Monday, December 29, 2008

Max's first report card (Monday 12/29)

(Note-this is a long post; I'm including a fun video at the end as a reward if you make it all the way through.)

Max got his first report card today, and it reminds me a lot of the report cards I used to get back in the 9th grade (not a high point). More on that below. Also, the NICU team are going to do a barium study tomorrow morning of Max's swallowing. He may be aspirating his milk, i.e. drawing it into his lungs, which would explain his trouble maintaining his oxygen saturation, especially at the end of his feedings. The attending, Dr. K., mentioned that if Max can't get the hang of swallowing he might need a tube directly into his stomach. However, Dr. K. is rapidly gaining ground for the title of Gloomiest NICU Doc, so Carolyn and I aren't obsessing over this too much.

Returning to the day's report card: Dr. Kz, a physician specializing in neonatal development, evaluated Max today. She graded him as "satisfactory" or "needs improvement" in at least four distinct areas.

First, the bad news. Max's weaknesses are autonomic nervous system instability and an abnormal motor system. The autonomic nervous system is the part of the brain that regulates things that don't usually require conscious thought, such digestion and breathing. Dr Kz. noted that Max's measured oxygen saturation would fall when he was picked up, jostled about, etc., suggesting that Max has trouble regulating his breathing. Carolyn and I understood, intellectually, that unlike most babies, Max was having trouble with his breathing and digestion, but we're a little depressed to see Max do poorly in this particular class. The good news is that he has many years to get it right. And, let's not forget, he outright flunked Pooping 101 the first time he took it, and now seems to be scraping by with a "C-". At this rate, he'll be a star pupil in a few more months.

Max also got a poor grade for an "abnormal motor system". We don't quite understand this yet, but it seems to have something to do with Max having relatively low muscle tone in his trunk and relatively higher tone in his arms. Interestingly, Dr. Kz. didn't note an asymmetric response--he reacted the same on both sides of his body. Max's head bleeds were asymmetric, so the fact that this isn't translating into an asymmetric physical response might be good news--I'm treating it that way.

Dr Kz gave us some suggested therapy for Max's abnormal motor system; as a side benefit, she settled a long-running parenting debate. The primary therapy appears to be tummy time, and other exercises designed to strength his neck muscles. Dr Kz suggested that we help Max get "organized" (a word she used quite often) by keeping his arms close to his chest when changing his diaper, soothing him etc. This effectively ended the debate we'd been having about whether it was better to coddle Max or to expose him to the rigors of life. It appears that coddling--defined as keeping Max happy when changing him or moving him--is better than trying to toughen him up by letting him try to withstand these stresses without help. That has always been our instinct anyway.

And now, the good news. Max got good grades for his alertness level and his hearing/reaction to noises. That Dr. Kz. found Max to be alert was a surprise, given his ability to play possum. She also said that Max reacted appropriately to sounds and would track voices. Dr Kz suggested that Max would react well to being soothed by being spoken or sung to. In her defense, Dr Kz had not heard me murder "Snake Baked A Hoecake" when she made this recommendation.

More good news: Max was clearly rooting today (an unforgettable sight) and, according to Carolyn, obviously very hungry when it was time for his 5:30 PM feeding. Nurse N. reports that at his 5:30 PM feeding Max was offered 10 ccs and managed to successfully swallow 5 ccs.

This has been a long and somewhat painful post. As a reward, a video of Max's older brother discussing how to pronounce "fire truck".