Evening update (Saturday 2/28)

Summary: Max had a good day: he was taken around the NICU in his stroller by the nurses, he had great play sessions with Carolyn, he did well feeding from a bottle, and he hasn't vomited at all (so far).

Max's departure for HSC is moving at a rapid clip. Perhaps the clearest sign that the NICU team are prepared to let go of Max is that he is now routinely assigned "floaters"--i.e. nurses whose normal services are slow and are temporarily sent to the NICU. These nurses tend to be a little overwhelmed by the NICU and are given only the easiest patients, including Max.

However, the floaters tell Carolyn and me that they're puzzled by the attention Max gets from the NICU's regular nursing staff. Last night's floater, nurse H., said that "some other nurse" had given Max his bath and H. wasn't quite sure what was going on. Every since Carolyn brought the stroller in, it has proved a huge hit with the NICU team, and nurses not otherwise occupied will routinely take Max on little journeys over to CCN1 to visit his old friends. Many are busy with critically ill babies, but always take time to say hello as Max promenades past. For his part, Max like the stroller quite a bit. Perhaps he likes the geometry (he's held firmly in a semi-reclined position), the novelty, the sense of motion, or maybe he like to travel and see new vistas. We learnt that many NICU babies freak out when taken out under the sky for the first time. Max's sanguine reaction yesterday was either due to excellent state control or being zonked out.

Carolyn's proposed schedule has proved a huge hit with the NICU team managing Max's feeds. The schedule's key innovation is running larger feeds over a longer time: keeping the flow rate the same but also filling Max with more food. This allows him (in principle) to go longer between feeds. Carolyn's schedule featured two such long feeds in the night so that, were Max to come home, we might stand a chance of getting five or so hours of sleep per night (albeit not continguous hours). These long feeds have proved so successful that the NICU team have now converted all of Max's feeds to this format. He now is fed every four hours, over a 90 minute stretch each.

One result of this is that the time between feedings is now longer. That's more time for play and therapy between feedings. In addition, Max is quite hungry (for maybe the first time in his life) by the time his next feeding his due. Carolyn discovered that this made him a motivate consumer of bottle feeding. So much so that he drinks at a rate quite a bit faster than he's used to with the tube, raising the possibility that he might not tolerate it. Carolyn limits him to 10 to 15 ccs by mouth at these feedings and then lets him work out any remaining aggression on his pacifier.

Evening Update (Friday 2/27)

There were several exciting developments today: Carolyn took Max out for a stroll, the NICU team have signed off on transferring Max to the HSC, and Carolyn and I took a tour of the HSC.

Today Carolyn made good on the NICU team's promise to let Max out for a stroll. The obsessives of the NICU of course made sure that Max was completely surrounded by blankets, with the attending herself, Dr. R., supervising the procedure. Even after Max was more than adequately cushioned, she insisted on a few extra blankets, so that Max was thoroughly protected from drafts, rain, sun, dogs, bees, crazed drivers etc.



Once he was outside, Carolyn posed for a picture with Max. That's the front door to Georgetown University Hospital in the background:


The NICU team insisted that a medical professional accompany Carolyn and Max; for a time it seemed that one of the medical students would be chaperoning Max. But in the end Dr. R. couldn't resist the temptation:


The weather today was the same as the day Max and Ada were born: humid and unseasonably warm. While he was outside enjoying fresh air, Max got to see the outside of the NICU (the windows on the third floor):


The NICU team have agreed to let Max leave the NICU. However, realistically speaking, Max is far from being ready for the world. The pediatric neurosurgeons still consider Max a borderline candidate for a shunt, and want him followed closely. His head circumference is now officially off the charts, so he'll be evaluated by feeling his fontanel, looking for sudden increases in head circumference and watching him for neurological symptoms. Max is nowhere close to feeding himself; he will be tube-fed for some time to come. In addition, he still needs an hour to tolerate a feeding; any faster and he vomits back too much food to thrive. All this to say that Max still has a lot of work ahead of him, but he's accomplished quite a bit over the past four months, and he deserves some reward. He's medically stable; he hasn't had a major desat for more than a month; he's managing to get some food in by mouth and, if he isn't getting his nourishment in the standard 15 to 20 minutes, he's doing much better than the continuous drip he was on in January.

With all of this in mind, Carolyn and I took a tour of the HSC, home of the famous "preemie express", the transition vehicle for many babies from the intensive care unit to the outside world. Because the HSC is like a nursing home for children, Carolyn and I were braced for a depressing experience. We resolved that if it was too grim we would take Max home and manage his care ourselves. The HSC is in a charming 1920s-era mansion with rambling, steepled roofs and freshly painted white stone walls with blue trim. Inside it has high ceilings, Frank Lloyd Wright furnishings and architectural details and many tall windows. The nurse to patient ratio is the same as in step-down NICU and there are many more therapists. The rooms hold only six babies each, and are free of the constant alarms that have formed the background soundtrack of Max's life. I wonder how long it will take him to adapt to a soundscape made up of only babies and parents?

The HSC, of course, is far from a paradise. There are sad stories everywhere you look. But Carolyn and I have been hardened by the NICU. These stories are less sad than the NICU's: the patients are struggling but progressing and the parents look less frantic. The older children at the HSC are a vision of what Max's future might be like. It's nothing we would have chosen, but if he makes it to the HSC, Max will have beaten long odds.

The only remaining fear that Carolyn and I have is that the HSC staff haven't yet fallen under Max's spell and thus will, at first anyway, treat him like a normal baby. At the NICU, by contrast, the fact of Max's likely departure has finally sunk in. Max is now receiving a parade of visitors coming to say good-bye to him. Carolyn is assembling and delivering parting gifts. The coterie of coffee enthusiasts got several bags of Peet's Major Dickason's blend today. But that's just the start of the gifts. One of our earliest memories of the NICU is nurse B., in the very darkest hours of the night, collecting change and dollar bills from her colleagues and taking orders for a run to the basement vending machines to get snacks. These snacks are as insalubrious as you might imagine: we were never able to tolerate them ourselves. Carolyn went by Trader Joe's this evening and bought enough nuts, fruit strips, and other appetizing snacks to power a scout troop for a weekend's camping. These will be delivered in a tasteful wicker basket the size of a compact car. And I am sticking it to the RIAA by burning copies of The Philadelphia Chickens CD--a sovereign remedy for cranky babies--for all the pregnant staff of the NICU (that is, about half of them).

Carolyn have debated whether to wait until Max is actually getting transferred to deliver our gifts. The NICU exerts a malign gravity and no patient is truly out until he's tucked away safe in his own bed somewhere else. But with a bed set to open at HSC on Monday, everything looks set for Tuesday to be Max's last day in the NICU. I wonder if, in the future, we will celebrate his birthday on March 3rd?

Out for a stroll

Out for a stroll
Originally uploaded by andreas.lehnert

This is a picture of Carolyn and Max outside the hospital. Carolyn said it felt "like a prison break". Max got to see the vistas beyond the NICU world that he has known for the past four months. If he moves to the HSC next week, he'll get to see quite a bit more of the world.

Evening update (Thursday 2/26)

The pediatric neurosurgeon, Dr. K., examined Max this morning, reviewed his most recent CT scan as well as his past scans of all sorts (ultrasounds, MRIs, and CTs) and his head growth trajectory. Dr. K's assessment is that Max does not currently need a shunt, but that he is a "borderline" case and should continue to be monitored. Essentially, this means closely watching his head growth as well as his fontanel. Dr. K.'s assessment thus matches that of the NICU team and the other neurosurgeon who has been seeing Max. We know that a shunt may ultimately be the best thing for Max. But for the time being we are glad that he is managing to avoid it, because once the surgery takes place he would have it (or a revised version of it) for the rest of his life.

Max took about 10 cc by mouth at two separate bottle feedings today. At the first one around 10:30, he promptly spit it all back up. That feeding time was about an hour delayed (the NICU is a crazy place these days) and I think he was hungry and just gulping it down too quickly. The second effort at 4 p.m. went better, with him keeping it all down, at least by the time I left at 5:30.

The NICU attending, Dr. R., spoke with me today about the next steps for Max. Most likely, he will be discharged to the halfway house of the HSC where he will receive intensive speech, physical, and occupational therapy. The goal of HSC to to transition kids to home, not to keep them there long-term. The developmental pediatrician, therapists, and doctors at GUH seem to think this step would really benefit Max. While we are eager to have him home, we also realize that he will need a high level of care. We think that both Max and we can learn from a stop at the HSC. Andreas and I are going to visit HSC on Friday afternoon to get a feel for the place. If Max continues on his current course, and if a bed is available at HSC, my guess is that he may be going there next week.

