Max, smiling

Max, smiling
Originally uploaded by andreas.lehnert

Here's the happy little man himself, enjoying some playtime.

Why don't we like orphanages

Carolyn and I had a family meeting with the HSC team to discuss their plan for Max. They told us that, on this coming Monday, they plan to pull Max's NJ tube back out of his jujenum and into his stomach, converting it into a more standard NG tube. They will wait a couple of days to see if his reflux has subsided enough for him tolerate large quantities of food hitting his stomach (under the current arrangement the food bypasses his stomach and trickles directly into his intestines). At first, Max will be on continuous night-time feeds (as he is now). After a few days, the HSC team will start compressing his feeds. This brought back memories of the trials Max faced at Georgetown trying to get his feeds down to less than 90 minutes. If Max doesn't tolerate an NG tube the HSC team said "we'll consult with a GI specialist and decide what to do next." We know, however, that none of those choices are good.

As we talked about the family meeting afterwards, Carolyn and I realized that we had just signed up for at least another month at HSC, and that if Max failed to tolerate NG feedings, an unknown further stay while his other options played out. In the back of our minds were the two-year old children we see at HSC, who have the diagnosis of "complications related to cerberal palsy"--a diagnosis that wouldn't be wrong for Max. We started adding up the pieces: somewhat aimless treatment regimen plus the presence of older children equals the possibility that Max could be at HSC for months and years to come. We simply can't keep up the same heavy schedule of visits that we have been for such an extended period. Of course, most families can't either. The HSC, in effect, is an orphanage.

This prospect has galvanized Carolyn and me. No matter what happens with Max's feeding trial over the next few weeks, we are going to bend our efforts towards getting him out, and out soon. I also plan a private conversation with the HSC attending to find out under what minimum conditions they're willing to discharge Max and, incidentally, what all those older babies are doing there.

One way or another, potentially after one or more surgeries and with all sorts of feeding equipment and medical support Max will be coming home. Because Carolyn and I don't like orphanages. And we had several reminders today of exactly why it's hard to have strangers raise your baby. Exhibit A: Max's nurse who laughingly said that Max is a well-known manipulator of grownups and that we were going to have to let him cry rather than spoil him by picking him up to soothe him. This was said lightly, and in passing. Of course the HSC nurses don't let babies cry for extended periods (I've watched them about their business at odd hours and they never let a baby cry more than a few minutes). But this was a grating reminder that Max is being cared for by people who don't necessarily share our parenting philosophy. (Summary: Max has had a hard time of it and deserves high doses of cuddling on demand.)

Perhaps the only member of the family who isn't convinced of the need to get Max home is Max himself. He appears to hugely enjoy his life at the HSC. From what we can tell, he spends most of his time smiling and playing. Carolyn captured some video of him laughing happily.

Learning and forgetting

Max's nurse told Carolyn this morning that we needed to get Max home before one of his growing court of admirers pulled a "code pink" and ran off with him. (Note--this is a joke. Security is really tight at HSC.)

Carolyn arrived this morning in time for a back-to-back PT/OT session, held in the playroom. All told, Max got in more than an hour of grueling therapy. The current thinking is that he is definitely favoring his left side; the danger is that he might lose the ability to turn his head to the right, because it is often flopped over to the left. Carolyn thinks that Max is doing a little better on his head control. We have both noticed, however, that he seems to have forgotten some his tricks--he no longer turns his head from side to side during tummy time, for example. The physical therapist said that this was not uncommon, and that it was okay for Max to forget some skills as long as he was trying to learn new ones.

This dictum that "forgetting while learning is okay" struck me as carrying value outside the narrow world of physical therapy. It joins a few other sayings that, to me, seem to apply far beyond their original settings. For example, consider the standard assurance at day care given to nervous children: "Mommies always come back". Or, more mystically, the parking signs in Arlington that read: "Any may park, all must pay".

Max did extremely well on his bottle feeds today, taking 25 ccs or more at each feeding. It's useful to consider that, while on his very best day, Max might take 90 ccs all told by bottle, he gets more than 650 ccs overnight. Bottle feeding is more of a hobby for Max than a serious way to get nutrition into him. He will be on some kind of tube for a long time to come.

Carolyn asked for a family meeting tomorrow to discuss the HSC's plan for getting Max home. Unlike other family meetings, which have typically been about assessing Max, or a way for the NICU team to deliver bad news, we hope tomorrow's meeting will be more forward-looking. We feel, perhaps incorrectly, that we know as much as there is to know about Max's problems, and we'd like to understand how we're going to get him home.

Max at night

Because of various scheduling issues, I didn't get to HSC until around 8:00 PM, which meant, in turn, that I didn't leave until after 10:00 PM. Neither one of us has ever stayed at HSC past 7:00 PM or so at the very latest. (We often try to leave earlier so we can maximize the amount of time spent parked on I-395.) The HSC at night is not quite what I had imagined. For one thing, it's a little louder and busier than I expected, with nurses, techs, etc bustling around. For another, there are far more parents than I'd ever seen before. Although Carolyn and I find the commute to and from HSC vexing, I think that we have it very easy compared to many families.

According to nurse D., Max had had a very big day. He took a record amount by bottle: 40 ccs at 9:00 AM, 30 ccs at noon and 25 ccs at 3:00 PM, without vomiting any of it back up. D. said that Max was awake the entire day, and that he didn't want to go to sleep in the evening. She put Max into his stroller and took him on a little tour of the HSC ward to help settle him down, and he finally dropped off to sleep minutes before I arrived.

I was a little worried about waking Max after such a big day. And, indeed, he was squirming in his sleep, suggesting he was only lightly asleep (Carolyn and I refer to this sleep state in children as "chasing bunnies in their sleep"). When I took pictures, I made sure to have the flash off (which resulted in some interesting blurring because Max was twitching in his sleep). But around 9:00 PM, D. told me it was time to change his diaper and give him some medications. I watched (and took some pictures) as she changed his diaper, applied diaper cream and put some medicine down his feeding tube. Max clearly resented the intrusion and kept his eyes firmly shut throughout. He was clearly dedicated to staying asleep no matter who committed what outrages against him. His months in the NICU have hardened him to even more chaotic environments, and more painful and invasive midnight procedures. Max has learnt to sleep like a Marine. In the end, even the presence of his father was insufficient to rouse him again after his big day.

