Wednesday, February 01, 2006

Nova had his cardiologist appointment again on Monday. It's been a weekly trip since he had his second heart cath on the 13th. Every time we go, I spend the hour ride up there chanting inside my head, "Let the numbers be high, the same at least - let the surgery be put off just another week, just one more week." And the whole trip back, I think about the surgery, the inevitability of it. It's like a slide show in my mind - a slide show of all the images of Alexis after the surgery, her funeral, plus the ones I make up in my head about what recovery will be like. I suppose that means I'm hopeful that we'll make it to the recovery process - but trust me, they're unpleasant images at best. A mother just shouldn't have to imagine her child's chest cut open, or drainage tubes or bloody bandages, or ventilators or NG tubes.

Anyway - when we went on Monday, his numbers were virtually unchanged since last week, and Dr Bensky is going to put us on a 2 week schedule. That means that there will only be 2 more visits with him before Nova is 3 months old, and the surgery is imminent. So, good that Nova is doing well enough that the doctor feels comfortable only seeing him bi-weekly again, bad that I've become psychotic enough to see his life in 2 week pre-op increments.

And here's just to show how shallow I am. Every bath time, every outfit change, every time that Nova is shirtless, I find myself looking at his bare little chest and regretting the fact that soon, that perfection will be marred with a scar the entire length of his chest. I wonder what it will look like, if it will be something kids tease him about, something that will turn women off when he's an adult. We're not talking about a little scar here, it'll be huge - I mean, I've seen scars from open heart surgery before, and they're ugly, horribly frighteningly ugly.

And don't give me any shit - I don't want to hear about how after the surgery we'll look at that scar as a reminder to be thankful he made it through or whatever other crap optimism you're brewing inside your head ok? Of course I'll be happy and thankful when he makes it through the surgery, but I won't see that big ugly scar as a good thing, ok? Ever.

OK, enough out of me for now, I'm feeling too pissy today to post anything that won't come off as being just piss and vinegar.

posted by Erin @ 6:20 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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