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.