Bath day, take two

Carolyn spent most of the day with Max. He was happy, smiling, playing and generally very happy to see his mother again. He was, however, wearing hospital clothes, despite his father's best efforts to keep up with his laundry. I asked Carolyn whether she'd noticed a change in Max since she'd been away; interestingly, she noticed more of a change in Felix, who is currently going through the standard exponential flowering of verbal skills that always amazes and delights parents. Max, she thinks, is as cute as ever.

Carolyn did get to watch Max get bath, even though he wasn't due for another until tomorrow. Max's nursery (shared with up to five other babies) has a deep sink designed for bathing babies. The nurse showed Carolyn how to give Max a bath--it turns out there's nothing special about bathing a special-needs child at this age. At some point in the future, as Max grows and if he doesn't get control of his head and trunk, we may need some extra equipment. But for now, he just needs the standard bath that parents have been giving newborns since the dawn of time.

In other news, Max's special friend from Georgetown, Nurse R., may be paying him a visit in the next few days. Given Max's interest in grown-ups, we expect this to be a big hit. Just look at him hamming it up in this picture from his last days at Georgetown:

Bath day

I arrived at HSC this afternoon just after Max had gotten his 3:00 PM bottle. He was sleeping on his stomach but clearly dreaming of something. I let him sleep for a while. However, it was bath day so whenever Max woke up L. and I were going to give him a bath. (The HSC follows the dictum of letting sleeping babies lie, something I appreciate.) When I left for a previously scheduled conference call Max was still sleeping. When I got back, he was in his stroller and wearing a new outfit. I missed the bath. It's not a total tragedy however; bath day is every other day at HSC so I look forward to more opportunities.

Max and I played with his moose and his rattle. I took advantage of his position in the stroller to wheel him around the room. The nurses like to keep him in his stroller where he can see them. Max really enjoys watching people at work. It seems that he gets upset when left in his crib with nothing but a mobile to stare at.

Tomorrow Max has an even bigger day than bath day---he'll get to see his mother again after several days' absence.

Max sleeping like a baby

Max sleeping like a baby
Originally uploaded by andreas.lehnert

When I got to HSC this afternoon, I found Max deeply asleep (see video). Shortly after I arrived the sales team from Kid Kart showed up. Kid Karts are strollers that hold babies upright and support their heads. Each one, in principle, is customized for a given baby's dimensions and specific needs. (For example, Max doesn't need the attachments for foot splints.)

Around 4:00 PM nutritionist S. dropped by to say that she had some very urgent news for me and that she wanted to make sure I would be around at 4:30 when a meeting she was going to was scheduled to end. Had any other specialist--physical/speech.occupational therapists for example--made a similar scheduling, I would have been in agony for the thirty minutes while waiting their return. However, I reasoned that there was literally nothing bad a nutritionist could tell me. And indeed, S. just wanted to tell me about some technical adjustments to Max's nighttime feeding schedule and technology (he may be getting a pump instead of the usual drip bag).

I put Max through a mild PT workout, had some tummy time and worked on head control with him. Max was unable to complete a few of the exercises (e.g. lifting his head). But he never stopped trying; I had to give him a break after he'd struggled continuously for five minutes. After all that, he was ready to burrow into my armpit and take a much-deserved nap.

Max studies swallowing

Max Sees the Sun
Originally uploaded by andreas.lehnert

For perhaps only the second or third time in his life, Max went a day without seeing either Carolyn or me.

He had another outing to Children's today (his third of the week), for a barium study of his ability to swallow. The HSC team were looking for signs that Max aspirates--i.e. inhales--his food while being bottle fed. Second-hand reports are that Max showed no signs of getting his lungs and stomach confused. However, he did throw up all of the barium they fed him. As Carolyn said: Who wouldn't?

I leave you with this video, taken during yesterday's trip back from Children's Max is staring out the window at the sky, trees and sun. At the very end, the van enters a sunny patch of road and Max catches a blast of sun directly in the face. I think his expression is one of delight.

Going to Children's

Going to Children's
Originally uploaded by andreas.lehnert

Max takes a trip to Children's hospital. He wakes up at the very end and is delighted to find himself someplace other than the HSC (nice as it is).

Max's big week continues

I got to HSC in time to give Max his noon bottle. However, the new-fangled Dr. Brown's feeding system was a little too complicated for me to figure out, so Max only got down nine ccs, less than two teaspoons. We had to hurry, too, because at 1:00 PM we left to go to Children's. This was my first ride over in the HSC van. Nurse L. came with us and played Virgil to Max's Dante; without L. Max and I would still be trapped in fifth bolgia somewhere. Children's Hospital of course is the home of the elevators that stop at floors marked "1", "1.5", "2", "2.5", "3" and "4". We were headed for "4", which might be something like the sixth storey off the ground.

At Children's, Max, L. and I met with the pediatric neurosurgeon, B., a man who stands out not just for his irrepressible optimism but also for his endearing habit of deriding his colleagues' tendency towards pessimism. B. is famous in our household for the dictum "treat the patient, not the x-ray" and for encouraging us to "bet on Max". Notwithstanding this, B. spent quite a bit of time examining Max's CT scans. He also, however, examined Max, whipping out his own tape measure to confirm the readings maintained by the HSC staff.

How positive is B? Where other doctors have described Max's ventricles as "dilated" and "abnormal", and have discussed the consequences of Max's "ventricomegaly", B., told me that Max had "generous" ventricles.

B. diagnosed Max as having "arrested" hydrocephalus. He said that he didn't see any clinical signs of high intracranial pressure. B. said that he was guided by the feel of Max's fontanel (me: "I always feel queasy palpitating the fontanel", B: "why? It's just the brain?"), something he said might make him seem old-fashioned. Far from it. What made B. seem old fashioned was the report he wrote in longhand on a form with two carbon copies. Press hard! (To be fair, this procedure seems to be standard practice as Children's; B. keeps a full array of modern computers in his office).

