. He demonstrates for baba
how he steals hearts with a simple smile. And he upholds jiji's
reputation as a guy babies like to stare at.
Max gets his third full-dunk bath of the week. Randy and I were
initially quite nervous about giving these, because of all the wires
and tubes to coordinate. But it turns out to be easy enough to plop
Max into the tub and watch him luxuriate in it! Hopefully a good life
lesson in there somewhere...
Tue Aug 8, 2006
Max's bilirubin levels were slightly better yesterday! They would
probably be characterized as "about the same" again, but everyone is
excited to see his liver numbers going in the right direction.
His stoma output continues to be mysteriously high though -- he is
outputing much more than he is taking in, indicating that he is
probably not absorbing anything from his feedings. One theory was
that his increased output was tied to a change in his stomach acid
medications, but these have since been changed back with no effect.
Another possibility is an infection, but Max has no fever. He does
have an elevated white blood cell count, which could suggest that he
is fighting something, but this is also a known side effect of one of
His feeds have been gradually reduced, from 2.5 to 1cc/hr, while his
output levels are monitored. We're warned that he may ultimately need
to go "NPO" -- or non per oral (no intake by mouth) -- as part of this
process. We really don't want this to happen, since this has made Max
miserable in the past. He clearly gets so much comfort from anything
in the mouth -- whether tastes of breast milk, his tiny rations of
formula, or any of his (sweetened) medicines. I try to savor what may
be one of our last empty nursings for a while. Unfortunately, the GI
team comes in to assess Max right in the middle of it. I'm thrown,
but Max continues to bliss out as usual, despite the interruption.
He's my role model.
In addition to further spoiling from baba and jiji, Max gets a visit
from one of his oldest friends, Nurse Practitioner Kristin Neumann
from St. Joe's. (She knew him even before he was a cover
boy/centerfold...) She can't get over how he -- and his cheeks! --
have grown. And we can't believe how many lifetimes ago our 3 weeks
at St. Joe's seem.
Wed Aug 9, 2006
The bad news is that Max seems to have an infection, his second. The
good news is that he seems to be doing a great job fighting it
himself, he starts an antibiotics dose tonight to help him out just in
case, and we now have a pretty good sense of the signs Max shows early
in infection, which should help for quickly detecting and treating any
future ones. The main sign is unusually high stoma output (which
began last Friday, but was initially misattributed to changes in his
medication). If this should happen again, we'll likely try to go
straight for the CRP (C-reactive protein) test, which measures
inflammation as an indicator of infection. Even before the
antibiotics, Max's output and white blood cell count were on the
decline, which may suggest that he was successfully fighting the
infection. He also managed this without developing a fever. The
antibiotics will just make sure to finish the job, and help protect
If any of this is making Max feel unwell, he sure doesn't show it. He
seems to be getting not only cuter by the day, but also more clever!
And learning to combine the two. Randy and I each could swear that
Max is doling out his primo cuteness strategically today, to get the
attention, treat tastes, and cuddling he desires. We reward his
Thu Aug 10, 2006
You never know what little thing might set you off. On my way to
school, I stop at our old apartment for a final check for any
forgotten items (only a shower caddy). I'm totally unprepared for the
sorrow that washes over me as I walk through the empty space. This is
where my water broke, where Randy and I began fully anticipating Max's
arrival, where we planned to start our lives with him. This place
provided an important buffer between the lives we envisioned and our
reality. I'd like to think I could just deposit my pain here, in the
same way we often want to bottle our mental states when we feel super
strong, accepting, and ready for anything -- saving them for when we
need them later.
Sat Aug 12, 2006
Max's infection seems to be under control -- he never developed a
fever, his stoma output is reasonable, and he is clearing stuff out
the top of his distal intestine like he did last time. So, we're
headed to the 'burgh in the wee hours Monday morning! We'll stay at a
hotel near the hospital for this trip, but so appreciate the many
generous offers of housing and other support from friends there -- a
couple of whom were even willing to make their offers non-contingent
on getting to meet Max! Crazy.
Today, we meet the 17-year-old girl with Hirschsprung's who lives just
15 mins from us. She is slender, but you would never guess her
condition, just as Dr. Ziegler had said. She rides horses and wants
to be a screenwriter. She has friends. She seems strikingly together
and accepting of her condition. In fact, with her recent transplant
(just 8 weeks ago), she opted to replace her small intestine only, so
that she can eat food and absorb nutrients but still has a stoma --
these surgeries are apparently much safer than transplants involving
the large intestine. Randy and I are surprised to learn that Max
could still have a stoma even if he does receive a transplant. But
she provides all the perspective we could ask for -- she's had a stoma
all her life, is completely comfortable with it, and has no problems
waiting for medical technology to advance to the point where she'd
consider a large intestine transplant.
Max continues to grow increasingly cognitive and social. He
completely lights up when he sees baba and jiji, even if he doesn't
fully understand our grateful descriptions of the plentiful,
delicious, healthy, comforting dishes we've been enjoying from baba
all week long!
Mon Aug 14, 2006
We make it to Pittsburgh! Many jumpsuits are involved. After much conferring
and prep by Max's Denver team and transport team, beginning at 2:30 am, we
then breeze through just a few minutes for boarding and taking off in the
Learjet. Max is definitely a rock star! He sleeps soundly for almost the
entire flight, waking just to clear his ears (via cries and yawns) during
It's always hard transitioning to a new place, where people don't know Max.
When we come back to his room after an xray and ultrasound, a "clear lunch"
tray has been left for him: soup, jello, and ginger ale. We relish the idea
of Max wanting to hear this story over and over again in a few years. ("But I
was just a BAby!") I end up calling nurse practitioner Lizz back in Denver
for reassurance on a couple things (delays in Max's IV nutrition and
antibiotics), which she thankfully provides.
Max settles into his new digs pretty well, expertly finding his rhythms with
his old routines (a bath, empty nursing) and adapting very good-naturedly to
new procedures (like the ultrasound -- the technician marvels at how easy Max
is, as he happily coos and smiles at his new mobile throughout the procedure,
which serves to plot out his blood supply for consideration for surgery). But
it ends up being a pretty disorienting day for Randy and me. The main folks
who would help us get oriented are apparently the PAs (physicians'
assistants), and they aren't around today for some reason. Most everyone else
is consumed by a major tranplant operation -- a very abstract concept that we
can't quite grasp the reality of yet. And we're going on just a couple hours
sleep. Tomorrow should be better.
Tue Aug 15, 2006
Today is not better, at least at the start. We wake @4:30 MST to try
to be there for Max when he needs us. But after learning we've just
missed the hotel shuttle and then waiting for a cab that never shows,
we arrive at Max's room to find that he has already been taken for
upper GI xrays. When we find him, he's crying up a storm. This
constricts the pyloric valve from his stomach to his small intestine,
preventing movement of the contrast agent and prolonging the test.
Only one parent is allowed in the room, so I end up listening to his
cries through the door. I knock on it periodically and call out to
see if I can switch with Randy, but no one responds.
One of the techs eventually opens the door so Randy and I can switch
places. The room is loud, not just with Max's cries, but with the din
of equipment, and I quickly understand that no one could hear my
calling from the other side. I rush over to comfort Max, but he's
enclosed and suspended in a clamp device, and I can see only the top
of his head. I have to ask the tech how I can even comfort him, and
am instructed to hold his head and hands (which are clamped up by his
head), and to talk with him. It is a horribly helpless feeling having
access to only a few inches of Max, but he makes me feel magical --
calming instantly to my voice and touch, and remaining mellow for most
of the remainder of the lengthy procedure.
The afternoon goes much better. Max takes very well-deserved naps on
each of us, and wakes in a delightful mood that lasts the rest of the
day. He smiles and flirts shamelessly with the endless stream of
people who comes to evaluate him -- nurses, occupational therapist,
physical therapist, IV team, case manager, etc.! We'd like to think
that his heart is still true to Nurse Becky back in Denver. And
Nurse Heather. Michelle too...
Max's tests seem to be going well. No red flags have come up so far
across his numerous monitorings, ultrasounds, and X-rays. The
cardiac doc makes us feel wonderfully healthy -- asking about all
kinds of potential issues in Max and in our histories, none of which
apply. The OT is amazed by how completely normal Max's oral motor
skills are. He shows off how he can happily drink from a bottle and
suck his pacifier. (He doesn't get to show off how well he can nurse
-- that would be the lactation specialist's evaluation). The OT says
she has never seen such abilities in a baby with serious gut issues.
She had assumed she would be recommending some kind of therapy for
oral aversion and coordination problems -- just a question of how much
and what kind. But Max doesn't need any. We're so grateful that he
has been bottle feeding and empty nursing, at Denver's strong
encouragement. These behaviors had been discouraged back in the days
when the Boulder 17-year-old with Hirschsprungs was a baby.
Just as the day seems to be winding down, we get two last bits of
excitement. The first is that Max's broviac -- the source of the vast
majority of his nutrition, fluids, and meds -- stops working. Part of
the inner catheter has shattered and needs to be replaced. The IV
nurse struggles to thread the tiny tubing, but then Dr. Ed Barksdale walks
in to meet Max. He is a trainee of Morrie Ziegler back in Denver, and
has a similarly calm and wise manner about him. Everyone seems to
breathe a sigh of relief when he arrives, and Max's tubing is fixed
The second excitement is Max's first Pittsburgh visitors!: Ken
Koedinger (one of our best buddies from grad school days) and Anna
Fisher (who we are meeting for the first time, but who knows all about
Max and our recent lives via the blog). Max initially gives them the
cold shoulder, when he hears that Ken is not up-to-date on the blog.
But he soon decides that they are worthy of charming -- he shares his
smiles and attention, and soaks in the oohs and ahhs.
Wed Aug 16, 2006
Today's big event is a liver biopsy. A quick procedure, but Max can't
eat anything until it's over, and it keeps getting pushed back later
in the day. He doesn't fuss from hunger though, enjoying a sleepy
morning and an awake, relaxed afternoon. The biopsy finally happens
at the end of the day -- results back tomorrow.
Still sedated after the biopsy, Max sleeps through a visit from our
Camelot-era friends, John and
Barb Pane, and their son Lorenzo. At dinner, Lorenzo sings several
songs for us to sing to Max later. He suggests that Max will sing
these songs himself one day ("maybe when he's 4, like me"). A
Thu Aug 17, 2006
Once again, Max can't eat anything until after a procedure that keeps
getting pushed back -- this time it's a surgery to replace his broviac
line. Although the inner catheter was fixed a couple days ago, the
broviac later got dislodged from its insertion point at his skin, and
needs to be redone. This is the same surgery Max had when he was ~1
month old, and should be simple.
Like the Denver team, the docs here repeatedly emphasize that medicine
is an art, not a science -- a continual weighting of probabilities,
rather than black and white answers. We see this point across the
many different opinions we encounter on matters big and small. On
just the broviac: The surgeons here prefer broviacs in the chest (to
reduce chances of contamination from bodily fluids), but they will
replace Max's broviac in its current position in his thigh (the
location preferred by the Denver surgeon, to reduce chances of Max
grabbing and yanking it out). The Denver nurses dress broviacs with a
clear sticky covering (tegaderm) placed over the tubing just below the
point of insertion, with a bandaid over the insertion site, to allow
this area to breathe. The Pittsburgh nurses cover the insertion site
with tegaderm. Randy and I are so accustomed to the Denver method
that we literally gasp the first time we see the Pittsburgh method.
The nurse explains that the tegaderm breathes and keeps everything
sterile, while the darkness of the bandaid might allow bacterial
growth. The Pittsburgh nurses gasp back at us when they hear that
we've been giving Max full-dunk baths -- strictly forbidden at
Pittsburgh, to prevent contamination of his broviac. But then
a couple of the Pittsburgh surgeons says baths should be fine...
Other gray areas: Most of the Pittsburgh team favors feeding Max more
breast milk (to stimulate adaptation and confer immunological
benefits), while the Denver team and Dr. Barksdale favor formula (to
maximize the nutrition Max absorbs through the gut). The hopefully
happy compromise is to give half and half in his continuous g-tube
feeds (which had been entirely formula -- fiber will also be added to
slow transit time and increase absorption), switch his occasional
bottle feedings from formula to breast milk, and continue with the
empty nursings (which are never truly empty). Perhaps the most
dramatic gray is in whether to remove Max's distal bowel. Most of the
Pittsburgh team says no, to maintain the size of Max's abdominal
cavity to support an eventual transplant. Dr. Barksdale says yes, to
reduce the risk of infection in this vulnerable organ. Everyone
agrees on the pros and cons -- it's just a question of weightings.
The resolution seems to be to keep an eye on things for now. Max's
infections have been caught very early using systemic antibiotics,
without sepsis (spreading to the blood). Should that ever occur, it
would shift the weighting toward removing the distal bowel.
Max is finally called for his broviac surgery at day's end. We learn
from the surgeon, Kyle Soltys, that yesterday's liver biopsy looked
good -- better than what they expected based on Max's bilirubin and
other tests! This buys us more time before a transplant would be
needed. We run into friends Ken
and Anna on our way to the pre-op area. Their presence nicely
prevents my usual pre-op meltdown, and satisfies Max's usual pre-op
desire to socialize.
Max's schedule is always unpredictable. Our sailing friends, Anne Fay
and Guy Blelloch, meet up with us in the surgery waiting area and set
the record for the longest wait time to meet him -- ~3 hours! Our
reminiscences of rum punch days island-hopping in the Caribbean serve
as pretty good distraction when the estimated 20 minutes for Max's
simple surgery comes and goes. An hour and a half in, we get a call
saying that the surgeon is having trouble finding a good route for the
catheter -- he wants to go further from the groin than the original
route. Forty-five minutes later, we get the call that Max is ready.
His face is bright red (a common reaction to the anesthesia), and he
is crying unconsolably -- a hoarse cry after being intubated for the
procedure. He eventually calms with some pain medication, which
apparently is not given until kids demonstrate that they need it. Our
friends come in for a quick peek at him, finally tucked in and cozy.
Randy and I decide to stay overnight at the hospital to keep an eye on
his pain. I fall asleep listening to Max contentedly sucking his
pacifier. Another deeply appreciated, simple pleasure.
Fri Aug 18, 2006
Randy gets up a few times to soothe Max, but overall it's a smooth
night and Max wakes up happy. After giving up on Pittsburgh cabs, we
discover that the walk to and from our hotel (for checkout) is quite
Our trip ends the way it was supposed to start, meeting with Bev, the
transplant coordinator. (She was too busy earlier, catching up after
the camp they run here for kids with transplants.) She starts off by
saying that her ideal transplant parents are in their 30s, have been
together a long time, communicate very openly, and can find ways to
laugh in the face of stress. We feel like we pass.
Bev gives a 2.5 hour presentation, filled with details about
transplant and post-op processes, scary statistics and relevant
reassurances, and uplifting anecdotes and photos. The post-op process
is extensive, with constant monitoring and adjustment of
immunosuppressants to control the body's rejection of the transplanted
organ, without rendering the body too vulnerable to infection (click here for details from Randy). This
process is definitely a marathon, not a sprint. Scary stats include
the fact that 40% of children on the transplant list died waiting for
the organ(s) they needed, and for children who receive transplants,
survival rates drop noticeably each year post-transplant.
Reassurances: Dying while waiting was driven in part by people
historically joining the list relatively late in the course of their
illnesses, and having only a small window when they could be
transplanted. This is changing, and Max will join the list quite
early (next week -- we'll know more about his status on the list when
this happens). Still, everything clearly depends on parents being
willing to donate organs when children die, as well as doctors knowing
that intestines can be transplanted -- such awareness is apparently
not universal, since these surgeries are new. The drop-off in
survival rate reflects the fact that better techniques are always
being developed, particularly for immunosuppressants. People with
more time post-transplant were operated on using earlier techniques.
Success rates with today's techniques are much better. Bev shows many
photos of happy, healthy kids from their transplant camp. We
recognize one of them as Max's roommate from earlier in the week! He
is 11, and had his transplant 10 years ago. In those very early days
of these surgeries, he was the only child out of 7 on the list to
survive, which he told us he finds "kind of weird."
Bev's presentation is as draining as it is informative. We don't get
many opportunities to demonstrate our abilities to laugh in the face
of stress. We do get answers to all of our questions for the
Overall, we feel energized and empowered by our time in Pittsburgh.
Max has amazing teams of people looking after him. Treatments have
come a long way in a relatively short time, and Max is doing well.
Many discussions have focused on what it will take to get him home
while he awaits a transplant. This is the most wonderful thing we can
imagine. One step is to reduce his dependence on TPN (IV nutrition)
-- Pittsburgh has already cut 4 hrs/day of it, which Max seems to be
handling just fine. In fact, his final bilirubin test today is
mysteriously much better than his tests earlier in the week. Many of
the steps Pittsburgh has initiated -- reduced TPN, increased feeds,
addition of fiber -- should help with this gradually, but the docs
haven't seen this kind of dramatic improvement before. Randy and I
allow ourselves to feel only cautiously optimistic while we see how it
all sorts out. We've been trying to swing neither too high with our
highs nor too low with our lows in this long process, a sentiment
echoed by Dr. Squires, the main GI doc here.
This trip was too hectic for Max to get to meet all our friends or for
us to visit our old haunts. Next time. The flights home (with a stop
for refueling in stormy Salina, Kansas) are uneventful. Max is an
easy traveler -- mostly sleeping, with one stretch of alert time
checking out the jet and smiling at the nurses. A "Welcome back" sign
greets us in his hospital room in Denver. Far from the home we had
envisioned, but it feels so good to be back.
Sat Aug 19, 2006
Yuko stayed home (to update everyone on Pittsburgh and make room for
all the visitors in Max's tiny room today), so Max had some big
adventures with Daddy! He met aunt Katie (visiting from Portland),
and enjoyed the usual lunchtime with big people eating (including
Nana). He also received a special knit cap from Erica, our former
next-door neighbor in the NICU, who warned Yuko about her postpartum
checkup. Then the real fun began. We put Max in his stroller, and
took off on a trans-hospital adventure to see his old digs at
St. Joe's. This is possible because of his new 4 hr break from TPN!
We ran into Barb & Judy and several other of Max's old friends. He
didn't seem to remember his room, and in general was somewhat sleepy
for the entire visit -- he almost managed a smile for Barb with some
strong prompting from daddy. On the way out, we ran into Dr. Ziegler
and brought him quickly up to date on our Pittsburgh visit. As we
were checking out the fish tank downstairs back at Children's, I got a
call on my cell phone -- it was Nurse Michelle wondering why in the
heck we hadn't heard all her pages for us to return to the unit for
Max's 2pm antibiotics round. Ooops. Turns out that this kind of
off-campus excursion is strictly against Hospital policy! So much for
our many plans for trips to the zoo, aquarium, butterfly pavilion,
Sun Aug 20, 2006
We stay on hospital grounds today. I can't get over the fact that I
missed Max's single day to go anywhere he pleased, and Randy took him
to a hospital!
Throughout my pregnancy, our 5-year-old nephew Toshio talked about how
he was going to "teach Max crazy." He's back in nearby Golden after
his summer in Germany, and he's ready. He persuades Randy (it doesn't
take much) to chase wildly after him through the hospital, with Max in
tow in the stroller. Max looks distinctly unsure what to make of it.
When I suggest that they stop, Toshio pleads with me, "But Max WANTS
it. He NEEDS it." Toshio also asks whether Max has pooped yet. His
mom reminds him that Max has a different way to poop. Oh yes,
Toshio's parents are there too! So Max meets Auntie Junko for the
first time and sees Uncle Dave for the second time. Watching Max and
my sister gaze lovingly at each other takes my breath away.
Randy and I repeatedly mix up Max and Toshio's names. It seems
bizarre, but Toshio is the only other person we've known from the
moment he entered the world. I completely forgive my mom for
confusing Junko, Yuko, and Naoko (though I think Naoko still harbors
some resentment for later being confused with our cats).
Max starts on his breastmilk-formula-fiber mix today. He was on pure
breast milk all day yesterday because the fiber and formula weren't
ready yet. He did just fine.
Back at home, Randy and I are treated to supremely tasty
corn-cilantro-smoked gouda tortillas from Katie, and to
more-than-relaxing massage sessions with Nana. Her intuitive fingers
find and release all our knots and blockages -- our repositories of
grief and stress. Mine are more subtle than Randy's, she says, but
they're there. She can do amazing things to restore energy and flow
in even just a couple minutes. Word is spreading quickly among Max's
Wed Aug 23, 2006
Max has been in a serious mood since our return from Pittsburgh, but
today he bursts into enormous smiles for visiting Nurse Gretchen (who
first checked him into Children's 2+ months ago). Much flirting
ensues. We continue to debate who Max inherited (or learned) such
Big news: September 6 -- just 2 weeks from today -- is Lizz's target
date for us bringing Max home! The goal is for him to await
transplant here, with lots of support via a home health care system
coordinated with the hospital. We are trying not to get too attached
to this date or even to this idea, since things are always so
unpredictable. (Just yesterday, I was unable to take Max for his
outing because so many issues and corresponding procedures came up
throughout his 4-hr free window -- all eventually resolved just fine.)
And, the GI team hasn't weighed in on the date yet. Still... Max
leaving the hospital! We can't help but dream about having him
No news: Kyle Soltys and the Pittsburgh team emphasized repeatedly
during our visit that the transplant list is dynamic. It's very hard
to interpret your number on the list, because you could suddenly be
bumped up much higher -- for example, if kids above you happen to be
sick so that they cannot receive a transplant right then. You just
never know when you might get the call. We thought we understood, and
figured we would keep these caveats in mind upon learning Max's number
on the list. Now we understand that we will not learn where Max is on
the list -- we've been told it's just too dynamic to worry about.
