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Saturday, January 28, 2012

CHD awareness week is coming

First things first, check out this amazing pinterest board - The Faces of CHD - Congenital Heart Awareness Week Feb 7-12, 2012 - it links to stories/blogs of CHD warriors & their families.

 
Norah

Norah was born with heterotaxy, an ASD, VSD, interrupted IVC w/ azygos continuation and a touch of pulmonary stenosis, polysplenia (she has 2 functional spleens), an intestinal malrotation and some minor hydronephrosis. Norah has had 2 surgeries in her short life - the first, a Ladd's procedure, was when she was 5weeks old to correct her intestinal malrotation, and her second, the open heart surgery (1st post, 2nd post), was when she was 9.5months old to close her VSD.
We were fortunate enough to know she'd have a CHD before birth. It was a tough to go through the pregnancy not knowing what would be wrong with her (bad news started when I was about 12w along), but always loving her. She was, and IS, perfect. It took a long time to remember that she was perfect (at least to me) before I knew about her conditions and that they didn't change anything. She was still the baby I loved, she'd just have a more colorful story than some.

How to describe Norah... she's a ball of love, energy & chaos, always kissing or climbing or finding a way to get into something! There isn't a day that goes by that we don't find her in some strange spot (like the oven of the play kitchen) or acting like a complete wild child (like climbing through the bookshelf or hanging out on 'end table island'). She loves her family, especially her big sister and everything she does, and her pets. Norah hates when she's awake & Jordan is asleep - it's like a punishment I swear. She lights up the room with her smiles and makes you cringe with her screeches. It's go, go, GO from the moment she wakes up until the moment she falls asleep for the night.

She's just a baby like any healthy baby. Ok, I guess she's a toddler now, she is 14 months old and running & climbing everything, I'm just not ready to admit it.

this is the perfect photographic description of Norah - she does.not.stop.

showing off her scar 3 months after surgery
she's also a fashion designer
thought I was kidding about the play kitchen, weren't you?



Photobucket

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