On the drive back, Max was fascinated by the outside world, staring at the trees, sky and sun. Once safely back inside HSC, I left Max's room and went to the family room to call Carolyn. While I was on the phone with her, one of the nurses wheeled in Max in his stroller and then left Max and me alone. To have the same privilege, Carolyn had to watch a video and pass an infant CPR test. Why did the HSC staff bend the rules for me? I suspect it might be because I am that rarest of creatures: a father visiting his child during the daytime. But more on that some other time.

Max's car ride to Children's

One of the graduation rites from any NICU is the "car seat test". When a baby is deemed almost ready to go home, his parents bring in his car seat and the NICU team put the baby in it while he's hooked up to a full monitor. The "test" is to see whether he tolerates it or not. Carolyn and I actually got to see a couple of car seat tests in our time at Georgetown, but when Max moved to HSC he did so in the comfort of a "transporter", a device that mimicked a NICU isolette while also appearing capable of withstanding an IED explosion.

So it was a little surprising when the HSC team put Max into a perfectly ordinary car seat for his ride to Children's hospital. He, Carolyn and a nurse took Max (in an HSC van) to Children's Hospital for a CT scan. Max tolerated his time in the car seat quite well, so I guess he passed a real-life version of the car seat test.

Max's trip to Children's today was the first of three planned for this week: tomorrow he and I go to see a pediatric neurosurgeon and on Wednesday he will be getting another barium study of his ability to swallow. At tomorrow's meeting, we'll find out whether he's a candidate for an indwelling shunt to control his hydrocephalus.

Carolyn reports that Max really enjoyed his car ride. He was very calm throughout, and stared out the window at the world going by. Here's a picture of Max looking out the van window.

Reminders from Georgetown

I've begun looking into the history of preemie care, and it's as bizarre as anything else in medicine. Did you know that preemie wards were called "hatcheries" and open for public viewing? This may actually be true.

In the modern NICU, tens of thousands of families have had experiences just like ours. While babies of Max's gestational age normally spend seven weeks or less in the NICU, some, like Max, stay much longer. And "micropreemies" can stay several months. So it's not uncommon for parents to form attachments to NICU team members, especially the nurses. Many families feel a little lonely when their baby leaves the NICU, just like we did. So it's always nice to get an email from one of Max's old nurses. Nurse S. dropped Carolyn a line recently and attached some pictures of Max's last night at the NICU. S. said that the NICU team still miss Max, which is nice to hear, but, I'm sure, they have an all-new class of sick babies and their parents to nurture now. As much as Max, Carolyn and I miss the Georgetown NICU team, Max will not, I hope, return to Georgetown as anything but a robust toddler who threatens to tip over IV trees and generally runs amok.

Max too will ride the helter-skelter

Before it was a vaguely sinister Beatles song, "helter skelters" were those twirly playground slides. It seems that there's a family tradition of enjoying them. I swear a mighty oath that someday, Max too will ride the helter-skelter.

Max's new room

After hearing about the long waiting list to get into HSC, and the delays in getting admitted, we expected an absolutely packed facility. But, in fact, there are plenty of empty beds. Much like the Georgetown NICU, when the number of patients dips below a certain threshold, they consolidate everyone into one room. So it was that today Max moved to the other preemie express room. Fortunately he got exactly the same position near a window that he had before. However, with four other babies, it is a bit noisier than his old room.

Max did well with his bottle feeding today, taking more than 30 ccs (that's two tablespoons) before conking out. While he continues to be in distress from reflux, Max seems to have given up his habit of vomiting back up 20+ ccs, probably because his food is now mainly bypassing his stomach altogether.

Below is a picture of Max and a visitor enjoying each other's company.

Trip to the playroom

Tonight's agenda includes figuring out how to download pictures from the new camera. So far, we haven't taken very many of Max, but no doubt that will change as soon as we find the software settings to take the camera out of the mode designed to optimize photographs of fireworks displays (this is a poor way to photograph people in daylight, in case you were curious).

Max is either becoming fussier (perhaps because he's bored), or his reflux is getting worse. He didn't eat very much at his three bottle feeds today. Carolyn reports that while he slept for a while after his noon feed, after about 30 minutes he started arching his back and wailing. She asked the HSC attending, Dr. H., to check to make sure all of Max's medicine doses had been updated for his weight.

Carolyn took Max on a little trip to the playroom, their first unaccompanied jaunt. They had some tummy time and then Carolyn helped Max sit up and work on his head control. The presence of a couple of other very upset older babies kept Max from fully enjoying the experience, but he nonetheless seemed to have a good time. It certainly exhausted him, and he was deeply asleep in Carolyn's arms before they had taken the six steps back to his room.

Dr. Brown's Patent Medicine Bottle and Baby Soother

HSC's speech therapists have switched to using a "Dr. Brown" style bottle, advertised as sovereign against colic, gas and feeding related difficulties. Although the name has a hint of quackery about it, it is in fact perfectly legitimate. Max seems to be getting more down and keeping it down at his bottle feeding. However, the HSC team want to see the results of next week's swallowing study at Children's before they commit to a revised feeding plan.

When Carolyn phoned in this morning, the charge nurse reported that "everyone is around Max and making goo-goo eyes at him". It seems that Max is easily bored in his bed and wants to be able to see the action, so the HSC team are trying to get him into his stroller more often. Because of his poor neck control and low trunk tone, they've recommended that Max get a "kiddie cart", which supports his head, when he's a little taller.

Max had a 45 minute physical therapy session in the playroom today. He managed to turn his head, something he didn't do yesterday during his assessment. The official grades came back and Max scored poorly relative to other preemies. But as Carolyn noted yesterday, even as he was failing at some of movements during the assessment, he kept trying. It would be a different matter if he got frustrated and gave up, but that doesn't seem to be his character.

Max catches a fish

Max catches a fish
Originally uploaded by andreas.lehnert

This video shows Max grasping for the friendly fish (a toy his older brother also enjoyed). Watch Max catch the fish and drag it to his mouth, all in a thrilling, developmentally appropriate way!

No "A" for effort

Max had a busy day at the HSC; in addition, several patients are leaving which added to the general aura of bustle.  Also, Carolyn reports that, mysteriously, the floor was waxed in the middle of the day using an industrial buffer.