Sheepish news: Randy stuttered a couple weeks ago and referred to Max
as Mack. I had thought/hoped it would pass, but it seems to be
Thu Aug 24, 2006
Max is progressing faster than the final steps of our house
renovation! His feeds have been increased gradually all week,
starting from the 2 cc/hr that Pittsburgh had him on and going up to 5
cc/hr today, his highest yet! And unlike his feedings before this
week, Max actually seems to be getting something from these, outputing
less than he is taking in. This improvement could reflect the
addition of fiber in the mix, to slow transit time and increase
absorption, and the fact that Max now has normal (post-infection) CRP
levels. It could also reflect some gut adaptation, and should
stimulate more. This process could ultimately reduce his dependence
on TPN and the urgency of a transplant. Go Max! C'mon, house! Max
has waited long enough for your dust to settle.
Mon Aug 28, 2006
Today is Max's 3-month birthday! He has been celebrating over the
last few days, by:
- Upping his feeds to 10 cc/hr today (after being upped to 8 cc/hr
on Friday)! Although this is very exciting for us, we're trying to
keep an even keel as with all things. The neonatologist described Max
last Friday as "defying expectations" with his great progress, but
today the developmental specialist makes an offhand remark about how
Max's feeds are negligible. So he's improving, but in the context of
a long, slow process.
- Showing gradual improvement in his liver measures! The
mysterious improvement he showed right before we left Pittsburgh seems
to have been just a weird blip (as many of us suspected), because his
measures upon our return looked just like his measures before the
blip. But his most recent measures, taken yesterday, show gradual,
believable improvement. This could reflect reduced TPN, increased
feeds, addition of fiber, and maybe rubbing Max with flax seed oil!
We can't get the omega-3 TPN flagged by one of my grad students
(because it is too experimental), but we can try to get Max more
omega-3 fatty acids cutaneously. Nana suggested this idea, and
Dr. Barksdale indicated that oils have been used in this way
historically. No one really knows how much/whether this might help --
just that it can't hurt. We've been applying it since returning from
Pittsburgh. Max loves the massaging in any case!
- Being held by crazy cousin Toshio, who marvels at how little
Max's feet are and tells us excitedly about his first school bus
- Being held on me in a Baby Bjorn carrier -- quite conducive to us
blissing out. Having Max strapped snugly to me like this as we wander
about fills what was a very tangible void. As he sleeps on me in the
carrier today, I take inordinate pleasure in seeing a piece of my
lunch salad in his hair.
- Having his crib assembled and ready for him at home! (with
expert help from Ken and Anna,
visiting from Pittsburgh, following much debate about how expert their
help might be)
Tue Aug 29, 2006
Two big -- if somewhat conflicting -- developments!: Max has 2 teeth
coming in! (This counts as one development.) Quite early, but within
the normal range. Teething tips welcomed for this precocious boy!
And, for the first time ever, I get to nurse Max tonight -- not
empty nursing after pumping, but true, gloriously unrestrained
nourishing. When Lizz said this afternoon that I could, I had to look
at my palm to see whether I was dreaming. (You can't see the lines if
you are.) Max's eyes seem to open wide at the start, then he quickly
settles into looking even more blissed out than usual. I certainly
Sat Sep 2, 2006
Max won't come home Sept 6. He spikes a high fever this morning.
Results from various tests come in across the day, indicating that he
likely has a bacterial infection, which entered his blood (this has
not happened with his previous infections), but not his central
nervous system (a big relief). He will remain in the hospital through
his antibiotics course. A broad spectrum set is started immediately
-- this may change to a more targeted 7-10 day dose as the results
from his cultures come back over the next several days. His distal
bowel is a likely culprit -- we will revisit the possibility of
removing it to reduce the chances of these infections.
When my mom visited, she mentioned how hard it was to hear about Max's
infections from a helpless distance, and how much better it was to see
all of his strength and happiness and affection in person. I feel
this on a smaller scale even just stepping out to eat. The cashier
asks how Max is doing, and I have to fight back tears. It's a somber,
solitary lunch on an unusually dreary Colorado day. But my heart
leaps as soon as I come back to Max's room, seeing him laying on
Randy, gazing curiously at his sleeping Daddy. And after Max's
unhappy morning, it brings immense joy to watch him taking obvious
comfort and pleasure in nursing, followed by burping, and then
lighting up with smiles for everyone (perhaps with some help from his
tylenol and antibiotics kicking in). He even tolerates his spinal tap
at day's end, once he is released from a curled position after the
needle is inserted.
As always, Max is in great hands, as are we. In the morning, Nurse
Becky (the self-proclaimed favorite nurse of Max's!) catches his fever
quickly, gets tests and treatment started right away, and walks us
through each step. In the evening, Nurse Michelle (another strong
contender!) comes in to do one of her expert bag changes for Max. She
sees me holding him after his spinal tap, and recognizes that I need
this at least as much as he does. She delays to give us our time
together, and then stays late for Max. Around the clock, expert teams
consult on each aspect of Max's care.
Mon Sep 4, 2006
Max takes off just one full day (yesterday) to sleep and recover and
fuss a bit, then resumes charming nurses with his smiles this morning
and nursing this evening. His specific bacterial strains get
identified from his Saturday cultures, and his targeted antibiotics
course begins tonight. All his numbers and behavior show that he is
already well on the way to recovery, thanks to his broad spectrum
antibiotics and perhaps some from his immune system, but the targeted
antibiotics will just make sure to finish the job.
This positive turn of events gives us a much needed breather after the
stresses of the past couple days. We can now better appreciate Max
getting to meet Auntie Naoko and Uncle Mike (visiting from LA for the
long weekend), and the humor in Randy cautioning them to not get Max
too excited at night. Randy has a long history of overstimulating
other people's kids around bedtime, as a way to help "tire them out,"
despite their parents protestations...
Sat Sep 9, 2006
September 18 is the new date to not get too attached to, at least as
of yesterday. Max is recovering well from his infection. His
antibiotics will run their course through the coming Wednesday, then
the GI team wants to watch things for a couple days. They won't
discharge him on a weekend, so the following Monday (the 18th) would
be the earliest we could bring him home.
No one seems ready to proceed to removing Max's distal bowel. There's
still no word on a care conference to discuss his options, but various
members of his teams have weighed in individually, indicating they'd
like to hold off on this surgery for a number of reasons. First, it's
a major surgery, so everyone would like to see Max make it to
transplant without needing it if possible. Second, people seem
confident that Max's distal bowel infections can be managed as they
have been -- through careful monitoring and quick treatment. The GI
team apparently manages a lot of "gut kids" in this way, and in places
more remote than Boulder (e.g., in neighboring states). Third, one of
the main concerns with these infections is the potential hit on Max's
liver, but it seems to be doing alright. His numbers were actually
slightly better on Monday, and then a bit worse on Thursday, but all
within his previously observed range.
Sun Sep 10, 2006
Max knows how to get what he wants. We often walk in to find several
nurses gathered around him, taking in his smiles and coos. And he has
perfected a little pout for when he's not being sufficiently
entertained. Today he discovers the best attention-getter yet --
tugging off the little stickers on his chest, which attach the leads
for his heart and respiration monitors. (He doesn't need these, but
they are standard issue for all the kids here. He didn't have them in
Pittsburgh.) Removing the leads sets off loud alarms and brings
nurses rushing in, where they find Max laughing -- incriminating
evidence in hand -- on two separate occasions this morning. We wonder
whether he will be bored with just us at home.
Thu Sep 14, 2006
"You just never know." This is the mantra of Max's Auntie Naoko. Her
partner Mike kids her about this, throwing the phrase back at her in
opportune moments, like when she wonders aloud whether to take a
particular parking spot. Randy has decided that my dad's phrase is:
"There are many factors." Both can be used for almost any
We don't know whether Max will come home September 18th. After his
recent infection, we thought that surgery to remove his distal bowel
was very likely, since this should decrease his risk of infection.
Then everyone seemed to argue for holding off, so we wrapped our minds
around that plan. But this Monday, Lizz announced that the surgery
was likely, based on conversations between Dave Partrick (the Denver
surgeon) and the Pittsburgh team. On Tuesday, we learned that these
conversations were with Ed Barksdale, the sole member of the
Pittsburgh team who has argued from the start for removing the distal
bowel. Other doctors there had argued for waiting on this surgery,
because it could increase the difficulty of transplant -- due to the
resulting reduction in size of the abdominal cavity (and possibly the
disconnecting of the blood supply to the intestine). Now we're
waiting for consultations among more members of the team, to see if
There are many factors. As usual, everyone seems to agree on what
they are -- it's just a matter of weightings. If Max doesn't have the
surgery, we're so excited to bring him home quite soon. If he does
have the surgery, we're eager to see him through that and then bring
him home. Big ifs. Then there's the question of when we'll get the
transplant call. We'll always have a packed suitcase ready. You just
Fri Sep 15, 2006
Randy, Lizz, and I talk with Dr. Mazariegos, one Pittsburgh transplant
team member who had initially argued for holding off on the surgery to
remove Max's distal small intestine. He indicates that there is now
consensus to remove it, given the recurrent infections and their clear
impact on the liver. The abdominal size issue is not as important as
maintaining a healthy liver, and disconnecting the blood supply turns
out to be a non-issue -- transplants are equally successful when using
the intestinal blood vessels when available, or using alternative
vessels when the intestine has already been removed. Max is scheduled
for surgery Thursday.
It's especially hard to think about him undergoing another major
surgery now that he is so social (smiling, "talking," singing,
flirting) and so cognitive (actively taking in each picture in Brown
Bear, Brown Bear, What Do You See, listening intently as Randy and I
chant Snuggle Puppy lines from memory). But we will see him through
this, taking comfort in thinking about the surgery reducing his risk
of infection and easing his transition home. (Our house may very well
be done in time. Max knew better than to take our general
contractor's July 1 date seriously, let alone Daddy's
always-optimistic June 15th estimate -- "it can't possibly take as
long as they think!" Mama's "pessimistic" estimate of Sept 30th may
be pretty close...)
Sun Sep 17, 2006
Max meets our friends Jerry and Julie Rudy. (Jerry is a close
collaborator of Randy's. His southern twang provides a constant
reminder of how I spoke as a child, growing up in his hometown of
Petersburg, Virginia -- before having the accent teased out of me by
Minnesotans, of all people.) They elicit smile after smile, and one
very satisfying burp. Max tries on (and kicks off) his first pair of
shoes. We chow down on a big barbecue dinner. Jerry and Julie do not
comment incessantly on Max's cuteness, but Randy says later that I
pretty well covered that ground.
Mon Sep 18, 2006
Our morning emails bring word that Max is being prayed for by a prayer
group, an agnostic, and an atheist. His surgery looms over us, but he
just happily progresses along -- upping his feeds to 13 cc/hr and
absorbing them relatively well, getting hefty enough to start limiting
how long we can dance with him, delighting in Daddy swinging him up to
the ceiling, and beaming at mama zooming in to kiss him again and
Thu Sep 21, 2006
Max's surgery is still on for 3:15 this afternoon, and should take 2-3
hours. We know to not get too attached to either estimate. We also
know that these will be grueling days for us. We'll be unable to hold
Max for at least a day after surgery, then will likely wait for weeks
as he gradually recovers from the surgery, progresses back up to his
current level of feeds, etc. But his amazing team (starting to collect photos here) will see
him through. They've had extensive discussions to ensure that he will
be comfortable post-op, using a combination of IV ibuprofen to reduce
swelling and fentanyl to block pain receptors. (Although the epidural
worked great for Max's last major surgery -- once it got working --
the 24-hr process of getting there was too excruciating for anyone to
want to touch that option again.) In the grand scheme of things, it
won't be long before Max is once again laughing in glee and
anticipation as Daddy bounces him on his lap and kisses his toes.
Max's surgery goes "perfectly." It starts not too late (~4:30) and is over by
7:00. There are no complications. The surgeon notes that Max's functioning
intestine has clearly grown (happy intestine adaptation!). His
non-functioning intestine is small, so its removal should not have much
effect on transplant plans.
Max's pain management in the hours post-op has been a bit tricky again, with
trying to find the right dosing and mixes, but nothing like the horror of his
last surgery. Now he is sleeping soundly, and from the looks of his rhythmic
sucking, dreaming all about mama...
Fri Sep 22, 2006
Max had a great night until he stopped breathing. This is what Nurse
Lisa tells us when we call at 6:30 am. She was right there when it
happened, having just poked his heel for some lab work. She was able
to administer oxygen immediately, using the oxygen mask stored 2
inches from his face for exactly this purpose, because apnea is a
known risk of fentanyl. Often kids will start breathing on their own
after a few puffs, but Max did not. So Lisa kept the oxygen mask on.
The surgical team happened to be rounding then, and instructed her to
give narcan. This immediately cancels the effects of the fentanyl --
so Max resumed breathing, but also opened his eyes in sudden
realization of his pain. He was given a bollus of fentanyl, and his
drip fentanyl was resumed at a lower rate. He was resting comfortably
pretty soon after, probably aided by the ibuprofen and atavan (given
to take the edge off) in his system -- their effects are not canceled
by the narcan.
Pain management is a tricky business. We are reigning in our
inclinations to maximize doses to minimize Max's pain. Last night, we
watched in pure appreciation as his fentanyl was gradually upped to
the high end of the recommended range, since that's what it seemed to
take for him to get comfortable (and allowed him to sleep and recover
for most of the night). Now the tradeoffs are more obvious.
Thankfully these were quite clear to Max's team from the start, so
that they were positioned to immediately address problems and find a
On our way in, we run into Erica (our former NICU neighbor),
who has just stopped in for a cardiac checkup for Annabelle. They've
been home for a week. Erica warns us that it's not all roses getting
your baby home -- she's frequently up all night, overwhelmed with
constant feedings and pumpings, and struggling to find time to shop
for baby supplies. But she looks more alive and invigorated than
we've ever seen her. We can't wait to share her complaints.
For most of the day, Max recuperates comfortably -- the fentanyl has
him pretty much out of it. But in the evening, he starts getting a
little too relaxed. His blood oxygen drops as his respiration and
heart rate slow. Nurse Linda quickly "bags" him, giving him an oxygen
boost with his nearby mask, and Max comes around quickly. We've never
seen anything like this, because Max didn't have any breathing issues
after his epidural surgery, and he was intubated with oxygen for days
after his St. Joe's surgeries. Seeing our alarm, Linda reassures us
that this is very normal with fentanyl -- not at all scary. If it
were scary, she'd be calling out for help.
Twenty minutes later, Linda calls out for help. Then again 20 minutes
after that. The night nurse does the same thing a couple hours later.
Each time, it's the same story: Max goes limp, and his blood oxygen,
respiration, and heart rate drop and do not respond to his oxygen
boosts. Randy and I plead with him -- please Max, breathe, deep
breaths Max. The resuscitation team comes briskly but calmly with
their emergency cart. They are always ready, but Max manages to come
around on his own each time.
Randy and I had braced for grueling, but had no idea. We've always
been on the other side of pain management, trying to calm Max when he
is hurting. Now we're trying to rouse Max when he's too relaxed. His
team is titrating constantly -- his fentanyl rate has been dropped
throughout the afternoon and evening. It will take some time for his
stores to clear out of his system, getting him away from too relaxed,
but hopefully not too far from comfortable.
Having Max intubated after his St. Joe's surgeries was so much easier
on us. But Children's prefers to avoid the potential discomfort and
stress of extended intubation, and provide oxygen as needed. What
feels unbearably terrifying for us is just standard management for
them, and probably not much of anything from Max's very relaxed
Sat Sep 23, 2006
Max has a great night! The nurses do not need to call out for help
again. All of his vital signs are good and stable, and he looks
comfortable. His current low rate of fentanyl (1 mic/kg/hr) seems
Max continues to rest comfortably and stably. He opens his eyes
briefly and watches while I change his diaper. He's groggy, but seems
to appreciate hearing about how much mama and daddy love him and what
a good job he's doing.
We come home early because Randy isn't feeling great (and so isn't
spending any time near Max). Turns out he has a temperature of 101.
He sleeps while I direct my energies toward some healing TLC: delivery
dinner from Ping's! (Boulder does actually have good Chinese food --
you just need to order from the authentic menu.) We've been amazed at
our health thus far, but yesterday was too much. Now we'll all focus
on rest and recovery.
Sun Sep 24, 2006
Max has a few episodes overnight of pain breaking through his
medication (which Nurse Becky treats quickly with small bolluses of
fentanyl), followed by another relaxing day. He sleeps in our arms
for the first time since surgery. His gaze is a little less groggy
(his fentanyl rate is down to .5), and he manages to give us a half
smile. It's the most beautiful sight in the world.
Even in his subdued state, Max shows fiesty signs of wanting to move
on. He yanks out his nasal canula, which had been providing minimal
amounts of (no longer needed) oxygen. He pulls at the IV in his hand
with his mouth. He uses one foot to try to kick the pulsox off his
other foot. (Speaking of which, some reassurances about Max's oxygen
drops on Friday: He is not at risk for any long-term effects. The
pulsox is always positioned peripherally. This allows it to be highly
sensitive to any drops in oxygen, because the body reacts by shunting
oxygen centrally to protect the brain. So, Max's oxygen drops could
be caught and addressed immediately. These were horrifying seconds
for us, but they were only seconds, and seconds where his toes were
providing the early signal of wanting more oxygen.)
We're ready to move on too. The frenzy of the NICU has been jarring
after the relative homeyness of the longer term care area. The
contrast reminds me of touring the NICU just before transfering from
St. Joe's. Our guide made an offhand remark about how Randy and I
would go on a date again down the road. The idea seemed inconceivable
in the face of Max's needs -- even offensive to suggest and appalling
to consider. We have come a very long way since then. We recognize
the need to find a balance between frenzy and normalcy, and will prove
the tour guide right someday.
Mon Sep 25, 2006
Max is back to his old tricks. He moves on to full smiles with Nurse
Becky on the night shift, to laughs with Nurse Katherine in the
morning, and back to his homey room and a Snuggle Puppy reading from
Daddy in the evening. He's off fentanyl and back on feeds (starting
at 5cc/hr), and seems fine with both.
Randy is also better, as he has been since Sunday morning. He
suspects he had a case of mild food poisoning. (No, he didn't eat
spinach. Just cafeteria food, ad naseam.)
Tue Sep 26, 2006
We get the dreaded phone call in the middle of the night. It's 2 am,
it's Nurse Becky. Max has a temperature of 38.2, his abdomen doesn't
feel nice and soft like it has been, and he has stuff coming out the
top end of his (now very shortened) distal bowel. He is moaning and
looks like he feels crummy. All are possible signs of infection -- a
risk with any surgery -- but they could also be just standard
consequences of undergoing surgery. Chest and abdominal x-rays are
ordered, along with the standard cultures and tests, and broad
spectrum antibiotics are started. The second call at 3:40 am
indicates his x-rays look normal. The third call at 4:15 indicates
his blood cell count (which has given clear indications of all his
previous infections) looks normal too, and Max is back to smiling. So
it doesn't seem like he has an infection -- but we need to wait to see
if the cultures grow any bacteria.
Randy does a heroic job falling back to sleep after each call -- a
handy skill for when we get Max home, and one I need to work on.
Wed Sep 27, 2006
Nurse Becky is trying to wean us from our habit of uninterrupted
sleep. She calls ~6am, to let us know that the peripheral blood test
has started to grow a type of bacteria that will be treatable with the
antibiotics that were started yesterday. Oddly, the central blood
test is still negative. At least this is odd to us -- we don't
understand how one part of the blood supply could be infected while
another part is not. The only possible explanation we receive is
"measurement error" -- Max may not have an infection, so the central
blood test would be correctly negative, but the peripheral blood test
may have become contaminated somehow during testing. We can
understand the logic of this explanation. But, people seem to think
it is unlikely, without offering alternative explanations.
The bottom line is that Max will be fine. Either he has an infection
from surgery that is being treated, or he has no infection. For his
part, Max isn't thrilled about having to undergo another precautionary
spinal tap this afternoon (which looks fine), and his sleep schedule
has gotten a bit off track. He charms us with smiles and conversation
anyway, and takes in the brilliant fall leaves on his first post-op
Thu Sep 28, 2006
Max is fine. (On the few occasions when the hospital has called,
getting our hearts racing, we've always appreciated them starting off
by saying this when they can.) He celebrates his 4-month birthday by
convincing everyone that he has no infection -- the scare of Tuesday
morning was a false alarm. His initial central blood test hasn't
grown any bacteria, consistent with the initial peripheral test being
contaminated. The subsequent central and peripheral tests (taken
yesterday) are also not growing anything. His shameless flirting
certainly suggests he is back to his old self.
So his feeds are resumed, and I get to "empty" nurse him. The quotes
are relevant. We've discovered -- by weighing Max before and after --
that he can get as much milk from these empty nursings as from regular
ones. This boy knows how to get what he wants.
I'm caught off guard by how old Max seems -- a 4-month-old boy!
Everyone talks about how quickly this time flies by. Apparently even
in the hospital.
Fri Sep 29, 2006
Max's blood cell count and CRP measures look great, giving final
confirmation that he did not have an infection. His antibiotics are
stopped. We breathe a collective better-safe-than-sorry sigh of
relief. The nurse practitioner wants to up his feeds from 5 to 6 and
gradually increment to 10. We invoke the "What would Lizz do?" line
of argument, to get the plan changed to go up to 8 and aim for his
pre-surgery level of 14 sooner rather than later.
Practitioner Lizz, the most regular presence in Max's medical
life, is gone. She left Children's this week to spend 6 weeks at a
hospital in Fort Collins. Although she reassured us that we could
call her (like we did practically every day when we were in
Pittsburgh), Randy and I feel not just a little lost around this
development. For the last several months, Lizz has tracked all of
Max's numbers to determine the details of his IV nutrition, fluids,
and feeds. She argued convincingly that once Max came through the
general effects of this surgery, his feeds could be aggressively
advanced because his functioning intestine was untouched.
But in some ways the medical details were the least of it. Lizz was a
consistent force in poking fun at Randy for graphing every possible
permutation of Max's numbers. She showed us how rambunctious we can
be with Max, and how much this makes him laugh. She knitted a cheery
hat for Max to grow into over the next several years. She even came
up with her own special song that she always sang for Max. (At least,
this is what we heard from one of the nurses, who is apparently too
young to know about this group called the Beatles.) While Max has
quickly moved on to flirting with the new NPs, we'd like to think that
he has a special place in his heart for Lizz.
