December 11, 2023
Our one-year Heartiversary Celebration!
The club I never wanted to be apart of.
Lessons I learned caring for a child with congenital heart failure
I never in my life thought I would be part of this club. I didn’t want to believe the baby I was carrying would one day need open heart surgery. However, I still have lessons I learned caring for a child with congenital heart failure.
Towards the end of my pregnancy, I was so scared because I knew when he was in my stomach, he was safe. I did not want to see the future unknown. We found out when I was 12 weeks pregnant there was a problem with Noah’s Heart. It was not a small problem either, and it was a scary large hole called a large VSD. Our cardiologist made it very clear that it would probably not heal in utero, and he would need surgery before he was one. My husband and I spent so much time mourning. Hurt, feeling our son’s life would not be what we wanted. But there has been so much light we could not see past our pain. Looking back, I will say these feelings were valid. It was a hard moment to navigate, but I wanted to share some lessons and things I have learned from our experience.
We spent many days and nights with nurses, doctors, therapist and staff. Learning not only about Noah but important medical terms and things we will need to know when he came home. I am not a nurse but they taught me to be brave and that some things seems scary but once you learn them, it’s part of life. Noah had tubes and cords hooked to him that made me scared to hold him when he was born. But nurses came in and explained what they were and helped us not be as intimidated. This is never a state you want to see your child in but I knew I needed to be brave to help myself push past my fear.
We had planned for a 7-10 stay at the hospital for Noah after his heart surgery and it turned into around 28 days. We had planned for one open heart surgery and ended up having two within a 6 day span. We had planned for our baby to be home for Christmas and we didn’t get home until New Years day. As much as I wanted to plan every moment and have all the expectations, I learned that I need to always be prepared for change so that I didn’t live in a constant state of disappoinment. Be ok with change and focus on self care to help your mindset. It can be a lot for a parent to not know what’s next, but take this time to find things to help bring clarity and peace in the unknown.
With our stay I was alone in our hosptial room often with Noah. Many times he was sedated so I just had myself and my thoughts. Our nurses and staff became friends and helped ease the anxiety I had watching monitors and sitting and waiting. I felt like we had a partnership in Noah’s health. I feel it is so important to get to know the staff but also remember they are people as well.
After a long NICU stay, two Open Heart Surgeries and missing our first Christmas home we have been trying to create magic everywhere possible. Moments I feel I have taken for granted in the past with our kids I make sure we celebrate with Noah. Not only him but really making a concious effort to spend more time with our other children. Make family time a priority and let them know how much we love them.
You may not have an open heart surgery in front of you with your family but we all have a story and sometimes we need some reminders of how important the little things are.