It was a pretty busy day yesterday. Thursday night they started tube feeding Kai. They tried to do the bottle, but he wasn't able to figure that out. They keep increasing the amount of formula that they are giving him. The occupational therapist has developed an oral motor program for Kai. This is to help him prepare for safe oral feeding. He also gets nutrients through an IV and they keep decreasing that amount. When I called last night to check on him, his nurse said that they removed the IV to see how he would do with just getting the formula intake. So hopefully he is doing fine without the IV. There was some talk about them possibly doing a swallowing evaluation on him. This is one of the things that Kai has to be able to do in order to come home. We are still waiting for the orthopedic doctor and the eye doctor to look at him. So hopefully they will look at him within the next handful of days. We met with the genetics doctor yesterday. They are going to draw some blood from Kai on Monday and send out for some certain tests ( I have a hard time remembering what everything is and the specifics). But I believe this is to look at his cooper levels and then also look at this specific gene. There are a couple of possible disease/disorders that they are looking at and so this test should let us know either way. I believe it may take a couple of weeks to get these results. Whatever Kai has, it is very rare. So that's about all that we have learned right now. It seems like such a slow process, especially when we want answers now. I know that we have to be patient, but it is so hard.
Kai looks better everyday. His skin has more color to it and he seems to be less wrinkly. Yesterday, I got to change his diaper for the first time. I have never been so scared to change a diaper. He just seems so fragile. It is so hard not being able to do all the normal things you do with your baby right after birth. I was able to hold him again yesterday and I didn't want to let go.
We are staying at the Ronald McDonald House in Minneapolis so that we can be near him. We are basically taking things day by day. As much as we want the boys to be up here, it is really hard to have them up here. So the boys are going back down to St. Peter. They are both having a hard time with everything. I feel so bad, they need us and so does Kai. Hopefully we will be able to bring Kai home soon. There are certain things that Kai must accomplish before he can be released; the feeding that I had mentioned earlier, maintain his own body temp and breathing correctly on his own (which I believe he is doing just fine with).
Levi is going back to work next week (unfortunately) and I will probably stay up here. This is really hard on all of us and I know we are going to get through this. Thanks everyone for all the love, support and prayers!
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