Monday, December 12, 2005

Yesterday was a frustrating day - we got to Donovan's bed to find him in a dirty diaper with a puddle of spit up in his blanket and smeared into his hair and cheek. He's not been a spitter-upper at all so far so that was kind of weird, until I realized they'd been giving him formula. (ACK!) But the formula explained the puddle, I'd puke too if someone made me drink that crap - ever smelled it? Yuck. Anyway, they never even called to let me know he needed milk, which kind of pisses me off.

We forgot the camera last night, so there are no new pictures which pissed me off too - but he looks exactly like he did yesterday... only smaller. LOL. OK, not exactly smaller, but he lost an ounce. Presumably due to the removal of the IV - god knows it wasn't because he isn't eating!

We had a new nurse, who told us that the catheterization is scheduled for tomorrow. Another thing they didn't call and tell us, another thing that pissed me off. And we still haven't been able to find out what time they'll be doing it, despite several calls and messages. God help them when I get up there today. Anyway, that means we're finally going to know exactly what's going on inside that tiny little chest, which is a good thing - but it also means we'll soon be one step closer to the surgery, which quite frankly, scares the living hell out of me.

As much as I realize that the surgery is the only thing that will save his life, I'm also all too aware of the fact that it's the thing that may very well end it. All of a sudden, the false sense of security we've lulled ourselves into has come to a screeching halt and now I'm back to freak-out mode, backpeddaling, and resisting the urge to throw Nova in the diaper bag and run for the exit. It's difficult to reconcile the image of the perfectly healthy baby I've posted so many pictures of with the image I know of what post-surgery looks like.

There's a fine line between the rational mind of a woman with this experience under her belt once already, and the completely irrational mind of a mother who's already lost a child to this exact process. There's also no margin whatsoever between the calm disposition of a visiting parent who comes in every day to love her son, and the woman who resides behind that mask, who's actually an hysterical screaming mess, begging God and the doctors and whatever powers that be to let her child be well and go home and grow up.

I'm like a pressure cooker right now. Knowing that this isn't the time for the tears or hysteria, I hold them back, but it's becoming harder and harder to control it - and the prospect of the explosion is a little frightening. Not so much explosion as implosion, melt down... He'll be taken off his feedings this evening for the cath tomorrow, which means that he'll be crying and miserable when we're with him tonight. I remember what that was like with Alexis - damn hard to know your child is hungry, crying to be fed and not be able to feed them. I hope that isn't the thing that sets me off, but even the idea of it has me fighting the tears.

He is 10 days old today, and the first ten days were the time for enjoying him, making the most of what we had - after that, tonight I suppose, comes the time for the reality check. Tomorrow is a new day with a different view. God help us, let there be something worthwhile on the other side of this mountain, rather than a Christmas season funeral.

posted by Erin @ 4:15 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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