Picky baby

Jenn and I both had good visits with Lewis today. He continues to be pretty fussy - he particularly likes being held, upright, by Jenn or I, with the parent standing up, swaying back and forth. He gets upset if we sit down, transfer him to someone else, or change his position. Even then, keeping him from crying seems to be about 50/50. At one point today, he was calm and quiet for a minute, it turned out that he was pulling out his feeding tube, which then had to be replaced and x-rayed to make sure it was in the right spot. Well, at least he's paying attention, right?

Speech - making some progress with sucking, though the therapist still can't get him to root appropriately (that's when he goes looking for milk). He did better with the pacifier and sucking on a finger today and he's better able to control his tongue, which is important.

Physical - making progress here too, but still a long way to go. Lewis is no longer weak in his trunk - he's now showing what the therapist called "hypertone", which is sort of stiffness of the muscles. He's arching his back a lot and keeping his legs stiff. Apparently brain swelling tends to make babies quite flaccid at first and then then hypertonic, after the swelling goes down. The progression is typical, but it is this stiffness that was anticipated and needs to be treated with physical therapy.

Meds - Lewis' IV was taken out today, so he's done with the meds from last week's pneumonia. The IV was starting to fail. Unfortunately, they'll need to start a new one for his surgery on Friday, this one wouldn't last.

I also spent a some time with the physician who is head of the NICU today, to learn more about the need for surgery. Ultimately, it appears that there aren't other good options in Lewis' case, so the Nissen surgery is our only good choice. Hopefully, Lewis will be happier when we solve the reflux problem. In the meantime, he's made it clear that he knows what he likes, so we'll humor him 'till Friday.