July 21, 2006

Aiden had a good day other then being so swollen with fluid. This scares me but I know there is nothing I can do. I just hate seeing him this way and feeling like it has to be uncomfortable for him and he just can't tell us what's wrong. He had a head ultrasound today and it looks fine. The area's they are watching seem to be clearing up in time, as we hoped they would. No new xrays to talk about and the plan, from what I heard tonight, is to feed him on Monday. So yes I will be stressing out on Monday with worry of what is going to happen next.. Surgery has scheduled a meeting with us, as I requested for Wednesday, which kinda throws me for a loop since I wanted this meeting before they attempted to feed him. But we will see how things go on Monday.
He is up on his weight again, but retaining so much fluid in his tissue that he looks like a completely diffrent baby to me. He now weighs 1160 grams, so he is up another 40.. He did have a great pee episode tonight, but so far hasn't dropped any of the swolleness.

On a great note, we got to kangaroo again, and he did wonderful. He got a bit fussy and cried when he got the hiccups but burrowed in and was fine after that. He layed there and tried with all his might to suck his fingers and fell asleep. I got to hold him for an hour and a half this time, which was awesome. I could of sat there for hours and hours. Boy i miss him already.
I was there tonight til 2am and could have stayed all night. Time flies when your with him. It's great. Can't believe he is almost 6 weeks old already. He's come so far.
Chuck was reading his medical record book last night and was amazed at some of the things they commented on. Just the fact of how they would have honered our wishes at that time if we decided on "comfort care" rather then to keep going with "heroic care" as they called it.
Even tonight Dr L, who was covering the wee end shift tonight (and was his attending the first 3 weeks of his life) said "he looks good" (puffiness aside) and has gotten big (no pun intended) She is amazed at what he has been through andthat he has gotten this far. I welcome the day I can take him home and then bring him back to visit and say look how far he has come now. Our little "superman"!!! I never thought you could love someone so much, and then love them even more then thata few seconds later.. He is my heart.. I couldn not, and refuse to, picture my world with out him!
Stay strong Aiden, keep growing, and sleep well. I love you bug!!!