Monday, March 06, 2006

Yup, awake, and actually not stoned. He focused on Scott, and on his favorite toy, the camera, and even tracked the camera, which is encouraging. He's still prety irritable, and I'm still uncomfortable with the way he sometimes rolls his eyes up in his head. Still no way to tell whether it's the effects of the narcotics that they're still giving him to keep him comfortable, or possibly a sign of the withdrawal, or the hovering question of neurological problems. I know that he was much pinker today (amazing how pink they look when you're so used to the grey/blue duskiness that it becomes your version of pink) and he wasn't gasping or so damned exhausted.

It was just such a relief to finally see him cognizant of his surroundings, and aware of our presence - we haven't seen any semblance of 'our Nova' in nearly 2 weeks. This picture was at about 1pm this afternoon. We went back in at 2 (hee hee we finnagle extra time because I'm good like that, and a little pushy too ;) ) and he was asleep. At 4, he was one seriously pissed off little guy. The nurse had tried for some time to comfort him, but he was inconsolable. She let us stay for 40 minutes (alotted time is 15 minutes) so we could try to calm him, but he screamed the whole time. She had to give him morphine to sedate him to get him calm. Then at 6 we went up again and he was completely zooted, and out like a light. His blood pressure was a little low so we were trying to stimulate him that time. He wasn't having any of it, he'd had his 'fix' and he was in lala land.. She ended up actually picking him up and readjusting him in the bed just to get him awake and get his pressure up.

He does not like to be moved, and to be honest it looked like it hurt, but he only cried for 2 or 3 minutes and went back to sleep.

I will never be so happy as I will be the day I get to hold and snuggle him again. I miss the way he feels in my arms, the way his tears subside when I hold him close and nuzzle in his neck. It's been 12 days now. I have no false expectations about the length of his recovery, we know we may have another month to go, but I miss my baby. My arms are too empty. I dream that I hear him crying in his crib in the middle of the night and it takes me a minute to remember that he isn't here. I wish, honestly, that my life lent itself to staying there 24 hours, even if it meant sleeping on the floor. I hate leaving him.

Anyway, they're talking about trying him off the vent again tomorrow afternoon or Tuesday, but I'll be patient about that. I just can't handle him laboring so hard just to take a breath.It's such a catch 22. He can't come off until he's ready, but the longer he's on it, the more dependant he becomes on it, which makes it harder to come off.

He's been through so much, worked so hard - and we're not half way there yet. He's been through things that adults would have a hard time dealing with. He's amazing and I'm so proud of him.

As for the neurological possibilities, well, the questions still linger, and truthfully, we're no closer to knowing anything definitive. They say that at this point, even a neurologist could tell us nothing more. So I try not to worry about it, worrying accomplishes nothing anyway - and if he has suffered brain damage, well, we'll deal with it. Right now, we hold his hand, rub his beautiful little head, and be his cheerleaders.

posted by Erin @ 2:58 AM   5 comments

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Donovan "Nova" LeClair

Monroe, North Carolina
Nova was our second child to be born with congenital heart defects. We lost our daughter at 12 days after open heart surgery in 2001. Nova was born 12/2/05, with Pulmonary Atresia with VSD. He lived 6 weeks after surgery, and passed away on April 6th, 2006. This blog is his story, and the on-going story of how our family is dealing with the loss of our beautiful boy.
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