DAY 9: JULY 15, 2008

Finn's nurse called our house around noon today and said they wanted me to try to nurse him. I think I practically flew out the door.

It's hard, because I've never struggled with nursing any of my kids. They all took to it like ducks to water from the very get-go. It's just not going to be like that with Finn.

So I got there, sat down with him and put him to the breast just like I did with all my other babies. He cried. He got pretty upset. He didn't want any part of it. The nurse was patient and encouraging and gave me some pointers, but after awhile it became clear that he just wasn't going to accept it, and since his feeds are on a pretty strict schedule, we had to get him to take some milk by bottle. I, of course, felt disappointed. The nurse tried giving him a bottle of expressed milk, but he reacted pretty much the same way as he had to the breast - just wasn't into it. He got himself so worked up that he tired himself out and went to sleep and the nurse said we should let him sleep for awhile to conserve his energy.

At some point Sue, my wonderful midwife (love you Sue!) showed up at some point and sat with me and Finn for a couple hours I think. She tried to help me nurse him too, but it just wasn't working.

A girl from the feeding/development "team" came in to evaluate his feeding skills and she was able to get him to take a full feed (10 cc's) from a bottle using a slow-flow nipple (the nurses had been using a regular nipple). She said that he actually has good muscle tone (a lot of DS babies have low muscle tone which interferes with feeding), a good suck, he puts his tongue in the proper position, and she thinks it's just a matter of getting him used to sucking on something and having something come out of it. He's gotten used to sucking on a paci, and of course nothing comes out of that. She also said that these types of feeding issues are common with babies who have had gastric surgery, have been intubated and had all kinds of other stuff put in their mouths and down their throats - it traumatizes them and leaves them with "oral aversions" that only time and patience will help them overcome.

I tried nursing him one more time before I left, and it was the same - no luck. I'm trying not to be too discouraged - it was only the first day that I tried to nurse him after everything he's been through. So I go back tomorrow and meet with the feeding team again, and we'll see what happens.

He was quite a bit more awake today while I was there - this is the most alert I've seen him, and for the longest stretch of time, since he was born. I took some video on my camera and had hoped to upload it here but it wouldn't upload, so I'll just share a picture:

The nurse mentioned something, almost in passing, about his "heart issue." I was like, "What? We were told a couple days ago that his heart is fine." She couldn't/wouldn't elaborate, but went to get the attending physician to talk to me. Turns out that Finn does indeed still have a hole in his heart. I am so furious that someone - a doctor! - told Michael the other day that the hole had closed and his heart appeared normal. What the fuck?! So he does still have a hole (atrial septal defect). The way it was explained to me is that all babies have this hole while they're developing in utero, but most of the time the hole closes within the first few days after birth. Sometimes it doesn't. There is still a chance that it will eventually close on its own, but they want to keep an eye on it, which will mean periodic echocardiograms. The doctor assured me that it's not life threatening, and it's not the more serious heart defect often seen in DS babies. But still. He said not to spend too much time and energy worrying about it. Clearly, he is not a parent.

It's been another long day, and I need to try to get some sleep.