Proposed feeding schedule

This is a feeding schedule that would allow Max's parents five hours of sleep, as opposed to two hours on the standard schedule.

Evening update (Wednesday 2/25)

When Carolyn arrived at the NICU this morning, she found Max wearing a hospital-provided outfit because he'd soiled all of the outfits she had brought for him two days ago. Along with having volunteers hold your child, this is one of the failures that NICU parents use to judge each other. After four months, we feel that we're due a little a few allowances.

At his morning physical therapy session Max was bright-eyed, alert, smiling, grabbing at things and generally having a good time. The therapists have now attached a ring to Max's pacifier so he can practice grasping it and keeping it in place himself.

Max wasn't interested in a bottle at noon; but he took 10 ccs at 3:00 PM. Carolyn held him very still for the rest of his feed and for half an hour afterwards (Max was very sleepy after his big morning). But just as she was putting him back to come home, Max vomited up a largish amount of milk.

Carolyn also got to insert Max's ng tube--this is the tube through his nose into his stomach. She had noticed that it appeared to be misplaced and that it had been in for more than a week and so needed to be replaced. As the NICU team pointed out, we're going to be placing the tubes ourselves sooner or later so we might as well start now. Passing the tube down the esophagus is an art, but Carolyn seemed to master it. In addition, one checks the placement of the tube by puffing air from a syringe down it and listening (with a stethoscope) for a blast of air in the stomach.

Although Max is vomiting fairly regularly, the NICU team agree that he appears to be thriving (this is a technical term in neonatology, but I still like its positive ring) and he is well-proportioned. Well-proportioned, excluding his huge head of course, but big heads run in our families.

The complete evaluation from the pediatric neurosurgery service isn't in yet, nor had Max been seen by the attending. Nonetheless Carolyn spoke to Dr. R. about her reading of the results of his recent CT scan. In the past, we've gotten good news from the NICU team only to have the neuro service render a much bleaker assessment, so we're taking Dr. R.'s view as strictly provisional. Nonetheless, it was pretty positive. She characterized Max's hydrocephalus as "stable", reported that she saw brain growth and that she saw interaxial space (that is, space between the brain and skull). All of these findings are tentative, but if they hold up they don't point to a worsening of Max's hydrocephalus. It may be some time before we get the official word from the neurosurgery team because, as Dr. R. put it, they have "about a million of Max's records to review". True, he is developing a big file. Although we haven't met the new neurosurgery attending, we've heard good things about him from nurses, staff, and other doctors.

The NICU team had their regularly scheduled "discharge rounds" today, where they evaluate their patients' progress for release. Assuming that he is cleared by the neurosurgeons, Max may be a strong candidate to leave the NICU sometime soon. He may come home, or he may go to HSC's "preemie express". There is a bed open at HSC; Carolyn and I will visit some time in the next couple of days. Even while waiting for the neurosurgeons to sign off on Max, the NICU team are preparing him for transition away from the NICU. Dr. R. and the NICU fellow tried to compose a feeding schedule that was a little more humane, in the sense that it had longer gaps during the night while giving Max the same amount of food in any 24 hour period. It's a fairly complicated math problem: Max can't tolerate feeds faster than a given rate, his stomach can only hold a limited amount and so on. The doctors were clearly stymied when Carolyn volunteered to compose a schedule for them. Everyone present agreed that Carolyn probably knew more math than they did and gladly handed over responsibility. Cj just showed me the spreadsheet she composed. I have to say that it's a masterpiece, but a daunting prospect to think about actually implementing.

Evening update (Tuesday 2/24)

Today marks Max's 4th month in the NICU. Unfortunately, he celebrated without either of his parents. I was not feeling well and so stayed at home to rest and go to the doc to get tested for strep (negative); Andreas had to work.

Max managed to have a big day though: OT this morning, when he raised a rattle to his mouth and generally showed good progress from when the therapist started working with him a week or so ago; ST at noon, when he took 10 cc; two separate sessions being held by volunteers; a poop on his own without the assistance of a suppository; and a CT scan late this afternoon. He had a large emesis (about 30 cc) last night around 1 a.m., and a few more smaller ones today. We're not sure whether he was more excited, getting jostled, couldn't handle the higher caloric content of his formula which started today at noon, or something else.

Max is due to be seen tomorrow by a pediatric neurosurgeon, who will review the CT scan, chart, and Max himself. Up until now (for reasons that aren't entirely clear to us), Max has been followed by a "plain" neurosurgeon. As the shunt drumbeat seems to be picking up, we asked that a pediatric neurosurgeon be consulted, because we would want this doctor to perform the surgery if needed and follow Max throughout his childhood.

Evening update (Monday 2/23)

The NICU was roaring along at maximum capacity today, with temporary nurse R. again being called in to take care of Max. He's a floater from another service in the hospital, and Carolyn and I really like him. From what Carolyn can see through the windows, the higher-level NICU appears to be more hectic than usual.

Carolyn bottle fed Max twice today, once at his noon feed and again at his 3:00 PM feed. He took 12 ccs at noon but it was otherwise unremarkable. However, speech therapist S. dropped by and observed Carolyn's afternoon feeding. S. was extremely positive: Max's coordination was good, he was pausing appropriately, and was trying to grasp the bottle. S. said that Max's breathing was excellent: "I hesitate to use the word 'strong' with respect to Max". After a while Max seemed to get tired, and he demurred when Carolyn offered him the bottle once, then did so again when offered the bottle a second time, but Max took the bottle on the third offer. He swallowed a mouthful of formula and then spat it back up. He choked on it and had a brady--his heart rate dropped to 80 beats/minute. Max recovered on his own: this episode was nothing close to a dreaded ALTE. S. was totally unfazed and showed Carolyn how to avoid future choking episodes in similar situations (it's a matter of geometry--Carolyn showed me using a large frog puppet here at home).

Dr. R., the NICU attending, after discussing the matter with Carolyn, has put Max back on pediatric neurosurgery rounds. This means that Max will be seen by a fellow or attending routinely until they again sign off on him, as they did earlier this year. The peds neuro service will likely order a CT and/or MRI to evaluate Max for shunt placement. Their snap judgment remains that he is a "borderline" case.

Carolyn and Dr. R. had a long and involved conversation about the potential future courses that Max's treatment could take. It's exactly the kind of conversation we've been having often, and it's draining in a way that's hard to communicate. Carolyn or I, and the physician, try to understand the various contingencies that might crop up in Max's increasingly complex care. Max could need a shunt fairly soon. But he could need a Nissen soon, and then need a shunt. Or he might get strong enough to go the HSC, then need a shunt and then need a Nissen. Ideally, the shunt would empty into Max's intestinal space, but if his GI system was upset, it might temporarily be drained from his head. And on and on and on. These conversations usually peter out with less-than-conclusive statements such as "we'll have to wait and see" or "the next move is up to Max." Dr. R., however, concluded the conversation by saying "My goal is to get Max home."

Evening Update (Sunday 2/22)

Max had a quiet and restful day at the NICU. He's still on a 60 minute feeding schedule, with decreased volume. The result is that he had a comfortable weekend. Even in the frantic 24/7 world of high-tech medicine, the NICU team still like to decrease the pace around the weekends. No doubt Monday will herald an onslaught of tests (a CT scan and and MRI for his fluctuating head circumference) and some further thinking about his reflux.

But today at least was quiet. I came in around 11:00 AM and stuck around for an attempt to bottle feed Max (see picture below). Max didn't do particularly well, and nurse R. didn't force the issue. He then switched Max to a more normal pump feed, and I held him during this feed and for some time afterwards (to let the food settle). Max was awake and playful for the first hour I was there, but once his bottle feeding attempt was over and the tube feeding started, he burrowed into my armpit and fell deeply asleep.

Nurse R. was the first male nurse I'd seen in the NICU. He was a floater assigned, I believe, by an agency. I didn't ask too many questions. He was quite good. He told me that NICU nursing was dominated by women as the result of, he thought, strong negative reactions to male nurses by some parents. He was a pretty cool guy, and I'm glad Max got to spend some time around fellow men today, as a change from normal team, who are almost all women.

Otherwise the NICU felt empty, without anyone else that I recognized. It's odd not to see familiar faces in that place after so many months (four down and counting). Odd, and disquieting. I hadn't realized how much I'd come to rely on personal connections with the NICU team until I was thrust in amongst strangers. I felt very lonely.

Max, on the other hand, took it all in stride.