Sat/Sun Sep 30- Oct 1, 2006
Everyone is talking about getting Max home. Morrie Ziegler thinks he
looks great, and asks what people are waiting for. Our driveway and
front porch should get poured this week for a proper welcome.
Max seems ready for a change of scene. When he was being held earlier
in the week, we heard that he would very willfully cry whenever he was
moved toward his crib, and smile whenever he was moved away from his
crib and toward the action. Quite effective. His sphere of boredom
(and associated strategic crying/smiling) now seems to have expanded
to encompass his entire room.
Our colleague Akira Miyake
visits and is suprised by how small the room is -- a universal
reaction. We discover with Akira's visit that there are people Max
will not flirt with. Guys with beards? People who refuse to use
infant-directed speech? Akira skeptically asks to see a demonstration
of Max flirting with the nurses, but we suspect ulterior motives and
Mon Oct 2, 2006
We're getting closer to invigorated exhaustion. In preparation for
being home with Max, we "room in." This means moving Max for one
night to a room big enough for a couch -- a small, hard couch -- which
Randy and I try to sleep on. Max wakes around 1 am and Randy soothes
him back to sleep. I figure I'll get the next one, but it doesn't
come until the perfectly decent hour of 7. We're there to watch Max
as he falls asleep, and to watch him as he wakes up. He watches us
watching him. We could get used to this.
Wed Oct 4, 2006
Everything feels more meaningful as we prepare to leave the hospital.
The doll house in the lobby, which has provided Max's only exposure to
the concept of a house. The look from a mom pushing her baby on a
throne-like high chair, configured with oxygen and various bulky
devices. She fixates on Max in his seemingly normal stroller set-up,
and I want to say "No, look." and reveal his broviac.
We make our usual visit to the Rube Goldberg ball contraption. It's a
popular stop, with its dramatic loop-di-loop tracks, high drops and
bounces, and bells that ding as the ping-pong size balls pass. These
things grabbed our attention for the first few weeks. But what has
held our attention over the last several months is something
different. You never know what will happen to a given ball on its way
down. The track bifurcates at a number of points, and a swinging
pendulum randomly sends balls left or right, sometimes wavering
through multiple swings before committing. There are also plateaus,
where a ball can hang out for seconds to hours, depending on what
other balls do. Each trajectory is unique and unpredictable. I think
about what ride down I would like best - the perfect combination of
thrills and just cruising. But then I realize that planning the
entire route would go against the whole ethos of this microcosm, what
makes it endlessly fascinating, worth experiencing day after day.
Thu Oct 5, 2006
Third time's a charm. It doesn't matter that our driveway won't get
poured til next week. We've been staring at that ball contraption too
long. Max is 4 months, 1 week. And he's home!!!!!
We'll take some time to get settled, enjoy, and master the currently
overwhelming amount of medical stuff. We will eventually emerge ready
for visitors and celebrations.
Sat Oct 7, 2006
As we were leaving Children's, NP Donna urged us to try to be just
parents with Max at home -- not nurses, dieticians, or GI docs. So
far, that has proven to be difficult. Our waking hours (and our
former sleeping hours) have been consumed with training and consulting
on Max's home health care setup. In the abstract, we know this will
feel routine someday.
We have caught tantalizing glimpses of the life we've been envisioning
with Max. We have loved watching his endearingly groggy transitions
to curious wakefulness, and even his rougher transitions to sleep.
(Once he gets to sleep, he has mainly been sleeping through the night,
unphased by the pump alarms that bring us running.) We savor being
able to sit at our dining room table, eating cereal, with Max.
And we've taken strolls around our neighborhood. These are far too
exciting for Max to nap through, but nothing beats the three of us
napping together afterward. Already the hospital feels like a foreign
world from a very long time ago. Erica was right that it's not all
roses, but how sweet it is!
Wed Oct 11, 2006
We are in awe of parents everywhere.
Fri Oct 13, 2006
Before we got Max home, I couldn't fathom how new parents struggled to
find time to shower. It's only 10 minutes after all, and there are
two of us. Now I can't fathom how new parents even remember to
We're gradually settling into both the regular and the non-regular
aspects of parenting. Randy is there for Max late at night and early
in the morning, and I'm there in the middle of the night. We do bath
and bedtime routine together. Randy is specializing on pumps, and I'm
specializing on mixing (both IV nutrition and feeds). We do bag
changes and broviac line care together.
We continue to appreciate the simple things. Cousin Toshio reading
Hippos Go Berserk to Max. Max's occasional interest in our cats.
Their complete terror. Max's utter fascination with our images in the
mirror as I kiss him. Strolling the Pearl St. Mall. Laying anywhere
with Max. Watching Max soothe himself by sucking his index and middle
finger on his right hand -- sometimes trying fingers on his left hand
or his thumb, but always returning to his old standby. Our first
dinner out with Max. (We had hoped for somewhere casual and safe, but
Auntie Junko and Uncle Dave negotiated fancy -- Full Moon Grill. We
think this was an attempt at new-parent hazing, but Max breezed
through it without incident.)
Randy used to harumph at my suggestions for ways to take friends up on
their offers of help. Now he keeps asking when I'm going to update
Max's page with this info. Soon. After a shower.
Wed Oct 18, 2006
Our pendulum continues to swing.
In terms of regular parenting: Max is alternating between great nights
(waking just a couple times, easily consoled, quickly back to sleep)
and horrible nights (up much of the night, crying unconsolably).
Randy and I recently switched to alternating which one of us is on at
night, so that at least one of us can sleep, in theory. We need more
data to know whether the two are related.
In terms of non-regular parenting: Most of Max's liver numbers are
holding steady, which is good. But one -- his platelet count, which
is an indicator of blood flow to and from the liver -- appears to be
getting worse. This test is apparently sensitive to how long the
blood sample sits around (because platelets clot, so that the number
that are free to be measured drops with time). We're hoping that the
apparent change just reflects the fact that the home care samples sit
around longer than the hospital samples did. We should know more
after additional tests this week. If the change is real, it will
boost Max's status on the transplant list.
A mix of regular and non-regular parenting: We learn today that the
waitlist for respite care is 7 months. This is supposed to be good
news -- the wait used to be 7 years. We'll need help before
then. We are eager for any recommendations of nurses, nursing
students, or nannies whom we might hire to provide regular help with
Max's home care (or ways to reach such folks). We would tailor
our presence and instruction to their skill and comfort levels. Max
would presumably flirt indiscriminately (except for his possible beard
Thu Oct 19, 2006
Today is my birthday -- my best ever. Max gets us up early for it.
He cries throughout the wee hours of the morning, continuing his trend
of fussing only when Daddy's on duty.
The best gifts are of course having Max, and having him home. On top
of that, his platelet count is redone at Children's, and looks good --
consistent with how it looked before we brought him home, rather than
dropping precipitously as the home care tests had suggested. We are
We continue our celebration by taking Max in to meet folks at work for
the first time. We wander the halls in the proud tradition of
colleagues Steve Maier and Jerry Rudy (to perhaps a slightly more
receptive audience -- at least in terms of oohs and ahhs). Max
confirms that he will not flirt
with Akira, but demonstrates
with Tim Curran and Hisham Atallah that he has no problem with beards.
Rather than resort to infant-directed speech, Akira tries to curry
favor by designing experiments to test whether Max's sleep patterns
are really tied to parent-on-duty (looks like I'll have some
consecutive nights ahead), and by giving me a beautiful calendar
filled with images of Max.
Max soaks in all the attention for a good hour, and doesn't even get
to meet some of his biggest fans. He clearly has options other than
the hospital for when he's bored with just Randy and me.
We end the day with a delicious birthday cake from my lab, and with
Max sleeping soundly (for now!) after animated evening conversations.
Mon Oct 23, 2006
So much for my expertise.
Granddad Dick calls and asks about Max's latest cognitive
developments. This is the topic I've been researching for the last 15
years. I'm able to list some obvious facts: Max loves looking at
stuff, reaching for things, putting things in his mouth, smiling,
squealing, talking, and opening his mouth as wide as it will go, in
anticipation of kisses or swinging. But I feel completely unable to
express how powerful and beautiful and endearing all of these simple
things are -- how they convey Max's emerging thoughts and desires, and
have us falling more and more in love with him each day.
I've been giving Randy lots of advice (some solicited) based on my
successes getting Max through the night: hold him snug and still,
cradled in your right arm, reassuring him in hushed tones. But Max's
nights may have more to do with his alternating rhythms than with our
parenting. The data so far:
On the good nights, Max gets up 4 times instead of the requisite 1-2
times (which are inevitable since he needs continuous feeds and IV
input -- and associated diaper changes -- throughout the night). But
he's consolable each time.
- 10/15 w/Mama: great night
- 10/16 w/Dada: horrible night
- 10/17 w/Mama: great night
- 10/18 w/Dada: horrible night
- 10/19 w/Mama: great night
- 10/20 w/Mama: good night
- 10/21 w/Mama: great night
- 10/22 w/Mama: good night
My possibly-diminished status means some nights on-duty ahead for Dad.
I'm happy to concede issues of expertise in exchange for sleep.
Wed Oct 25, 2006
Max sees his oldest friend today. We walk down to the phamacy for
some of Max's meds - which feels like an almost-normal outing except
that most of them need to be special-ordered. We pop upstairs to see
Jeff Kerr-Layton, who delivered Max just shy of 5 months ago. Jeff
can't get over how big Max is. Terms like "chubby" and "chunky" and
"cheeks" get thrown around liberally by the staff. Yep, Max is
growing well, having doubled his birth weight a few weeks back (a
common goal by 6 months). His docs are happy with his growth, so
they've been gradually cutting his lipids - this should be good news
for his liver.
In other good news, Max has been trying to let us sleep through the
night recently. But his plans have been foiled by his pump alarms
(sounding at all hours) and the concrete guys (who ring our doorbell
at 6:45 this morning). Luckily, our driveway gets poured before the
impending snowstorm, which should keep us on track for our freezer
delivery and ideas for help.
Unfortunately, the storm sends Nana packing a couple days early, for
her drive home through the mountains to Pagosa Springs. Not before
she treats us all to rejuvenating meals, massages, and music.
Sat-Sun Oct 28-29, 2006
Max celebrates his 5-month birthday weekend with normalcy during his
days and great sleep at night. We walk to the farmers' market
Saturday morning, where we run into
friends Marie Banich and Laura
Edwards, whose soups and sauces have nourished us throughout this last
month. We meet cousin Toshio and parents at the new local mall Sunday
afternoon. Randy and I marvel at how popular we are when we're out
with Max, even with complete strangers. It seems to go beyond just
the usual cute baby reaction (to our objective parent eyes, of
course). The other day, a woman in Target couldn't stop talking about
how cute Max is. Randy and I each wondered whether she was going to
follow us around the store (and not just down the one aisle).
With his need for entertainment, Max has actually been a good forcing
function for getting us out and about, in a way that we didn't in our
pre-Max 80-hr work weeks. His IV and food pumps are pretty easy to
transport. For brief moments, we can almost forget how dependent he
is on them and on his eventual transplant. There are unexpected
reminders -- like when the woman in Target asks how much Max weighs,
and I tell her in kilograms (which is how his weight was always
recorded at the hospital, and continues to be during his regular
checkups there). She looks at me blankly, and Randy translates into
the more conversational pounds.
Mon Oct 30, 2006
Max brings home his first paycheck. (He didn't get paid for his
modeling stint at 1 month.) It's $5, for about 10 minutes of work, as
a research subject in my lab! After startling to the chorus of oohs
and aahs that greet him, he settles down in my lap to watch a puppet
show of sorts, designed to assess memory development. A team of
research assistants orchestrates the show and measures how long Max
spends watching different events.
We always emphasize to parents that we can't tell anything about
individual infants with our studies -- the data are only meaningful in
the averages. Randy and I scrutinize and overinterpret Max's data
anyway. His behavior fits an emerging pattern: extreme attention to
things that interest him, and extreme impatience with things that bore
him. Randy sees himself in exactly this way. Randy's dad suggests
it's not clear what other predispositions are possible. Like father,
like son, like grandson.
Max ends his outing by meeting his great-grandmother Mautch (Nana's
mom), and her visiting sister Bette. Bette is writing her memoirs,
Mautch has written hers. So many stories to tell. So amazing to
think about Max someday telling his.
Wed Nov 1, 2006
Those were Christmas stockings hanging from our mantel in
earlier photos -- lovingly hand-stitched for each of us and delivered
by baba in October, even though she'll be back in November and
December, because you just never know. Celebrate early, celebrate
Or celebrate better late than never. Yesterday ended up being far too
chaotic and cranky for all concerned to get into the Halloween spirit,
starting with a bag change in the middle of the night that threw all
our schedules out of sync. The high point of the day was a visit
(with delicious curry) from grad student Erika Nyhus and Randy's
postdoc Seth Herd, while Max was blissed out from nursing -- the eye
of the storm. So today is the day we dress Max up in his pumpkin
jumpsuit (another baba creation) and hat (knit by Nurse Barb from
St. Joe's -- the one who confidently reassured us that we would become
masters of Max's care, back when all we had even attempted were diaper
changes). Our Halloween festivities include trips to Target and Whole
Foods, and a visit from Great
Aunts Carse and Paula, who understandably can't stop calling Max
So it's Christmas early, Halloween late, and even with the occasional
crankfest, Thanksgiving every day.
Sat-Sun Nov 4-5, 2006
It's baba's birthday weekend, when we should be celebrating having Max
home for a month, and I want to bring better news. But we're back in
When we first left Children's, Jason the GI doc warned us that we
would need to check Max back in if he ever got a fever. And not back
into the homey longer term care area with Max's old friends, but into
an unfamiliar in-patient wing. Even if the cause were clearly
identifiable, simple, and standard (like an ear infection), they would
want to monitor him closely for a few days, given his risk of
intestinal and line infections. I quickly said "Of course", but Jason
cautioned that this would feel very difficult once we got him home.
And it does.
Randy and I followed Max's temperature in Boulder, as it rose from
slightly elevated (which could reflect teething or any of a number of
other possible causes) to true fever on Saturday morning, and then
brought him in immediately. It's been pretty much the usual protocol
since: broad spectrum antibiotics are started, and will change to a
more targeted dose as the results from his cultures come back.
Preliminary results suggest another intestinal infection. Even though
Max's risk is reduced by having most of his distal bowel removed, his
condition still leaves him vulnerable to these infections. The docs
indicate that they generally expect to see short gut kids back every
couple months or so. A marathon, not a sprint.
It's physically and emotionally overwhelming to be back here at first.
I watch the couple who checked into emergency after us, as they leave
the hospital with their baby a few hours later, and I long to do the
same. But we also see a mom who was here for many months with us, and
apparently is still here. It's not so bad to be back for a short stay
"at the Inn" (as one of the docs puts it) -- there's space for Randy
and me to room-in, various uncertainties are getting resolved, and Max
is being treated. He has some crankiness (at least in part from his
sleep schedule getting disrupted by the transition) and he
occasionally seems a little under the weather. Otherwise, he's
perfectly happy to receive the steady stream of new folks commenting
on his cuteness. He should be bored with just us back at home within
a few days.
Mon Nov 6, 2006
The bad news is that Max is clearly cutting some teeth. They start
him hollering at 5 am, and have him pretty fussy through late
afternoon. "Real teeth?" baba asks, given that our sighting 2+ months
ago turned out to be a false alarm. (We weren't crazy parents. Nurse
Michelle was the lone skeptic -- everyone else thought they were
teeth.) Yes, these are real teeth.
The good news is that Max's tooth pain is the only bad news.
Everything else is just progressing along. His specific bacterial
strain hasn't been identified yet, but his cultures from Sunday are
negative thus far, indicating that the broad spectrum antibiotics may
have done the job. He has no fever and looks great.
How quickly all this feels routine to us -- not the cause for despair
that it seemed on Saturday. It helps that everyone here treats it as
routine. It also helps to see GI
Jason, who is Max's primary out-patient doc here. He's impressed
with Max's growth ("He's a truck!"). And, NP Lizz comes to visit!
It's her first day back at Children's, after her stint in Fort
Collins. Randy and I practically jump for joy. Max coolly shows off
his 2-finger suck.
Of course, what helps the most is that Max is doing so well. Just the
teeth. They don't seem to respond to the usual treatments (cold rag,
cold teether, vibrating teether, tylenol, oragel). He does calm
almost instantly to leaving his room to stroll the halls, awkward as
it is with a bulky beeping IV pole. Hospital room -- been there, done
that. Same for the hospital crib, which he refuses to sleep in at
night -- only his stroller will do. Now all three of us know the home
sweet home that awaits us.
Tue Nov 7, 2006
Max starts making noise at 4:30 am, but today it's sweet singing and
talking. He entertains himself for 15 minutes, then falls back
asleep. We're all woken by the doc checking in at the relaxed hour of
Max's bacterial strain has been identified: klebsiella. This is what
he had last time. We all have this in our guts, but Max is just
vulnerable to having it escape into his blood. There's no way to know
whether this came from his proximal functioning intestine or from the
distal. But we may change our treatment of the distal. We had been
irrigating it once a day to clear it (a surprisingly manageable
procedure), but Denver will now confer with Pittsburgh on whether we
should cut back on this procedure, because of its potential strain on
the distal intestine. In any case, Max's cultures from Sunday are
still negative, so this infection is under control.
As Children's coordinates with Max's home care team for his discharge,
I stop by the longer term care unit to make arrangements
for donating my milk stores
remaining there. (I'm continuing to nurse Max, and to pump for his
continuous feeds plus plenty for storage for him.) I anticipate being
very unpopular showing up without Max, but everyone is excited to hear
about how well he's doing. Nurse Becky comes to visit him, and
discovers that she went to school with Jenny, his nurse today and
yesterday. There's a moment of tension when Jenny claims that Max is
HER patient, but Becky quickly corrects her.
We get home to find gourmet dinners on our front porch (sent by
colleagues Lori Markson
and Fei Xu, with ice packs
still cold) and a dinner in our fridge and cookies on our table (from
Maria Kharitonova, my student who took care of our cats with
last-minute notice). We start with the cookies, and then head out to
vote! Thanks to Max, who prevented our usual voting early or by mail,
we discover that our regular polling station is literally steps from
our back yard -- and that waiting voters sure love doting on the
cutest baby in the world.
We're grimy (that elusive shower thing), but so happy to be home.
Wed Nov 8, 2006
When cousin Toshio was a baby, my relatives in Japan found it odd that
he slept in a separate room from his parents, while their dog, Pochi,
slept with them. (They also found it odd that the dog was named Pochi
-- a stereotypical Japanese dog name that no one actually uses, like
Fido or Spot.) Now Randy and I are the odd ones, with Max sleeping in
his room and the cats sleeping with us. (And with one of them oddly
named Neko, or ``cat'' in Japanese.)
We've slept in the same room as Max only in hospitals -- at Good Sam
(where he was born), Pittsburgh Children's (the night after his
broviac replacement surgery), and Denver Children's (rooming in for
one night in the longer term area just before taking him home, and in
the in-patient wing the last few nights). At home, Max's baby monitor
transmits his every sound, so it's almost as if we're in the room with
him. Kind of like Fido and Cat are almost regular pet names.
Thu Nov 9, 2006
When we visited the local 17-year-old girl with Hirschsprungs, her mom
said that having a daughter with this condition was both the best and
the worst thing that ever happened to her. The worst for the obvious
reasons. The best because it introduced her to such incredible
people, and to an incredible side of people she already knew.
For dinner tonight, we feast on a delectable dinner of Sicilian
chicken with currants and pine nuts and salad, prepared and brought by
Jan Keenan and Dick Olson. Jan asks what else they can do. I can't
think of anything they haven't already covered -- starting way back
when with talking us through each of Max's diagnoses, to dinners and
laundry while we were in our temporary apartment, through dinners and
Max's milk storage and massage gift certificates and supportive emails
across Max's time in the hospital, and now that we're home, dinners
and babysitting offers. Not to mention showering Max with love as
well as some of his favorite gifts. (Randy and I both feel a bit
panicky if we realize we've left the house without Max's "nipple ball"
I suppose we've had a few other needs. But they were pretty well
covered by the one-of-a-kind gift box from Eliana Colunga and family,
sent to us in the NICU. It had every possible sort of treasure.
Meatballs and chocolate. Where the Wild Things Are, and a
stuffed animal of Max from that book. A book
from Akira, whom Eliana ran
into at the bookstore. Ginger lime body wash (very refreshing back in
the day when we were still showering). Spinach salad (very tasty back
in the day when these were still legal). A sound machine to help Max
sleep, which has comforted him from the NICU to the longer term care
area to Pittsburgh to home to the inpatient unit. Eliana's regular
emails are like this treasure box -- each containing a
much-appreciated wild assortment of medical brainstorming, practical
information (where to eat around the hospital, what to do for a
teething baby), charming stories about parenting, and reassurances
about it all.
You'd think we'd feel pretty alone having a baby with a 1 in 5 million
condition. But the perspective of friends
like Marie Banich
Saffran, from their own unique life experiences, has helped us to
instead feel like we're now an intimate part of a much larger
Not that we didn't suspect that our friends -- and our families, and
the medical community, and even strangers -- were this amazing. But
we have been overwhelmed with kindness.
In my worst moments, in the early days, I would have traded all of
this for Max to be healthy -- for the world to be an uncaring place
without medical hope, but for Max to be fine. I would give my life
for him after all. His condition is the best and the worst
thing that has happened to us. He is simply the best.
Sun Nov 12, 2006
Max is reliably using his first word. Randy and I have been vying for
the honor, each of us enthusiastically talking about ourself with Max
in the third person. ("Mama loves you Max. Yes, mama. Mama mama.")
We also recently bought a baby signs book (that uses ASL), mainly
because it seems like such fun, but also in hopes that this might help
Max tell us, "Hey, I'm crying because my bag is leaking." just a
little earlier than he might have otherwise.
His first word is in fact in sign. But "mama" and "dada" aren't even
close. We should have known. I'm sure Max's nurses suspected. His
first word: nystatin. This is the sweet medicine he takes throughout
the day, and will continue to take for as long as he has his broviac.
