Updated: Jul 31, 2021
This is Grace! She is our 4 month old little heart warrior! Grace has Congenital Complete Heart Block. Complete Heart Block is when the electrical signal doesn’t pass from the heart's upper chambers to the lower chambers resulting in a dangerously low heartbeat. Her heartbeat was about 60 bpm throughout pregnancy. Her heart defect was found at my 20 week ultrasound.
The goal for pregnancy was to keep her heart beating, prevent the rest of her heart from getting damaged and for her heart to continue functioning. I had weekly ultrasounds and echos at Jim Pattison Children's Hospital - I can’t say enough about the amazing care we received!
At 36 weeks pregnant we relocated to Edmonton where Grace was born. She was immediately transferred to Stollery NICU and my husband followed the ambulance and stayed by her side. I was at the other hospital and had to stay there until discharged from my C-section. I got a pass the day after she was born and got to hold her for the first time. Monitors, cords and constant beeping was so overwhelming. I felt like I knew nothing about my baby and it felt so wrong to leave her. I was discharged two days after my c-section and the next few weeks were spent at the Stollery NICU.
Thankfully we were staying at the Ronald McDonald House and my mom came with us so we could bring our older daughter, Ava. My mom watched Ava for us while we were at the hospital and we usually came back to the house to have supper (supper was provided by amazing donors) and a quick play with Ava. Staying at the house made the transition from hospital to be with Ava much easier. We are forever thankful for the Ronald McDonald House and all they do!
At 17 days old Grace had heart surgery and got her pacemaker. Handing her over to the surgical team was one of the most difficult things we’ve had to do, but we are so grateful for them and everything they did for Grace.
Grace needs a pacemaker her entire life. The first one should last a few years and then she will have surgery to get a new one - it’ll be bigger, more sophisticated and should last longer. CHD will be a lifelong journey for Grace and we will be with her every step of the way.