October 2, 2006

Aiden is still very cranky at times. It's not like him to be like this either. It's heart breaking when he is crying and upset and nothing I do calms him down. Tonight he was awake with me for 2 hours and for a while he was just fussy. Once his belly was full he was better but still crankier then usual. He also had his hearing test today. I wanted to be there but they didn't tell me he was having it today so I missed it. The out come was, he failed again. Now he has been refered to Childrens for a diagnostic hearing evaluation to determine his hearing status. I guess reality is setting in now. There is a big possiblility that he may be hard of hearing, or worst case, deaf.
I'm struggling with this, along with so many other things. I look around and see babies born so long after Aiden and there already going home. I know there all different, and I know he is the best place to get the care he needs right now to fix the things that need fixing, but it's not helping ease the feeling I have inside. I just want him to be ok and not have to go through anymore crap. I just want him home.

So this is what we have on our plate for this week.. The hearing screening is done, so he won't go for the other one until he comes home. Until then we have to assume he either can or can't hear us, which just sucks. He will probably see the pulminary specialist tomorrow to assess him and see what we can do to get him off oxygen or if he has pulminary hypotension. Then by the end of this week he should go for his swallow study. Then Thursday we have a family meeting with the new doctor and we will go from there.

I know everyone keeps telling me to stay positive, and all in all I think I've done a pretty good job getting through this. But right now I feel like the weight of the world that I've been carring on my shoulders, is getting a bit heavy. My life is consumed with two things right now. Trying to get to work and going to the hospital to be with Aiden. In between that I try my best to eat, sleep, and keep up with the house and bills. I'm finally starting to get to the point where I feel burnt out.
I'm hanging in there, what choice do I have really, and I'm staying positive the best I can, but I'm not to sure I can take many more months of this. I was hoping we were on our last 4 week streach, now it's looking more like 8 weeks, which means Aiden will be 5 1/2 almost 6 months old when he finally gets to come home.

This I will say.. I would not wish this ride on my worst enemy... I dream about having more kids someday, but if I ever have to go through this again, then I'm done, my dream of having 4 will be a little shorter cause another ride on the NICU train and I might end up in a padded room.