He signs for it by extending his sucking fingers (the index and middle
fingers on his right hand) and bringing them to and from his mouth --
with a directed, pleading look in his eyes. The more desperate he is,
the more frantic the hand motion. It looks like he's asking for a
cigarette. He WANTS it. He NEEDS
it. Which in truth, he does. Nystatin prevents thrush -- a yeast
infection of the mouth -- an important precaution for kids with
central lines. The excitement of starting to communicate with Max
should help us get over the disappointment of being beaten out by a
Fri Nov 17, 2006
We've been busy. A wonderful kind of busy.
Busy feeding Max his first solid food. We're starting with regular
baby rice cereal with banana flakes, mixed with breast milk -- on
advice from Max's GI team and with coaching from his OT (starting to
collect photos of Max's home care
team here). He loves it. Now when
he stares at us during meals (which we all enjoy together), he looks
more appreciative and less longing.
Busy sleeping, thanks to
Sleep Habits, Happy Child" -- recommended by Eliana. Who knew?:
If you want your baby to sleep later in the the morning, put him to
bed earlier in the evening. If you want him to sleep longer at night,
try to get him to sleep more during the day. A good time for the
first nap is 2 hours after waking in the morning. Now that we know
this crazy stuff, Max is sometimes sleeping 10-12 hours straight
through the night. And, we regret having ridiculed the Ken Normans
and Liz Lemperts of the world, with their no-room-for-negotiation
policies on their children's sleep schedules.
Busy training nanny Shannon! She has both nanny and EMT experience,
which should help a lot in general, though the specifics differ. The
family she nannied for during the last 5 years is a major property
developer in Boulder. They had her buying cashmere sweaters for their
toddler. We've purchased a grand total of 3.5 outfits for Max (thanks
to box after box of hand-me-downs from cousin Toshio and from friends
Ro and Bryan -- who have 2 sets of identical twin boys!, and with lots
of couldn't-resist gift outfits). Shannon's EMT experience (in
Crested Butte) was mainly about injured adventure-seekers. But she is
quite comfortable with kids and medical stuff, and is quickly learning
all things Max.
Busy feasting. Stuffed peppers with a creamy walnut sauce topped with
pomegranate seeds. Spinach, leek, and Roquefort casserole. Vegetable
beef barley soup. A fruity chicken dish, and homegrown chard and
carrots. Chocolate chip banana bread. These are just the recent
dropoffs. On top of this, baba is here all week. Great Aunt Jeanie
actually planned her garden gifts around this visit, figuring
(correctly) that Randy and I would have no idea what to do with chard.
Baba lightly cooks it in a delicious miso sesame sauce.
Busy working. We're amazingly lucky to be able to do much of our work
from home (or hospital), and to have labs that function almost
discouragingly-well without us. But face time is really satisfying,
and we each get in some good meetings this week -- some with Max in
tow, some while baba roams the halls and campus with him.
We have not been busy giving Max his first haircut, but it's probably
not far off.
Sun Nov 19, 2006
Wishes do come true. This is the message on a Christmas ornament I
saw advertised recently -- "Wishes" on the outside, "do come true"
when you open it up to see the inside. The old me might have pointed
out to Randy how sappy this was. Now I contemplate buying one for
Max's numbers are improving: his bilirubin levels (a fairly direct
measure of liver function), platelet counts (an indirect measure of
liver function), and hematocrit (red blood cell count). We know these
measures can oscillate, but hold out hope that our wishes -- for Max
to remain relatively stable or improve until transplant -- just might
Many of our other wishes have, as evidenced by gifts that first caused
us some heartache, but which Max is now enjoying. Colorful lights
from colleague Jon Cohen, which the hospital wouldn't permit us to
hang, and which we didn't expect Max to see in his room until 9 days
from today (the original estimate for when we might bring him home).
Cute jumper outfits from colleague Alice Healy and family, which
couldn't be maneuvered around all of Max's tubes when he was hooked up
around the clock (with no break in sight), but which have been just
perfect for his daily untethered outings. Bibs.
We hang Max's Beatrix Potter growth chart on the wall, in anticipation
of when he will be measured in terms of height rather than length.
Baba cross-stitched the intricate details of this chart, a labor of
love begun in 1997 -- and completed in 2002. Talk about anticipation.
And what that ornament says.
Mon Nov 20, 2006
We're still not quite ready for Max's first haircut, but we are ready
for his first party! If you're reading this, you're invited (as long
as you and yours are healthy). We'll be celebrating Max's 1/2 year
birthday at our home in Boulder, on Saturday, December 2, 3:00-6:00 pm
(hours that seemed so ridiculous
when Ken and Liz used to beg us
to move our parties earlier). Please mark your calendars -- in
pencil, because you just never know. We'll update the blog with any
changes. This party will also be a bit of a housewarming. We've
decided to call our renovation done as of 3 days ago. Auntie Naoko
encourages us to think of the parts that didn't get done as a
different project. Absolutely no gifts -- we don't have room (or the
organizational skills) for any more Max stuff. But tasty dishes and
recipes to share for this potluck party will be more than welcome!
We'll provide drinks, and of course, entertainment of the cutest
Fri Nov 24, 2006
We enjoyed our annual deeply-delicious deep-fried turkey in Golden
with Junko, Dave, and Toshio yesterday -- the first Thanksgiving when
we think of them as aunt, uncle, and cousin.
Max has been celebrating Thanksgiving all week long with sweet
potatoes, his second solid food: big open mouth to receive them, good
movement of the food with his tongue (which OT Judy trains us to watch
for), and smiles. Today he happily adds peas to his repertoire.
Sat Nov 25, 2006
Max gets his first haircut ever! And mama gets her first haircut in
many moons, which we'll say qualifies as a shower. I manage 3
tentative snips of Max's hair across a squirmy span of 5 minutes.
Randy grows impatient -- he has never understood what he calls the
``Munakautious'' nature. He grabs the shears and finishes the job in
a matter of seconds. How can a haircut make Max cuter still? His
cuteness was apparently a topic of discussion even among his surgeons
in the OR. He is clearly far more than his condition (or his
Mon Nov 27, 2006
I give a talk about my research to our department. This is my first
talk since Max (i.e., my first chance to work in a gratuitous photo of
him). Jiji apparently uses us kids as examples in his computer
science lectures. How mortifying. Granted, I do not use Max to
illustrate how good scientists can be bad problem-solvers in their
daily lives. Still, how exciting to think about Max someday being
horribly embarrassed by all my attention.
Tue Nov 28, 2006
Max gets his 6-month vaccines plus a flu shot. His 2- and 4-month
vaccines in the hospital were given Quentin-Tarantino-style: 3 nurses,
each with a needle, lunging at him simultaneously. Today's 4 shots at
the pediatrician's office come from one nurse in quick sequence.
(Yep, Max has a regular good old pediatrician, Wendy Zerin -- who
happens to be best friends with the in-laws of my postdoc mentor, Liz
Spelke.) Max cries briefly after each shot, but is back to smiles
within seconds after the final one. We're now guaranteed to be in
town for the next 2 weeks, because transplants cannot be performed
during this window following immunizations.
In celebration of Max's 1/2 birthday, we finally make his Whom does Max look most like? page!
Neither event is particularly celebratory from Max's perspective.
Hopefully Saturday's party will be!
Fri Dec 1, 2006
Max's party is ON! We wonder whether
he'll be inclined to show off his smiling, sitting, signing, sleeping,
or stranger anxiety.
Sat Dec 2, 2006
Max is a party boy. He doesn't show off sleeping (and finds my
attempts to sneak him off for a nap in the middle of his party quite
unacceptable). He doesn't show off signing, but enjoys watching the
grad students enthusiastically signing "Call me." and "I'm cold." and
"Bear." (Our book of 60 signs only gets you so far.)
He does show off sharing -- all of his toys with the legions of kids
that descend upon his play areas. Neighbor kids, colleagues' kids,
landscape designer's kid, and the party-unto-themselves of Ro and
Bryan's 2 sets of identical twin boys and NP Lizz's 5 kids (who all
turn out to know each other, as students at the same bilingual school
where Ro teaches). Word gets around that we had many of these shared
toys before Max. So Randy does a good job sharing too.
People seem pretty evenly split on whether Max looks more like mama or
dada. Each of the other contenders has support, but the late
entry of Cartman has the most ardent fans.
Throughout the afternoon, Max shows off his impressive range of
emotional states: smiles at being called "chubby cheeks," laughs at
Lizz's trademark rambunctiousness, wonderment at everyone looking at
him expectantly after singing Happy Birthday, the most
endearingly-perfect level of stranger anxiety (occasional fussing,
followed by quick calming in Mama's arms), curiosity about the sights
and smells of the delicious potluck offerings, concentration while
showing off his sitting, and distraught cries following Daddy's loud
yells during foosball.
We get lots of compliments on the remodel. It is noted that the whole
impetus for the project, a place to put Max's stroller, is in fact
empty. Max's stroller is usually in our car or right inside our front
door. Oh well. We're getting used to the idea that things can work
out well even if they don't work out as planned.
Thu Dec 7, 2006
Max's liver numbers are holding steady to slightly improving. Because
he has been doing well, our appointments at Children's were cut last
month from weekly to biweekly, and today they get cut to monthly. Go
His home care nurse still visits weekly (to draw labs), as do his PT
and OT (to help him work muscles that didn't get worked during his
hospital time). Max has had so many caregivers. When Randy and I
finally brought him home from the hospital, I felt like we had won the
grand prize -- out of all of these people looking after him, we're the
ones who get to be his mom and dad. I talk with Max often about how
lucky we are.
Thu Dec 14, 2006
We may move to Boston -- as early as next week -- for a month or two.
The omega-3 based lipid treatment (which grad student Chris Chatham
flagged for us back in July) is showing promising results for being
less taxing on the liver than the standard omega-6 based treatment
that Max is on (see recent Wall
Street Journal article). Boston is the main center for this
treatment. Denver is not comfortable starting it, but should be able
to continue it after Boston starts it and Max shows liver
We've been coordinating with all of Max's medical teams (in Denver,
Pittsburgh, and now Boston!) on these possibilities over the last
couple days. Max continues to do well, but helping his liver could
allow him to do even better. And it seems that he wants to retrace our
footsteps: Boston is where Randy and I lived between Pittsburgh and
Boulder. Now we are fantasizing about strolls along the Charles.
We have amazing support as usual, from our department (we'll continue
to work remotely) and from friends in Boston. An exchange of
apartment keys is currently taking place in Italy, which will
ultimately lead to a delivery to us when we arrive at Children's
Boston, and a place to stay while the hospital coordinates housing
options for us. We continue to appreciate how the worst thing can
bring out the best.
Fri Dec 15, 2006
Up until now, our insurance company has been wonderful about covering
Max's needs. But today they refuse to cover his hospital expenses in
Boston, because Omegaven (the omega-3 based lipid) is too new. The
Omegaven itself is actually covered by Children's Boston, but not the
associated costs of Max's hospital stay, lab tests, and follow-up
visits. We file an expedited appeal, based on conversations with
Dr. Mark Puder (the remarkably-accessible surgeon spearheading the
Omegaven effort). The appeal points out that:
We should hear back on Monday.
- Ours is the only insurance company that has denied coverage.
- Max is the first patient to be denied coverage.
- Omegaven should save costs in the long run by reducing the need for TPN.
- Boston Children's use of Omegaven has received blanket approval from the FDA.
Mon Dec 18, 2006
We hope no news is good news. At least people are talking. We hear
from GI Jason that a Denver insurance rep is talking with Mark Puder
in Boston. Max's home care nurse, Cheryl, says this is key to getting
Tue Dec 19, 2006
The news is not good. Our insurance company denies our appeal,
arguing (again) that Omegaven is too new. They will not cover any
costs associated with experimental treatments, even if Children's
Boston covers the treatment itself. They do not care what all other
insurance companies are covering, and what all other patients are
Meanwhile, Max's recent liver scores (received last Friday and today)
are worse. We will go to Boston so that he can receive Omegaven,
while we appeal the insurance company's decision (we have 2 official
levels of appeal left) and look into other ways to make this work.
Our current plan is to arrive in Boston Christmas day.
Thu Dec 21, 2006
We're snowed in! Max enjoys watching the 2+ feet of snow coming down,
warming his toes by his first fire, and taking a tour of the
neighborhood snowmen. We're grateful that we stocked our fridge (and
received a shipment of croissants from
Newcombe, and chocolates
from Ken and Anna!) just
before the storm.
Mail delivery is canceled, so we haven't received our insurance denial
letter. We need this before we can go to the next level of appeal,
but we may wait until Max shows improvements on Omegaven, since this
would make the strongest case (and insurance can cover his costs after
Denver International Airport is closed through tomorrow. This means
that our friend Michael Frank
will be standing in for Auntie Naoko and Uncle Mike; they can't arrive
and he can't leave, at least until Christmas. Our flight to Boston
will be crowded, but hopefully still on. We learn that upon our
arrival, we'll have a room right by the hospital, at the Devon Nicole
house for patients and families, complete with Christmas dinner and a
present for Max.
Fri Dec 22, 2006
As if Max's story needs more of a Hollywood-style villain.
We learn from our insurance company this afternoon that if we go to
Boston, they will refuse to continue covering Max's standard home
health care (TPN nutrition and g-tube feeds, which are completely
separate from the lipids) -- the exact services they would have
provided in Denver, through the same service provider, at the same
cost. We had been told by half a dozen people that these services
would definitely be covered, so we are stunned by this outcome (as are
all the doctors, who had argued in our favor). These services would
cost us $170/day out of pocket.
We file an expedited appeal, indicating that we understand that our
insurance company cannot officially support Omegaven because it is too
new, but we are asking only for continuation of his standard home
health care. We understand that according to our benefit rules, home
health care coverage is provided only within the service area.
Presumably this is to control costs and ensure that the insurance
company can provide proper oversight of the service provider. In this
case, the service provider is Coram, which has a branch in the Boston
area with the same rates, service, and centralized billing system as
the Denver office. They can even continue to bill through the Denver
office if necessary.
We explain how much better short gut kids are doing on Omegaven at
Boston Children's, compared to how they have done everywhere else on
the standard omega-6 based lipid. We indicate how grateful we are,
beyond words, for all that the insurance company has already invested
in Max's healthcare. We ask that they continue to provide his current
home health care, in Boston, so that he can be treated with Omegaven,
in an effort to save his liver and his life.
Our appeal is denied this evening. The insurance company simply
reiterates their policy of not covering home health care outside our
service area, without addressing any of the points of our appeal. We
are brainstorming possibilities with Max's doctors. And we have the
two official levels of appeal left for this denial too. We may still
go to Boston on Christmas day, and hope for a Hollywood-style
Sat Dec 23, 2006
Deep breaths. Great Aunt Carse
often reminds us to take these. It feels good every time.
We won't go to Boston on Christmas. We'll continue our conversations
with our insurance company, in hopes that someone will look at the
specifics of Max's case and agree that he can continue to receive his
home health care in Boston. Everyone involved in Max's care is
unanimous in the belief that this should happen. We hope that this
support will allow us to be in Boston early in the new year.
In the meantime, Max will be home with family for his first Christmas!
He may show off his "ba"s for baba. He'll avoid the backlog of
passengers still stranded at DIA. He'll receive his flu and booster
shots next week and be more protected for travel. He'll go to his
regular checkup at Children's. At that time, he may get taken off his
lipids to rest his liver, while we await approval of the longer-term
Sun Dec 24 - Wed Dec 27, 2006
Sometimes the most wonderful moments are also the most difficult.
Like each evening, when Max and I bliss out during nursing. I savor
this time and recognize how lucky we are to be doing this at all. But
these are also the moments when I find myself regressing from
acceptance of Max's condition, and wishing everything could be just
fine. Wishing that we could do this whenever we wanted, with no
worries about how long Max was going or how much he was getting.
Wishing that Randy did not have to spend this time setting up Max's
pumps day after day. Wishing that as Max was waiting for the surgeon
on his third day of life, he had suddenly pooped and we had simply
taken him home. (This is what happened to another baby, born a couple
months after Max. I think about this family often in these moments.
We don't know each other, but they think of Max too, and our not-quite
Our holidays have been wonderful. We're home. Christmas celebrations
and feasts are brought to us (allowing us to uphold our
protection of Max's sleep schedule!) -- with my immediate family on
Christmas eve and with Randy's extended family on Christmas day.
Auntie Naoko and Uncle Mike arrive in the wee hours of the morning the
day after Christmas, delayed 5 days by the blizzard. Max is happy in
everyone's arms. In many ways, we couldn't ask for more for his first
Christmas. But it's hard not to wish.
We learn at Max's checkup at Children's that his liver numbers (which
had worsened recently) are stable. We had hoped they would improve,
and that the recent scores were just a blip from increasing his
untethered time to 6 hours and increasing the concentration of his
TPN/lipids in the remaining tethered time. (He is now back on the
4-hr untethered schedule.) GI Jason and NP Lizz reassure us that
these numbers are ok. Kids can have much worse scores. Still, Max's
lipids are cut from a daily dose down to three days a week. This will
likely hinder his growth, which had already slowed on the daily dose,
but will hopefully help to rest his liver. We continue to pursue
longer-term (Omegaven) solutions, though we expect no real updates
until after the holidays.
Thu Dec 28, 2006
Max's 7-month birthday brings his second snowstorm and his second flu
shot. The shot is over so quickly that Max seems distinctly unsure
whether it's worth crying about. He opts for one brief "waah." The
storm is prolonged, which happily leads Naoko and Mike to be snowed in
Mon Jan 1, 2007
Max rings in the new year with taiko drumming, happened upon by jiji
and baba on the Pearl Street Mall. Max lets it be known that he
prefers his drums from a distance. We toast to 2007, wondering
whether it will bring Omegaven, transplant, health, and happiness.
Sun Jan 7, 2007
Our plan was to go sledding this afternoon. I think Max would have
We check into the hospital instead. Max's weekly blood work last
Tuesday looked fine. But his temperature was slightly elevated off
and on over the next 3 days. So labs were drawn again yesterday; this
morning, we learn the culture has tested positive for some kind of
So we quickly pack up for another "stay at the inn," bringing the
usual comforts for Max (nystatin, nipple ball, sound machine) and a
hearty vegan noodle soup and muffins (dropped off yesterday by
postdocs Nicole Speer and Jeremy Reynolds) for us. It's almost like
packing for a picnic. It helps that Max seems to be feeling fine.
While we pack, he discovers the joy of peek-a-boo on his terms, as he
repeatedly hides and reveals his face behind a quilt from Auntie
Junko. We hope this call turns out to be a false alarm.
In the ER, new labs are drawn and broad spectrum antibiotics are
started. While we're waiting for our room in the inpatient area, we
learn that the labs show dramatic increases (worsening) in Max's
bilirubin levels. We're stunned. This doesn't feel like a picnic
We learn that bilirubin levels can reflect liver status, but they can
also transiently increase with infections. Now we hope that this is
not a false alarm. An infection that can be treated (hopefully
bringing Max's bilirubin levels down toward his usual range, and
indicating relative stability in his liver measures) would be better
than no infection to explain these high levels.
Mon Jan 8, 2007
Max's culture from his ER blood test is positive, confirming that he
has an infection. The relief this news brings says a lot about the
world we're living in. The infection appears to be in Max's central
IV line. This is the first infection he has had like this, but it is
routine for the staff here, is expected periodically for kids with
central lines, and should be treated by one of the antibiotics started
yesterday. The other antibiotic is stopped.
Thu Jan 11, 2007
We all have klebsiella living in our guts and staph living on our
skin. Max is just more vulnerable to these bacteria -- to klebsiella
due to the lack of motility in his nonfunctioning intestine, and to
staph due to the daily accessing of the broviac going directly into
his bloodstream. Klebsiella was probably the culprit in all of his
prior infections, though it was only identifiable in the two
infections that entered his blood.
This is Max's first staph infection. An infectious disease doctor
tells us that there's good news and bad news about staph. We're
experiencing both. The bad news is that it can take a while to treat.
Max's cultures have continued to test positive each day we've been
here. A second antibiotic is started tonight; this one should be
better at cutting through biofilm that can build up inside the
broviac. The good news is that staph is not particularly virulent.
This explains why Max had only slightly elevated temperatures, and why
he seems to have no idea whatsoever that he's sick. He has been busy
grabbing stethoscopes and ID badges hanging around the necks of his
new nurses in the inpatient wing, and marveling at being the center of
attention and affection from old friends in the longer term care
In other good news, Max's bilirubin levels have come down, halfway
toward his most recent stable levels. We're hopeful that these will
continue to drop as his infection is treated. It's even possible that
this infection was the cause of his bilirubin increases starting
almost a month ago. If all of those increases were transient, that
would be very good news for his liver.
Sat Jan 13, 2007
In hindsight, it's easy to wish Max hadn't been given that second
antibiotic. But we're doing the best we can with the information we
The second dose of the antibiotic clogged Max's broviac yesterday
morning. A nurse tried to clear the line chemically, but couldn't.
Physical pressure is not tried, out of fear that it would send clot
particles into Max's bloodstream or shatter the broviac catheter. He
needs a new broviac (this is the main source of his nutrition and
fluids), but we need to wait until his infection is definitively
cleared. Max's cultures have all been negative for staph ever since
the blood draw just before the second antibiotic was started. That
one tested positive for another bacteria, but this is viewed as a
false alarm, since that bacteria hasn't shown up before or since, and
it would have been killed off by the antibiotic Max has been on from
the start. The surgery to put in the new broviac is tentatively
scheduled for Monday.
In the meantime, Max gets a peripheral IV put in Friday afternoon, so
that he can receive fluids and some nutrition (though not as much as
the broviac allows). He gets additional tests that rule out bacterial
clusters at the broviac tip or around his heart valves. We learn late
in the process that these precautionary tests are almost always
negative, as they turn out to be in Max's case.