At noon, the occupational therapist, A., took Max (with Carolyn tagging along) to the playroom.  Last week, he tolerated the playroom for only 10 minutes.  Yesterday he spent an hour there with his brother, mainly in his stroller.  Today, the therapist worked on arm stretches, tummy time, and shaking a rattle.  According to A., babies find the playroom stressful because it's a more open environment than they're used to and there are stimulating visuals in all directions.  Max, however, enjoyed his time there.

Physical therapist M. and her assistant came to give Max a formal assessment.  Testing took 45 minutes; Carolyn said she was worn about by the time it was over.  The results didn't have any surprises.  Max got poor marks for his ability to bring his arm around when partially turned over, and more or less failing grades for his trunk tone and head control.  He also didn't turn his head when prompted by M., although this is something I've seen him do many times.  That part of the test came at the end of the assessment and Max was probably too tired to perform.  As always, Max got excellent grades for his state of alertness and his social interaction.  M. appears to have been captivated by Max and was apologizing to Carolyn for having to give him poor marks on so many areas.  Carolyn explained that "no one gets an 'A' for effort".  M. seems to be rooting for Max in a way that's--in our experience--a little unusual for therapists.

Carolyn  and I debated tonight whether Max was manipulating adults--for example M.--or simply charming them.  I argued that, during the stone age, babies must have learnt the survival skill of getting adults to give them food, attention and love.  To me, this seems like manipulation, but not in a bad way.  Carolyn feels that Max is a happy, charming baby who enjoys seeing peoples' faces.  Several of the HSC team have remarked that Max will sometimes cry until an adult face enters his field of view.  Indeed, the nurses sometimes keep him in his stroller by their station so he can watch them at work.  I've come around to Carolyn's point of view, even though I think Max's charm offensive probably gets him a little extra attention.  Max is a fundamentally happy child who enjoys spending time with people.

The replacement camera arrived today, although we're still trying to figure it out.  Carolyn took the video camera in, and I'll try to edit and post some content tonight.

Visiting day at HSC

Carolyn drove with Felix and our friend D. ("the baby whisperer") to HSC to arrange a summit meeting between Max and Felix. The meeting wasn't recorded because Felix seems to behave differently around a video camera. The protocol of the meeting was more elaborate than when Reagan and Gorbachev met at Reykjavik in 1986 and stage-managed by the child-life specialist, N.

It turns out that there's a best-practices manual for introducing older siblings to hospitalized infants. Felix was coaxed into one of HSC's lovely playrooms with the promise of a trainset. After playing for a while, Max was wheeled in, sitting in his stroller and disconnected from all leads and tubes (except for his feeding tube, discreetly tucked away and not attached to anything). He was wide awake and clearly highly stimulated by the new environment and people.

Carolyn introduced Felix to Max. Felix picked up one of his trains and offered it to Max in a move that, like many things children do, provoked strong emotions from the adults present. Max spent about an hour in the playroom with Felix and was wide awake throughout his visit. Felix, meanwhile, had moved on to other activities and was running up and down the equipment used for physical therapy. Max took it all in and struggled to stay awake but, when returned to his crib, fell into a deep sleep.

Blast from the past

Bath time at the NICU
Originally uploaded by andreas.lehnert

While we await the replacement of a new camera, I was scrolling through our older pictures and found this video of Max being bathed. He's less than two weeks old here. He certainly has come a long way.

Carolyn passes the CPR test

Max received his first piece of mail at HSC from an admirer: the case manager came into Max's suite carrying the envelope and announced, "Max got mail!" It was a cute green froggy card that elicited a big toothless grin (from Max).

Many members of the HSC team have told us several times that a characteristic of preemies is their habit of falling asleep when stressed out. Preemies are born into a chaotic environment and they have only shallow reserves of strength. They learn to shut out the world by dropping off to sleep if things get stressful. We've often noticed Max "playing possum"--pretending to sleep while keeping an eyelid cracked to monitor his environment. Max was smiling and playing happily today, and did well in physical therapy today. Afterwards, it was time for the 3 p.m. feeding and he was drifting off to sleep just before it started.

Max took quite a bit of food by bottle today. At the 3:00 PM feed, Carolyn got him to take nearly 40 ccs. Moreoever, he was more or less asleep throughout. (Fun fact: Babies can eat while sleeping, a practice sometimes known as "dream nursing".) We were excited because this amount brings Max back to his pre-HSC maximum level of oral feeding. Interestingly, the speech therapist said that babies with severe reflux often show a sinusoidal pattern in the amount they eat by mouth over time. They'll start off chronically hungry, eat more over time to satisfy themselves, and then experience a bout of severe reflux pain, so they stop eating much for a time. Speech therapists prefer to see babies eat the same amount for an extended period rather than rapid increases.

Carolyn reports that the nursing staff at HSC appear obsessed with helping her meet certain educational goals. They are constantly asking whether Carolyn wants to learn how to give Max a bath, mix medicines, make formula, and, of course, learn CPR. Carolyn was bullied into watching the video over the weekend but didn't want to put Max down for the required hour of practical demonstration. Today Carolyn took the test while Max got his physical therapy. Carolyn and Max both did well.

Physical therapist M. was excited when she noticed the reddened tip of Max's nose. M. said that babies get this when they turn their heads a lot during tummy time. Indeed, this is true: Last Friday I watched Max drag his head from side to side to track a toy I was slowly trolling in front of him. At the time I was a little sad that he wasn't lifting his head to avoid nose-burn (and because head control is so important). But M. told Carolyn that the red tip is a great sign. It shows that a baby is actively moving his head around. What's more, I realized that Max is doing much better than his older brother at tummy time. While our new camera is being delivered, here is an archive picture of Max's older brother showing his deep displeasure at tummy time.

A quiet day

It was a rainy and quiet day in Washington (aside from the St. Patrick's Day parade, way over on the other side of town). Max also had a quiet day, and really concentrated on eating. He got down 40 ccs at his 3:00 PM feeding--he appeared to be getting hungrier throughout the day. As of 10:30 PM he hadn't vomited any of his feeds back. I think this means he's gone more than 24 hours without an emesis.

His diurnal schedule seems to be aligning with the rest of the world's. He's alert during the day more, and the HSC team report that he's asleep most of the night now. The natural light coming in through his window (even if filtered through rain clouds) and the HSC's own schedule are very different from, and more salubrious than, the environment at Georgetown.