Sunday in the NICU

Sunday in the NICU
Originally uploaded by andreas.lehnert

This is a nice picture showing the features of Max's new crib. You can see that he's resting on the infamous wedge (the inclined plane that lets gravity help with his reflux). Taped to the crib rail are the feeding instructions designed by speech therapist S. He has a few stimulating toys to look at, as well as some hortatory literature describing the journey of another little boy named Max.

Evening Update (Saturday 2/21)

Carolyn went into the NICU this morning to spend the day with Max. Nurse AGENCY NURSE (according to her name tag) seemed a little confused about Max's treatment, but Carolyn was there to make sure that Max got the right amount of food over the right time.

Max seemed to be tolerating his new, slower feeding schedule. He and Carolyn had a vigorous play session, and then he took 10 ccs by bottle. After that, he conked out and slept soundly.

The NICU attending didn't seem to be overly concerned by last night's 0.50 cm increase in Max's head circumference. His fontanel still feels "fine". Carolyn and I think that on Monday the normal NICU team will order an MRI and CT scan to determine whether Max's hydrocephalus has gotten dramatically worse or he's merely going through a growth spurt.

Evening update (Friday 2/20)

Today marks Max's 17th week in the NICU.

After having a few more vomiting bouts last night, the doctors dialed back the volume that Max is fed to 75 cc (from 85 cc), and also increased the time the feed goes in (from 45 minutes to 60 minutes). At least while I was with Max today, he seemed more comfortable with this and even exhibited some hunger signs before a feed was due to start. As of 10:30 tonight, he had managed to keep all his food down since about 6 a.m. With the aid of a suppository this morning, Max got his bowels moving and that seemed to give him some relief, too.

Today during rounds the doctors decided, at Nurse J.'s suggestion, to allow Max to have his temperature taken just once every 12 hours, instead of once every 3 hours (the protocol since he was born). Max is increasingly irritated at having the thermometer jammed up under his arm, so I know he will be happy about this decision. Also, they decided to unhook his pulse oximeter from his foot. This too has been attached to him since birth. The doctors think that his oxygen saturations are high enough and stable enough to warrant not having to monitor this continuously. Finally, the doctors said that Max could take brief trips outside the NICU in a stroller or sling. This both thrills and terrifies me.

Otherwise, today in the NICU was pretty uneventful and that's just the way we like it. With no therapy appointments at all, Max and I played and exercised a little bit before each feed started, and he slept in my arms while his feeds went in. I tried two bottle feedings. The first one was fairly successful, with Max taking about 10 cc. On the second attempt, I didn't even put the bottle to his mouth (thus it may not count as an attempt) because he wasn't showing any interest at all. I left him at the end of the day on his tummy on the wedge, with his eyes wide open, checking out the action of the NICU. Tonight, Nurse R. reports that Max sat on her lap for awhile and helped her find some things online.

Evening Update (Thursday 2/19)

I got to see Max's new crib today because I came over for our meeting with the pediatric neurologist. The crib really does loom over the neighboring lucite boxes and it really is much more comfortable and spacious than the infant cribs. I can see why Carolyn enjoys it so much.

Max was not tolerating his latest feeding regimen: 85 ccs over 45 minutes. He vomited 5 times yesterday culminating a complete stomach-emptying blast while Carolyn was holding him. Dr. R. was nearby and immediately went to feel Max's fontanel to check to see if his hydrocephalus had gotten worse. However, it appeared okay, and Dr. R. said that Max was not projectile vomiting. She ordered the volume of his feeds decreased to 75 ccs, although she kept the feed time compressed to 45 minutes.

Because of his spectacular emesis, Max had an empty belly and he and Carolyn were able to play uninterrupted for more than hour without fear of upsetting his stomach. Carolyn reports that he was a delight, and that he tracked her movements and voice, and turned his head to watch her, rather than merely moving his eyes. He needs a strong neck to support that huge head of his.

Another side benefit of Max's big vomit was that, for the very first time in his life, Max felt hungry. He responded exactly as a baby should, by rooting vigorously. He sucked hard on Carolyn's finger, and brought up his hands to grasp her wrist and keep her hand in place. (We're told this kind of centering behavior is desirable in infants.) Carolyn offered him a bottle and he ate like a champion. Carolyn gave him 15 ccs, but he clearly was in the mood for more. However, given the fragility of his stomach, the rest of his feed went in by tube.

Thus, a happy and successful end to an otherwise fairly depressing day. It is a father's right to believe that his son will beat long odds to win out in the end. However, Max has already done so several times. I'm just trying to keep up with him.

Assessment by the peds neuro service

We met with the NICU team and Dr. M., the chief pediatric neurologist. Dr. M. had reviewed Max's MRIs, head ultrasounds and CT scan results, and examined Max. Today he gave us his full and frank assessment. Max has an "80 to 90 percent" chance of developing cerebral palsy and a 100 percent chance of having a developmental delay. (This latter being a safe bet because Max is already developmentally delayed.)

Max has two ongoing hydrocephalus processes. The first is the standard problem of overproduction of CSF, which collects in his ventricles and pushes outward. With Max's head growth accelerating recently, the prospect of surgery to place a shunt has again become very serious.

The second is called "hydrocephalus ex vacuo". Hydrocephalus, like nature, abhors a vacuum. As brain tissue destroyed during Max's head bleeds is cleaned away by the body's waste disposal system, the ventricles expand to fill the space left by the shrinking brain. Dr. M. found fairly pronounced tissue loss on both sides of the brain, although perhaps a little greater loss on the left side.

In addition, because Max's head bleeds were more involved than previously thought, Max is at increased risk for CP (which we've discussed), permanent cognitive impairment and seizures (i.e. epilepsy).

We had been warned that Dr. M.'s bedside manner was lacking. However, we found him refreshingly candid. We asked for the straight story and we got it. He seems to be the guy that the NICU team depend on to deliver the really bad news, and I'm sure it makes for a series of tense interactions with parents. That said, Dr. M. did try to cheer us up with a story that was hilarious, in a horrible kind of way. He told us about an adult patient of his who had severe CP: She couldn't talk, was in a wheelchair, the full meal. However, she had risen to an extremely senior position in the Pentagon because of her facility with, as Dr. M. put it, "computers". After the initial shock wore off Carolyn and I laughed and told him that this was possibly the most distressing story we could imagine a doctor in his position telling parents in our position. As Carolyn said: "thanks for that really heart-warming story doc" as she and I laughed. No-one else in the room seemed to find it as amusing as we did.

In part, Carolyn and I remain in denial about the huge challenges and risks that Max faces. But also we feel very strongly that there is a bright and lovely person inside that enormous head of his. We won't know the extent of Max's CP for a couple of years. No matter what, we will boost Max's neurological function to the extent possible with therapy and treatment.

Max relaxing in the new crib

Max's new digs
Originally uploaded by andreas.lehnert

This is Max enjoying his new, roomier, crib. He's lying crossways on a pillow. He likes to have rolled up blankets pressing on his back while he sleeps.

Max's new digs

Max's new digs
Originally uploaded by andreas.lehnert

This is Max's new "big boy" crib. It can accommodate his wedge with plenty of room left over for lying on a pillow and contemplating the world, playing with his toys and simply lounging.

Evening Update (Wednesday 2/18)

Max had a pretty good day, although he scared us by vomiting fairly vigorously just as Carolyn was leaving. Carolyn was convinced Max was finally projectile vomiting, the long-dreaded sign of neurological distress. However, a passing nurse assured Carolyn that Max had "spit up" in this way before and, what's more, true projectile vomiting involved hitting the side of the crib, not just reaching Carolyn's elbow. Carolyn and I are slightly on edge because the resurgent concern about Max's hydrocephalus and because we're meeting with the pediatric neurologist tomorrow to get a full assessment of the various insults that Max's brain has suffered and what they might mean. We've been warned that this particular doctor isn't known for his bedside manner, so we're braced for a tense meeting.

Aside from that, Max had a great day. He continues to handle his 45 minute feeds with only the usual twice-daily vomits. Carolyn finds the new feeding schedule amazingly liberating: She and Max have twice as much free time together now. Yesterday Carolyn tried feeding Max with a bottle and he wasn't interested. Today, Max took a bottle from Carolyn twice, getting 17 ccs the first time and just 5 ccs the second. This was a major victory because Carolyn wants to get the technique down so she can feed Max by bottle on her own.

Max had a pretty successful physical therapy session. He does have an enormous head, so he has trouble moving it around, but he's clearly trying. He's also starting to vocalize, delighting Carolyn and A. with a few coos. I wonder if being surrounding by constant talking is stimulating his speech center?