He is scheduled for surgery to remove the clogged broviac Friday at
10pm. My traditional pre-op fretting and meltdown are prevented by
the sudden announcement at 7pm that the surgeons are ready for him
early. A first! I know it doesn't matter whether or not Max is
crying when I hand him over for surgery. But it helps so much that
he is in fact happy, and immediately turns his attention to the task of
getting the anesthesiologist's ID badge into his mouth. Just like it
helps that a GI doc assessing Max for the first time comments on how
playful he is. That the post-op nurse notes how much he's just a
regular 7-month old -- grabby, attentive, talkative, smiley. He's
happy in our arms after the simple 10-minute surgery, and sleeps
soundly through the night.
Tue Jan 16, 2007
We're discharged from the hospital today, after Max's smooth surgery
last night for his new broviac. We leave for Boston first thing
Wed Jan 17, 2007
Max's second flying experience is very different from his first. This
time, it's the comforts of home in Boulder that we're leaving, rather
than Max's early home of the longer term care unit at Denver
Children's. No strangers in jumpsuits are
involved. Great Aunt Carse
shows up at 6 AM, with welcome calmness and breakfast and her van that
fits our 5 suitcases and stroller. We're in Economy Plus on United,
not on our own Learjet. When we land in Boston, we take a cab to our
hotel, instead of an ambulance to the hospital. Granted, due to Max's
infection and surgery, we've been home from the hospital for less than
24 hours. And it will be less than 24 hours before we check into the
hospital here. But it makes a big difference. We feel like a family
on an adventure, rather than a transported patient who happens to be
accompanied by his parents.
It's well worth the hassle. Airport security in Denver spends 15
minutes checking out Max's meds, fluids, and equipment. In the
boarding area, Randy administers antibiotics through Max's new broviac
while I pump my milk, both somewhat discretely. Max's TPN pump beeps
in the middle of the flight to signal completion, and Randy
disconnects him. For his part, Max fulfills our wildest flying baby
dreams. He wakes just before we leave the house, hangs out alert and
happy from then until we get to our gate, naps briefly, eats during
takeoff, naps for the first half of the flight and plays for the
second half, with only a short cry during descent. He greets the
commotion of Boston with wide eyes.
We learn that the 34 kids on Omegaven here are doing unbelievably
well, with bilirubins down to normal levels within a couple months of
starting treatment (after a transient increase, which we're warned to
expect). Only one child has not been treatable. He was sent from
Pittsburgh where he was awaiting transplant, but it was too late for
him (and his liver) to benefit from Omegaven. The doctors do not
think it is too late for Max. They tell us to take photos of him now,
to document him at his most jaundiced. They expect that with enough
time on Omegaven, allowing enough time for the gut to adapt, these
kids can get off of TPN nutrition entirely and be removed from
transplant lists. This happened for a boy with less than half the
length of intestine that Max has. Randy is elated.
I am surprised to find that I feel afraid -- afraid to let myself hope
that something this amazing could happen for Max. I realize that I am
not as strong as I'd like to think. A physical exam yesterday also
reminded me of this fact. I somehow weigh less than 100 pounds, which
hasn't been true since at least high school. Max and I will put on
some healthy pounds together in Boston.
Thu Jan 18, 2007
Many activities build toward a climactic "non-event" at day's
We check into room 809 at Children's. Randy points out his college
dorm in the distance. Max gets labs drawn to document his starting
state. He gets an x-ray to check his broviac placement. We
demonstrate for a new set of nurses how protective we are of Max's
napping. We meet the resident skeptic of Omegaven, and hear his
cautions that Omegaven hasn't been tested in randomized double-blind
studies, and the massively improved scores observed are only indirect
measures of liver function. As academics, Randy and I understand
these "ivory tower" arguments. But we'll take the treatment that is
letting kids thrive over the one that is letting them die. (The
latter -- the standard treatment -- apparently was not tested in
randomized double-blind studies either, so it's hardly the gold
standard.) We talk with a transplant doc, who mentions that
successful large intestine transplants are being done in Paris. Max
could look into this down the road, to allow him to get rid of the
stoma from his small intestine, and to continue his tradition of
touring interesting cities through his medical needs.
Max's lab results are a mixed bag. The good news: his direct
bilirubin is down to his pre-infection stable level. His liver is
making protein very well. What we'll count as good news: His
triglycerides have been very high despite cutting back his lipids,
possibly due to his infection; they are still high but decreasing.
His liver enzymes have also been high, possibly due to the second
antibiotic given for his infection; they are also still high but
decreasing. The bad news: His platelet count is low. This is the
measure that jumped around a lot in Denver, and is sensitive to how
long the blood sample sits around. A low count can indicate severe
liver injury, but can also result from infection. His hematocrit is
also low, despite a blood transfusion just before his recent
infection. We'll go in Monday for a new set of labs, and weekly
At 8pm, Max's first bottle of milky white Omegaven is hung from his IV
pole. The tubing gets threaded through a pump on the pole and then
attached to his broviac. Max is sitting on Randy's lap. I am taking
pictures. The nurse turns on the pump, and unclamps the broviac.
That's it. It is a climactic but decidedly uninteresting moment -- a
``non-event'' as Kathy Gura, the Omegaven pharmacist, puts it. Just
as it should be. Omegaven gradually flows through the broviac toward
Max's heart. And we hope.
Fri Jan 19, 2007
On one of our Caribbean sailing trips, Tom Finholdt relayed a
conversation between two college kids that he had overheard on his
flight there. One guy claimed that a million dollars to him was like
one dollar to Bill Gates. The other guy protested that it was the
exact opposite: One dollar to him was like a million dollars to Bill
Gates. Much debate ensued, but they were unable to reach consensus --
to realize that they were both right.
Max and Randy and I move into a sunny apartment in Jamaica Plain this
afternoon. The owner is a generous hospital benefactor, so we are
able to live here for free. It's just 10 minutes from Children's, and
it's right above a bakery and next to a market. It's home.
Our finances will work out somehow. Children's Boston will cover
Max's Omegaven while we are here. His TPN is being covered by our
insurance company, as a result of clarification that it is required
medication for him, separable from home health care. The remaining
costs (primarily hospital stay and weekly labs) should be manageable.
We hope that all of this will translate into less worry about
finances, and more enjoyment of Max getting better.
Sun Jan 21, 2007
Christian, the boy it was too late for Omegaven to cure, is 19 months
old and doing fine. We're now living with him and his family in the
apartment. He received a small intestine and liver transplant at
Children's Boston one month ago, when his family received the CALL
just 4 hours after joining the transplant list. 4 hours! After
waiting on Pittsburgh's list for over a year, and through 2 calls that
didn't pan out in the end (one due to a snowstorm, one due to another
recipient getting higher priority). Christian was discharged today --
in record short time. His parents credit Omegaven, which dramatically
improved his health prior to transplant, even if it couldn't get rid
of the need for one. They clear out his refrigerator drawer of IV
medications, and fill it with gourmet cheeses and meats.
Mon Jan 22, 2007
We're settling into our Boston rhythms. We've got our neighborhood JP
Licks for ice cream, and CVS for tissues sold in Patriots boxes (on
sale after their loss yesterday). Randy walks around talking like
Tom and Ray Magliozzi of Car Talk, or "Kah Tohk." The bus between our
apartment and Children's is easy and quick. When its engine rumbles
outside our family room, Max stops whatever he's doing and looks at me
with his head cocked and one eyebrow raised. I explain that it's the
bus. It reminds me of explaining pigeons to our cats when we moved
here 10 years ago.
Today's lab draws are limited to a few things. Max's triglycerides
have increased slightly, which is not great, but is reasonable in the
context of starting up on lipids again after a hiatus. These should
ultimately decrease. Max's hematocrit is gradually coming up. His
cheeks are rosy this morning for the first time we can remember, aside
from after blood transfusions or snow-shoveling with Dad.
Tue Jan 23, 2007
Thanks, Oprah. This afternoon, we meet Diane, the surprisingly young
(not that much older than us) owner of our apartment. She describes
how she was inspired to donate it to hospital families after hearing
stories of amazing generosity on Oprah.
The physical space and location can't be beat. At least as important
is how the apartment has brought us together with Christian's family.
We can't believe all they've been through. In many of our
conversations about his journey, all I can do is shake my head and
fight back tears, even as Christian is beaming at everyone from his
mom's arms. I catch my first glimpse of how people feel when talking
with us about Max.
Wed Jan 24, 2007
Max likes public transportation. The soothing vibration of buses and
trains, their interesting roars and whines, and above all, the endless
stream of people. There is almost always some enthusiastic new face
to entertain him. Not today. On the bus to the hospital, Max's only
prospect is a surly-looking punk in implausibly baggy jeans. Max
fixates him and tries repeatedly to engage him in conversation. He
shows such seriousness of purpose in his efforts that I almost feel
guilty not letting him know about the floppy velour snowman on his
hat. It's like not telling someone making a serious scientific
argument about the wad of spinach stuck in their teeth.
Max's scores from today's blood draws are ok. Most of them show the
slight worsenings that are expected when starting on Omegaven. One
surprise is that his direct bilirubin is slightly better; Dr. Puder
expects this measure to worsen before it shows dramatic improvements
in Max. For consistency's sake, I feel like I should worry
about either the measures that are getting worse (even though
this is expected) or the measures that are getting better
(because this is unexpected). Not both.
Max's hematocrit continues to climb. We have never seen this kind of
improvement before. Christian stopped needing blood transfusions once
he started on Omegaven. Before Max was born, Randy and I had every
intention of being mellow parents -- not worrying about exactly when
Max started walking or talking and definitely not making comparisons
to his friends. But not needing any more blood transfusions! It's
hard not to encourage Max to try to be like Christian in this
Another surprise is that before Max started on Omegaven, he had the
highest ratio of omega 6s to omega 3s of any kid treated with Omegaven
here thus far. This feels like a slap in the face, after all the flax
oil massages and attempts to boost my dietary omega 3s (despite being
told that Max likely didn't have the gut to ingest them from my milk.
This is not what Dr. Puder believes.). Well, Max is mainlining omega
Max is fussy on the crowded bus ride home, following a brisk walk
through our old Beacon Hill haunts. Giving him an occasional nystatin
hit isn't cutting it, so we go to our last resort of just handing him
the syringe. He immediately relaxes into his you-may-go-now,
I-have-everything-I-need look. Randy doesn't like displaying this
clearly medical device for others to scrutinize and judge, but we do
what we need to do. Suddenly the woman next to me is elbowing my side
and the woman across the way is pointing urgently at Max. He is still
perfectly content, but in his stupor has dropped the syringe from his
mouth onto his jacket. Everyone breathes easy as I return it to its
rightful place. I like public transportation too.
Thu Jan 25, 2007
Max is starting to indulge his Boston fans. Just before we left
Children's Boston, Rachel Tunick stopped by. She's a staff
psychologist who gets called in to deal with difficult parents. That
didn't have anything to do with her visit, as far as we know. Rachel
was a graduate student and avid roller hockey player on my lab team
when we were at DU together, and has been a great resource for us
here. Rachel notes that Max is even cuter in person. We wonder what
they'll do for the (hypothetical) movie about Dr. Puder and Omegaven,
when they can't find a baby cute enough to play Max.
Tonight, Randy and I take Max out for dinner with colleague Lori
Markson, who is on on sabbatical here from Berkeley. Max shows off
how well he can nap and allow us to eat out, at least if we shovel our
food in and limit conversation. Lori notes that Max looks more like
Randy in person.
Looking cuter and looking more like Randy go hand in hand. Someone
pointed out this link in the context of what happened as Max got older
too. Oh yes, I believe it was Randy.
Sat Jan 27, 2007
Giving has never felt so good. We've been on the receiving end all
this time: for meals, housing, emotional support, even an offer from a
stranger for a live liver donation (which we declined -- if Max does
end up getting a small intestine transplant, which cannot come from a
live donor, he would receive a liver from the same donor if he needed
one). Our interactions have been so one-sided for so long that I
found myself forgetting to ask parents we talked with at Children's
Boston about how their kids were doing.
We're finally in a position to give. Being in Boston has put us in
touch with a network of families dealing with similar issues, and
we're sharing from our experiences. Randy and I seem to be the
resident record-holders for getting ostomy bags to last -- thanks to
Nurse Michelle back in Denver (the mere existence of someone known as
the "stoma queen" went a long way toward making us feel like we
could master this system), and to Nurse Patti in Pittsburgh, and
perhaps in no small part to our competitive innovations in seeing who
could get a bag to last the longest. These bag changes might seem
trivial in the grand scheme of things. They are part of routine care,
and have nothing to do with long term outlook. But they shape how you
feel about yourself as a parent. When Max stopped breathing after
surgery 4 months ago, I was terrified he wouldn't make it. When we
struggled through 3 bag changes in one day a few weeks before then, I
was terrified that I wouldn't make it, that I couldn't be the parent
Max needed for his cares. It used to take Randy and me plus at least
one other person 45 minutes to do one of these changes, and we'd be
lucky if the bag lasted a day. It was demoralizing. Now Randy can do
it on his own in 10 minutes, and the bag will last almost a week.
Yesterday afternoon, Randy changed Christian's bag and taught his mom,
Colleen, our system. This morning, Colleen tells her mom how
liberated she feels by this help and knowledge, how ready for the
day's activities and unburdened from worries about Christian's bag.
Then it leaks. I jump in to do the next change, confident I can beat
Randy's wimpy entry of a less than 24 hr bag. It takes a village to
change an ostomy bag.
More generally, we want to share what we and other parents now know
from our often-grueling experiences -- all the stuff we wish we had
heard along the way -- in hopes of easing the experiences of other
families. Randy has started
a short gut
wiki to consolidate this information (from any parents who want
to contribute) in one place.
After the bag changes, Christian's family goes to IKEA and surprises
us with a crib for Max. Giving seems like an indulgence we have all
been denied since our babies were born. Now we're luxuriating in
Sun Jan 28, 2007
Boston offers so many ways to celebrate Max's 8-month birthday. He
makes his selection using his well-traveled sound machine. It has
been set to the Babbling Brook option since our NICU days, but this
morning Max switches it to Sea Waves. So we head for the wharf,
taking advantage of the relatively balmy 30 degree day to walk from
Back Bay, across the Public Garden (where Randy tries to take Max in
his stroller out onto the frozen swan boat lake, but I intervene,
Munakautiously) and across Boston Common, through Faneuil Hall, and
finally out to show Max his first view of the ocean.
Next time, Max will probably look for a Train Station setting on his
sound machine -- that would be a much more worthy destination than
just a bunch of water. Eliana
had prepared us for this. When her son first saw the ocean at 3 years
of age, he ran excitedly toward the water. He had spotted a spider
web. He spent the rest of the day looking for spider webs along the
shore, unswayed by his parents' fascination with waves, boats, and sea
We can't predict how Max will react to his condition when he fully
understands it. Or how anyone else will react. Bev Kormach, the
transplant coordinator in Pittsburgh, once fielded questions at an
elementary school attended by one of her patients, to help the girl's
friends to understand her condition. Bev went in prepared to explain
intestines and ostomies in ways that children could understand. But
they were completely uninterested in the material she had prepared.
All they wanted to know was why the girl was 9 years old while the
rest of them were 8. (She had taken time off from school after her
We hope that what's consuming us now will turn out to be just a
backdrop for the really interesting stuff in Max's life.
Mon Jan 29, 2007
Max is a googlewhack!
That is, his web page shows up as the single hit when you google two
terms that appear in the dictionary: aganglionosis and snuggle. Max
won't get the elusive google-sanctioned fame and glory, because the
frames on his page make it look like there are actually 2 pages that
contain these terms, and an old copy of the server for his page makes
it look like there's a third. But we know there's only one.
Aganglionosis and snuggle. Uniquely Max.
Tue Jan 30, 2007
Max gets his labs drawn a day early this week, since we're at the
hospital today for his booster shot. His hematocrit continues to rise
beautifully. His bilirubin and triglycerides are stable. Of the
dozens of other measures that get tracked, some are better (e.g.,
C-reactive protein), some are worse (e.g., liver enzymes). The
overall picture looks good to Dr. Puder, given the typical trajectory
on Omegaven. And Max looks good to Randy and me. Not just in an
of-course-he-does kind of way. He's still jaundiced -- enough so that
a woman on the bus ride in gives him a gold angel pin for good luck.
But he is rosier and happy.
Thu Feb 1, 2007
I understand the fierceness of mama bears.
Rachel Tunick comes by tonight to lend us a space heater. She is
explaining to her husband that she somehow made Max cry when we ran
into her at the hospital earlier this week. Max watches Rachel, and
after what appears to be careful consideration, starts wailing. I try
to explain that Rachel wasn't bragging. I hug Rachel to show Max that
she's ok. He is unconvinced. I lay next to him, and talk soothingly.
He quiets, but is still agitated. Finally I cradle him in my arms,
shielding him with my body, and explain that Rachel won't hurt him, I
won't let her. Max looks so comforted and content, gazing up at me
like I've just plucked him from wolves (or whoever preys on baby
bears) and brought him back to the safety of our den. I am amazed,
again, by how I love him even more each day. How can I possibly love
him any more tomorrow than I do today? Max eventually manages to look
at our visitors without tears.
I wish protecting him could always be this easy.
Sun Feb 4, 2007
They say there's no such thing as bad weather, only bad clothing.
We've been hoping for warmer days for exploring Boston, but the
forecast calls for only colder. It's not nearly as bad here as
Boulder's recent minus 18 though, and Max needs some adventure. So we
layer on half our wardrobes, over our pajamas, and head for the
Charles. Max is cozy behind his spiffy all-weather stroller cover, a
hand-me-down from Christian. After a good minute of reminiscing by
the river, we opt to forego nostalgia in favor of getting the feeling
back in our fingers and toes, in an unfamiliar bistro on Newbury
Street. We savor the unexpectedly fresh offerings, the shelter, and
the fact that bad weather (or clothing) is our main concern for the
Mon Feb 5, 2007
Okay, maybe we were a little cocky about our ostomy bag system --
saving the day, bestowing our knowledge, and all that. Max is putting
us in our place. He has taken to reaching down, grasping his bag as
if he has caught it trying to escape, and yanking it off in one fell
swoop. When he wants to be more precise about things, he simply opens
the small drain cap on the bag so that all the contents spill out. He
manages to do this through his clothing, usually during the night, so
that we wake up to a very big mess. And to Max appearing rather
pleased with himself, looking up at us as if to say, ``Resident
record-holders? I don't think so.''
Tue Feb 6, 2007
One of Christian's favorite animals from Dr. Seuss' ``Wet Pet, Dry
Pet'' is the Yink. The Yink likes to drink pink ink. As you pull a
tab at the bottom of the page, the Yink turns from yellow to pink as
it drinks the ink. And in readings from Christian's dad, the Yink
makes a slurping sound worthy of a Japanese noodle shop.
We love to kiss Max's toes as he giggles and squeals. Now we find
ourselves checking their color. Colleen explained that jaundice goes
away from the bottom up -- you see yellow turn to pink first in the
toes, then up the legs, to the torso, with the face and eyes the last
to return to their natural colors. Max will be just like the Yink, I
think. Except that rather than drink pink ink, he mainlines fish oil.
It does not stink. The bottle goes clink! We hope the tubing will
Wed Feb 7, 2007
Randy and I have a good laugh over Max's labs today. At least that's
what it looks like over video-skype with baba and Auntie Naoko (who is
visiting our parents in Cleveland). The conversation starts with
quick catching up and joking around. When we move on to discussing
Max's labs, it turns out that the video-feed of us is delayed by a
couple minutes, so it looks like Randy and I are still laughing
lightheartedly. (Earlier in the conversation, the video-delay
apparently made it look like I could speak completely normally while
stuffing my face with salad. Naoko and baba found this remarkable,
but not odd enough to recognize the problem.)
In reality, Randy and I are not laughing about the labs, but we're not
crying either. Like last week's labs, some measures look better
(hematocrit and platelets continue to rise, triglycerides and one
liver enzyme are coming down), and some measures look worse (one liver
enzyme continues to rise, C-reactive protein is up slightly).
Bilirubin is still stable, the overall picture still looks good to
Dr. Puder, and we still need to remind ourselves that this process
will take time.
The video-delay leads to many amusing moments in our conversation with
Naoko and baba. No matter how much they come to expect the lag time,
it's hard to get totally used to it. We know the feeling.
Thu Feb 8, 2007
Today Max meets his match. Well, the closest you can get to a match
when you have a one in 5 million condition. Austin is just 5 days
older than Max, and has just 5 cm more intestine. He may be almost as
cute as Max. But Austin is pink -- a gorgeous, happy, healthy pink.
He managed to escape liver problems for many months (which apparently
happens for 20 percent of kids on TPN, for reasons that are unknown).
Now some of his numbers are turning, so his family is visiting from
Pittsburgh to consult about Omegaven.
We have been excitedly anticipating this meeting for weeks. But with
the unpredictability of doctor and nap schedules, we end up with only
10 minutes to talk. It's just enough time to swap bag tricks and
compare plumbing. And to connect in a way that only 2 in 10 million
Fri Feb 9, 2007
A while back, Tim Curran
confessed that he and his wife Sheila felt intimidated selecting a
gift for the baby of a developmental psychologist.
Max loves opening packages. We receive one every few days, to
replenish his medical and regular-baby supplies. Max and I open one
as part of this morning's fun. I am disappointed to see that it is
just the crib sheets I ordered earlier this week. Ho hum. Then Max
reminds me that fun is in the eye of the beholder. Sheets are perfect
for full length peek-a-boo, for simultaneous reciprocal peek-a-boo
(each with our own sheet), and for fanciful dancing. And lots of
laughing. My stamina runs out before Max's captivation.
This reminds me of the gift box we gave cousin Toshio on his first
birthday -- of carefully-selected, lovingly-wrapped items from around
the house. Tupperware containers with film canisters inside. A
magazine. A cardboard tube from a paper towel roll. Yep, I'm a
developmental psychologist. Toshio loved it, impervious to the
concerned glances passed among those who witnessed the giving.
