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.