Our guest blogger today is heart mom Jennifer and she shares her sweet Olivia's story and the impacts of support through diagnosis. We love this family SO much!
I’ll never forget the day our OB told us Olivia would be born with a heart defect...It was the scariest day of our lives.
Everything was going great in our pregnancy until our twenty-week scan. We found out about Olivia’s Heart Defect at our first OB appointment. She also showed markers for trisomy 21; one of those markers was a spot on her heart. Our third doctor’s appointment confirmed that our baby girl had Down syndrome, and several heart defects; Tetralogy of Fallot, double outlet right ventricle, and complete AV canal defect. During my pregnancy, I received care packages from The Healing Hearts Project at different doctor’s appointments. We spent the rest of our pregnancy following the development of her heart and trying to plan for every possible scenario after her birth. There were so many unknowns. Was she going to be blue? Would she cry? Would we be able to hold her? Would she need surgery right away?
On the day of delivery, she came out screaming and crying. I have never felt so relieved to hear a baby cry! This moment was the first sign we had a little fighter.
After Olivia was born, a NICU nurse approached me after Olivia was born with a welcome basket from Healing Hearts. She told me her personal story with CHD and introduced me to the Facebook support group run by Healing Hearts. For me, as her mom, I needed to know that I could still wish and hope for her future; I wanted to see pictures and hear stories from people that had been through this. Thankfully, I received a few names and numbers of parents with children with CHD. I honestly wish I would have joined the group earlier. Hearing other family’s stories and seeing pictures of these sweet babies after surgery and throughout the whole process helped us feel prepared for what we might go through with Olivia’s surgery. Talking about Olivia’s journey and getting words of encouragement and advice helped us stay sane, positive, and grounded.
We spent the first 2 1/2 months living in the hospital with Olivia. Every day there was a different plan, a new approach, and when something didn’t work, it was back to the drawing board. We learned very early that having a child with CHD meant we needed to be flexible; even the best plans could fall apart quickly. We learned to stop telling our families what to expect because we knew that it could change in a moment. Olivia had three open-heart surgeries before her 1st birthday. She is conquering CHD one day at a time.
We are thankful to THHP for providing The Heart Cart in the cardiac ICU floor. It was sometimes our little break away from the room and all the beeping machines. I also didn’t realize the meal provided the day of her surgery would mean so much to us. It was the most excellent thing to know that strangers knew, “they will be overwhelmed, they will not have eaten, they will need strength, let’s send them dinner!”
It’s also important to know that Healing Hearts has provided us with more than just a break and a meal; they have given us lifelong friendships with people that understand what it means to have a child with CHD.
Here is Olivia today! She recently celebrated her second heartiversity (the anniversary of her first heart surgery)! We are so proud and blessed to be Olivia’s parents!