And Max loves his Juniper Giraffe from Tim and Sheila. It is the
jumbo Swiss army knife of toys, with something for everyone: crinkles,
squeaks, rings, knobs, eyes, music, mirrors. It would have
practically required its own seat on the plane though, so it awaits us
back in Boulder. We have endless possibilities to explore in Boston
Sat Feb 10, 2007
When our friend Earl was in college, he and his buddy Steve took a
class with a woman who had a button on her backpack that said "I love
men." ("Love" was actually a heart symbol.) They once spotted
this woman from the balcony of a movie theater. They wanted to call
out to her, but didn't know her name. So Steve cupped his hands, and
yelled down at the crowd below, "I love men! Hey, I love men! I
love men!" It eventually dawned on them what he was saying.
This afternoon, we take Max on a nostalgic trip, walking our old route
from Beacon Hill, over the Charles, to MIT. Our reminiscences send
Max into a deep slumber. We meet up with friends Earl and Marlene,
tour the grand new neuroscience building (which Max decides is worth
waking for), and share new stories and old favorites, like
Randy often says to Max, "I love you, Daddy." It seems like this
could be confusing, but it may be dawning on Max what Randy is trying
to do with this repeated pronouncement. Today Max comes pretty close
to saying it back, with a little help from his fingers as prosthetic
Sun Feb 11, 2007
Last summer, Randy and I agonized over Max's infections and the
decision of whether to remove his non-functioning intestine. We
puzzled over why the journal articles on long-segment Hirschsprung's
hadn't prepared us for this situation. Neonatologist Susan Niemeier
responded with a line that has stuck with us: Research articles don't
always capture the texture of the experience. We had in fact read
papers describing groups of infants that did and did not have their
colon resected. But none of these papers even hinted at the anguish
associated with deciding which group to put your baby in.
Another thing that doesn't capture the texture of the experience:
graphs. We've seen multiple Omegaven curves, where after a delay,
liver scores get worse before they get better. (A parent recently
posted one of these graphs to
the short gut
wiki that Randy started.) So we expect this worsening. We even
want it, since it is part of getting better. But we're struggling
with the texture of the experience. Max is starting to look worse.
He has turned a little green, is developing scaly orange patches
around his mouth, and is itching his nose to the point of bleeding and
scabbing. This isn't in the graph. We hope it is in the plan.
Mon Feb 12, 2007
Max's feet are pink! Deliciously pink. There's a clear transition
line along their sides where the color switches from yellow, as if he
went to the spa and soaked his feet, in natural baby pink ink. Or as
if Omegaven is doing its thing.
That's not all. His intestine seems to be waking up and absorbing
more food. I can nurse him twice a day (instead of just once), and we
increase his continuous feeds tonight. The scaly orange patches on
his face turned forest green and flaked off. All just in time for a
visit from Grandpa Dick.
Texture isn't all bad.
Tue Feb 13, 2007
Pink feet don't lie. We go to the hospital for Max's labs a day
early, to avoid going out in tomorrow's nor'easter. Almost all of his
numbers are improving -- good measures rising, bad measures falling.
We hope the orange, green, and red, scaly, scabby weekend marks a
turning point -- from what sounds like an grim Shel Silverstein tale
toward the happily slurping Yink.
Wed Feb 14, 2007
"Your baby will make you feel a fascination like the world's greatest
toy, combined with an infatuation like the greatest lover." This is
how one of my colleagues tried to prepare us for the power of our
emotional bond with Max. But nothing can really prepare you for how
much you will love your baby. Not even already having a child.
Another colleague cried all night just before delivering her second
baby, apologizing to the imminent arrival for not possibly being able
to love her as much as she loved her first child. (She retracted the
apology as soon as she gave birth.)
Nothing could prepare us for Max, for the impact of the simple things
He indicates when he's hungry, turning to me with his mouth as open as
he can stretch it, occasionally glancing over at Randy like ``What are
you still doing here?'' I can nurse him, providing what seems, in
that moment, all that he could ever want. And I can give Randy that
Max makes it up to Randy at other times by saying, ``I love you,
Daddy.'' (which, to the untrained ear, might sound like
He calms so quickly in my arms.
When we say ``Yay, Max!'' (which we do fairly often), he clasps his
hands together and holds them up to one side of his face. He looks
like he is giving a big hooray, acknowledging his fans as he rides in
He is getting better. I'm reminded of how we felt the night he was
born, discovering a happiness we hadn't known possible.
Those colleagues don't seem nearly as nutty to us now.
Thu Feb 15, 2007
There are many things that I hope Max will learn or inherit from
Randy. One of them has clearly been passed down from Grandpa Dick --
the ability to say that if it's not productive to worry about
something, then don't. And really, they don't. It seems superhuman
to me, like they should be wearing capes and tights with this kind of
I don't think Max got quite enough time with Grandpa to learn this
ability during this visit. He did learn to say "I love you, Grandpa."
(which, to the untrained ear, might sound like ``Aylayuyaya"). He
mastered the process of opening gift bags, thanks to daily sessions
with Grandpa. And he got to hear about sailing adventures and a
supposedly fascinating DVD set about steam engines that will be ready
for him when he can visit Grandpa in LA.
We don't actually know when we'll be able to fly with Max just for
fun. But it's not productive to worry about it, so Randy and Grandpa
Fri Feb 16, 2007
It turns out we've been dropping names all this time. Our housemate
Christian is pretty much a rock star -- complete with crazed groupies,
who are now emailing each other with messages titled "I know where
Christian is" (after stumbling across Max's page), and trying to get
to Christian through me. We should have known.
We're at it again. This afternoon, Christian and Max have a play date
with Ellie, an Omegaven poster child with her own rock star following.
She is a couple months older than Max and started on Omegaven before
he was born. Her feeds are going up, her TPN is coming down, and
she's a dynamo. Before her arrival, we debate who might be more
likely to win her over, Christian (with the older man angle) or Max
(with the great hair angle). In fact, both boys seem a bit
overwhelmed by Ellie, with her exuberant squeals and self-assured
romping. Everyone eventually gets comfortable -- Max enough so to try
to negotiate toys from Christian and to pull on Ellie's tubing. The
rest of us are just happy to be hanging out with the band.
Sat-Sun Feb 17-18, 2007
Max takes his gig on the road. Randy and I load up a rental car with
his pumps, meds, and syringes, and head for the countryside of central
Massachusetts. We spend the weekend with Liz Spelke (my postdoc
mentor) and Elliott Blass (who happens to be Max's pediatrician's best
friend's brother). Max is more impressed by the connection
to Dr. Zerin, warming to
Elliott immediately, with smiles and tugs of his glasses and face.
Max might also appreciate Elliott for his seminal work on how sucrose
relieves infant pain. Pass the nystatin! It takes a few rounds of
singing by Liz -- of French pieces and verses that she composed for
her children -- but Max eventually warms to her too. Max might also
appreciate Liz for crediting babies with extensive innate knowledge,
far more than ever seemed reasonable to us before Max came along.
We feel rejuvenated -- relaxing in a beautiful home in the woods with
stunning views of the hills (which Liz and Elliott like to call
mountains), and feasting on their delicious offerings. The whole
weekend seems as surreal as the exquisite souffle Liz whips up after
dinner one night. We dig in immediately, enjoying it while we can,
with no time to stop for pictures.
Tue Feb 20, 2007
Max seems to be moulting. The process is slightly less dramatic than
a snake slithering out of its skin. Max's transformation is limited
to his face, where patches of skin continue to turn interesting colors
and flake off. We haven't seen forest green again. The splotches are
closer to a burnt sienna these days. Randy calls him "pizza face,"
in tribute to Anne
Lamott's chronicles of her son's first year; her brother used this
special term of endearment when her baby had very bad acne.
Through it all, Max manages to look better and better.
He's that cute. And he truly looks healthier. We hope that
his flaking really is like moulting -- a process of renewal.
Wed Feb 21, 2007
A neighbor yelled at Christian's mom last week -- something about our
apartment using the wrong garbage can. Colleen explained that it was
a simple misunderstanding and wouldn't happen again, but the neighbor
wouldn't let it go. Colleen finally had to say, "Look, we have
chronically ill kids up there." I was startled by this term, by the
idea that Christian could be characterized as chronically ill. He
comes across as perfectly healthy. It took another second for me to
realize that Colleen was talking about Max too.
These kids just don't seem sick. Max, Christian, Ellie (who comes to
the apartment for a second play date this afternoon), and Austin --
they're the strongest little people around, fighting a highly
specialized fight. It feels more natural for Randy and me to think
about Hirschsprung's as Max's condition, rather than his
illness or disease. Children's Hospitals are much better named than
Hospitals for Sick Kids.
I don't think we're in denial. We've just adapted to our situation,
as everyone does. Sure, we're on pins and needles each week waiting
to hear about Max's labs (which won't be drawn until tomorrow due to
Presidents' Day). But it has become part of our routine. We don't
think in terms of illness anymore.
This reminds me of the time an elementary school friend saw photos of
my family, and commented that everyone was Japanese. I thought, how
strange, they don't look Japanese to me -- they're just my mom and dad
When cousin Toshio was learning his terms for family members, Randy
and I would query him: Was he a son? A grandson? A nephew? He would
play along for a while, but would usually end the game by declaring,
"I'm just Toshio!"
Max is a cousin, a nephew, and a grandson. A long-segment
Hirschsprung's baby, a transplant candidate, and Omegaven recipient
#35. We can't help but see him as just Max.
Thu Feb 22, 2007
Max's lab results are good. We're disappointed, because we were
expecting them to be great, based on how he looks. Crazy great,
actually. When Randy tells Dr. Puder during the blood draw about our
predictions, Dr. Puder informs him that such improvement would be
unprecedented. It's easy to find yourself hoping for the
unprecedented, though. We weren't the only Omegaven parents who
thought that our baby just might be the first one to skip the
transient worsening before improving.
All but one of Max's measures show continued improvement. We should
spend more time enjoying the dozens of good numbers, like the gorgeous
increase in his platelet count -- up 60+ percent. But we focus on the
one measure, just like I focus on the one guy falling asleep during my
talks: Max's direct bilirubin has increased slightly. This worsening
is probably negligible, but in any case, the measure hasn't improved.
And this is a measure that the team here really trusts. It's a little
like Randy being that one dozing guy. Max's total bilirubin (direct +
indirect) is dropping nicely. Our understanding is that this means
his liver is doing its job in conjugating most of the bilirubin,
chemically attaching it to a compound before excreting it in the bile.
(The conjugated bilirubin is the direct bilirubin, unconjugated is
indirect bilirubin.) As Max's liver continues to heal, the direct
bilirubin should improve like the other measures.
Randy has actually fallen asleep during my talks. Everything
worked out ok.
Sat Feb 24, 2007
After our disappointment over Max's good-but-not-great labs, we're
trying not to get our hopes up for crazy great results next week. But
really I am thinking what a fine surprise it will be when they turn
out to be crazy great.
Sun Feb 25, 2007
I am not one to quote Nicole Kidman. But watching the Oscars tonight
reminds me of something she said during the awards ceremony the year
after 9/11, something I've thought of often with Max, about how it is
important (rather than trivial) to celebrate the arts in times of
Max has helped us to celebrate not only the big, obvious things --
like being alive and being consumed with love -- but also the things
that might seem trivial in the midst of his turmoil. Like talking
about ceiling repairs, as we do with friends Rachel and Peter over
lunch today. (Their upstairs neighbor flooded his condo.) Or hashing
through details of experiments and simulations with students, as we do
in our weekly lab meetings (which we attend via video-skype) and
through constant emails. And giggling with each other over nothing in
particular. These things were unthinkable in the early days, when our
only question was what it would take to save Max's life. Of course
we're still focused on his life. But the turmoil of it has helped us
to appreciate the texture of ordinary moments all the more.
Tue Feb 27, 2007
Max has a little scab on the tip of his nose, from scratching during a
recent frenzy just before falling asleep. He looks like a Berenstain
Wed Feb 28, 2007
We can feel spring coming.
Max's lab results show steady improvement. And his direct bilirubin
is now improving with the other measures. He is not yet on the
dramatic part of the Omegaven curve. The fine surprise of crazy great
labs may surprise us after all.
The days have been warm enough recently for us to spend time outside
without contemplating the fastest route inside. This afternoon, we
walk home from the hospital through the Emerald Necklace, a chain of
almost contiguous parks that wind their way around Boston and
surrounds. The sun is shining, the ice is melting -- the birds were
probably singing. Max enjoys a few minutes of this bliss before
settling into a well-deserved nap. He is 9 months old. It feels so
good to be out here.
Thu Mar 1, 2007
Forty years ago today, two events transpired that would ultimately
lead to Max. Randy entered the world, or more precisely, Nana's
hospital room in Denver. As he emerged, jiji and baba were getting
married halfway around the world, in Tokyo.
Thirty years later, Randy and I celebrated his birthday at Maison
Robert, a Boston institution just a few years younger than us. (Yep,
we're older than institutions.) Our plan for a return birthday visit
today is thwarted by the restaurant no longer existing. So we head
for Chinatown instead, to satisfy a longstanding dim sum craving. Max
discovers the art of throwing chopsticks on the floor. He is so
intent with his actions, like he knows that if he doesn't get the
chopsticks on the floor where they belong, no one will.
After wandering around South Boston, we return to the apartment for a
series of routine (but unanticipated) cares for Max. The bakery
downstairs closes before we finish, so we end up with no birthday
cupcakes. Perhaps this is for the best, given our extensive cupcake
testing in anticipation of the big day.
Forty years is a long time. Plenty of time for medical advances that
have allowed Max to live and to thrive. Plenty of time for the next
round of developments that we can't even begin to imagine. Plenty of
time for Max to start outliving institutions too.
Sun Mar 4, 2007
Imitation may be the sincerest form of flattery, but perhaps also the
most difficult. On one of our Caribbean sailing trips, we tried to
create our own "Jack Handey's" -- from the deep thoughts segment on
Saturday Night Live:
(This is what happens when 8 people cohabitate on a small boat for 10
days.) The formula seemed easy enough to imitate, but our attempts --
one of which is included above -- could always be picked out from the
It takes a big man to cry, but it takes a bigger man to laugh at that
- You know what would make a great novelty act? Have the dummy kill the
ventriloquist, and then become a mime.
- Probably the earliest flyswatters were nothing more than some sort of
striking surface attached to the end of a long stick.
The formula for great children's books also seems easy enough to
imitate -- rhymes, whimsey, and a hippo or two. But a recent on-line
purchase of 50-percent-off books (What could go wrong?) revealed that
children's books can go wrong, at least for parents. A game of hot
potato does not make a great plotline, and books that need to double
as clothing hangers signal a problem.
Each morning, I present Max with 2 books to choose from. His
earliest "choices," many months ago, were really just random arm
flailings. They quickly transitioned into clear selections that
revealed reliable preferences -- for whichever book was not read more
recently, and for any book that went up against Hippos Go Berserk. He
does not discriminate against the 50-percent-off books.
Yesterday morning though, for the first time, Max refused to pick a
book. He looked at the 2 selections I was holding out to him and
practically rolled his eyes, like "Not these again, Mom." This
morning, I dig up a new book option, and Max lunges at it excitedly,
joyfully, and a bit desperately -- a combination I've also seen when
An apartment in Jamaica Plain can't quite imitate home in Boulder,
where Max's Dr. Seuss and Sandra Boyton collections await our return.
It shouldn't be much longer.
Mon Mar 5, 2007
Forget Akira, Rachel, and
Liz. Ken Koedinger is the
scariest of them all. He is visiting from Pittsburgh, where he last
saw Max during our transplant consult. Then, Max was not yet 3 months
old and not terribly picky. When Ken shows up at our apartment
tonight, Max immediately makes clear that has developed preferences
over the last 6 months, and Ken is not among them.
Max is unswayed by Ken's offerings of a cute grasshopper shirt and
sporty jacket. (He probably suspects that these gifts are more Anna's
doing.) He calms only briefly in my arms. He is not reassured in the
least by Ken moving out of view; Max cranes his neck to confirm that
Ken is still there, and leaves no doubt that this is unacceptable. We
decide that the problem is Ken's hair, which is far more styled than
anything Max has witnessed on Randy or me. So Ken tousles his 'do.
This turns out to be the most effective trick, but it quiets Max for
only a few seconds. He knows it is still Ken after all. Max relaxes
only when we put him into his crib for the night, with promises that
Kenny isn't nearly as scary in the light of day.
Tue Mar 6, 2007
Our return flight to Boulder was scheduled for this afternoon, but we
are not on it. We are not returning to our kitties, or to Max's
library and Juniper Giraffe. To our next installment of gift
croissants (which I am oddly fixated on). To the drawers full of cute
outfits that Max is outgrowing, as he transitions from precious baby
to willful boy. To our graduate seminar, which starts this week. We
need to remain in Boston until the insurance issues around going home
on Omegaven can get sorted out. So we buy another round of staples --
things we thought we'd need only one of here -- a second jar of
mayonnaise, a second mini-shampoo, a second jug of laundry detergent.
We prepare to teach our course via video-skype. And we wait.
Wed Mar 7, 2007
I feel giddy with hope.
A couple in New Jersey with a 6-week-old boy was recently told by
doctors and counselors to prepare for the worst. Their baby has
Hirschsprung's and rapidly progressing liver damage. The doctors said
that only a miracle could save him, and they had no reason for hope.
The doctors did not know about Omegaven. The parents found Max's
page, and the family is now on their way to Boston.
I feel overwhelmed by the possibility of this baby's life being saved.
The thought makes me want to jump and dance and sing and cry. I don't
know how Mark Puder and Kathy Gura keep it together, saving baby after
baby, day after day. They are really the rock stars with crazed
groupies. (A parent confesses to us today that she blurted out "I
love you" upon meeting Dr. Puder. We know the feeling.)
Max's numbers continue to improve. The pace seems to be picking up a
Fri Mar 9, 2007
I'm finally learning how to change diapers. Or the short gut
equivalent of changing diapers.
When we first brought Max home, Randy and I each tried to learn every
aspect of his care. We quickly discovered that we needed to
specialize to develop any sense of competence -- I mix fluids and
Randy runs pumps. The plan was for each of us to eventually learn
everything. Instead, we settled into our specialized routines. All
this time, I've had no idea how to set up Max's TPN pump. This
situation would be like the mom of a typical 9-month-old not knowing
how to change diapers. I can make my excuses, like that I normally
nurse Max during the window for setting up pumps. But this would be
like a typical mom saying that she was too busy nursing to learn how
to change diapers.
Our collaborative relationship has its consequences. Tonight, Randy
notes how lucky we are to be nursing. This reminds me of the time one
of Max's case workers asked what kind of breast pump I used. As I
struggled to remember the brand, Randy said ``We use the Medela
Symphony.'' Yes, we.
Our lives are at last manageable enough for Randy to train me on the
TPN pump. Changing diapers has never felt so empowering.
Sat Mar 10, 2007
We have a photo from Thanksgiving several years ago, snapped as Uncle
Dave lowers the turkey into a deep fryer. Dave wears safety goggles,
Randy stands at the ready with a fire extinguisher, and I hover in the
background, sporting the only other face protection we could find, a
Darth Vader mask. We call it the Norman Rockwell Thanksgiving.
Randy and I are willing to sacrifice blood for Max. And today we do,
inadvertently. Randy nicks his finger while sterilizing scissors, for
cutting gauze to treat irritated skin around Max's broviac site. And
I push so hard and long trying to spike the tubing into Max's TPN bag
that the skin under my thumbnail bleeds from pressure. Meanwhile, Max
happily yodels away and eagerly performs his sit-to-stand aerobics
routine. It's a Norman Rockwell Afternoon with Max.
Sun Mar 11, 2007
We take Max to the zoo today. "To" is the operative word, rather than
"in". We pass through the departing crowds and step up to the gate,
only to hear "Zoo's closed!" We think of it as a scouting trip, to
confirm that the zoo exists. And that it is a nice walk from our
apartment through Franklin Park, considered the crown jewel of the
Emerald Necklace. It's a walk well worth doing again.
Mon Mar 12, 2007
Each day, Max wakes up with no idea what's in store for him. A trip
to the hospital? A chance to test out his vocal range in a quiet
restaurant? A day when we can't quite make it out of the apartment?
Today's outing is Jamaica Pond -- perhaps a more appropriate
destination than the zoo to go to and not in. Max is such a good
sport about the uncertainty of it all. He settles into his stroller,
watching in fascination as we take each unanticipated turn,
undisturbed by the bumps he can't see coming.
We continue to wait on word from Denver about when we can go home.
Tue Mar 13, 2007
I wish I could be more like Max. I could use a little more comfort
Randy and I have a simple plan tonight: He will pick up a pizza while
I finish Max's cares and put him to bed, then we will eat together
over Randy's lab meeting. But during the final step of Max's cares, a
basic diaper change, he reaches down and yanks off his bag. At that
moment, it's more than I can take. I'm unable to hide my frustration,
and when Randy arrives moments later, I continue to vent it. Max does
not normally see this. He gives me a calm, curious look, like he
simply wants to know, "Mama, why are you kicking at the air? Why are
you snapping at Dada?"
I'm not sure what to tell him. A bag change, even an unexpected one
right at bedtime, is not that big of a deal. My stress probably has
more to do with this week's lab results (which we get drawn a day
early because of our teaching). They are still mostly improving, but
gradually. We're disappointed again (and a bit concerned) about not
getting crazy great scores -- the ones we're trying not to expect. We
later discover that Max's steady improvements have actually brought
his direct bilirubin all the way down to where he was last July. This
is wonderful news -- not something to vent about.
Max goes with the flow, but he does occasionally have brief,
irrational meltdowns. I may be more like him than I think.
Thu Mar 15, 2007
The dinner plates in our apartment are decorated with Cheerio-sized
circles. Max sometimes uses a pincer grip to try to pick the circles
up off the plates. We're not too
DeLoache has documented how 9-month-old babies will treat images like
the real thing, even trying to suck on photos of bottles. It's hard
for children to appreciate the power of symbols -- of one thing
representing something else.
Christian's family gives us a 20-oz container this week, for mixing
Max's continuous g-tube feeds (which are still 1/2 breastmilk -- for
adaptation and immunological benefits, and 1/2 formula -- for
absorption). Since Max started on Omegaven, we've been able to
gradually increase his feeds. No one knows exactly how much he
digests, but his intestine seems to be handling the increases well.
