Wednesday, May 31, 2006

I met Lisa through an online support group for parents with CHD babies. When I caught wind that she was in my area, and that her son would be going in for surgery soon, I felt drawn to contact her, drawn to be with her on the day of the surgery. But, you see, when you've lost a child to a CHD, it can get, well, uncomfortable, both for myself and for other parents of CHD babies. I don't want to be a reminder of the very real possibility all CHD parents face, others don't want to throw it in my face that their child lived through the same (or worse) condition/procedure that Nova died from. Then there's the whole deal with the tension of other people wanting to say "the right thing" to me right now, and me wanting to relieve that awkwardness for them, because, come on, there IS NO RIGHT THING. Right?

So we ended up emailing back and forth a bit, and eventually (pretty quickly actually) I gave her my telephone number and offered to go to the hospital the day of the surgery. She left it up to me because she was afraid it would be too hard for me, being there again.

Yesterday was her son's surgery, and I went, as I pretty much knew I would, from the time I found out that she was open to it. I wouldn't have gone if she'd said it would have made her uncomfortable...

I was a little nervous about meeting her, I'm funny about meeting new people that way... I'm a wuss - not exactly shy, but sort of. Anyway, she was super easy to meet and we talked for a good while. She had a bit of phone business to do, so I took that opportunity to run upstairs and talk to Kandi (Thanks for the job referrals Kandi!) and when I came back down, she was done on the phone and we all (Her, her preacher, a friend, and some family) sat around talking for a bit and the doctor finished with her son and was ready to talk to them about it. I figured I'd stay in the waiting room while they went and talked to Dr. Watts, but she wanted me to go in, so I did. (You should have seen the look he gave me when he saw me LOL!)

So the surgery went really well by his account, the baby did well - and Dr. Watts was more excited and optimistic than I've ever seen him. It was awesome to see a success story, awesome to see Lisa take that first breath after he finished talking, and frankly, good to see Dr. Watts so obviously happy. It must be this that makes him keep coming back.

So a little while later, after giving her a few hints and tips (like telling her she gets 4 free-meal tickets a day, and that she could stay the night at the hospital and they'd accommodate her) I went home. Later on she called to say that her son was doing really well, that he was already extubated, and that they were even discussing moving him to a room of his own as soon as this afternoon! She thanked me about 10 times for coming. I hope that me being there really did help; God knows it helped me. It was a huge healing experience for me, and I doubt she'll ever understand what an honor it was to be able to be there for his surgery.

I tried to call her earlier and get a report, but I couldn't get a hold of her. I'll try again in a while. I called twice, and even left a message! I never leave messages. I border on being acousticophobic. OK not really, but I do really hate my own voice when it's recorded.

Anyway, I hadn't slept at all the night before, so I was exhausted when I got home. We ate dinner and somewhere around 6:30-ish or so, I passed out on the couch, and slept for 12 1/2 hours! That's like a weeks worth of sleep for me, all in one night!

While I was there, I left a flier sort of thing there with the CVRU nurses, and one with the CHI Patient Reps, about the Heart Walk thing. I hope that some of them decide to walk with us, or at least donate. I really feel like the research that the donations pay for is something that's needed in the area of congenital heart defects, and I want to meet (or better yet, exceed) our goal.

Speaking of which, I need to talk to a man about some t-shirts. Want to see my design for our shirts?

This is the front side design:

and this is the back side, where all the names of all the heart babies will go:

You can click them to see them full size, but remember that they're for T-shirts, so they're HUGE...

The baby is doing REALLY well, he's in his own room, and they plan to have him home sometime this weekend!

posted by Erin @ 2:39 PM   2 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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