Max is better

Max, Felix and I all seemed to more or less get over the family cold last night (Carolyn may still be afflicted). I had sort of forgotten just what a fun and charming baby Max is because the cold had made him slightly grouchy. Last night I think I saw a look of profound gratitude in his face when he saw his bed. He waited patiently for me to tape his leads on and otherwise prepare him, but he was asleep on his wedge before I could get the velcro completely fastened. He slept peacefully through the whole night, something that, having taken the night shift, I truly appreciated. If Max is asleep, I can replenish the pump, give him his meds and so on in a restful fog, never fully waking up.

This morning, while Max was taking his nap, I was working downstairs and keeping an eye on Max with the video monitor. I heard some stirring and tuned in Max TV (as we call it). I saw Max doing a kind of half pushup: he was holding his head up and had his torso levered up on arms held stiff. This is a trick I've had described to me by Doris and Carolyn, but which I'd never seen. Max was looking around, trying to see someone to play with, no doubt.

Carolyn remarked to me that Max doesn't cry unless he has a reason. The rest of the time he's focused on playing with his feet, shaking his rattle, and trying to get a smile out of passersby. It's unusual behavior for a baby. I happened to see Dr. B., one of his last attendings from Georgetown, today and mentioned myNICU-as-Skinner-box theory: that Max was conditioned by his time in the NICU to please his caregivers. She didn't completely dismiss it; she did say that Max knew what to do to get Georgetown's NICU team to spend an extra few moments with him.

As a measure of how improved Max is from his cold, he let me take a picture of him while he was smiling:



I attended a memorial service at Georgetown Hospital's chapel today for the 30+ NICU patients, including Ada, who died over the past year. It was my first time driving to Georgetown since Max's rather abrupt departure in March. The drive from the office was exactly as I remember it, as was the hospital itself. I didn't venture up to the NICU, but several of the NICU staff were at the service. While chatting with our old friends from the NICU (nurse B!), I promised to bring Max back. However, given our appointment with the phrenologists tomorrow, there's an uncomfortably high chance that Max will be back, but as a patient. I promised to bring him back on his first birthday.

The wall of the NICU is covered with photos of their patients while in the NICU, the overwhelming majority of these pictures are paired with a more recent shot. I admit that it was a real solace to me to see a picture of a very sick-looking baby juxtaposed with a picture of the carefree toddler he became. Of course, a few of the pictures on the wall are singletons, patients who died in the NICU; the NICU team, I've learned, remembers these babies as much, or maybe more, than they remember the others.

I've already started considering which pictures of Max I'll pin to the NICU's wall.

Going on our first walk

Carolyn went into the NICU this morning having heard that Max had some dark vomit on his clothing very early this morning. It was the vitamins again! Perhaps Carolyn is on to something with her suspicions.

But the big news today was that nurse J. suggested Carolyn unplug Max from his monitors and take him for a walk. Max clearly enjoyed it; he stared at the pictures on the wall, he turned to voices when people to spoke to him, and made the soft cooing noises we sometimes hear from him when he's particularly content. Carolyn even took Max out into the waiting area between the two nurseries (the step-down nursery remains closed for lack of business). When Carolyn walked Max around, the standard rules of the NICU were all suspended, including the first rule of the NICU, which is not to talk to the other parents. Carolyn had a pleasant chat with the only other parents that have been there as long as we have. Because of the complete lack of privacy in the NICU we can't avoid following their child's progress; nor have they been able to avoid following Max's. It was nice, for a few minutes at least, to admire each others' babies, like real parents.

Carolyn is also quietly polling the nurses for their opinion of whether Max should have surgery to attempt to correct his reflux. Nurse J. reminded Carolyn that Max has had severe reflux almost since the start, certainly since mid-December, and he's had several opportunities to overcome it. She also said that in her experience she seen only very few complications from the surgery.

As for Max's reflux today, I would grade his progress as only fair. He spit up a couple of times, but not very much, and once because of the accursed vitamins. He had a very smooth feeding in the early afternoon, but his 5:00 PM feed was tough, with Max showing obvious signs of discomfort.

Finally, the nurses and Carolyn managed to get Max to take his Maalox by mouth. This is a milestone in my opinion, because taking food by mouth is something Max failed spectacularly at his first attempt back in December. At the time, the NICU team pointed out that the mechanics of swallowing depend critically on having a functioning and organized brain, and they blamed Max's problems on his hydrocephalus. Getting Max to swallow his Maalox wasn't easy: they had to put the Maalox in his mouth and then get him interested in his pacifier. A few sucks, a swallow, and it was down.