July 15, 2006

So far all the calls to the NICU today have gone well. Aiden is holding his owe and the talk is to still ween him off the dopamine. This will be a great thing so I am again, as usual, keeping my fingers crossed.

We went in for the AM visit and had a "family meeting" with the docs. It was to go over a few things, change a few orders we had put into place, and make sure we are all on the same page again. They are still surprised Aidens lungs are doing so well. There still terrible compaired to a "healthy full term babies lungs" but much better then they were before and that is a good thing. He seems tobe tolerating the new vent better then he ever did and they have started to ween the dopamine down. During our night visit, his nurse got him even lower, and is determined to get him off it. We came to the conclusion too that his receptors in his body are basiclly so use to the dopamine that they are not responding to it anymore, that is why he needed such a high dose, but the ween should be easy now because the amount he is actually getting at this point, his body may not be listening too. If this is the case (and it looked to be tonight anyway) then he may be off it by tomorrow. They also mentioned that as long as his BP looks ok from his ART line and corilates with the cuff pressure when taken, that they will then take out the ART line and just go by the cuff, which will be taken every hour. So that is one less IV in him. He will then have 3 limbs free at once.. I don't think he will know what to do with himself.
On another positive note, he seemed very happy tonight. He knew my voice right away and woke up and looked at me. he seems to have more eye control to and follows me (and bright colors) I believe next week he will get an eye exam. Somewhere around 6 weeks of age. Our hopes are they will just come back and say they are premature. That is what you want to hear.
The docs also talked about his gut some more. When they day comes they can feed him (as long as he gets off the dopamine and stays off) they actually said no one really wants to be the one to do it, they are scared. No one wants to be the one to say ok then have something go wrong, like a blockage, or him to get sick (infection) if there is still a hole. it's going to be a big and super scary day. As for myself I am staying super positive, lately he seems like a happy baby, well considering all he is going through, and that helps me so much. It's still really hard and there are days I have to fight the tears and be strong. Some days ( like today) I cray and don't even know why I am crying. Well I know why, cause I miss him, and want to hold him, and want to be a "mom" to him and I get really over whelmed. Some days I get really sad or crabby, then I see Aiden (like tonight) and feel so much better. I'm doing the best I can, and that's all I can really do. It's just really hard to pull myself away from the NICU and try to live life and do other things besides be at the hospital. I feel guilty and miss him so much when I am not there. As for Chuck, he is hanging in there too. Some times I think so much better then me. I don't know, I think men just process things like this differently and react different too. He doesn't "need" to be there every minute like me (and on my crabby days although I never say anything to him, I have a hard time understanding that), but I know he loves Aiden just as much as I do, and he misses him all the time too. Maybe he is just stronger? What ever the case may be, all I can say is that we deffinetly handle and deal with it two really different ways, but we are hanging in there and doing ok for the most part, so far.
PS the pic of Aiden with the pooh bear thatI posted was taken the other day. The pooh is only 6 inches although he looks huge and makes Aiden look so much bigger