September 29, 2006

It's been a tough day today. Aiden had PT and that went well, but before I got there today I guess he was very cranky. The nurse said he cried and fussed for over two hours. This isn't like him at all. They tried to bottle feed him and he didn't do well. He pushed the bottle away, arched his back and wanted no part of it. After this, at rounds the doctors and nurse decided that they will stop bottle feedings. They don't know if that is what caused his fussing, and since another nurse had mentioned he did really poor and didn't want the bottle at another time, they think that stopping the feeds are the best bet. However the nurse today looked back in the documents and there are no notes of Aiden doing this before, and no one has mentioned it to me, so I was a bit shocked. Either way they have stopped. The plan is to consult the pulminary specialist from Childrens to see Aiden and see if he can assess him and get him off the oxygen he is on. Even though it is a very very low amount, they want to make sure they can get him off and assess to make sure there are no underlining respitory issues. Then he will go for a swollow study to see if he is asperating or if he swollows with no issue when given a bottle. This study won't be done for a week, then if he fails the study he will have to wait 4 days to a week for another one. He can't bottle feed until he passes the swollow study. This just sucks. I know it's in his best interest but i thought we were close to coming home. I was getting my hopes up that we would have him home in a month or so. Now with all this it makes me feel like he will be there for all of October and November.
I don't know how much I can take. I'm not sleeping at night, which makes it harder to get up in the morning to get to work, when I am at work I want to be with Aiden, and when I am with Aiden I just want to cry and take him home. Emotions are setting in. I'm tired all the time, and I'm getting depressed. I don't think I can do this much longer. I am tired of the NICU, tired of the tubes and wires, tired of seeing Aiden and then leaving him behind.
I cried today talking to Chuck ans even though he was on the line I felt so alone. I hate this, I hate all of this, and I wouldn't wish this on my worse enemy. Being in intermediate doesn't help either. We have a new doctor coming on for October, our primary get bumped, and the nurses Aiden has don't really know him. I know part of that contributed to him not doing well on the bottle too. It's just hard, and I feel like I'm falling apart.

Please keep praying that this study goes fine and that we get him off the oxygen. Please pray that nothing else goes wrong and Aiden comes home soon. Please pray that I can stay strong not only for myself but for him so he doesn't feel my fustration.