Saturday, February 11, 2012

CHD Awareness Week

Congenital Heart Disease is the most common birth defect occuring in about 1 in every 100 babies born. It is also the leading cause of death due to a birth defect. I don't think you really realize how real these statistics are until you have a heart baby. I always knew that CHD was out there but it wasn't until our stay in Pediatric Cardiology that I realized how common it really is. There are so many heart defects that make up CHD, some worse than others. There are fixable heart defects.. which Ryker has (and I thank god for that everyday) and then there are defects that aren't fixable requiring a heart transplant.

February 7-14 is CHD Awareness week. All i'm asking is for each person who reads my blog to tell 3 people about Congenital Heart Disease. Just by promoting awareness we can encourage scientific research, encourage family and research funding, and provide support for those families who have children with CHD.

Ryker is a part of a study done by the Glenrose Rehabilitation Centre. They watch Ryker at different points of his life to see how he is developing physically, and mentally, and to check his hearing. If this study can save one child in the future from having to go through what Ryker has, and will go through, I will be happy.

For those who wish to go a step further and donate I would not only appreciate, but all the other families living with CHD would too.

Like I said, I'm only asking for awareness. By passing the word along you ARE helping greatly! If you wish to donate or not, that is entirely up to you. God Bless you!

On another note, I should add an update about Ryker! :)
He met with his pediatrician on Monday Feb. 6 and I'm happy to say he was up to 8lbs 14oz! We get him weighed again this Monday coming up and fingers crossed he's well above 9lbs! :)

He has not been feeding through his feeding tube at ALL for this entire week, and is taking bottles like a champ. We only use the feeding tube for his blood pressure medicine that he loves to spit out when we give it orally. (I would too, i bet it tastes super yucky!)

We're really hoping he can get the tube out soon! especially since we're not even using it.. Medicine will be a pain in the butt, but thats fine! The tube is much more of a hassle then Ryker not liking his medicine.. before long he'll have his surgery and won't need medicine :)

On the topic of surgery..
Because Ryker is in such heart failure (sounds scarier than it is! his heart works very hard making it hard for him to breath normally. He breaths very fast, which tires him out. this is considered pretty substantial heart failure) the Cardiologist is thinking he'll need his surgery much sooner than we thought. The cardiologist team was supposed to get together yesterday morning to discuss Ryker's case and what they should do next. We should find out on Thursday.

What we do know is he's getting a cath sometime this month.(which is inserting fluid into his heart to light up on the x-ray showing his blood flow) After he has his cath we should know when his surgery will be. I'm excited it may be sooner so we can really start our lives, but i'm also worried. The younger the child the higher the risk. But if this is what Ryker needs, than it is what it is. Keep your prayers coming. He's such a strong little guy.

Thanks for reading, I'll keep you posted!