CHD Awareness Week

The week of February 7-14 is Congenital Heart Defect Awareness Week. Every year the heart community spends this week sharing facts, stories, awareness and encouragement. While I will share with my readers that 1 out of 125 children is born with a congenital heart defect and that approximately 40,000 babies are born with CHD in the US each year, I think that most people who read this blog are already aware of these facts, because we are living with CHD everyday. We have all experienced that one terrible day, the day we found out that our children were not perfectly healthy and would require surgical intervention if they hoped to have a life with us. We have spent many nights in the hospital as our children’s little bodies worked hard to recover, we have spent so many days in doctor’s offices, or on the phone advocating for our little ones. We fight the insurance companies, we push to be heard, and we do it all for the love of our precious kids.

This week typically gets me down. Partly because right in the middle of CHD Awareness Week is Drew’s birthday. And with his birthday comes the memories of the most difficult time of my life, the week between his birth and his first open-heart surgery. During this week it seems I can not escape the stories of diagnosis, surgeries, complications and how many children don’t survive their CHD. All in the name of awareness, but I sometimes think I am too aware. It brings those feelings right back to the surface, in full force. But, this year was better. I had a few moments on Drew’s birthday, but made it through the rest of the week without letting those feelings get a foothold.

Instead of dwelling on the tragedy of CHDs, I am trying to focus on how I can make a difference. Earlier this week our support group, Hearts of Hope, put together baskets full of delicious treats to say thank you to the cardiologists, surgeons and nurses who take such good care of our children. Our family delivered the baskets to UC Davis on Wednesday and it was fun to see how excited they were to receive them.



We are also organizing a care package donation drive to collect items for our care packages that go out to families who have children recovering from heart surgery in our community. If you are able to donate any of the following items, please contact me and I will arrange a pick-up. {toothbrushes (in individual packages), dental floss, travel size shampoo & conditioner, deodorant, mouthwash, hand lotion, small hand sanitizer, pocket combs, pens, small non-perishable snacks}

Today we are continuing with our family tradition of bringing balloons to all the children in the hospital at UC Davis. My minivan is packed with 100 red heart balloons and we will be delivering them to the kids later today. We are also bringing thank you treats for the nurses and crafts to do with the kids in the playroom.

Last night we attended the Camp Taylor Fundraiser Dinner. What a night! We had the best time and loved the silent and live auctions. There were some tears though, listening to the kids talk about their lives and how much attending camp has made a difference to them was emotional! These kids are absolutely amazing. I’m glad that we could help this organization.


I am curious about what everyone else is doing this week. Leave me a comment and share how you spend CHD Awareness Week.