In other news, Max moved his bowels without artificial aids or high drama. The consistency, I'm told, clearly indicates that he's on formula but isn't otherwise troublesome. The NICU team report that Max is now in the 50th percentile for length as well as for weight. Previously, he'd been in the fifth percentile for length. Carolyn wondered how Max could jump so dramatically on the charts, but the NICU team assured her it was possible.

Here is a video of Max cooing in his new crib (or click here):

Evening Update (Tuesday 2/17)

Max and Carolyn are enjoying Max's new crib. Picture tomorrow, we swear. Among its many other benefits, the roomier accommodations allow Max to recline on a pillow and look out at his visitors and the NICU more generally.

The NICU team have compressed Max's feeds to 45 minutes. This is the fastest that Max has gotten any feeding, with the exception of a single 30 minute feed a few months ago that kicked off a particularly horrible week. This time, I think he's ready for it. Carolyn was present for two feeds at the new, faster rate and reports that Max slept through them both (as he is wont to do) but that he didn't show any signs of discomfort.

Part of the treatment involves feeding Max with an easy-to-digest formula. Since he's been on it, his weight gain has tapered off and he's been extremely constipated. The NICU team will increase the volume of food he's getting tomorrow as well as adding fortification. The constipation they'll treat with glycerin suppositories as needed. Carolyn isn't happy with either solution and would like Max back on breast milk sooner rather than later. But as long as they're feeding him formula, we had extremely spicy Indian food last night.

Max didn't take a bottle today, despite two attempts. He was calm and alert while the nurses and Carolyn (and the speech therapist) tried to entice him to suck on a bottle, but he simply wasn't interested. He didn't show any signs of oral aversion, which is good news. They'll try again tomorrow or later tonight.

Perhaps the funniest moment of the day came when the chief doctor solved the mystery of Max's nocturnal habits. Why does Max stay awake all night and sleep all day? He's quite a popular baby among the night staff, and routinely receives visitors between midnight and 3:00 AM. He also has other adventures in the dead of night that we only hear about, and which were until now unknown to the attending. She put an order in Max's chart that has to be fairly unusual: Do Not Play With This Baby After 10:00 PM. Max's night-time fan club will be crushed, but as Dr. R. put it: we have to prepare this baby to go home. And indeed she's right: What will Max do when he comes home and there's no one to entertain him in the dark hours? More to the point: how long will his parents last on that kind of schedule?

In the early afternoon Max and Carolyn had one of those multiple-outfit rodeos that are so common when changing infants. After peeing all over his second clean set of clothes, and getting wrangled back into a third set, the occupational therapist J. dropped by. Carolyn was worried that Max wouldn't be at his best after such an ordeal but, to the contrary, the three of them had a wonderful time. Carolyn texted me effusive news of the OT session so it brightened my day too.

J. said that it this stage it's useful to show babies how their bodies can move. She moved Max's arms into what she called the "cheerleader pose", moved his legs and hips and rotated his feet and ankles. Carolyn asked which muscles are the first to go when a child has CP, and J. said that it was the muscles in the ankle that control the orientation of the feet. J. and Max played with some toys, had some tummy time and practiced tracking objects and people.

Carolyn confessed to J. that, because Max's schedule has so little room for interaction (he spends most of his time enduring feedings or recovering afterwards), she feels she has to pack these brief windows with enriching activities. As Carolyn put it, "I feel that every moment not stimulating him is a lost opportunity to increase his brain capacity." J. emphasized the importance of working with Max, but she also said that both baby and mother need some peaceful time together.

Evening Update (Monday 2/16)

With Max's hydrocephalus acting up again and his difficulty moving his bowels, Carolyn and I are once again marking each day as good or bad depending on his nightly head measurements and poop journal entries. On that basis, today was a good day indeed, with Max's head circumference down 0.25 cm from the previous night and Max delivering his first bowel movement since the NICU team switched his diet to the neocate formula.

Max was enjoying his new big boy crib when Carolyn arrived. It's like the McMansion in a neighborhood of 1930s cape cods. Max's crib looms over his neighbor's. However, the extra room finally relieves the overcrowding caused by the wedge. Now there's room for the wedge and for Max to lie flat. Nurse N. redecorated with a vengeance, putting up all the photos and pictures we've brought in over the past four months.

Dr. P., the peds GI specialist, talked to Carolyn today and told her to expect continued sticky, dark stools while Max is eating neocate. She said that Max's phlegmy cough, often heard just before he vomits, might be a sign of an allergy. I was shocked she didn't say that excessive phlegm is associated with neurological problems.

Max's feedings are now compressed to 60 minutes, and the volume is up to 80 ccs. Max continues to vomit once or twice a day, but the NICU team appear unconcerned. He handles himself well during these episodes, and he usually looks more comfortable afterwards.

The NICU nurses have become zealous about feeding Max with a bottle; nurse M. reports that Max took 20 ccs by mouth tonight before getting very sleepy. Max's new-found interest in using his mouth has all happened since the speech therapists went home on Friday. Today was the first time that speech therapist S. was able to watch Max eating. She was broadly positive but not effusive; she noted several areas where his technique required improvement. The NICU attending and fellow (who had also taken the weekend off) were more visibly excited, with Dr. R. saying: "I can't believe this is the same baby from last week." As I told Carolyn, this means that we'll have to bring Max back in a year so they can say "I can't believe this is the same kid from last year."

In addition to a session of speech therapy, Max also had visits from an occupational therapist (they "help with the business of being a baby") and our friend physical therapist A. At this point in his life, Max's occupation and physical therapy will be broadly similar. Presumably when he gets to shop class in high school, occupational therapy will be fairly distinct.

Carolyn talked to A. about some of the physical symptoms we've obsessed about since Max's last head ultrasound. I was convinced yesterday that Max's leg muscles were extremely tight, signalling hypertonicity and a possible early sign of CP. A. thought his leg muscle tone was appropriate. The head phrenologist thought he saw indications that Max was sundowning; that is, that Max's eyes were fixed staring down, another symptom of neurological damage. Ever since he dropped this little observation, Carolyn has been wondering if she can see it in Max too. A. saw absolutely no signs of that. Indeed, Max was alert and happy while working with A.

Finally, A. showed us a neat physical therapy trick. When a baby is lying on his back with his arms extended, you can stroke his outer pectoral muscle and he'll bring the arm in on his own. I'm going to try this on Carolyn tonight to see if it works on adults.

Evening Update (2/15)

Max's head circumference grew an unlikely 0.25 cm to 41.75 cm.  Whenever we see a measurement that isn't reported in half-centimeter increments we suspect that the nurse is rooting for the "right" answer and squeezing the tape measure a little harder than normal.  This could be the return of abnormal CSF production, which would require a shunt.  Certainly Max's recent head ultrasound points in that direction.  Or he could just be having a growth spurt.  Only time will tell, and we're good at waiting.

When I got to the NICU this morning, I realized I hadn't seen Max for a few days.  He's grown, and seems much more like a normal baby.  I was so excited to see Max that I tried to do everything fun with him all at once.  I changed his diaper, put on his cream; we did some leg exercises, I changed his outfit, and all in the cramped confines of the NICU crib.  Because Max's wedge takes up so much of his crib, he was actually head-down for much of this rodeo. It never registered with me that Max was in the early part of a feed, so I was a little surprised when he vomited part of it back up.  He seemed much happier after I had cleaned him up and put him in a new new outfit, this time with the help of nurse N.  

N. agreed that Max had outgrown his NICU crib, and ordered a big boy crib from the peds service.  As show put "he's big enough now for a quote normal baby unquote crib".

I held Max while his feed went in; I talked to him about my job and sang the do-re-mi song.  On balance, he seemed to prefer the singing.  He was uncomfortable while the feed was going in.  As Carolyn has noticed, he prefers to sleep through the ordeals.

The NICU team were so excited by Max's oral competence overnight that they ordered one attempt at oral feeding per shift.  If he is awake and in good spirits, the nurses are supposed to try to bottle feed him but not the provoke oral aversion.  They're supposed to go very slowly and give him lots of breaks because his feeds are still going in quite slowly.  They don't want his mouth to get ahead of his stomach.

So, today, nurse N. gave Max 43 ccs over about 40 minutes in the afternoon.  And this evening, nurse R. 20 ccs over 20 minutes.  He would have taken more but we suspect that he was exhausted from his bath.  R. gave Max a new nuk-style pacifier, which he liked.  In addition, after losing a pacifier and being unable to retrieve it, Max stuffed his fingers in his mouth and soothed himself.  Max's older brother Felix, as revealed by this photo taken when he was three weeks old, also enjoyed sucking on his fingers.