CPR training video

Carolyn drove straight to HSC from the airport, and spent about six hours with Max today. He gave her a huge smile when she walked in. Carolyn put Max through some of the new exercises physical therapist M. suggested yesterday, as well as a full set of the standard exercises. They played and otherwise had a nice afternoon. Max took 20 ccs by bottle from Carolyn and then slept for an hour. When he woke up he was in obvious pain from reflux: arching his back, wailing inconsolably and making chewing motions with his mouth. It's really unfair that 20 ccs--just four teaspoons--of milk would cause him so much pain an hour and more after he ate it. Carolyn and the HSC nurses tried a variety of remedies for reflux (the wedge, different positions, patting the bottom, etc) but none really helped. Carolyn and I find it difficult to leave Max when he's crying hysterically, but in the end she had to in order to spend the evening with Felix.

The other development of interest today was that Carolyn asked to disconnect Max from his leads and take him around HSC. The HSC team do this routinely (Max had just returned from a 10 minute expedition to the playroom when I arrived yesterday). However, for a parent to get the keys to the car, they have to pass an infant CPR course. Nurse C. showed Carolyn the video; Carolyn tried to pay attention while holding a somewhat fussy Max. Then Carolyn decided not to take the associated practical exam because of time constraints. The prospect of being able to take Max for untethered space walks is a strong incentive for us; we'll try to pass the test this week so we can show him more of the HSC world.

Shaky video day

I didn't get to spend as much time with Max as I would have wanted today because I got to HSC a little later than planned, and I then fell into a deep conversation with his physical therapist, M. She gave me photocopied handouts describing exercises to help Max control his head, his next goal. He's shown some early signs of interest, but of course he will take more neck muscles before he can routinely lug that huge head of his around.

Max's older brother recently destroyed my camera and I've been unable to buy a replacement because I'm paralyzed by the range of cheap, high-quality products available for purchase. Capitalism has been getting a bad rap lately, but it certainly does produce excellent cameras.

However, Max's older brother has not gotten his paws on my video camera. I'm embedding two videos (direct links here and here) that I took this afternoon. I've been trying to get Max to smile for the camera. But in the first video he's hungry and in the second video he's sated and sleepy.

Oh yes, I fed Max by bottle. He took 11 ccs from me and kept them down (at least while I was there). Earlier in the day he'd taken 28 ccs from nurse M. and kept that down as well. He's starting to approach his peak consumption at Georgetown.

Laundry day at HSC

I spent the afternoon at HSC with Max. I haven't spent this much time with him for at least a week, if not longer. I may have caught him at a good time but I was struck by how much Max is interested in people, especially in making eye contact and getting a smile out of passersby. This kind of hypersocial behavior is something new. For the first time, I was the recipient of one of Max's delighted toothless grins.

Max was awake and happy for almost all of my visit--several hours in a row. I felt guilty about not taking advantage of his relaxed and alert state so I put Max through several sets of stretching exercises designed to help his range of motion. I also gave him a rattle to grip and wave around, something he enjoyed doing. Finally, under the watchful eye of speech therapist L. I gave Max a bottle at 3:00. He did well, taking 15 ccs before needing to be burped. As is his pattern, he lost interest after his initial burst of enthusiasm.

I brought home a pile of dirty clothes and washed them. I'll take them back tomorrow; I think I'll just miss the shame of having a child dressed in hospital-provided clothing. It all depends on whether Max spits up on his last remaining clean outfit tonight. With the night feeding running through his nj tube, I think it unlikely.

Riding the 'J' train

Carolyn reports that all of Max's vomiting has produced a big pile of dirty clothes, which she had to leave at HSC because she went directly from the hospital to the airport. It's my responsibility now to make sure Max isn't wearing hospital clothes by Friday--an event that ranks with having a volunteer soothe your baby among the ways parents judge each other in these places.

Today was the first day of Max's new feeding plan. The HSC team first placed his feeding tube into his duodenum and then, later in the day, advanced it to the jejunum, making it an 'nj' tube. This is actually a tricky procedure, and requires an x-ray to judge distances. Max will ride the 'J' train--that is, get continuous feeds through his nj tube--from 6:00 PM to 6:00 AM. He will then have to rely on bottle feeding for the other 12 hours. I just phoned in to the HSC and nurse E. reports that Max is sleeping soundly and seems to be enjoying his ride on the 'J' train. (To be clear: no-one but me calls the nj tube "the 'J' train".)

Max's three bottle feeds today went pretty well. He took 20 ccs each time, and seemed to keep them down. Both Carolyn and the speech therapist noted that Max tends to be a motivated eater for the first few minutes at a bottle but that, once his initial hunger pangs are satisfied, he becomes less interested in eating. Presumably this is because he's become conditioned to expect a nice easy tube feeding after just a little work at the bottle. In the coming days he will, one hopes, adapt to the new regime where, during the day, he will have to earn every mouthful.

Finally, Carolyn reported that Max had a great physical therapy session today; he was smiling and happy throughout. He showed off his ability to track objects with his eyes both horizontally and vertically. (No word on his success with the tricky diagonal trajectory.) He also centered well, something we're really trying to encourage. It all left him extremely tired and he burrowed into Carolyn's armpit, his preferred sleeping position, for a long nap. Carolyn and I have each noticed that Max really works to get his head under our arms if he wants to sleep. I wonder if this is a reaction to the noise and light of the NICU? The HSC has a much calmer and darker environment during the night, so perhaps he'll get over this habit. We both like it quite a bit though.

First family meeting at HSC

Carolyn and I had an all-hands meeting with the HSC team today. Compared with the same meetings at Georgetown there were fewer doctors and more therapists, reflecting HSC's tilt towards lower intensity, family centered care. Carolyn made a big impression right away by introducing me to each of the specialists by name; not even the case manager could keep everyone straight. In addition to the standard set of therapists (speech, occupational and physical) there was a nutritionist, a psychologist and family life specialist. The psychologist was there in case we wigged out, I think. The family life specialist gave us a strategy for explaining to Felix where we were all day and what was happening to Max. She gave us a baby boy doll that she had augmented with a feeding tube taped to its nose. But her speciality appeared to be alleviating parental guilt about not being at a baby's bedside all day.

