Ski Jumper

Henry has picked up a new behavior recently. He lays flat with his legs straight out and his arms straight down perfectly in line with his body. We first saw this one or two nights ago and he's done it a few times since. I think he looks like a ski jumper as they flatten themselves out trying to catch the air. I don't think there have been many ski jumpers from Tucson Arizona but you never know. Ski jumpers have a saying, "Fat doesn't fly". Henry would certainly fit in with that culture, all muscle, no fat.

He has been doing ok recently. There's no major news. He is growing and continuing to take the breast milk, which is great. He has been rather fussy, especially today. He just can't seem to get comfortable and has more frequent episodes where his oxygen level drops and sometime his heart rate as well, which is not so good. The concern is that this is leading to another episode of NEC which would put a stop to his feeding and could require surgery. Last time he had NEC he didn't give the classic signs but did have increased apnea and brady spells which eventually led to enough concern that further tests were orderd and the NEC was discovered.

However, it might be nothing. He had one night a week or so ago where he was crying every few minutes and seemed to be in real distress. It passed without intervention. Might be gas, constepation, the formula they are supplementing his breast milk with, what Kate ate the day the breast milk was made, the vitamins they are giving him, reflux, the phase of the moon or something else. I wish he could just tell me "Hey, bald guy, don't just stand there, get in here and change my diaper!" or "Excuse me, but the iron level in my vitamin supplements has caused my bowel movements to be increasingly difficult thus causing me to strain which in turn lowers the oxygen saturation in my blood." But until my psychic abilities emerge we'll just have to wait and hope for the best.

Penny was his nurse during the day today and Melissa was on the night shift. Tonight he weighed in at 1230 grams (2 lbs 13.5 oz). This was the same as he was last night which is good because today was a Lasix day. I look back and see that he was 1060 grams on 6/24. So in the last 7 days he has been growing at just under 25 grams per day. That is really good news. It should be between 20-30 per day so he is well within the normal range. Hopefully he can keep it up. His length and his head circumference both grew 1cm this week. That is also good news. They don't care so much about the length but the head circumference is important to show that his brain is developing. The normal range is .5-1cm per week. He is behind so he needs to have the growth be at the high end of normal for a while to catch up.

Kate spoke to Dr. Wispe this afternoon regarding his growth. He said that she is right to be concerned about his slow growth. He has suffered several setbacks that prevented him from taking breast milk and so he is generally behind where they would like him to be. The doctors are very hesitant to give out numbers but Dr. Wispe gave Henry a 50/50 chance of being retarded/normal. I don't know what good that little stat does. We already know that he has a high risk of some sort of impairment but that doesn't change his course of treatment or how we relate to him. There's still a 100% chance he is our son and we are going to love him no matter what. We won't know the full effects of this whole episode on his developmental state for years. Right now he is doing very well. If he is going to have problems later, well, we'll cross that bridge when we come to it.