Wednesday, September 18, 2013

Sunflowers and other stuff

Before I show & tell sunflowers... I need to talk some Congenital Heart Defect stuff.

As you know (or may not know), our son Tyler was born with a Congenital Heart Defect called Infra-diaphragmatic TAPVR. Before Tyler was born, I had never given heart defects a thought. I really didn't know much about it truthfully and never knew anyone born with a heart defect. 
Every since Tyler's diagnosis with his CHD (and open heart surgery) 8 days after he was born, our world as we knew it changed forever. With that change came educating ourselves about his heart defect and what his (our) future would hold.  
The truth is, we don't know what the future holds for him and his little precious heart. We take every day as it comes. We don't know if he will need future surgeries. We don't know if he will have any issues playing sports or doing normal kid things. We are told he should be OK, but there are of course no guarantees. Yes he is repaired, but there are still things that need to be watched for the rest of his life. Scary not knowing, right? 
(p.s. in case you missed Tyler's story - Click Here

Here's what we do know. 
1 in 110 babies are born with a heart defect making it the number #1 birth defect.
CHDs are the #1 cause of death of children under the age of 2.
There are more than 35 types of CHDs.
CHDs are problems with the heart’s structure that are present at birth.
The complexity of some of these heart defects can require long hospital stays and multiple surgeries.

One of the most shocking things we learned was - There is no known cause for Heart Defects. There is still A TON of unknown. When we first heard this, I thought "How can this be?"
So this brings me to WHY we are involved with this CHD Walk for the CHD Coalition of New Jersey. The more money we can raise for the CHD Coalition, the faster we can find out how and why CHDs happen, and possibly how they can be prevented (Imagine that?!). This money for research can help make Tyler's future better, and all future little heart babies like him. This is beyond important to me. To us. To Tyler's future. 

Please don't feel obligated to donate, but we sure would appreciate it if you could - even a dollar makes a difference! 




And now... 
The Sunflowers.
A local farm by us had amazing sunflower tours this month. We took a hayride out to their ginormous field of sunflowers - and took pictures and enjoyed the beautiful evening. I have been trying to bring my camera with me more often lately - here are some of my pictures.












Julianna was the most excited about getting a piece of watermelon! 











Dude. 












4 comments:

  1. That field of sunflowers...looks like you could easily be in Italy :)

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    Replies
    1. Oh yes - I have heard that - it was quite beautiful! And a perfect night for the tour too! Fun for sure - and we all enjoyed. I love summer! :)

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  2. Wow, love the sunflowers, so pretty!! Love the color picture of Tyler, he looks so serious and I can't believe how fast he is growing.

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  3. Wow!! Those sunflowers just make me want to come visit...right now!

    Those CHD numbers are amazing...I do know babies & toddlers with CHDs, but I had no idea it was as common as 1 in a hundred. Good luck with the walk--such an important fundraiser!

    ~Carla

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