2 year anniversary: Open-Heart Surgery

August 25, 2010: We needed to arrive at the hospital around 6 AM, with our son staying at a friends, we checked in while the whole hospital seemed asleep.

getting prepped

It took a couple of very causal hours up in the Pediatric Intensive Care Unit to prep her gently for surgery. She was just 5 months old, and we hadn’t been back to that hospital for 3 months. Living there for the first 2 months of her life was the most trying time in my life. To be back came with very mixed emotions. Life saving surgery. Baby on life support. Open-heart surgery. Huge risks. Huge rewards. I managed to hold it together that morning. Handing her over was very difficult, and the next 3 hours very long.

The ride over the next few days was very bumpy, last year’s anniversary post is here. Our stay was 10 days and I felt like I came home with a new baby! You cannot take away the very real risks involved with any surgery, for anyone. Especially not this type of surgery. We are extremely fortunate to live very close to a children’s hospital who had a very amazing heart surgeon. I feel extremely blessed every time I remember the experience. And every time I look at her chest scar I feel gratitude and joy. That scar is one of the best things that ever happened to her. I love her scars, every one of them.

All settled in after surgery 8/25/10

Being two years away from that day is also a blessing! We have a little heart-healthy girl, on no medications, and can be active and enjoy life to her fullest extent. We are also 2 years closer to the next time we must take her into open-heart surgery. Still a ways off, but in about 6-8 years it’ll be time to do it again. This time with more trepidation since the procedure to repair her coronary artery defect is controversial, comes with the same risks as all other open-heart surgeries, and she’ll remember. But we are granted with the luxury of time right now! So I get to tuck that away for another day.

Looking back and remembering, I think sometimes how impossible it nearly was for me to endure these events as a mother. As a family we went through some serious hell. River was so ill and fragile, and endured so many health complications and procedures, my heart stops when I think of it all.

Truly impossible: life without River.

Beginning to recover!
The Amazing River Belle

CHD Awareness Tree

A few weeks ago our local chapter of the Mended Little Hearts group put up a Christmas tree at the health center at Mary Bridge Children’s Hospital. I joined the group not too long ago.

Mended Little Hearts is a group thats main focus is the support of those affected by congenital heart disorders in children. There is monthly meetings and other activities. There are also kids and teen groups, but I would say mainly it’s members are the parents that all share this common experience.

I’ve already jumped right in and participated! This year they decided to decorate a tree to promote awareness of this very vast disorder. 1 in 100 babies are born with a heart defect, and it’s the #1 birth defect affecting children worldwide.

I made many photo ornaments of the children of the group. Almost no two defects the same! But each and every one of these kids has had to undergo one or more heart surgeries, many done by the same surgeon! The very same Dr. Woods! I’ve met a lot of fantastic people in this group, and it’s so nice to be able to have parents that we can talk “shop” with!

My mom, Diane, made a lovely stained glass heart that I put on top of a sparkly tree topper. I really wanted to grab attention! And it turned out very lovely! Thanks Mom!