Unlike the Georgetown team, which tended to hide bad news in plain sight by referring only obliquely to Max's neurological deficits, the HSC team were forthright. The physical therapist described her assessment of Max's neurological control over his body. The brain's interaction with the body's muscles is known as "tone", although I find this term misleading. The cure for "low tone" is not exercise. Tone is purely a neurological issue. Max has "mixed tone" which means that his core or trunk has low tone while his extremities have higher tone, and the farther one gets from the brain the higher the tone. Many children with neurological problems also have GI problems. One reason that Max has such severe reflux may be because the tone of his esophagus is too low. The therapists emphasized that early intervention is the only way to tackle these problems, and that it does work. They'll be teaching us ways for Max to improve his core tone, which may allow him to relax his extremities. Firmer tone in his trunk may also help alleviate Max's reflux.

The HSC team have clearly seen many babies with reflux and feeding issues. They suggested a novel strategy for handling Max's reflux. They suggested placing an nj tube: this is a tube that bypasses the stomach and duodenum and goes to the jejunum, or small bowel. Max would get 12 hours of feeding via the nj tube at night. During the day he would get bottle feedings on demand or every three hours. The idea is that the nj tube would give him a break from the reflux and guarantee that he would get the nutrition he needed, while the bottle feedings would maintain oral competence and help him develop the capacity to deal with normal feeding. In addition, the HSC team hope that, with time and physical therapy, Max may outgrow the worst of his reflux.

After the meeting broke up (almost two hours!), Carolyn and I went to Max's bedside to admire him. He was in a good mood, but also clearly suffering from reflux. I sat Max on my arm and bounced him up and down for a while. He seemed to find this soothing and was drifting off to sleep when I left.

Max's charm offensive begins

Early in graduate school I read a Wall Street Journal article about how low-income parents, responding to common folk wisdom, would add oatmeal flakes to bottles when feeding their infants in order to soothe them. The article quoted several authorities saying that this sapped infants of important nutrition and decreased their chances of success later on. The article made a big impression on me, and I thought of it when the HSC team today started adding rice cereal to Max's bottle. Perhaps the folk wisdom was right all along? The HSC team assure us that Max continues to get proper nutrition.

When Carolyn arrived today she found nurse Y. bottle-feeding Max. He did extremely well. Indeed, he bottle fed three times while Carolyn was there, getting at least 20 ccs each time, and in one case more than 40 ccs (the limit of his bottle). Max's main problem is that he gulps down his food too quickly; anything faster than 2ccs/minute inflames his reflux, usually causing him to vomit. The previous solution had been to use a slow-flow nipple on the bottle. But now the HSC team recommended adding rice cereal to the formula in his bottle as a way to force him to work harder to get his food and slow it down. (The slow-flow nipple has been dispensed with: the combination of slow-flow nipple and rice cereal "is like drinking a milkshake through a coffee stirrer"). More broadly, Max's reflux continued to bother him today; he is in obvious pain while food goes in to his stomach and for some time afterward.

Max's charm offensive began in earnest today. He was smiling at Carolyn and other visitors quite a bit. Nurse C., a severe judge of babies, decreed Max to "a good boy". One of the unit's techs dropped by to say that he'd passed Max very early this morning and that Max had given him a huge smile. Finally, the attending mentioned, approvingly, that Max's crib was in a prime location.

When Carolyn left tonight Max was struggling with his reflux, as he had all day. It's particularly difficult to leave him when he's in obvious discomfort. However, at our nightly phone call nurse C. reported that he kept most of the feed down, only spitting perhaps 5 to 10 ccs (which quite restrained for Max). Given that his circ site is healing well, Max may move back on to his wedge tonight and be allowed to sleep in his favorite prone position.

Finally, during a diaper change today Carolyn and a nurse got to see the golden rainbow so familiar to parents; it's kind of messy but an improvement over the weak dribble that Max had managed until now.

HSC: Who, Where, What

HSC is a low-intensity hospital for infants and young children. It specializes in strengthening infants with disabilities and their parents for transition from a high-intensity hospital to home. The HSC staff is heavily weighted towards therapists and nurses, and has relatively fewer doctors. The building is located about a mile past Children's Hospital in north-east Washington. The HSC is currently staffed on a rotating basis by attendings from the peds hospital service at Children's. Many HSC patients frequently see specialists at Children's, so they run a shuttle transport service to Children's.

Fun fact: "HSC" is an anachronistic acronym (or initialism); it once stood for "Hospital for Sick Children" but now stands for "Health Services for Children". The old name was considered too depressing and redundant anyway: who ever heard of a hospital for well children? By the time the parent organization of HSC decided to change the name, the phrase "HSC" was too deeply ingrained into Washington's medical community, so they had to keep the initials.

Here's a link to the HSC website.

Everyone wants to blame the head

Max seems to have really woken up in the past 36 hours. Last night when I was there I noticed him arching his back, looking very uncomfortable and crying loudly, looking, in other words like a baby with really severe reflux. Carolyn saw much the same today: Max would get very hungry in advance of his feed, he would suck greedily on a bottle and then he would vomit the contents back up. Then the tube feed would start and he would be very uncomfortable, clearly suffering from reflux and vomiting parts of his feed back up. To think that we once worried he slept too much! He's awake and angry now.

To us, it seems that the HSC have lost control of Max's reflux. He was on a fairly precise regimen of drugs and feeding times at Georgetown, which seems to have slipped a bit at HSC. This isn't the HSC team's fault: shortly before Max graduated from Georgetown, the NICU team moved him to an unusual feeding schedule (every four hours rather than the standard three) and it seems that Max has gained enough weight that his drug doses are now low. Further, Max continues to be denied the comfort of sleeping on his stomach and his wedge while he recovers from his circumcision. As his "circ" heals and the HSC team revisit the medical strategy for controlling Max's reflux, we expect the current flare-up to subside. However, at the moment, Max is spending a lot of time yelling.

On the subject of the very minor surgical procedure Max had done just before leaving Georgetown, more than one nurse, at HSC and Georgetown, has commented to us that the circ looks really good; and, to be clear, they're not saying that it's healing cleanly (which it is), but that, specifically, the surgery seemed to have gone well. It's terrifying to think that some of these procedures don't go well.