Late night update (Saturday 2/14)

In the middle of the 9:00 PM feed Max was gagging, threw up and then felt better. His vomit was mostly mucus. This may or may not be related to the fact that the probiotic can gum up the feeding tube.

Nurse R. also reports that Max is now too big for the scale and his bath. She also claims to have heard him cooing and trying to talk--something Carolyn also swears she has heard once.

In tonight's poop journal entry: no poop. However, R. hears bowels sounds and Max has been gassy and uncomfortable. R. will do some knees-to-chest to try to get his bowels moving.

Max and the soothie

Max and the soothie
Originally uploaded by andreas.lehnert

Here's a video of Max in his bouncy seat sucking on his pacifier.

Evening update (Saturday 2/14)

For Valentine's day Carolyn and I took Felix to the zoo, where the animals were celebrating the holiday in their own style. (The gorillas were ripping up and eating the large paper hearts they'd been given.)

Max is now on his second day of the elemental feeding program. It appears that the change in diet has locked up his bowels, so we may be keeping a poop journal again (so far: nothing). Max spat up a little at his morning feed, although nurse K. blamed the vitamins and some jostling.

When Carolyn arrived at noon, K. was preparing to try another bottle feed of Max. He took 20 ccs and they think he would have taken more but he was swallowing faster than the flow from his ng tube, so K. was worried that Max was, in effect, compressing his own feed beyond what the NICU team are comfortable with. Max didn't show any signs of oral aversion, his vitals were good throughout and he didn't appear uncomfortable. Carolyn says he sucked calmly and steadily. We have to keep in mind that he's never been hungry, so oral feeding is something of a novelty for him, as opposed the necessity it represents for most babies. He hasn't made the association between sucking and relieving hunger. Nonetheless, he's done quite well with his oral feeding over the past day. Carolyn and I are extremely happy.

K. also reported that Max pulled out his ng tube this morning. For a time, he was totally untethered. K. reports that he looked just great, just like a normal baby.

Fun note: Max's formula, neocate, carries a label pronouncing that it is made in Liverpool, which is a city in England.

Carolyn held Max through two feeds. He was generally calm; when he got a little agitated Carolyn gave him her finger to suck and he calmed down. She tried to do some exercises with him but he was not a very playful mood. Max really just wanted to be held. Carolyn read to him and told him about our trip to the zoo. Max's two neighbors are on apnea monitors, which emit piercing shrieks at apparently random intervals so Carolyn and Max listened to those for a while.

Max didn't want Carolyn to leave this evening, and would start crying every time she put him down. She tried various strategies to settle him down, and finally put him tummy-down on his wedge staring at his butterfly. She patted his bottom as he reached for the toy and he relaxed enough to let Carolyn leave.

Gorilla nursery

Gorilla nursery
Originally uploaded by andreas.lehnert

Carolyn, Felix and I went to the zoo today. One of the gorillas had just had a baby and was one of the big attractions. This picture shows that she and her baby are behind glass walls and subject to constant scrutiny and flash photography. When I got up close, I saw a look in her eye that I recognized very well indeed.

Morning update (Monday 2/14)

A couple of interesting developments overnight, all of which Carolyn monitored in real time with calls to the NICU. First, Max's head circumference increased 0.5 cm. Given the recent abnormal head ultrasound and the fact that the phrenology service has taken to haunting Max's crib again, the night shift at the NICU called for a neurosurgery consult. At this morning's rounds, Dr. S. seemed to feel that this was an overreaction to normal head growth. He phoned us to say that Max's head has been growing at about 0.5 cm/week, and that as long as it doesn't accelerate from this pace we probably won't have to give serious consideration to a shunt placement. However, our impression is that Max has crept back to the edge and is once again being eyed by the phrenologists. As before, there's nothing to do but to wait and see what Max does next.

In happier news, nurse B. tried bottle feeding Max last night. (As she predicted, he was wakeful and alert around 12:30.) After a little coaxing, and over the course of about 30 minutes, B. managed to get Max to drink 40 ccs of his new elemental formula from a bottle. (At the moment, a complete feeding for Max is 70 ccs given over 75 minutes.) The formula, a brand called neocate, apparently tastes awful. However, as B. pointed out, Max has never actually tasted any of the gallons of breast milk he's been fed over the past four months: it has all gone directly to his stomach (or sometimes even past his stomach to the duodenum). I think this might be the first time Max has gotten a significant amount of nutrition by mouth. Dr. S. was impressed enough to order one such attempt per day as long as Max can tolerate it.

Evening Update (Friday 2/13)

Max and Carolyn had a great day together, and Max seems to be getting on top of his feeding. We also got some good news from our insurance company (more on that below). But no day in the NICU is one of simple happiness. This otherwise marvellous day ended with a reminder of just how many problems Max faces. After yesterday's hydrocephalus panic, the head phrenonologist dropped by to see Carolyn. He examined Max and found many subtle clues pointing towards intracranial pressure; he pronounced Max a "borderline" case for a shunt. My theory is that the phrenology service carry a grudge against Max for slipping out of their clutches last year. Carolyn was worried about the specific issues raised by the surgeon, but mainly she was overcome with the realization that Max will probably have CP to some degree or another.

That said, Carolyn has grown into an experienced NICU parent and has the courage to face all sorts of crises with a cool head. Because of various staffing problems, the step down NICU was overseen temporarily by a nurse on loan from the pediatric ward. Max was snoozing in his favorite position: his face firmly shoved into Carolyn's armpit and his arm around her neck for support. As usual, he had managed to work free several of the leads that measure his heart rate, breathing and oxygenation. His monitor was sounding all sorts of alarms. The peds nurse rushed over and said "clear his airway! reposition him!" Carolyn simply jiggled his leads back into position and the monitor stopped complaining. This appeared to placate the nurse, who remained somewhat shaken. The NICU is no place for the easily frightened.

Carolyn and Max played a bit, but for the morning Max mainly slept. He handled his feeds extremely well, including the dreaded vitamin feed. When he was awake, Carolyn read to him and did some physical therapy. He was very calm and alert, staring at Cj as she described our evening's activities yesterday. Carolyn told me she thinks Max is developing beautiful eyes.

In the afternoon, Carolyn thought to give Max room to move his legs around on his own; this required temporarily rearranging his crib. She took out the wedge: this is the inclined plane that Max rests and sleeps on. It has a basket to keep him from rolling to the bottom of the crib. But the wedge basket also keeps him constrained so that can't move his legs. With the wedge out, Max was lying flat in a normal, open crib. Max loved it, and he and Cj played for almost two hours. Max mauled his star, looked at the pictures in the crib, checked out the elephant mirror, all the while waving his arms and legs around. Carolyn noted that he seemed a little stiff, a sign that his muscles are unnaturally tense; this is a common neurological problem.

With his 3:00 PM feed, Max went off breast milk and started his elemental diet. The NICU team will try this for a while to see if Max's reflux is related to some kind of milk allergy. In practical terms, this gives Carolyn a window to consume all the dairy products that had been forbidden her. She is eating cheese and drinking milk at an unnatural pace.

Sainted nurse B. came at 5:00 PM (two hours before the normal shift change), so she and Carolyn got to spend some time together. B. unhooked Max from his monitor leads and carried him around the NICU like an untethered astronaut. One of the other nurses accused B. of being in love with Max, a charge she happily plead guilty to. B. told Carolyn that as word spread that he was to be turfed to HSC, he'd had a steady stream of visitors.

But Max may not be moving to HSC; our insurance company reversed its earlier decision to retroactively deny coverage for Max's stay in the NICU. In addition, they've agreed to let Max stay at Georgetown as long as he needs to. As reported to us by Dr. S., the fearsome head of neonatology, the insurance company confessed that it "hadn't realized how complex Max's case was." Is this good or bad news? Because we haven't changed our view of Max's condition, it's only slightly sad that a third party agreed he needed continued intensive care. The Georgetown NICU team may or may not recommend moving Max to HSC if a bed opens up in the next few weeks; we're not completely sure what goes into their decision. In addition, the new verdict lifted an enormous potential financial liability. A month or more in the NICU costs a sum of money that doesn't make sense on human scale. It's not a number one encounters outside of the business section of the newspaper, usually as part of the sentence "GM Posts Record Loss of $XX".

However, we had been looking forward to HSC's vaunted intensive therapy. Max saw only one therapist last week. Carolyn asked about this, and, in response, Dr. R. gathered the therapy team together. They agreed that, as an older, bigger baby than they're used to seeing, Max needs more and longer visits. They committed that between the three of them, Max would get four or five visits a week.

