Thursday, February 23, 2006

We did the 12 hour dance, we did the 24 hour dance, now we've done the 48 hour dance. Each little bit is such a huge accomplishment - his little body is working so hard just to survive. (It's so frightening when you realize that you've begun to measure your child's life in 12 hour increments - he's lived 12 hours - YAY! 24 hours - whoopee! THIRTY SIX HOURS! YEAH!!!) So many tubes and wires just to keep him going. But he's doing pretty well, considering. They're weaning him off of the epinephrine, which helps stabilize his blood pressure, and he's holding steady as they take him off of it, so that's good news. His heart rate is still higher than normal, but looking good, and getting better bit by bit - a notch or two lower every time we visit.

His color is better today, but he's a lot more swollen. They say it's normal, but it's hard to see - he actually looks worse tonight, despite the fact that he is actually a smidgen better. It's such a slow process.

We spoke with Dr. Watts tonight. He's very cautious - it's just his nature, he doesn't exactly bubble over with positive energy - but he's honest, and that's more important to me right now. I was talking with Candy, Nova's day nurse, and her comment on Dr. Watts was, "you'll never meet a bigger pessimist, but he takes each case very personally, and he'll always tell you the truth. He just has to be very careful with what he says, especially this soon after surgery."

I have the utmost faith in his surgical abilities, and I knew he took these cases personally when Alexis died, and he had tears in his eyes. I also understand that he can't even begin yet to tell me that Nova is going to be ok, it's too early and he's still so sick. I just, I don't know, I guess the mother in me really WANTS him to say, "OK, Nova's gonna be great, you can stop holding your breath now." The truth is, no matter how well he's doing right now, 15 minutes from now everything could be totally different. And I need to keep that in mind, remember it, and not let myself slip back into that damn sense of false security.

It must be a hard job for him - he wants these kids all to be OK, he invests so much in them, and it has to be difficult not to give in to the obvious needs of parents who just want everything to be 'fine.'

Anyway, there are pictures from today - fair warning, he really does look worse - I don't know if that will really show in the pictures though. I'm going to upload some of them now.

Thank you again to all of you who are rooting for him. He's fighting, and improving by tiny bits.

posted by Erin @ 10:32 PM   0 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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