Now, for the first time, his daily mix no longer fits in the 10-oz
bottles we've used since he came home. The new container helps us to
hope for a day when he no longer needs IV nutrition. For Max, it's
just a new toy.
Fri Mar 16, 2007
Max is honing his social skills. Today is his most interactive play
date yet. It doesn't start that way -- he first sits absorbed in a
book while Ellie and Christian romp. But when Ellie approaches to
check out the aloof boy, Max reaches out and grabs the pacifier from
her mouth. Our sudden laughter sends both babies crying into their
parent's arms. (Their startled faces remind me of how I feel when
I've cranked up the volume on video skype to hear the quietest student
in my class or lab, and then someone in the group makes a good joke.)
Christian delivers Max's best social skills lesson, coming in close to
reassure him, and presenting him with a big blue ball. I want to
remember this moment the next time I feel like kicking at the air.
Sat Mar 17, 2007
Doctors are trained to be skeptical. As Dr. Puder says, "If you doubt
a new treatment in medicine, 99.9 percent of the time you'll be
All 35+ children on Omegaven have shown clear improvements. In
contrast, the published mortality rates for children on the standard
lipid are 37-78 percent. Based on these data, there is at most a 1 in
6000 chance that Omegaven is no better than the standard lipid. These
data are not enough to convince everyone -- serious consideration is
still given to the possibility that the Omegaven patients recovered
spontaneously. For Max, this skepticism about Omegaven just means the
inconvenience of being away from home to receive it. For other
babies, it may mean never making it home.
Tue Mar 20, 2007
Today's labs just seem wrong. Max looks so deliciously pink and
happy. He is growing, and getting stronger. He is starting to feed
But the labs say that he is just holding steady. Apparently, pauses
in progress sometimes happen, particularly for older babies, who take
longer to recover in general. Increasing Max's feeds (which we've
done twice in the last week) may have contributed -- this can lead to
more bacterial products in the portal (liver) circulation and increase
inflammation. So we'll cut back on the feeds, returning to our old
10-oz mixing bottle for now. The 20-oz container from Christian's
family will sit on the shelf. We'll aim for a less fickle symbol of
hope next time.
Wed Mar 21, 2007
I give a talk at Harvard about my research. It's my second
professional opportunity to include a gratuitous photo of Max. I
thought it would be much more than this. A chance to reflect on how
far we've come since I first had to decline this invitation, last
summer, when Max was on his way to his fourth hospital and we had no
idea when (or if) he would ever come home. A chance to revel in a
group scientific discussion where my main contributions aren't "Can
you say that again?" and "Can you hear me now?" (Video-skype is
giving us the luxury of working remotely, but it isn't winning us any
teaching or mentoring awards.)
The talk does provide those opportunities, but the most salient part
of the visit turns out to be the shock and sadness people feel when
hearing about Max's condition. Randy and I have had almost 10 months
to adjust, but their reactions bring back all we had envisioned when
Max was born -- when his measurements and tests looked perfect, and we
were wet noodles of bliss and love, planning to head home in a couple
days as a family. I want to say to my colleagues, "No, no, you see,
Max is going to be okay." But I think about his pause in progress. I
want to say, "We've come so far." But I see how strange it appears
for us to be living in limbo out here, waiting for Denver Children's
to say we can come home.
Thu Mar 22, 2007
There is a George Carlin book in the apartment filled with witticisms
like "In most polls there are always about 5 percent of the people who
'don't know.' What isn't generally understood is that it's the same
people in every poll." These are remarkably unfunny when I read them
to myself, but Randy and I find ourselves chuckling when I read them
Tomasello, a developmental and comparative psychologist, has
proposed that our uniquely human cognitive abilities (like language)
arise from our uniquely human desire to share our experiences -- just
for the sake of sharing, not for any other purpose.
This afternoon, Max relaxes in Randy's arms, enjoying his thousandth
nystatin syringe. He has loved this sugary medicine from the start,
first signing for it several months ago. Today, he pulls the syringe
out of his mouth, contemplates it, and for the first time, holds it
out for Randy. Randy looks sufficiently curious that Max sticks the
syringe in his mouth. Randy takes a hit (and later confirms that
nystatin is in fact pretty tasty). They go through several rounds of
this -- Max taking a couple sucks, then offering the syringe to Dada,
and eagerly sharing it upon seeing his interest.
Who knew the roots of cultural evolution could be so sweet?
Fri Mar 23, 2007
We're starting to wonder whether Max will remember home by the time we
make it back there. He gets a good reminder today, with a visit from
and Jan. Max shows no stranger anxiety, nothing like the dreaded
Kenny-response. Dick and Jan
bring a sack of Max's favorite stuff from home, provisioning us for
the continued wait for word that we can return.
Sat Mar 24, 2007
We don't quite have the zoo schema down. We do manage to make it
there before closing today. We don't realize that a 40 degree day
means no kangaroos or giraffes (whom I'd been talking up to Max the
most) -- they're somewhere inside, off limits, avoiding frostbite. It
doesn't matter to Max, these unfulfilled expectations. When the zoo
was closed a couple weeks ago, it was just a perfectly nice walk.
This time, there's still plenty of entertainment to be had with the
gorillas, bats, zebras, and an ostrich, even if none of them come
close to sharing a nystatin syringe.
Sun Mar 25, 2007
What better way to celebrate a 10-month birthday than with a
scientific conference? A major biennial meeting on child development
is coming to Boston this week. Max and Randy and I are planning to
hang around the main entrance of the convention center, ~4:00 Friday
afternoon. If you're attending the conference and would like to meet
Max, feel free to come by -- please just make sure you are healthy and
your hands are well-washed! We'll post any updates to the plan
on this page.
Tue Mar 27, 2007
Each family has its way of paying tribute. Austin's mom refers to Dr.
Puder as "a short gut icon" on her care page -- a term that now seems
to be making the rounds. Christian dressed up as Dr. Puder for
Halloween last year. Our mode of expression is
a t-shirt -- conceived by Mom,
created by Dad, produced by Randy's step-sister Katy (via
her baby t-shirt company), and
"sponsored" by Grandpa Dick. (The shirts from Dick are available as
gifts for 25 Omegaven families). We hope the shirts will be
appreciated in the spirit intended -- in honor of the man and the fish
saving the lives of so many babies.
Max's scores are improving again. His bilirubin measures are now
better than they were last July.
Thu Mar 29, 2007
I guess there doesn't always have to be a moral to the story.
Christian is wearing his Robeez pirate shoes while playing with Max
this morning. Max had a pair of lion Robeez shoes, a gift from
Randy's cousin Corrie, but we
lost one of them after coming to Boston. I explain to Christian's mom
that we kept expecting it to pop up somewhere, but had finally given
up hope. This afternoon, Randy finds the missing shoe under our
We've been feeling increasingly resigned to not getting home any
time soon. Over dinner, Randy and I brainstorm about ways to make our
lives manageable -- and enjoyable -- while living in exile
indefinitely. The phone rings. It is GI Jason at Denver Children's,
indicating that they might be able to bring us home soon -- perhaps on
the order of days rather than months. Details are currently being
The moral of the story seems to be to give up hope, and things will
work out better than you expect.
Sat Mar 31, 2007
It has been a long time since I've cried. Well, there were tears of
joy when I heard about the 6-week
old boy coming here for Omegaven after his parents found Max's
page. We've been so excited to meet one another. They were
"busy" during our first opportunity, in the crazy medical sense that
we've somehow grown accustomed to -- the baby was having heart
surgery. He is now doing well. His scores have shown the expected
Omegaven blip, so hopefully they will start improving soon.
There were also recent tears of joy when we learned we might go home.
Those were all good tears.
Today, we say good-bye to Christian's family. They are going home to
New Jersey for the week, then returning to Boston for one final
checkup, and going home for good. We plan to return to Boulder while
they are away. We don't know when we will see each other again.
There is joy here too. Christian is going home in record
post-transplant time. He and Max are thriving, each in his own way.
We are pretty much keeping our pact to move out of the apartment at
the same time. None of us wanted to face the prospect of being left
But it's the end of an era, a Camelot in that same crazy medical
sense. Instead of castles and romance, it was housemates who could
check in with each other late at night, for help with pumps or advice
on whether an ostomy looked unusual. Instead of sailing and
rock-climbing (like in our grad
school Camelot years), it was snatches of conversation about blood
draws and fish oil and fear and hope, that made our lives as medical
nomads seem remarkably natural. Christian had been getting
increasingly excited to see Max. Max had recently grown comfortable
enough to reach his hand out to Christian, touching his sleeve or his
shoe, lightly, curiously, like you might touch a bird. Saying
good-bye to all of this brings tears of sadness.
Sun Apr 1, 2007
Max is looking good.
Today was supposed to be his second modeling stint -- sporting Neiman
Marcus fashions alongside members of Colorado's professional hockey
team, for a Denver Children's Hospital benefit event. Perhaps it's
for the best -- hockey bruisers are presumably at least as scary as
Max instead displays his cuteness in more informal venues around
Boston, for his die-hard fans at the child development conference, and
for the usual adoring strangers on public transportation. On the bus
yesterday, the mom of a 9-month-old boy ran through a checklist of
comparisons with Randy. Your baby has teeth? Mine doesn't have any
yet. Can Max pull himself up to stand? Oh, Justin can't yet. What
kind of foods does Max eat? Oh, that's much more than Justin. Part
of me wants to ask: Does Justin need a tube in his stomach for
continuous feeds? How about a central IV line for the majority of his
Randy once felt compelled to explain Max's condition as early as
possible in these encounters, to answer the unasked questions in
strangers' eyes, as they settled on Max's jaundiced skin and the
not-quite-whites of his eyes. But we sense these questions less and
less. This may say as much about changes in us as in Max. On the
subway back from the aquarium today, the mom of a 2-year-old advises
us on what a handful kids can be. Regular parenting talk. Not the
stuff of gold angel pins.
Mon Apr 2, 2007
Christian's family was allowed one sentence to communicate to their
donor family. A single sentence, to express all they felt about the
family deciding to donate organs when their baby died, allowing
Christian to live. An impossible task.
Randy and I have no such restrictions on us when go to Children's
Boston for Max's last appointment this morning. Trying to convey our
gratitude still feels impossible. How could we ever sufficiently
thank his team here? -- for halting the seemingly inevitable
progression of his liver damage. For transforming him from green to
pink. (Max's measures continue to improve, pretty dramatically with
today's labs.) For allowing us to bask in our baby squealing in
delight when we accept whatever he offers to share -- a syringe, a
carrot, a toy. In the end, Randy and I can only stumble through teary
thank you's, again and again. We'll leave it to Max to convey more
eloquent thanks someday.
Tue Apr 3, 2007
Today feels like a dream. It starts out as a bad one, as we wait an
hour for a cab to the airport, and face the growing sense that we
won't really make it home. But we wade through the usual airport
security chaos ("There's a kid with an insulin pump here!" "Let
me get the boss.") with time to spare for semi-discrete milk pumping
and Max's cares. Max does his wildly good traveling baby thing --
waking in the apartment just when we're ready for him, falling asleep
as soon as we board and napping for 3 hours, eating and playing, and
then fussing just a a bit around landing to remind us how good he has
Randy and I can't get over how squinty-bright Colorado is. Nana
informs us that it's actually a bit overcast. As we come over the
hill into Boulder, I'm reminded of the saying that it is "20 square
miles surrounded by reality." We need to pinch ourselves to believe
this is happening. Or get rear-ended, which happens to us just blocks
from our home. Great Aunt
Carse's van sustains some damage, but all 5 of us (and the other
guy, and his dogs, whom he fingers for distracting him) are fine.
Max has lived in our house only a couple weeks longer than he lived in
Boston. But he seems immediately comfortable here. Boston, too,
already feels like a dream. I can't wait to wake with Max
Wed Apr 4, 2007
Everything feels strange here. The water pressure of the shower. The
stillness of the house -- no buses or sirens or bakery traffic. My
students -- up close and personal, instead of in a little box on my
laptop. All of Max's stuff strewn about, not packed away in tight
Max seems just fine with the change of scene, sleeping through the
night, napping well, and waking happy. And soaking in the attention
of Randy's extended family (including 4 great aunts, his
great-grandmother Mautch, and his 2-week-old second cousin!), who
welcome us back this afternoon.
We try to savor every bit of being home. We know how quickly the
strange will feel routine again.
Fri Apr 6, 2007
When we present Max with two books, he almost always picks the more
novel one. But since we've been home, he has reliably chosen his old
Boston books over his new Boulder options. Perhaps it's his way of
easing the transition.
The clouds and cold and rain help too. We're getting blamed for
bringing them from Boston, but find them oddly comforting. The gift
croissants that awaited us have softened our bakery withdrawals. And
it helps so much to be able to enjoy visits from Aunt Katie, who
arrived yesterday from Portland, and Nana -- particularly given that
we were bracing ourselves to live in Boston indefinitely only last
week. Now we just need to figure out video-skyping with Christian.
Sat Apr 7, 2007
Boston changed all of us. Max's health was obviously the most
important transformation, but there are others. The cutest
development may be Max's methods of charming people, like reaching out
gently to touch them, as he had started to do with Christian. He
works this technique to full effect with Aunt Katie. And since
discovering the art of sharing, he can't seem to get enough of it,
which makes it hard for everyone else to get enough of Max. He's even
working on charming our kitty Fuzzy, who has been far more curious
(and brave) since we've come home to her. He gives Fuzzy slow, easy
smiles. They don't melt her like his techniques on people, but she
sure seems to like hanging around him.
This afternoon, we drive down to Denver for another big family
gathering, at the home of Max's second cousins. Max meets his
great-grandmother Helen, who lives just an hour from us. His larger
untethered window (6 hours) helps make this first-time encounter
possible. But probably at least as important is how Boston changed
Randy and me. Navigating life in a new place, and swapping war
stories with parents in similar (or even harder) situations, expanded
our sense of what feels manageable.
Tue Apr 10, 2007
There's something to be said for crazed groupies.
This afternoon, we run into a neighbor who hadn't realized we were
away. We don't know her very well, but it still gives us kind of an
empty feeling. As we continue our stroll around the block, another
neighbor calls to us and comes running out. She welcomes Max back,
and wants to know how Christian, Austin, and Ellie are doing. Randy
and I are touched and amazed. Max just plays it rock-star cool.
Thu Apr 12, 2007
Everything is relative.
The Denver pharmacist who coordinates Max's TPN is alarmed by his
bilirubin numbers today. But they are in fact continuing to improve
nicely. She had just forgotten how high they were before. (It has
been 3 months since his labs were last drawn by our Colorado home
health care nurse.) This boy has come a long way. He still has a
ways to go, but the pace might pick up soon. His C-reactive protein
(or CRP, a measure of inflammation, which is normally between 0 and 1)
has gradually decreased from 2 to .6. The most dramatic improvements
with Omegaven seem to happen when CRP hits .5.
Max's absolute numbers for growth and strength might be as alarming as
his bilirubin. He had stopped gaining weight before we went to
Boston, when his omega-6 lipids were cut to save his liver and his
life. And his muscle development was probably slowed by extended
hospitalization, multiple surgeries and infections, and liver damage.
But he has been slowly, steadily growing on Omegaven, and increasing
his range of movements and his endurance.
What we see is Max getting better and better.
Fri Apr 13, 2007
I wasn't allowed to wear my hair long until I reached 7th grade, and
have had it long ever since. Junk food was unrestricted (Oreos and
Ruffles potato chips were one of my favorite after-school
combinations), but now it doesn't interest me. Randy feels like he
can never quite make up for all the junk food he was denied growing
Before Max was born, Randy's suggestion for our disciplinary strategy
was simple: Mom should be the disciplinarian. Now his strategy is
even simpler: We should never say no. That would only make Max want
the thing we denied even more.
This afternoon, Max throws his new cup on the floor. He loves drinking
from cups. He is probably not absorbing much fluid -- this is
generally the job of the large intestine. But he loves the whole
drinking ritual -- demanding the drink, bringing it to his lips,
slurping it down, and slamming the empty cup on his high chair tray.
Or today, throwing it on the floor. Randy just washes it off and
gives it back. Max doesn't throw it down again.
Sat Apr 14, 2007
We need a reality check.
The day we flew home from Boston brought an interesting confluence of
events. I received an invitation to speak in Paris this fall, a
French colleague in Denver emailed to say that she would be our
personal guide should we ever end up in Paris, and Max showed off his
wildly good traveling skills. I planned to decline the invitation,
but now we're actually contemplating making a family trip of it.
The idea is not dismissed as completely crazy when we float it twice
today. Granted, the first time, over brunch, is to a 15-year-old
Belgian friend who traveled here solo to spend 3 weeks as an informal
exchange student. And the second time is with Junko, Dave, and
Toshio, who are preparing to summer in Germany and then take a
sabbatical in Thailand. It's a pretty receptive audience for the
simple idea of a few days in Paris as a family, with some pumps thrown
We may yet realize this idea makes no sense, that our expanded sense
of what feels manageable has transcended the boundaries of reality.
But it's fun to think about strolling the Seine with Max in the
Sun Apr 15, 2007
Max's nurses prepared us for more than just bag changes and broviac
My conversations with Max these days go something like this. "Max, do
you know how much mama loves you? SO much!" Max's reply: "Dada." I
might explain, "Dada is still sleeping. That's why we get this
special morning time together. Isn't it great?" "DADA."
One of Max's nurses, who was a single mom, had warned me that her baby
said Dada incessantly anyway. So I guess Max may not be trying to say
he prefers the never-say-no guy, despite emphatic appearances to the
Speaking of which, some challenges have been issued regarding Randy's
allegedly junk-food-deprived childhood. His story doesn't seem to
square with the family lore of countless episodes involving brownies
and Chips Ahoy cookies. We may need to rethink our disciplinary
strategy. And if I ask Max what mama means by "we," I bet he'll
Mon Apr 16, 2007
Several years back, while waiting at a check-in line at the airport, I
noticed that the guy behind me had no arms. Or just twig-like
protrusions for arms, which he seemed be using to move his luggage
along. I had never seen anything like this. I tried not to stare,
but I couldn't help sneaking glances to try to make sense of what I
was seeing. I'm sure it was painfully obvious to him. This was not
my proudest moment.
Max is looking so good. It's not just his rosy cheeks from the
farmers' market sun this weekend. His skin is clearly less jaundiced.
We know the eyes are the last to turn, but they too, are starting to
lose some of their yellow-green tinge. He looked so different to me
yesterday morning that I rushed to take his temperature. I later
realized that what was different was just how good he looked.
Strangers may soon be staring at him only for his cuteness -- at least
during the 6-hr window when when he is off his pumps.
It wasn't always like this. We felt the lingering looks that Max got
at the height of his pizza face days. Those looks (and that gold
angel pin) were all that we got though -- unlike Christian's family,
Randy and I were spared accusing questions about whether our child was
an alcoholic or about the quality of my prenatal care.
Still, dealing with the stares wasn't easy. And we know we will
continue to attract them with our pumps. It helps me now though,
thinking about what I did standing in that check-in line years ago.
Any of these rubberneckers could have been me.
Tue Apr 17, 2007
Compliments come in all forms. At Max's routine appointment at Denver
Children's this afternoon, we run into Nurse Gretchen, who first
checked Max into the hospital last June, and switched his mood from
serious to flirty after his return from Pittsburgh in August. She
can't believe how good he looks, and asks expectantly if he got his
transplant. I think about how spectacular Christian looks with his,
and take this question as the highest form of compliment.
Max makes the rounds, getting reacquainted with GI Jason and team at
Children's (who warmly welcome him back with a big sign and cuddly
bear), with his pediatrician in Boulder, and with Nurse Barb from St.
Joe's, where Max spent his first 3 weeks of life. It's a big job,
being the regional Omegaven spokesmodel, but Max seems more than up to
the task. We hope that as he helps spread the word, and as other
short gut kids get transformed from green to pink (or are prevented
from turning green in the first place), more and more people will
think Omegaven before they think transplant.
Wed Apr 18, 2007
That Christmas ornament -- the one that said "Wishes" on the outside
and "do come true" on the inside -- could have opened to reveal
additional layers, in the style of Russian dolls. One layer could say
"even the crazy wishes" and the next layer, "and the wishes you can't
even dream up."
Our crazy wish for our home and cats during our Boston adventure was
for housesitters who could arrive as soon as we left and leave as soon
as we returned -- without any of us knowing when either would happen.
Even better if they were nice sabbatical visitors, less likely to
trash the place than our last extended housesitters, who threw a party
and flooded the basement in our previous home. And better still if
they could entertain occasional requests to locate and send Dr. Seuss
or medical putty. And so it was, with John and Andrea, on sabbatical
in Boulder from England, with an alternate place to live whenever we
were allowed back home.
A wish we couldn't even dream up is for Max's old friends from
St. Joe's to help us out as we search for a new nanny. (Nanny Shannon
wasn't able to wait around indefinitely for her job with us to
re-materialize.) So Nurse Barb, NP Kristin, and Max will get to know each other
again, and Randy and I will get a breather a couple days a week.
The big wish is of course for Max's health. His bilirubin numbers
continue to improve with today's labs. The pace is still steady,
which is fine. With Max's measures gradually getting closer and
closer to normal, we may not have much time left to wish for dramatic
Thu Apr 19, 2007
You can't judge a book by its cover. Or by its title, which is often
all baba has to go on when ordering Japanese books for her grandsons.
Toshio was the recipient of "Otousan" (Dad), which sounds like a
nice enough children's story, but actually tells the sad tale of a boy
after his mother dies.
"Norimono Ippai" (Lots of Vehicles), which Max picks for the first
time this morning, turns out to be a safer gift. All modes of
transportation are rendered, looking remarkably cute with just the
addition of eyes. Max has ridden in most of the vehicles that appear
early in the book (jidousha = car, takushi = taxi, kyuukyuusha =
ambulance). I wonder if later vehicles will provide the opportunity
to talk about things he might ride in for the first time in Paris, but
it turns out to be unlikely (shoubousha = fire engine, gomi
shuushuusha = garbage truck, kamotsusen = cargo ship).