While Carolyn was there, the HSC team had an impromptu meeting to discuss Max's serial vomiting. As with every meeting we've had with the HSC team since Max moved, today's group wanted to evaluate Max's intracranial pressure, thinking that his hydrocephalus was to blame. The NICU team would also immediately zero in on Max's hydrocephalus as the explanation for any distress, culminating in the famous episode where I spent several hours one Sunday arguing with a resident about whether a lumbar puncture to relieve intracranial pressure was really the appropriate treatment for a bout of constipation. It took the Georgetown team months to shift their focus away from Max's hydrocephalus to his reflux and other issues. And whenever a new service was called to consult, we had to endure a little lecture on how whatever symptom they'd been called in to help manage might be caused by Max's hydrocephalus. It was something of a running joke: every service wanted to blame the head. Increased pressure within the brain, it seems, can cause literally anything in a baby. But in the end, every doctor deferred to our judgment as to whether Max's personality had changed. This, it seems, is the real marker of ICP.

Finally, the occupational therapist came by. Max will see a physical or occupational therapist six times a week, with speech therapy interspersed throughout as well. This kind of heavy therapeutic intervention is one reason we wanted to move to HSC and we're glad to see it starting already. Indeed, the HSC therapists have managed to solve the mystery of Max's muscle tone. At Georgetown half the specialists thought he had high tone (i.e. was hypertonic) and the rest thought he had low tone (i.e. was hypotonic). The HSC team think that Max has both high and low tone. His trunk is floppy while his extremities, mainly his hands and feet, have high tone. This is a sign of faulty wiring between the brain and the body. In effect, the brain is yelling at the body to tighten up but only the extremities are getting the message. As the brain sees the trunk sleeping on the job it yells louder, causing the hands and feet to tighten further. There seem to be a few therapies for this, but it's not yet clear whether they're palliative or, potentially, able to resolve the dysfunctional relationship between Max's brain, which feels betrayed by his body, and his body, which feels bullied by his brain.

First full day at HSC

Today was Max's first full day at the HSC. The entire HSC team descended on him to make their initial assessments and produce short-run treatment goals. From Max's point of view, he was hard done by: his food was withheld (so he could tolerate assessment by physical therapists), he was repeatedly woken up and generally jostled. Carolyn tells me that Max was fairly stoic in the face of all of this turmoil, but it was tiring. When I arrived this afternoon I found Max fast asleep. Carolyn left and I took over. Max only woke up long enough to burrow into my armpit (his favorite way of snuggling when being held). Carolyn and I have each separately worried whether or not Max spends too much time asleep. I asked a doctor today if it was normal for babies not to cry. She said that when you can hear a baby, it's ready to leave HSC. But the other babies in Max's room were much louder. However, Max woke up quite hungry. He and I played for a while, but he was clearly interested in filling his belly. Once his feed started going in, he quite clearly started suffering pain from his reflux. He put on an impressive screaming demonstration. The nursing staff asked me to leave at their shift change at 7:00 PM, but I told them it was hard for me to leave my son when he was still in obvious pain. They very kindly applied all of their soothing skills to Max, and he quieted down. At least when I walked out of the door, he was quiet and content.

Graduating from the NICU

After yesterday's misfire, our understanding was that Max would be at Georgetown until next week; this was the NICU team's understanding as well. However, as is the nature of bureaucracies, the planets aligned around 11:00 AM today and suddenly the NICU team had to have Max ready to go in 15 minutes. The NICU team worked feverishly to assemble Max's medical records and prepare the rugged-looking transporter while Carolyn dashed around gathering up the asteroid belt of personal items that has gathered in orbit in and around Max's crib.

A few minutes into all of this it struck everyone that Max and Carolyn were finally leaving the NICU and, if all went well, they would only ever return as visitors in some far-distant future. It was an emotional moment: after more than four months of 12-hour shifts, Carolyn and I had become extremely close to the NICU team. Perhaps the sudden sprint to the finish line was for the best, like pulling a band-aid off quickly. When Carolyn arrived at HSC, nurse K., who had accompanied Max in the medical van, was already gone, and Max was in his new home. (A couple of hours later Carolyn would get an email from nurse R., Max's special friend in the NICU, saying that she was already suffering from "Max withdrawal".)

The HSC staff could not have been more understanding. Several of the specialists we spoke with mentioned that parents were often disoriented and anxious after the abrupt transition and because of the vast cultural gap between HSC and the NICU. They said that it would take time for us to get used to the slower pace and quieter atmosphere of HSC. But actually I think we like many of the differences between the NICU and HSC; we mostly miss the people we came to know in the NICU, and we're worried because the HSC team haven't yet been spellbound by Max's charms. They're obviously competent and really like babies in the abstract, but they don't yet know how special our little guy is.

Max has a corner bay with a view out a window. The early spring light was flooding through it when I walked in this afternoon. When we left tonight, they had turned the room lights down so that it was, for the first time in Max's life, really dark at night. But at the same time, it was really hard to leave, we felt a little like we were leaving Max with strangers.

Here's a picture I took of Max in the natural light through his window:

The long good-bye

The HSC didn't have a place for Max today after all, so he'll be spending at least a few more days at Georgetown. Now that we can't get in, it turns out that the thing we want most is to go to HSC. I'm not sure if the bed scheduled to come open didn't because the patient didn't leave, or because we were pipped at the post by another baby. No matter, this is something we can't control so we're not worrying about it. This does mean I have more time to work on my adaptation of a children's book that I'm calling "Goodnight NICU". ("In the great beige room/there was a monitor/and three little interns/doing their homework..." you see, it's not as easy as you might think.)

In other news, Max had a minor procedure today that normally happens to much younger boys. Say, boys aged eight days or younger. He'll be uncomfortable for a couple of days and not able to sleep in his favorite position, but, from prior experience, we expect him to quickly recover.

Without a feeding tube

Without a feeding tube
Originally uploaded by andreas.lehnert

Playing with the butterfly is much more fun without a feeding tube in.

Without a feeding tube

Without a feeding tube
Originally uploaded by andreas.lehnert

Max spent most of the day today without a feeding tube. Bottle feeding him when he can only tolerate about 1 cc/minute is a time-consuming task. Here, nurse M. is patiently giving Max just the right amount of formula.

