Monday, February 28, 2011

For Rare Disease Day, I'm supporting my Ava Grace

When I first started my blog, I posted the story of my daughter, Ava. It's pretty long, so if you want the cliffs notes version...

She was born with gastroschisis, a birth defect where her abdominal wall didn't close, so her intestines were on the outside. She spent 66 days in the NICU, and had a total of 6 surgeries (4 for the gastroschisis, and the other ones for a hiatal hernia and pyloric stenosis).

What helped me the most throughout it all was Avery's Angels. Avery's Angels is a support group for parents and survivors of gastroschisis. When you're dealing with a birth defect you've never even heard of, the most calming and helpful thing you can do is talk to someone who's been there. Doctors just give you the facts. Sometimes you just want to cry on the virtual shoulder of someone who's been where you are.

As some of you know, I'm a veteran mommy for Avery's Angels. My job as a veteran mommy is to offer support and information for new mommies on the board.

But there are more and more mommies on the board every day. You know why? The numbers are on the rise. What used to be a 1 in 5000 birth defect, is now a 1 in 2200. You know what else is scary? The causes of gastroschisis are still unknown. Did I mention that there is only a 90% survival rate? Do the math of 10% of 2200. Those aren't happy odds.

So today, Avery's Angels is participating in Rare Disease Day, which is today. By participating, they hope to raise awareness about gastroschisis.


Besides providing information and support, Avery's Angels also tries to send out care packages to gastro parents. But it's all done by donations and a lot of it is done out of pocket. AA is ALWAYS looking for button up onesies (preemie or newborn sized preferred) and mittens. Button ups are the easiest for gastro babies to wear, since they are always hooked to so many wires. Gastro babies also either have a repogle tube (which pulls secretions and bile from the stomach) or a feeding tube, and mittens help keep those silly fingers from pulling out their lines.





             
             We went from this...
                       






  To this happy, 
beautiful,
amazing,
   smiling girl...








I'm doing my part today by writing this post. Perhaps I've educated you about a birth defect that you've never heard of. Maybe you'll say a prayer for all of those scared pregnant mommies, or those precious babies in the NICU unit at THIS EXACT MINUTE. Or maybe you have some button up onesies or mittens (or even socks) that are taking up room in your attic that you are willing to donate.

Today you'll find me wearing green, which is the official color of gastroschisis awareness.


All in support of this precious, perfect little girl. 



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...m... said... [Reply to comment]

Jennifer ~
My sister's little girl had the same thing. That is great that you were able to be a part of a support group when you needed it most! I'm not sure if my sister was involved in anything like that - but I'll be sure to let her know about it. Thanks for posting about this! You WILL get the word out about this Disease!
All the Best to you and your daughter,
ps - my sister's middle name is grace also :o)
...M... @ RequireLife

Lesley said... [Reply to comment]

What a tremendous ordeal your family must have gone through. I can't imagine what those 66 days in the NICU would have felt like.
I'm so happy to see that Ava is a smiling, healthy little girl. Doesn't hurt that she has a perfect mix of mommy and daddy's great looks!

My daughter was born with Tracheomalacia and although we didn't spend any extra time in hospital, she had a very shaky few months due to her body's inability to sustain proper oxygen levels. I had never even heard of it before and would have loved to had someone tell me that they had been there and that things got better. There's no way to measure how much the support of other mommies can help. Awesome that you are the helping mommy to new moms in that scary place in their lives.

Tanyia said... [Reply to comment]

Thank you for sharing with us, the information was new to me and I am glad I am aware of it now.

I am a new follower from I love my online friends :) I would love to have you follow back :)
http://xsurvivingmotherhoodx.blogspot.com/

LeeAnn said... [Reply to comment]

Wow. How scary that you had to go through that. I'm so glad your little girl is OK now and got through all of that.

Great post about raising awareness. I had heard of that happening before but didn't know what it was called, or how common it was.

Holly said... [Reply to comment]

What a precious little one! Following you back.

Kortney said... [Reply to comment]

She looks like she is doing well! Such a happy face she has! :)

Thanks for stopping by Kortney's Krazy Life and following! I'm following back!

Babes&Sages said... [Reply to comment]

Thanks for following my blog. Love your background with my favorite color ;)