Finally, Max made Cj a card for St. Valentine's day. Those are his actual handprints!

Treating the baby, not the x-ray (part 2)

Max gave us a little neurological scare today. In addition, his hydrocephalus and associated (and evolving) ventriculomegaly are a constant source of worry. It's clear that Max is developmentally delayed, especially when compared to his older brother at the same (gestationally adjusted) age. We tell ourselves that this is only natural: he has not been in the ideal environment to develop and he has had a really tough course, with repeated near-brushes with very serious medical conditions. When we finally get to bring him home, he'll need aggressive therapy to learn how to eat and to make his other milestones.

All of that said, Max is approaching four months of age; even based on his original due date he's almost two months old. With Felix, we saw early indications of his personality that have, so far, continued to hold. Carolyn and I talked about what we're seeing in Max.

Today, for example, as Carolyn was changing his diaper, Max was waving his arms and legs around and crying just like a normal baby. But this was the first time she had really seen this kind of behavior. Slowly, it seems, Max is joining the ranks of normal babies. In addition, Max was fascinating by morning rounds, looking from speaker to speaker as the conversation progressed. Dr. R. has encouraged us to read to Max, just so he can hear the candence of normal speech; he seems hungry for it.

The picture that's emerging is of a sweet little boy who is curious about the world around him, loves to be cuddled, and who is bearing all of his trials with a kind of good-humored patience.

I mention all of this because it's interesting by itself. But also in light of one of the best pieces of advice I feel we've ever gotten. A pediatric neurosurgeon at Children's Hospital told us that the medical world will be full of doctors who look at ultrasounds, x-rays, MRIs and the like and sound the alarm. His philosophy, however, was to treat the patient, not the x-ray. For all I know, this might be a hackneyed cliche of medicine, but it sounded fresh to us. And, more to the point, when I stare into Max's face, I see a baby who, despite it all, is eager to get out into the world and explore it.

Evening Update (Thursday 2/12)

Max had a pretty good today. His parents, on the other hand, had one of those days in the NICU that involve a lot of sudden crying fits.

The NICU team ordered a head ultrasound as part of their standard discharge procedure with the idea that Max would be leaving Georgetown for HSC. The initial report was that it showed that Max's hydrocephalus was stable. The first indication otherwise was when the phrenology resident came down to order a CT scan, unaware that no-one had told Carolyn that the radiology attending had found evidence of continued ventricular swelling. One of those dire hospital scrambles then ensued; I'll skip the details. In the end, it appears that Max's left ventricle is swelling as it replaces brain tissue that is shrinking around it. This is probably still fallout from the head bleeds Max suffered around birth. It's not great news, but it doesn't at the moment look like Max is on the path to a shunt again, although the NICU team have increased their surveillance of Max's head circumference, fontanel and overall clinical picture.

The pediatric GI specialist, Dr. P., tweaked Max's medical regimen slightly. She has a much more upbeat assessment of Max's reflux than the NICU team. She is pleased that Max is tolerating feeds over 75 minutes, and she's not particularly worried by his fairly regular vomiting. Today (so far) Max only vomiting at the 9:00 AM feed--the dreaded vitamin feeding. He was uncomfortable at the noon and 3:00 PM feeds but then settled down.

Dr. P. is also encouraging us to try feeding Max an elemental diet. It turns out this means "elemental" in the sense of "simple", and not in the sense of, say, "kryptonite" or any of the other fun elements. This diet is the ultimate in hypoallergenic food. An allergy to, for example, breast milk could be causing all of Max's problems (although this seems like a slim possibility). On the one hand, breast milk is (usually) best. On the other hand, Carolyn will be able to binge on cheese and milk for a week.

Max has thrush, a kind of opportunistic fungal infection. He's being treated with a drug called fluconazole at Dr. P.'s recommendation. It turns out that fluconazole has a side benefit of being prokinetic: it moves gastric contents along faster.

And indeed, the fluconazole may be helping: Max has had a great afternoon and evening. He took some Maalox by mouth this evening, although he spit some of it back up. He handled his 6:00 PM and 9:00 PM feeds quite well. The sainted nurse B. reports that Max was not fussy or spitty this evening, indeed, he's been very happy; he spent two hours in his chair observing his NICU world. She has just given Max a bath and reports that he is now "zonked out". However, she expects him to wake up at midnight ready to play, as is his usual habit.

Carolyn signed the papers requesting a transfer to HSC. However, there is a two to three week wait for a bed. How exactly this will play out is unclear, but for now, Max is in the company of the NICU team that have come to know him well.

Evening update (Wednesday, 2/11)

Max had a fairly calm day, punctuated by emeses at midnight last night, and again this evening during the 6 and 9 p.m. These have caught the attention of the docs, but as of now they are not changing their treatment course. On other fronts, Max had speech therapy, showing no interest in the bottle; and physical therapy, showing mild interest before snoozing. After taking Felix to his first dentist's appointment this morning (let's just say there were a few tears), I spent the afternoon with Max. He got to sleep on me during his feeds, and we had some play/exercise time in between. We have a developing theory that Max does best keeping his feeds down when I am holding him upright and he can sleep while the food is going in. Needless to say, this is not a long-term solution to the reflux problem.

The plans are in motion to move Max to HSC, by Monday of next week at the earliest. Before he is moved, transfer evaluations need to be conducted by HSC staff and a bed needs to be available. In the meantime, the docs at GUH will continue their treatment course which involves trying to further compress Max's feeds (they are currently at 75 minutes) if possible and also further attempting feeding by mouth. If he shows emerging signs of distress or intolerance of compressed feeds, they may recommend the fundo/g-tube surgery and the move to HSC may be scrapped. It's up to Max at this point....

Max's next stop

It was a big day at the NICU, so let's start with the most important thing: how Max's day was. His feedings were compressed to 75 minutes, starting with the 9 a.m. feed. On his new schedule, he is fed through the NG tube over a period of 75 minutes, then he gets 105 minutes (give or take) off before the process starts over again. By the way, this means Max is never really hungry as far as I can tell, and this reminds me of something my great-aunt of good Midwestern stock used to say: "We don't eat because we're hungry; we eat to keep from getting hungry." Max tolerated the first three 75-minute feeds well (at 9 a.m., noon, and 3 p.m.), with no spitups at all and minimal visible discomfort. He also got in some snooze time on my shoulder for two of those three sessions, and we had a couple of "play" sessions as well. The one before the noon feed especially showed Max at his best and brightest. He was quiet-alert, willingly did his exercises and stretches, showed some interest in a few toys, and enjoyed The Very Hungry Caterpillar.

The nurses attempted bottle feedings at 9 a.m. (with the dreaded vitamin-laced milk) and again at noon. Max was really not very interested, protesting more during the earlier one and just not showing much interest at the noon session. No one seems to see this as a sign of complete feeding failure and all assure us that this process takes practice and time (more on this below). While he has had a lot of time, he has had virtually no practice up until now. The speech therapist has posted a sign by Max's crib, asking the nurses to stop the by-mouth feeding efforts if he shows any discomfort or aversion. They don't want him to start flinching every time something approaches his mouth; indeed, they want eating to be a pleasurable experience (or at least have it develop to that).

Away from Max's bedside, the other main thing that happened today was a fairly major assessment of how best to proceed with Max's care. This has been prompted at least in part by our insurance company (more on this below). Andreas and I met with Dr. C, the general surgeon who would perform the surgery to control Max's reflux. The procedure would involve inserting a g-tube, allowing food to pass directly into his stomach from outside, and something called a fundoplication, aka the Nissen. The purpose of the meeting was to find out more about the surgery and its associated risks and outcomes in general, as well as the specific benefits and risks for Max. Also at the meeting was Dr. S., the NICU attending physician from the last few weeks and Dr. B., a fellow.

All of these doctors crowded into a standard consulting room in the main part of the hospital. It was disorienting to see the NICU team away from their home turf. They wore lab coats, which are forbidden in the NICU itself.

The bottom line is that Max will likely be discharged from Georgetown and moved to a rehabilitation facility, The HSC Pediatric Center, as early as later this week. It depends on when a space opens up. HSC used to stand for "Hospital for Sick Children" and now, in KFC fashion, stands for "Health Services for Children." The NICU team have only recently raised transfer to this facility as a possibility, and even then only obliquely. In part because I didn't know that much about it, I initially thought HSC was like a nursing home and dreaded having Max go there. Indeed, there is a chronic, long-term care portion of the HSC that seems a little grim.