Evening Update (3/3)

When Carolyn called the NICU for her regular 3:30 AM check-in she was told that Max's nurse, nurse B., (or indeed any member of the NICU team) couldn't come to the phone because they were having a photo shoot; there seemed to be a lot of hilarity in the background.  Despite (or perhaps because of) the attention, Max had sort of a hard night.  He vomited up quite a large amount after a feed, and was generally fussy and needy all night.

However, his day nurse, M., decided that Max was up to the challenge of feeding himself.  She pulled out his ng tube and tried feeding him entirely from a bottle.  She and Carolyn traded off all day long, with M. particularly concerned that Max conserve his energy for bottle feeding and not play as much as normal.  Max did really well, although getting 110 ccs into him every four hours was quite hard, and by the end of the day they'd reinserted his ng tube.  We were thrilled.  Max had most of a day without an ng tube and, if nothing else, Carolyn managed to get some great pictures.

The admissions team from HSC called the NICU to gather more information on Max.  They asked how he looked --- "he looks pretty good; he does have a very big head" according to nurse M.  They also asked what the parents were like.  We're not quite sure how she responded to that one.  Right now, there seems to be a 50/50 shot that Max will go to HSC tomorrow.  Carolyn spent the evening assembling huge gift baskets for the NICU team.

Evening Update (Monday 3/2)

A lot happened today. As an incentive to get through all of the details, I've pasted in a picture of the night NICU team at the very end of this entry.

Last night, Max's head circumference increased 0.50 cm and he gained more than 130 grams. We thought perhaps he was accumulating fluid in that already huge head of his, but Dr. R. seemed unconcerned. She reported that his fontanel felt better than it had in weeks. I think that the NICU team are determined to see Max off to the next chapter of his life and aren't going to let the Georgetown phrenology service delay him with a shunt. Dr. R. also said that the slight rattle we hear in Max's voice (audible on some of the videos) is caused by inflammation of his vocal cords and can be a sign that his reflux is getting worse.

Because of the snow storm that paralyzed the city today, Max's move to HSC has been delayed a day, to Wednesday. The evaluation team from HSC are due to arrive tomorrow to assess Max and prepare a berth for him at HSC. Carolyn and I remain slightly skeptical.

If Max has one special friend in the NICU it is nurse R., who today offered to babysit Max any time. Carolyn reports that when R. comes into view he beams at her with a huge toothless grin. Alas, R. is on the day shift, so the picture below doesn't include her.

Max had a long physical therapy session, after which Carolyn and physical therapist J. had a long chat about raising children with significant physical challenges. First, the PT session: It went extremely well. Max got out an enormous poop five minutes into the session, and felt much better afterwards. (This may explain part of last night's weight gain.) Max spent some time on his tummy turning his head from side to side to look at people and his favorite toys. Of course, with a head that size, he has to take breaks to rest, but he always starts up again. He does not simply give up and lie in bed. Max is a motivated baby. Also, moving his head is a heck of a great workout for the rest of his body.

After Max's workout, J. and Cj left him lounging on a pillow in his crib while they sat and chatted. J. told Carolyn that we would be tempted to compare Max to other children and to check his progress against a checklist of milestones. J. strongly urged Carolyn to resist these impulses and instead to always focus on Max's next goal. For example, Max has many basic baby skills down, and his next step is to reach and grasp for toys. J. urged Carolyn to work on this progress; J. said that some children actually regress. Max is progressing by taking a single step, just one more step. And then another. And so on. This is how one climbs mountains. We may have to help him with the steps, but for now at least he has the will to take them on his own.

J. also thought we'd benefit from talking to some ex-NICU parents, including a family we came to know solely because of the incredible lack of privacy in the NICU. During their stay, we never once acknowledged each other's presence. This is the NICU way. But with the NICU apparently nearly over for us, J. felt that we might want to talk. J. mentioned that the family keep a blog, a technological innovation that is sadly beyond old fogeys like us. (I outsourced this blog months ago; it's now written abroad based on notes I scribble on cocktail napkins. Because it's so easy, I'll continue to have the blog written for me if Max leaves Georgetown, although I won't change the web address: Max At GUH is here to stay.)

Dr. Kz, the tough grader, gave Max his third full developmental evaluation. She sees advances in his "social skills": I think these are things like eye contact and smiling, skills that, frankly, some members of the NICU team have never mastered. Dr. Kz observed that Max has a preference for his left side, and encouraged us to work on getting Max to turn right, reach for things to the right, use his right hand so on. Because Max's brain damage is asymmetric, we're always on the lookout for asymmetries in his progression, especially weakness on his right side. Dr. Kz also thought that Max was hypertonic (i.e. has tense muscles, a precursor sign of CP). However, Carolyn and I have already had a few freakouts over Max's muscle tone and think it's just fine.

Dr P., the peds GI specialist, also dropped by today: when told about Carolyn's innovative new feeding schedule she was noncommittal. Dr. P. said that it's time to think about reintroducing breast milk; we thought that the whole point of Max's elemental diet was to rule out an allergy to breast milk. However, Dr. P. told us that allergies to breast milk per se are incredibly rare; instead, it's much more common for babies to be allergic to something in their mother's diet. In other words, Carolyn will have to go on an elemental diet. For logistical reasons, we're putting this off until next week. But this explains why every meal now features at least two kinds of cheese, and also why when I came home I found Carolyn and Felix fighting over the last piece of string cheese.

Finally, the long-promised photo of last nights NICU team. Look how Max is hamming it up.

Max taking a bottle

Max taking a bottle
Originally uploaded by andreas.lehnert

Nurse M. giving Max a bottle. In this feeding he took 25 ccs, which is quite a lot.

Evening update (Sunday 3/1)

Carolyn, Felix and I had a waffle party with some friends this morning. After that, Carolyn went into the NICU and spent the day with Max. It seems that Max had been awake from 4:00 AM to 7:00 AM, finishing with a rousing vomit of 30 ccs. Carolyn blames the bouncy seat. When Carolyn arrived Max was most interested in sleeping in her arms. These new-fangled 90 minute feeds are a strain on Carolyn because she has to hold him for the entire time.

After his afternoon feed, Carolyn and Max played pretty energetically. She took some video (which I have to edit) of Max batting at his rattle. However, here is a video of Max playing with the friendly fish, a favorite of Felix's.