Tuesday, February 13, 2018

When a Mended Heart Grows Up

I marveled at my daughter's 10 tiny toes and fingers. I touched her soft skin and chubby cheeks. My heart was racing with love for her with that first glimpse after her birth. Little did I know that her heart was beating differently as well. 

During the pregnancy, I
had no worries about my daughter's heart, but that was back when black and white grainy fetal ultrasounds were all we had. Nothing was caught before Jaycee was born. After birth, her problems were noticed almost immediately by hospital staff. It was a cold day in February nearly 12 years ago when I found out what an AV canal heart defect was and watched my daughter have her first heart echo. 

I look back on those early years with a mixture of feelings. I was ecstatic to be a new parent of a beautiful little girl, but I was very concerned about her health. I had so many fears and worries at that time of Jaycee's life. Before Jaycee, I never really had experiences with the health care system or life-threatening health problems. It's a world of its own that can be overwhelming for anyone entering it for the first time, especially when it's meet under the circumstances of your first child. 

I was learning how to use a breast pump one minute and learning about my daughter's heart condition the next.
I was washing cute tiny outfits in the laundry and cleaning out medicine syringes in the sink.
I was taking Jaycee to the doctor for her normal shots, and I was making plans for her open heart surgery.
After surgery, I was rubbing baby lotion on her arms and legs and securing her nasal cannula to her face with tape.
I was turning on sweet soothing music for Jaycee while silencing alarms on her pulse ox monitor.

The first two years of Jaycee's life was a learning experience. In those two years, Jaycee had two open heart surgeries, a diagnostic heart cath, and spent three months on oxygen at home. I hoped the worst was behind us.

As a mom who loved her child, I wanted to know back then what the future would hold for Jaycee. After seeing my child's chest scarred twice, handing her off for surgeries, and going through all the emotions these situations brought, I wanted assurances for Jaycee's future.

All these years later, I can tell you what 12 years have been like with my child with a congenital heart defect. Since she was 2, Jaycee hasn't needed any more heart surgeries. She did need two heart ablations for a different heart problem, Wolff-Parkinson White syndrome, that triggered when she was 5 years old. For some time now, she has only needed yearly heart echos and cardiology appointments. Her only restriction in life is that she can't ride intense roller coasters. She's certainly done every other ride at amusement parks without a problem.

Jaycee's health has not been perfect, but she has Down syndrome and several lung issues. It's often hard to determine what diagnosis is responsible for what, but for the most part, her heart has not been the issue that I feared it would be so many years ago.

Since February 14th is Congenital Heart Defect awareness day, I wanted to take a moment to reflect on my daughter's journey with CHD. Hearing your child has a heart defect is a serious and scary thing. I am sure there are many parents out there getting a diagnosis and wondering what life will be like. I was once you. Here we are though, 12 years later. My daughter has a good and full life, and I pray that your little one will too!

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