However, the HSC has a special unit for babies like Max that are trying to learn how to tolerate compressed feedings and are also interested in trying their hand at some regular eating. This special unit is known as "The Preemie Express", and was founded by Georgetown staff. So our view now is that the HSC is a rehabilitation facility where Max will get more intensive attention from speech therapists and physical therapists than he is able to get in the hospital environment. Indeed, there are more therapists at HSC than in the NICU, and a central focus is providing a stimulating environment. If the high-powered NICU is a maximum security prison, the step-down NICU a minimum security prison, then the HSC is a half-way house. Max has almost paid his debt to society, and now needs to learn how to integrate with normal society. So we have a better attitude towards the HSC. But nothing will make the commute easier:


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Dr. C. described the fundoplication/Nissen procedure in enough detail, and its associated risks, that we now really think giving Max a serious shot at getting on top of his feeding is worth the time. Andreas pronounced the surgery "barbaric", and "like mutilation". Dr. C. agreed, but also pointed out that in typical cases it works 95 % of the time. It seems that no better alternative has been developed in the 50 years since Rudolph Nissen first described it.

In brief, Max doesn't currently satisfy any of the four criteria that would require an immediate Nissen: failure to thrive, extreme acid damage to the esophagus, recurring aspiration, and what the medical literature delicately describes as acute life-threatening events (ALTEs) related to aspiration. If Max gets a fundo it will be because he needs to be tube fed and he has reflux. Simply inserting a g-tube will only make his reflux worse because it distorts a feature of the stomach with the only-in-anatomy name of "the angle of Hiss" (or is it "angle of His"? textbooks disagree).

The Nissen is complicated: it involves removing or dissecting structures such as blood vessels attached to the stomach, spleen, liver and esophagus, as well as constructing a collar around the base of the esophagus with dissected stomach tissue. This is why Andreas views the surgery as "barbaric". With such a complicated surgery, several different types of severe complications are possible, both in the short and long term. One big risk is that the surgery will simply ultimately fail to control Max's reflux, leaving us where we started, but with an abnormal stomach, spleen, esophagus etc.

The general failure rate is low, on the order of 5%; however, among children who, like Max, have a neurological problem, the failure rate is astonishingly higher. As many as 1 in 4 Nissens on children with neurological problems fail. No-one understands why this should be the case. Of course, "neurological problems" encompasses a broad spectrum of problems, including hypertonic babies, hypotonic babies, spastic babies, and babies with uncontrolled seizures. We think that Max is at the fairly mild end of this dreadful spectrum, but he definitely has hydrocephalus and has shown difficulty in regulating his autonomic nervous system.

The NICU team feel that Max is making good progress with the compressed feeds and his new medication regimen (this has only become clear in the last few days), and feel that he has the potential to avoid the fundoplication and perhaps the G-tube. The options essentially boil down to:

1. Schedule the Nissen and g-tube surgery to occur immediately;
   
2. Plan to discharge Max to home in 4-5 days;
   
3. Plan to discharge Max to the HSC for continued feeding therapy, as a step either to transitioning him home or as a last chance before a Nissen.
   

Given the risks of the surgery and Max's recent progress in feeding, we ruled out (1). Given the extremely unlikely outcome (I think we can say impossible) that he will be stable enough to come home in 4-5 days, (2) is out of the question. So we are left with option (3). Though we have never set foot in the HSC, Andreas and I increasingly see Max's moving there as a positive move which will benefit him.

In the end, the insurance company forced our hand: They told GU Hospital today that they stopped paying Max's bills as of February 1. You would think that Andreas and I would have been overcome by the vapors, given the daily rate of roughly $10,000 charged by GUH. Reasonably speaking, it will be a few days before Max can move to HSC, leaving us with an out-of-pocket bill of...well, you can do the math. Let's put it this way: college tuition is starting to look cheap. However, we trust the NICU case managers and directors to convince the insurance company that although ex post the decision to move Max out of an acute facility on Feb. 1 may have made sense, ex ante that was not at all clear.

Even though Max is in the low-intensity NICU, his nurse tonight and for the next four nights is the sainted nurse B. She reports that Max spit up only a little earlier this evening (at the same time he did so in other recent evenings she has had him), and that he does seem to be doing better on his medical regimen. She will keep a close eye on him.

Finally, during the Great Hirschsprung's Debate of December, Dr. C. took me aside and told me that his intuition was that Max didn't have Hirschsprung's disease. (Several members of the NICU team were on opposite sides of this debate; Andreas kept a running tally.) Today, Dr. C. said that his clinical intuition was that Max would get the hang of compressed feeds at the HSC and we would be able to take him home without surgery, albeit still tube-fed. As Dr. S. pointed out, teaching a baby to suck-swallow-breathe can take months. But once his feeding schedule is reasonable, and he's not likely to suffer an ALTE, those months can pass at home.

Max's second report card

Both sides of the NICU continue to run at full capacity. The new attending for the step-down (or "minimum security") NICU, Dr. R., started rounds this morning and, faced with a room jammed with babies, asked that they be kept private so she could quickly get up to speed on her many charges. Thus, Carolyn wasn't able to participate in rounds this morning; I'm sure the beleaguered residents breathed a sigh of relief. Dr. R. and Cj had a meeting of the minds later in the day.

Max had a big day today, with Dr. Kz, the developmental specialist, giving Max his second report card. It's been more than six weeks since his first report card, on which Max did not do well.

Because of the timing of Max's feeds and Dr. Kz.'s schedule, Carolyn and Kz. decided to stop one of Max's feeds so Kz. could assess him. But because Max had a full belly, Kz. forwent a full evaluation of Max's muscle tone and motor control in order to spare him gross physical effort, e.g. from lifting his head, that might cause him to vomit.

Instead, Dr. Kz focused on Max's ability to follow toys and faces, as well as his ability to regulate himself (a sign of autonomic nervous system development). Max did quite well on these so-called "social abilities", such as turning towards voices, following faces and so forth. Dr. Kz. did notice a bias: Max was more likely to turn to the left, follow objects and voices to his left, etc. In this, Max is simply following the country in my opinion. In the past, Max had favored his right side, so this appears to be something we can work on, as opposed to the result of organic damage from his asymmetric head bleeds.

Max was quiet and alert for most of his assessment. However, he did get a little red and agitated at one point. Dr Kz adduced this as evidence that Max still had some way to go in developing his autonomic nervous system. However, she thought that his ability to self regulate was much improved from her previous visit.

On Max's motor skills, Dr. Kz. satisfied herself by asking Carolyn whether Max was always stiff or always loose. Carolyn replied that he will sometimes stiffen, stretching his arms and legs, but that he also spends a lot of time relaxed. This seemed to satisfy her.

Dr Kz. also wanted to know whether Max smiled, and, if so, whether it was in his sleep or to us. This dislodged a two-year old memory from when Felix was this age. My reading at the time revealed that babies practice expressions in their sleep. Max does indeed smile, but only (so far as I've seen) when he's awake. Maybe he's done practicing?

To summarize:
Social skills: Very good (although he should work to correct his leftward bias)
Autonomic nervous system: Much improved (although still some way to go)
Motor/tone: Incomplete (but evidence is good)

Speech therapist S. came at 3:00 PM, displacing the physical therapists. Max was extremely groggy and did not do particularly well. S. was only able to very slowly get Max to swallow his Maalox, nor was Max interested in sucking on a nuk pacifier or S.'s finger. S. tried to get Max to take 10 ccs of milk by mouth; she was only able to convince him to swallow 5 ccs of it. She noticed from his throat movements that he doesn't quite have his suck-swallow routine right; he gets too much air with each mouthful of food. S. emphasized again the importance of not trying too hard to get Max to use his mouth; this runs the risk of generating a negative association and thus, the dreaded oral aversion. S. advised us to stop trying to feed Max at the first sign of distress.

Max didn't do well feeding by mouth today in part because he was already full of milk and just wanted to sleep. I have a crackpot theory that Max will only really get the hang of suck-swallow-breathe if he's properly motivated; that is, if he's hungry. After all, this is how other babies learn to eat. Under my theory, we should delay Max's feeds until he swallows some milk. Carolyn advanced this theory to S., who didn't denounce it outright; but S. did remind Carolyn of the importance of not creating the negative association and generally stressing Max out. "But he'll never make it through Chicago with an attitude like that!", Carolyn did not say.

