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!

A Heart Surgery: Part 2

Nothing seemed to be out of the ordinary with Jaycee.

We took Jaycee in for her routine heart echo and waited for the results in a little room. When the cardiologist came in, shut the door, and sat down, we knew automatically that something was wrong. The cardiologist gave us the bad news and feared that another open heart surgery may be necessary. Only a small percentage of kids need a second heart surgery. We were hoping Jaycee wouldn't be in this group.

A diagnostic heart catherization was scheduled to determine precisely if another surgery was needed. We were scared of all of it. The heart cath had its own risks, and we were afraid to find out anything bad. Jaycee was 21 months old and had just started walking. Now, her health was priority number 1 again and developmental issues would have to take a back seat.

Jaycee made it through the actual catherization. Afterwards, she had to keep her legs completely still for six hours to prevent a hemorrhage. Jaycee was groggy but moved around often. My husband and I took turns holding down her legs for the next six long hours, which was something we had not anticipated. Near the end of the six hours, we were preparing to go home. However, Jaycee went into respiratory distress and a blood clot formed in her leg; both of these were potential risks of a catherization. It landed her in the intensive care unit for the night. But, she recovered quickly and responded to treatment.

The next day, she was "better" but the results were not good. Two leaks in her heart and pulmonary hypertension were confirmed. Another heart surgery would take place 6 months later. There was plenty of time to get more photographs of her and of us together and to make necessary preparations.

This time, before the surgery, we took a short family vacation to Branson, Missouri. The vacation helped me relax and I enjoyed getting away from our ordinary life of therapy, medicine, and work. My husband, on the other hand, said it was hard for him to enjoy the vacation and would have rather been home. It's mentally hard when your child is going to have major surgery. Still, we had some neat experiences with Jaycee during that trip. Even my husband would agree with that.

In May 2008, we once again took Jaycee into the hospital for pre-operation tests and meetings. The next day, we arrived early at the hospital. Jaycee was 2 years old. We knew her personality, what her cries meant, and had developed a strong bond. It wasn't that we weren't bonded when she had her first heart surgery, but as a newborn she just didn't do much. Now, we had 2 years into our relationship. It made it difficult to hand her off to the surgical team this time. I didn't want to let go, but I knew I had to.

Jaycee's surgery lasted 4 hours. The valves were repaired. The surgeon felt it went well despite there being some scar tissue. Jaycee spent the rest of the day being sedated in ICU. The next day, Jaycee was moved out of the ICU and was off of oxygen. Her voice was hoarse and she choked on liquids.

After surgery, Jaycee was in pain. She wasn't sleeping well. It was apparent that she was sore. It was hard to find words to comfort Jaycee in her pain, especially because I had consented to it. A couple of days after surgery, the chest tube was removed. We stayed and watched the removal. I was fine but my husband got completely white. The next thing I knew, he was in Jaycee's bathroom vomiting. The doctor told me to attend to him while they finished with Jaycee, but he didn't want my help. We have laughed about his weak stomach for years now.

On day 4, Jaycee was discharged from the hospital. This time, the recovery was quicker, and we didn't have to deal with home oxygen. Some of the after care was easier since we had been through it before. We knew how to clean her chest, to avoid swimming for a few weeks, to avoid large crowds for a few weeks, and to give sponge baths for a short period of time. Unlike the first surgery, Jaycee didn't develop a bump on her chest. Perhaps that only happens to babies? She was back to normal in a short amount of time. She never lost any skills while she recovered; she just picked back up where she left off.

It was a relief to have Jaycee home again with a more efficient heart. Today at age 8, her heart is still monitored yearly and often checked during admissions for illnesses. Currently, Jaycee has some "mild" leaks in her heart that should be fine. The cardiologist does not anticipate any more surgeries. She is not on any heart medications. But, when Jaycee gets sick, her oxygen saturation levels do tend to fall. We have oxygen on stand by at home and generally use it a few times a year. Also, Jaycee cannot take the heat at all. I'm not sure if the heat intolerance is from her heart history or her asthma. I just know it affects our plans all summer long.

So, that is the end of Jaycee's stories of how her heart was mended.