Monday, March 2, 2009

Evening Update (Monday 3/2)

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

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

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

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

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

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

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

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

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

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

Friends of Max