Tuesday, August 14, 2007

I know this is Nova's blog, but we're coming up on what would be Alexis' 6th birthday, and her death date shortly after, and I suppose my focus changes as we go...

I have not been very good at keeping up here at Nova's heart. Rarely a new blog post. I honestly don't know what to say anymore. I don't want to post over and over about the heart walk and seem obnoxious, and I really hate sounding like all I do is grieve...

I hope that all of your little ones are doing well. I think of them often, I make my rounds to read your posts about once a month... but mostly, I feel like I don't belong, like a reminder of what COULD happen... as parents of heart babies, I figure you all think of that more than you should ever have to, without me popping up.

Did I post bout the card from Nova's nurses? It was so beautiful to hear from them, to know they still think of us. I only wish I knew how to tell them just how much it means to us.

posted by Erin @ 11:04 PM   2 comments

Trish is going to raffle off a hand made afghan (that I will make after the raffle in colors of your choice) The money made will go to the AHA for team Nova. It will be one entry for $3.00 or 2 for $5.00 go to paypal.com and send the money to erin@poeticacceptance.com and be sure to put "afghan raffle" in the note space. The raffle will run until Sept 7th.

Here is the afghan design I will be using........
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Photo Sharing and Video Hosting at Photobucket
Photo Sharing and Video Hosting at Photobucket

Congenital heart defects are the #1 birth defect. In the US alone, over 40,000 babies are born each year with a congenital heart defect. That translates to 1 out of every 100 births.

(To put those numbers into perspective, only 1 in every 800 to 1,000 babies is born with Downs Syndrome.)

Nearly 4000 of the 40,000 born of those with a congenital heart defect will die. That makes Congenital Heart Defects the leading cause of defect related death in children.

Even though Congenital Heart Defects are the most common birth defect, they remain the most unheard of. Without raising awareness, the advances we're hoping for won't be available. Funding for childhood cancer research is five times higher than that of CHD research, although twice as many babies die from CHD's.

And yet, most people have never even heard of Congenital Heart Defects unless their child or another family member is diagnosed with it. Two of my children were diagnosed, and died, of CHD.

Donate to Team Nova (American Heart Association/Heart Walk 2007 - Charlotte NC) Today and help us help other parents. Or, if you can't donate, please repost this.

posted by Erin @ 8:53 PM   1 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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