It’s amazing to think that one moment can change your life. That one moment can guide you down so many pathways; sometimes losing you and sometimes finding yourself. For me, this moment was back in 2011. Our doctor told us our son’s heart was abnormally shaped. I remember her using words that I couldn’t pronounce and feeling so overwhelmed by a diagnosis that looked so grim. I remember being confused, scared and so very alone. I felt like this new path we were about to go on was going to be long, hard and emotional.
Our son, Stockton, was born with hypoplastic left heart syndrome (HLHS). This happens when the heart does not fully develop in utero, leaving the baby with an underdeveloped left ventricle. This diagnosis is not compatible with life. We faced an important decision: where to go to find the best hope for our son. We were lucky to find Texas Children’s Hospital to help us on this new journey.
Our son was born and just four days later he had his first open heart surgery. This was followed by many heart-breaking moments and even greater amounts of joy. As we spent those first few months in the hospital teaching him how to eat, watching him gain weight and balancing heart medications, we saw glimmers of hope filled with joy as our son slowly started to heal.
Once discharged, we spent a few months at home trying to find our new routine. We enjoyed finding our little guys personality, as well as watching him grow. We had to pay close attention to oxygen levels, his weight gain and his feedings. We loved how our son made us slow down and not take one moment for granted. After those few months at home he needed his second open-heart surgery.
We rang in the New Year sitting in the CVICU (cardiovascular intensive care unit) holding our son’s hand. We were scared what this new surgery would bring, but with the care we received from Texas Children’s, our son was discharged after just six days. This surgery gave him a whole new circulation and his personality really shined through.
For the next few years we had many doctors’ appointments, diagnostic tests, home monitoring and new medication schedules. We slowly watched our son hit his milestones with his first words, his first hugs, his first crawl and then finally, his first steps. Our son never slowed down. As soon as he walked, he started to run. He wanted to explore this new world and get into as much mischief as he possibly could. We loved watching him grow. We soaked up each one of these new adventures as we created fun memories.
When Stockton turned 3, his heart told us it was time for his next surgery. With Texas Children’s we had a plan and just after his fourth birthday, Stockton had his third open-heart surgery. This brought back a lot of pain and emotion for our family. This surgery was different for us because Stockton was older. Our son was able to communicate, ask questions and tell us where he was hurting. We had many nurses, cardiologists, nutritionists, child life specialists and our surgeon guiding us through this new phase all over again. With their help and one strong boy, we left the hospital after just a week.
This new path that was meant for us is not easy. What we didn’t realize about this new journey was how much joy it would bring us. Our son brightens a room with his smile, feels your soul with joy and just glimmers of hope. He loves preschool, his siblings, playing games, driving his Power Wheels, playing outside and telling jokes. With the help of Texas Children’s, our new path has been nothing short of amazing. This has created a whole new world for us where we have met some amazing heart families and beautiful children. Our son is a blessing and he creates so much happiness in our lives. We are grateful to those we have met on this new path and we know our son has a bright future.