SPIRIT INNERVENTION R

Heart Hero

WRITER: MORGAN ELLIS // PHOTOGRAPHER: FRED LOPEZ

There is no such thing as “perfect timing” after you become a parent. We are always faced with life’s unexpected events. Being a mother has helped me appreciate those unexpected things that turn my world upside down — the Kool-Aid on the carpet, the melted crayons in the dryer, the strawberry stain on a brand new shirt. These things become so trivial when you experience something you never thought was possible. Suddenly, you are given a new perspective on what is truly important.

I knew when my oldest daughter Madison was a toddler that I loved being a mother and wanted a bigger family. My husband and I tried for almost eight months before I became pregnant. At my first appointment, we discovered we were not just adding one additional member to our family but two. Yes, twins!

My pregnancy with the twins was mostly uneventful except for the first trimester morning sickness. My prenatal care was excellent, my doctors were amazing, and all of my sonograms showed the twins growing on track with perfect weights and strong fetal heartbeats. I made it to 35 weeks before going into labor on Christmas Day. The next day, Gracie and Gavin entered the world happy and healthy, weighing in at 4 pounds 10 ounces and 5 pounds 1 ounce. All three of us were released with a clean bill of health after only 48 hours in the hospital, and we made our first adventure home as a family of five.

The twins appeared very healthy their first month, but during their first pediatric checkup, the doctor noticed Gavin had a slight heart murmur and suggested we see a pediatric cardiologist to make sure it wasn’t serious. I scheduled an appointment immediately only to be faced with what felt like my world shattering into pieces. An echocardiogram revealed my six-week-old son had a congenital heart defect, a bicuspid aortic valve with stenosis. In other words, his aortic valve did not form right during gestation. Instead of having three openings for oxygenated blood to pump to the rest of his body and prevent blood from flowing backwards into the heart, his valve has only two. This condition affects less than two percent of the population. The aortic valve stenosis, which is the narrowing of the valve, creates pressure when the blood is pumped through to the aorta and can cause thickening of the ventricle due to the extra pumping required to force the blood through the faulty valve. The treatment for this condition involves multiple valve replacements.

A part of me died that day in the doctor’s office as the next few weeks became a frustrating cycle of researching the procedures, and calling doctors around the country to find the best place for the surgery. I began to panic.

Questions began rushing through my head: “How much pain would he feel?” “What if he didn’t survive the surgery?” “How would I explain his scars?” “Would he remember?” However, the most terrifying question was, “When?” I felt like Gavin was a ticking time bomb because no one could tell us when he would need surgery.

His doctors explained that having routine echocardiograms until the pressure inside his valve became severe enough for surgery was the only answer. In the meantime, I didn’t sleep and I worried all the time that something was going to happen. Plus, I was caring for my two other children.

Every doctor appointment, I thought, “Today is going to be the day they tell me it’s time.” There is no way of knowing what could cause his condition to worsen or how fast it could happen. I spent so much of my time being overprotective and trying to control the inevitable. At this point in my life, I grew in my faith and had to give it all to God. It wasn’t in my control and accepting that was painstakingly hard.

Then at age 3, Gavin developed severe asthma in addition to the heart condition, which created a new set of issues. After almost two years of constant doctor and hospital visits, we eventually found a medicine that helped his asthma without affecting his heart.

It’s been almost fi and the pressure inside his valve continues to remain stable with only very slight increases. The doctors hope he can make it to adolescence when the heart is fully-grown. Then he will only need one valve replacement. Therefore, we just hope for time. I am not really sure how to prepare for that time when it comes. I am not sure how to explain to Gavin his condition nor do I want him to feel any less capable than his sisters. We have tried to let him do as much as possible without hindering his ability to be a normal and active little boy. He has a few restrictions that I hope he will learn to accept once he is older and can understand.

If you looked at Gavin with his friends on the playground, you would never guess he was a child with a congenital heart defect and severe asthma. He is just amazing. He has the biggest heart of any kid I know, and he always wants to help others. He is my super hero.

As parents, my husband and I consider every day a blessing. This experience with Gavin has given our whole family a new perspective on how precious every moment is. My husband’s favorite saying is “Don’t cry over spilled milk.” I think as a family that saying has really made us appreciate the small annoyances in life because we have overcome something so much bigger. For us, enjoying the time we have together, no matter how small, is what helps us live life to the fullest.