No one has balked at the idea of us going to Paris. We realize that
the head-shakers might be keeping their thoughts to themselves. But
so far, most responses have been of the ooh-la-la variety -- including
among Max's doctors, as well as from Ellie's mom, who knows just how
many hours and suitcases and plans are required to handle all the
pumps and syringes and bags. We feel encouraged enough to start
referring to the shinkansen as the TGV in future readings of Norimono
Fri Apr 20, 2007
Randy is starting to question Max's motives. He has noticed that the
syringes Max offers to share tend to be on the empty side. But today,
Max pulls off one of his socks and gnaws on it, and it still seems
perfectly good each time he offers it to me to chew.
Sat Apr 21, 2007
We make it to and in the Denver zoo. Max is much less fascinated by
the giraffes and elephants than by big-kid friends Andres and Lucia.
Their parents are clearly old
pros at this zoo thing. They've developed an eye for weather
forecasts that might scare away crowds but turn out to be quite
pleasant. They're not even taking photos. I love thinking about
eventually reaching this point with Max, in the same way I love
thinking about him being horribly embarrassed by me someday.
Tue Apr 24, 2007
Planned hospital visits are far less stressful than unplanned ones.
We made a planned trip yesterday to pick up Max's first batch of
Omegaven shipped to Denver. Everything is now in place for us to
continue his treatment here. Exciting, and for me, relieving. Of
course, Randy never worried about the delays, because there was no
point to worrying.
Today brings an unplanned trip to Children's, and a different kind of
excitement and relief. The day starts in a routine enough way. I am
heading out the door for a dentist appointment, leaving Max in good
hands -- not just with Randy, but also with PT Betsy, OT Judy, and
case manger Laura, who are here for Max's semiannual assessment. But
as Randy tries to "DC" Max (i.e., to disconnect him from his pump),
blood starts dripping onto the dining room floor. Max's broviac --
the heavy-duty IV responsible for delivering most of his nutrition and
now his fish oil -- has broken. His blood is now reversing out of
We clamp the broviac above the break and head to the hospital. The
surgery to replace a broviac is minor -- this is the surgery Max had
just before we left Pittsburgh (when his broviac got dislodged from
its insertion point at his skin) and just before we left Denver for
Boston (when his broviac got clogged by an antibiotic). But I don't
want to face signing another round of consent forms with a surgeon.
It's old hat, I know, but I just don't want to hand Max over again.
It seems harder as he gets older, and grows more capable of calling
for us (well, for Dada) and signaling that he doesn't want to leave
It turns out that he doesn't have to. The broviac does not clog
during our 45-minute drive to the hospital and the 45-minute wait
there. (Clogging from blood clots is a risk if you aren't able to DC
properly). So the broviac can be repaired rather than replaced.
Randy and I entertain and feed Max during this straightforward
procedure. We're good to go while the forecasted snow dump is still
coming down as rain.
This simple outcome brings us enormous relief, but also pause for
thought about possibilities like Paris. It's not clear why the
broviac broke -- these things can just happen from wear and tear.
Nurse Stephanie, who repaired the broviac, points out that we could
certainly manage Paris if we travelled with a nurse. "Bring me!" she
Wed Apr 25, 2007
Most of our work can happen at any hour. Randy is often programming
at 2 am, and I write papers during windows however big or small,
scattered throughout my waking hours. Our students come to our home
in the evenings, for meetings after Max is sleeping.
But today, an event is scheduled for the specific time period of
3-5pm. A sophomore in my lab is presenting the results from her study
on infant memory at the university's undergraduate research day. This
is the study Max participated in 6 months ago. I'm excited to show up
with him. Return visits from child participants can make researchers
feel old, highlighting just how much time has passed, but the student
and Max are still sufficiently young to avoid this awkwardness. Randy
and I devise a Max-handoff plan that will make it possible for Randy
to teach our class and run his lab meeting, for Max to get his weekly
blood draw and later get reconnected to his pump on schedule, and for
me and Max to attend Meghan's presentation.
Almost everything unfolds according to plan. (The blood draw runs a
little late, so we probably won't get results until tomorrow.) But as
Max and I are heading out the door, the g-tube area in his stomach
springs a leak. It's no big deal -- a big spit-up of sorts, except
out the stomach -- and can happen after a vigorous nursing, like the
one Max had just helped himself to. It takes time to clean and
re-dress it though. We end up missing the big event.
I'm disappointed, but it helps that everything is relative. This is
much better than what happened as I was walking out the door
Thu Apr 26, 2007
I rediscover dancing with Max. It has been a while. He has been busy
playing the piano, picking new books over old ones once again, and
sitting like a big boy at his "work station" -- on a box in front of a
step that functions like a desk. The sitting helps him strengthen his
torso and practice weight-bearing on his feet, and unlike most of his
physical therapy, seems endlessly entertaining. But dancing may be
the greatest fun. Max's giggles provide a good antidote to his labs,
which have worsened slightly this week. A blip, which Dr. Puder
assures us (again) that they're accustomed to seeing, particularly in
older babies like Max. My quads are burning after 5 minutes of
squealy bouncing, so I hand Max over to Randy for the next song. As
I'm walking away, I caution, "Don't be too crazy, I just nursed him."
I turn back to see Randy swinging Max around upside-down by the
ankles. And Max giggling.
Fri Apr 27, 2007
Max spends the day with Nurse Barb. I feel restored, revitalized,
ready and able once more. And today is my day of teaching and
meetings at school, so Barb's visit doesn't even technically affect
me. It's just knowing that she is taking care of Max, and feeling
vicarious relief through Randy. Or maybe it's the most delicious
chicken-bean-avocado soup ever to exist, which she cooks up for
dinner. Whatever it is, it's good.
Sat Apr 28, 2007
Randy looked at me the other day and asked if I was nuts. We were out
doing errands, and I suggested getting a toy for Max. I think we've
bought him a grand total of 4, so I was feeling some kind of
provisioning void. But yes, I was nuts -- Max has enough toys for all
the neighborhood kids, not to mention the dogs and cats.
He will be 1 year old in one month. (He celebrates his 11-month
birthday by refusing to miss a minute of it, and taking his
nap-deprived fussiness to farmers' market brunch with housesitters
Andrea and John, through a nanny interview, and on to dinner with
Toshio and family.) We hope to throw him a big birthday bash -- most
likely on Sunday May 27 (if you'd like to pencil it in), but you just
never know. It would be nuts for him to receive any gifts. It's
worse than nuts that other kids who need Omegaven are not receiving
it. Word is spreading, but there are still babies with progressing
liver damage whose families are being discouraged from pursuing
Omegaven. So if you know anyone who can help Omegaven reach and save
more kids -- a nurse, a journalist, a philanthropist, Oprah -- please
spread the word. That would be a great gift to celebrate Max's first
Sun Apr 29, 2007
Max gets his second haircut -- another quick-snip job by Dada. Lots
of snips. During another nanny interview this afternoon, I can't stop
remarking how cute Max is. It's a little embarrassing in retrospect.
The nanny can't get over how much hair Max (still) has.
Mon Apr 30, 2007
Randy thinks Max is starting to recognize that he has some stuff on
his body that the rest of us don't. Maybe Bennett Clarence will come
in handy sooner than we thought. He's the Cabbage Patch Kid
configured just like Max -- a unique gift from Austin's mom.
I once tried to tell a free-spirited aunt that Randy and I thought she
was unique. I didn't know the Japanese word for unique, so I
constructed the phrase "futsuu-janai," or typical-not. Although this
comment might come across as an insult in Japanese culture, which
emphasizes fitting in, I explained that futsuu-janai would be a
compliment in America, which emphasizes standing out, and this was how
we meant it. I even described studies showing that Eastern and
Western students differ in what they pick when presented with several
blue pens and one red pen: Easterners pick a pen from the majority
color, Westerners pick the uniquely colored pen. I was rather pleased
with myself for conveying all of this in my broken Japanese.
Later in the trip, we met with the late Giyoo Hatano, a developmental
psychologist. He took us out to lunch in Tokyo with his lab group,
which seemed unusually large. I suggested that he might be
futsuu-janai in the number of students he was advising. The students
tittered and looked at the floor. Giyoo explained that futsuu-janai,
when applied to a person, means insane.
I don't know what my aunt thought about us earnestly calling her
insane, in a complimentary American kind of way. But it's quite
alright to be unique. I hope we can do a better job conveying this
idea to Max.
Wed May 2, 2007
When we said good-bye in Jamaica Plain, Christian's mom gave Max
specific instructions about how much to drop his bilirubin each week.
She was pretty demanding, but Max comes pretty close to complying with
today's labs. His bilirubin shows the second-biggest decrease since
he started Omegaven, and his CRP is down to .4. We're in the realm of
Thu May 3, 2007
We're getting used to supervisors being called over to deal with us,
like in airport security lines. Today it's at the post office, when I
drop off a large box of used needles. I go through 6 a day, injecting
additives into Max's TPN bag before it gets hooked up to his pump.
The needles must be disposed of in a special container and shipping
box, which is marked Biohazard. The postal worker takes one look,
says "Scary," and summons his boss. That's how I used to feel --
unqualified to handle this stuff, and terrified that I would touch a
sterile surface to a non-sterile one and end up sending Max back to
the hospital. But the once-laborious process of injecting the
additives is now an easy 15 minutes that I almost look forward to.
It's protected time, like showering (when it happens) or brushing
Fri May 4, 2007
Max is done with sitting. For months, he has been able to sit
independently and play with his toys almost indefinitely. But now, as
soon as he is set down, he agressively thrusts himself backward onto
the floor, refusing to sit. I worried that he was in some kind of
pain. Randy chalked it up to rebellion -- a precocious terrible twos.
The more likely story, it appears, is that Max is more interested in
moving than in sitting.
Increased interest is a big step. Max's abdominal surgeries limited
his early belly time, which limited his upper body strength. So his
first maneuverings, in Boston, were on his back -- elbows out,
gyrating his hips. We called it the Chris Farley dance. Max could
navigate all around his crib with it. He's honed that dance so that
he can now spin a precise 360 in 5 seconds flat.
The Chris Farley satisfied Max's needs for some time. But as he grows
impatient with sitting, he's getting stronger on his hands and knees.
Randy and I think we can detect small changes day to day, confirmed by
nurse-nannies Kristin and Barb delighting in his progress week to
week. He's raring to go. So we're shifting our physical therapy
routines from sitting to crawling -- helping Max get wherever he wants
to go, whenever he's ready to go there.
Sun May 6, 2007
Last Christmas, Randy gave Toshio a couple of model airplanes. Toshio
unwrapped them and asked, in genuine wonder, "Why do you keep giving
me these?" I think the answer was that Randy didn't have anyone else
to give them to.
Toshio celebrates his 6th birthday this afternoon with a party at
Pump-It-Up -- a room filled with enormous inflatable structures,
blaring music, kids romping and screaming. It is clearly the craziest
scene Max has ever witnessed. He greets it with appropriate
astonishment, then turns his attention to happily whizzing down
inflatable slides with Dada, bouncing on an inflatable arena with baba
(who is visiting for the occasion), and watching the big kids go go
go -- including Mama and Dada racing on the inflatable obstacle
We give Toshio the game Battleship. His excitement upon receiving
something he actually wants is evident. He should thank Omegaven.
Max may ultimately react to model airplanes with the same puzzled
disinterest as his cousin, but Omegaven means Randy can now imagine
sharing these gifts with him someday.
Wed May 9, 2007
When Max sleeps more than usual, Randy figures that he is growing.
When Max sleeps less than usual, Randy figures that he is digesting
more of his food. I can't fathom this kind of relaxed optimism.
Randy can't understand why changes in each direction worry me.
Randy gets the first look at Max's labs from today. Max comes close
once again to meeting the strict specifications from Christian's mom
for dropping his bilirubin. His CRP is less than .2. We dance a
When I take my own look later, I see the one blip in the labs -- Max's
hematocrit is continuing to drop, as it has over the last few weeks.
He may need a blood transfusion, which we had thought was generally
unnecessary once kids start Omegaven. Adding to my worry, Max's stoma
output (which we measure) has been increasing over the last couple
weeks for no apparent reason. We'll watch these measures closely with
In true cape-and-tights form, Randy figures that Max's system is just
in flux as his liver heals so beautifully, and things will be back in
Thu May 10, 2007
We won't be having crepes on Mother's Day. Randy bought all the
ingredients last night, but a skin test this afternoon reveals that
Max is allergic to eggs and cow's milk. He hasn't been ingesting
them, at least not directly, but I have been. So out they go. The
good news (which we come around to after the initial dismay) is that
this is something we can control, which should help Max to be less
itchy. And the dietary restrictions may be temporary. Most kids
outgrow their food allergies. Maybe the promise of crepes will help
me through the sorrow of weaning, which is getting harder and harder
to imagine facing someday. All of the other dozen allergy tests come
back negative. The cats can stay.
Fri May 11, 2007
Omegaven has eggs in it. Or more precisely, an emulsifier (lecithin)
derived from egg yolks. Precision is important, because it is the egg
whites that Max is allergic to.
GI Jason recommends that Max stop nursing for 1-2 weeks, while the egg
and milk products in my system clear out. (Two weeks is his initial
estimate. One week is what he comes back with after seeing the look
on my face.) Max's continuous g-tube feeds will also switch from 1/2
breast milk to pure formula during this period.
Sat May 12, 2007
One of my pregnancy books suggested that being pregnant provides an
excuse for getting a whole new wardrobe. That prospect held little
appeal for me. But, I'm pretty excited about exploring whole new
cuisines as a result of Max's milk and egg allergies.
It probably helps that we started our non-lacto-ovo explorations with
ice cream. And that we're in the right place at the right time, as
the clerk at our local gourmet vegan market puts it. What probably
helps the most is that our impressions of this otherwise futsuu-janai
restrictive diet were shaped by postdoc Nicole Speer. Her savory
vegan "chicken noodle soup" nourished us through Max's staph infection
in January, and gives us hope for our revised Mother's Day breakfast
menu -- vegan crepes!
Sun May 13, 2007
On Max's birthday, 50,000 people will take to the streets of Boulder.
It's the BolderBoulder, the annual 10K race that closes off many
roads. The apartment we were renting last year was right on the race
course. We were worried we'd get blocked in and show up on the
evening news ("Runners assist with parking lot birth!"), but Max had
the good sense to arrive the night before the race.
That's a lot of people. It feels like it took at least that many to
get us here, celebrating my first mother's day as a mom. Not just in
the Bill Bryson sense of the crazy improbability of any of us existing
at all, of every single one of our ancestors on both sides being
healthy and lucky enough "to perpetuate the only possible sequence of
hereditary combinations that could result -- eventually, astoundingly,
and all too briefly -- in you." I mean all the people who have
allowed Max to live, and our family to thrive:
from surgeons to scientists, stoma queens to social workers, students
nurses to neonatologists, nannies to NICU neighbors
colleagues to case managers, catsitters to crazed groupies
GI docs to g-tube specialists to journalists
allergists to anesthesiologists
insurance representatives to infectious disease teams
lactation consultants to Learjet pilots
occupational therapists to obstetricians to Omegaven-providers
housemates to home health care to Hirschsprung's families
donors to dieticians to doulas
pediatricians to parent networks
radiologists to remodelers
transplant and transport teams
vegans to video skype developers
pharmacists to physical therapists to family and friends
They make it possible for us to celebrate over crepes today.
Mon May 14, 2007
Randy and I love hearing stories about kids coming off of TPN. We
obviously hope that Max will too someday. We don't know when or if it
will happen though. So it is also nice to hear, as we do today, about
a boy described by his mom as living a life full of Little League,
football, swimming, snorkeling, traveling, eating, and TPN.
Wed May 16, 2007
When we left Denver for Boston, we got the feeling that Max was viewed
as a bit of a guinea pig for this region. Now he's being described as
His bilirubin continues to drop, gradually with today's labs, and his
CRP is still less than .2. His hematocrit is back up (thanks to a
blood transfusion last Friday) and we're working on his high stoma
output (via a 5-day course of an oral antibiotic, flagyl, starting last
night). We dreaded both treatments, unnecessarily. It's draining and
dismal, roaming the hospital corridors for several hours with an IV
pole and a bag of blood, but the transfusion is straightforward and
effective. Max may need these periodically, because it's hard to
absorb iron with a short gut. We can work on ways to see if he'll
absorb more, particularly as his feeds increase. Iron isn't generally
given through the IV because bacteria like it too much.
We dreaded the antibiotic, mainly because we hadn't dealt with it
before. But this is standard treatment for bacterial overgrowth in
the functioning intestine of short gut kids. (The main symptom for
such overgrowth is unusually high stoma output, which Max has had for
the last week.) Many kids take these antibiotics preventatively,
cycling through different kinds to prevent antibiotic resistance.
It's easy to administer the flagyl straight into Max's g-tube. And
miraculously, he seems to have barely noticed the ban on nystatin,
which is incompatible with flagyl.
We'll keep working toward a little less dread of the unknown.
Thu May 17, 2007
You just never know. But our plan is to celebrate Max's first
birthday at our home in Boulder, on Sunday, May 27, 1:00-4:00 pm.
We'll post any updates to the plan here.
You and yours are invited -- please just make sure you are healthy
with well-washed hands! We'll provide drinks and snacks. Freel free
to bring something for the grill for yourself, and/or a side to share if you are so inclined.
In lieu of gifts, please help spread the word
if you can (or help brainstorm ways to spread it). Randy and I have
faced enough ridicule for how much stuff Max has (even though we've
bought him next to nothing, really!). So please bring yourself -- but
no gifts -- to celebrate with us.
Sun May 20, 2007
My milk from the last 8 months of pumping is gone in minutes. Just
the time it takes to load it into two hefty coolers for a milk bank
donation this afternoon. I'm grateful that it will sustain other
babies, instead of being discarded in light of the recent vegan turn
of events. And these gallons are an easy price to pay for the chance
to nurse Max all this time -- nourishing him in restaurant parking
lots when we forget to pack his food, calming his frenzies in a
hospital conference room or zoo parking lot, and relaxing with him at
home after a long day. If I could magically share a single feeling
with Randy, it would be this one, of satisfying Max's needs so
completely in these moments. The closest I'd come to this feeling
before nursing Max was stroking the ears of our purring kitties. So,
it is sad but not devastating, parting with the milk intended for Max,
and turning to allergen-free nursing and replenishing his supply.
Mon May 21, 2007
Grandpa Dick doesn't mean to be ungrateful. So he tells us, over
dinner with Grandma Julia during their visit from LA this weekend.
But he has to say, with a wink, that he finds this visit much more
enjoyable than previous ones. When they came last summer, Max had
just moved from the Children's Denver NICU to the longer term care
area. Randy and I were commuting from our temporary apartment in
Boulder, and Grandma and Grandpa ended up in a sad hotel near the
hospital. When Grandpa visited Boston, he joined our bitter cold trek
to the hospital and our much-appreciated but very tight living
Now we get the family visit we wanted. Max discovers the fun of
window-shopping the pedestrian mall in Grandma's arms, and of
glasses-grabbing from a relatively tolerant Grandpa. All the playing
and excitement help Max rediscover afternoon snoozes in his stroller.
Randy and I do need to send Grandma and Grandpa out for daily errands,
but only one is medical -- to replace Max's flagyl after we forget to
refrigerate it. (The antibiotic seems to be normalizing his stoma
output.) The other errands are happy -- more food for the grill, more
syrup for our vegan crepes encore. We are all grateful.
Wed May 23, 2007
An M.D. in Randy's lab recently asked what Max's actual bilirubin
numbers are. He's one reason I don't talk about actual numbers.
In grad school, Randy carried around a daily planner -- one of those
leather-bound all-in-one calendar/address-book/organizers. The rest
of us kidded him about its pretentiousness, on par with the briefcase
he carried around in college. The day he left the planner sitting on
his desk unattended, we pounced. Rifling through it was just silly
fun, until we came to a page that listed his neck size. Stumbling
upon this number suddenly made us feel like we had crossed a sacred
line, violating his privacy.
Max's actual bilirubin numbers also feel too personal to me, at least
while they've been at levels that M.D.s would see as shockingly
high. But he continues on his gorgeous trajectory with this week's
labs. His bilirubin is down to his lowest numbers on record (back to
last June), which is just above the point where the Boston team
switches from weekly to monthly labs. This is good timing, because
Denver plans to cut back on his labs to let him keep a little more
I quickly forgot Randy's neck size in grad school, and only retained
the endearing fact that he carried around a piece of paper documenting
it. I hope we'll soon be past graphing Max's liver scores, and will
just think back to how miraculously he pulled through these
Sun May 27, 2007
My first PhD student is a weepy type. (At the university reception
when she graduated years ago, she began her prepared speech by
thanking me profusely, got too choked up to continue, and sat down.
Her parents and siblings seemed to take it okay, but her husband
proceeded to point out as each of the subsequent speakers thanked
their families.) My eye falls on Jennifer as we sing Happy Birthday
to Max at his party this afternoon. The tears in her eyes release me
from party-hosting mode and overwhelm me with an appreciation of the
Our swamp cooler conveniently blows out the candle for Max as the cake
is presented to him. But he is unimpressed with the vegan banana
cream cheese offering, and opts for two breaks from the party to nurse
instead. He hangs out pretty happily in the arms of students, family,
friends, colleagues, neighbors, and nurses. And on the backs of
romping kids. (People continue to collect data and refine theories
about the arms he's less happy to be held in. It's not about facial
hair. Or not only about facial hair.) Max seems pleased with the
celebration, like it's about time we had some excitement around here.
Give or take a little weepiness.
Top of Page,
Max's Second Year,
Max's Third Year,
Max's Fourth Year,
Max's Fifth Year,
Max's Sixth Year
Please keep your emails coming! We can't always respond, but your
support and updates from the outside world have really helped to keep
Check back soon for more details and updated photos.
Website copyright 2007 Yuko Munakata (munakata AT colorado.edu).