Overall, Dr. R. told Carolyn that Max is tolerating his 90 minute feeds well, and that the NICU team will compress them again tomorrow. More broadly, Dr. R. confirmed our view that Max's days of trying to handle his own reflux are coming to an end. He has a week or so to prove himself. If he doesn't show marked signs of improvement, the NICU team will encourage us to consider other options: either turf him to a nursing home for children where he can be tube-fed on a more permanent basis, or the Nissen surgery.

Finally, the pediatric GI, Dr. P., dropped by to see how Max was doing on his new medical regimen. Dr. P. was the one who told me that dairy products were the only potential culprit in Carolyn's diet for Max's reflux. This was the statement that led Cj to completely cut any remaining milk-based products from her diet. Today, Dr. P. asked Carolyn if she was getting enough calcium. Dr. P. recommended a couple of Tums per day. She also told Carolyn "Max will be fine; you need to take care of yourself."

Evening update (Sunday 2/8)

The NICU was chaotic today; like visiting day at a minimum security prison. Just a few days ago the NICU was so empty that all the babies in the step-down unit had been moved back to the high-intensity unit. Today, every available bay had a patient, and I think they may have tucked a couple of babies into corners. In addition, we've noticed that the NICU inmates get more visitors on Sundays. Combined with the big influx of new admissions, it made for a hectic atmosphere.

We brought Felix with us for his second-ever visit to see Max. The nurses cooed appropriately over him, and the doctors wanted to know why his cheeks were red. Felix wasn't sick. The question is, why aren't everyone's cheeks flushed? The NICU felt hot and airless to me.

Max was sleeping when we arrived at his bedside. I took an extremely shaky series of videos (which I've strung together below) to try to give a sense of Max's NICU world without getting any of his neighbors in the shot. Felix stared at the back of Max's head and didn't say much. I took Felix out to the family room while Carolyn stayed with Max and talked to the NICU team. The family room was mysteriously empty. The new fish must not know about it. Felix happily played with the beat-up toys on offer, and we read an extremely bad P. D. Eastman book called Sam and the Firefly. The book did feature a train, which made up for its other sins. Felix and I went outside to look at a firetruck that was loitering near the hospital and otherwise enjoyed being outside on a very nice day.

The nurses report that Max spit up a few times over the past 24 hours, and that he sometimes seems uncomfortable. Nonetheless, he seems to be tolerating his compressed 90 minute feeding schedule without too much difficulty. When we got there, the nurses had let him sleep through a couple of scheduled diaper changes so as not to disturb him. However, he woke up shortly after Felix and I left, so Carolyn changed his diaper and outfit: she reports that he cried just like a normal baby would.

Max has a big day tomorrow, including speech therapy, physical therapy and the introduction of the new attending for the next few weeks, Dr. R. Dr. R. admitted Max way back in October, and her name is on the wristbands we wear.

Before his nap, Felix requested that Carolyn read I'm a Big Brother to him five times.

Evening Update (Saturday 2/7)

The campaign to improve Max's oral competence continued last night, with B. reporting that Max sucked on a pacifier for an hour--B. tried one with the "Nuk" style nipple. Max sucked on the Nuk again this morning; when Carolyn arrived, however, he switched to sucking on her little finger. (I remember that Felix enjoyed sucking on our fingers too.) Speech therapist S. pointed out that Max isn't a drooler, so he's at least swallowing his own saliva. In addition, Max swallowed most of his Maalox dose.

The NICU team compressed Max's feeds to 90 minutes starting at noon. On his second or third feed, he spat up about 12 ccs. Carolyn made sure the nurses recorded the cause as "her fault" -- she thought she might have jostled him a little too much. But she's also concerned that the NICU team will decompress his feeds in response. Carolyn didn't leave the NICU this evening until she had settled Max down--she used the secret nursing sleep-fu that she has come to understand after 100 days in the NICU. Want an infant to sleep? Put him on his stomach, establish barriers such as rolled up towels to keep his arms near his sides, and pat his butt firmly. (Warning: don't do this unless the kid is on a monitor.)

With his new compressed feeding schedule, Carolyn has more time to play with Max. They read books (the very hungry caterpillar continues to be a favorite), did some light physical therapy and watched the bustle of the step-down NICU.

Evening Update (Friday 2/6)

Carolyn spent absolutely all day with Max at the NICU, a first for her. No side conferences with specialists, no nearby errands to run, and, of course, no lunch. I've said in the past that managing the NICU is like a full-time job; today I think Carolyn erased the line between simile and reality. She is quite literally managing (at least part of) Max's care. We've become increasingly worried about Max's oral competence--his ability to use his mouth for anything other than crying--as he's racked up more days in the NICU. Today Carolyn talked to one of the nurses, M., about this and whether M., or any other nurse, could try to dribble just a few ccs of food into Max's mouth, encourage him to swallow, and watch him to make sure he didn't aspirate. As I describe below, M. has signed on to the project, even though she wasn't Max's nurse today.

Otherwise, Max did well today. Carolyn said that she thought that Max was just a normal baby, doing normal baby things. There was a three-diaper rodeo with bonus surprise urination, a classic of infant care. Max slept sometimes, he was awake sometimes. When he was awake, he and Carolyn played with developmental toys (he has no other kind) and read The Very Hungry Caterpillar. He remains fascinated by the last page, where the caterpillar becomes a beautiful butterfly. Max's feeds are going in over 105 minutes, with some thought to compressing them to 90 minutes this weekend. At rounds, Carolyn asked why everyone was so concerned about Max's habit of vomiting part of his feeds--after all, don't babies normally spit up? And indeed, today's attending made sure to write an order to keep Max's feeds somewhat compressed even if he did vomit up a little bit.

There was about a 30 minute gap between Carolyn's departure and my arrival. I didn't know about the plan that Carolyn and M. had worked out; indeed, M. wasn't even Max's nurse today. When I got to the NICU, Max was resting in his crib (which means, on his wedge) and emitting little mewls of displeasure. I got him out and held him while talking to his nurse, P. Without preamble, nurse M. walked up and said "Tell your wife I got Max to take 10 ccs by mouth earlier, and he did fine". Then M. leaned over to me and said "Carolyn and I are going to raise hell around here." M. has signed up to be Max's day nurse next Monday, Tuesday and Wednesday. Management is all about organizing and motivating; it seems that Carolyn now has the whole NICU team oriented around her vision for Max's care.

All of this happened during the 7:00 PM shift change, where I got to see beloved nurse B. again. She's taking care of Max tonight. I said that this was like a victory lap for Max, visiting all of his old friends before coming home. But of course he's not coming home any time soon (although maybe Carolyn and M.'s secret feeding program will move faster than expected).

As I was leaving the NICU around 7:30 PM I got a call from Felix's pediatrician. I'd called her earlier in the day and she was just then getting around to returning her calls. I think no one works harder than a pediatrician. I had called her to ask about the longer term clinical course of kids who had had Nissen procedures as infants. The NICU team only follow their patients for a few months. As part of our research into the Nissen, I wanted to hear how patients did, say, five years out from the surgery. Dr. J. was extremely reassuring. When I asked her how she would pick out the kid with the Nissen from a random group of ten year olds, she said she would look for the one who was "slim and trim". Although the Nissen doesn't interfere with getting sufficient nutrition, and children with Nissens seem (eventually) to have normal appetites, in Dr. J.'s experience, they're a little on the skinny side. Dr. J. also said that the g-tube remains in place for up to two years following the procedure, but more as a safety measure in case follow-up surgery is required. There's no day-to-day need for it past a certain point.

Like most pediatricians, Dr. J. had a little pat speech about reflux, which she delivered during our conversation. She described four categories of reflux, none of which were "preemie babies with NG tubes", so I guess Max doesn't quite fit. One of her categories was "happy reflux": babies who smile while they vomit all over the place. Another was "screaming reflux": babies who scream hysterically while enduring reflux. This speech crystallized a vague anxiety I've had for some time: why doesn't Max cry more? I had to have the nurses and Carolyn assure me that he can cry and that he sometimes does cry, for example, when his diaper is being changed for the third time in as many minutes. But when he's vomiting or in obvious discomfort from reflux he doesn't utter a peep. I worry that this is a sign of cognitive deficit. And then it struck me: I'm freaked out because my baby doesn't cry enough. Given the universe's ham-fisted sense of humor, Max will soon start to scream and not let up until the mid-term elections (and he'd have every right). But this is a long way from where we started.

And, at tonight's late night call in, B. told us that Max loved his bath, and was making eye contact with all the nurses ("flirting"). B. also told us that Max seemed a little less uncomfortable tonight than over the past couple of nights. He can't quite smile yet, but I wonder whether Max is simply happy.