Our Featured Heart Warrior…Theo

On February 8, 2017, our lives changed forever. We had been trying for a long time to have a child of our own. We were on the verge of giving up. And in November of 2016, we received the best news. Schlrae was pregnant! We could barely contain our excitement, and we wanted so badly to tell our friends and family. But we knew we had to wait. We didn’t want to spoil it. Finally, around New Years, we let the cat out of the bag. It was the greatest feeling, getting to watch Schlrae’s belly grow and see her light up with excitement when she talked about our little one. We scheduled an anatomy scan for February 8,to find out the gender, and we invited our moms to join us because they could barely wait to find out. It was then that our lives were changed forever. Our sonographer told us that she needed the doctor to look at the baby’s heart (oh and by the way, it’s a boy). She left the room and we were left with so many questions. Is everything ok? Is something wrong with his heart? We waited for 30 agonizing minutes in a cold, dark room until finally the doctor joined us to confirm our fears. Our baby has a major heart defect. He may not survive the pregnancy. He’s likely going to need multiple surgeries, if we even make it to that point.  This was devastating news. This was not how it was supposed to be. This had been such a roller coaster for us. The disappointment of not being able to get pregnant. The elation of getting pregnant. And now the fear for our child’s life. So many things were running through my head. Concern for Schlrae. Concern for the baby. Financial concerns. Worries about the babies future, if we even got that far.

It took us a few days to gather ourselves, but we knew one thing for sure. We were going to fight as hard as we could for Theo. At first, we didn’t want to reveal Theo’s name. But after his diagnosis, we knew we had to. We knew we had to give our friends and family a name to pray for. We needed a name to fight for. And thus, The Legend of Theo: Heart Warrior was created. We made t-shirts and a Facebook page, and suddenly, we had 500 people wearing his t-shirt and visiting his page for updates.

A few days after our anatomy scan, we met with a cardiologist who confirmed my suspicions based on research I had done. Theo was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). A very rare and complex heart defect. So rare, and so complex, that very few surgeons can perform the necessary procedures. We then found out that Theo would have to be delivered at the Children’s Hospital in Aurora, Colorado, and his surgeries would be done shortly after his birth. We began making plans and the necessary arrangements, and Theo was born on July 7, 2017 (7/7/17, lucky 7s!) in Aurora. We were so fortunate to be able to spend four days with Theo before his first surgery, a luxury that many heart parents aren’t afforded. Many times, the little heart babies have to undergo immediate intervention. Theo’s Norwood procedure was performed on July 11, by the incredible Dr. Jaggers, and it was complication free. We were on the road to recovery so we could go home and enjoy our little guy outside of a hospital room. That was the beginning of a very long, bumpy, stressful, and frustrating road. Theo would spend the next nine weeks in the hospital and undergo a total of two open heart surgeries and 1 heart cath, each carrying the same risks and concerns. We were discharged in early September and able to go home shortly thereafter. We enjoyed a relatively quiet 2 months at home before Theo’s heart told us he was ready for his next surgery. After a little scare on a Saturday morning in November, Theo was life flighted to Children’s Hospital Colorado, and he had his Glenn procedure, his third open heart surgery in four months, on the Monday before Thanksgiving, 2017. We ate Thanksgiving dinner in the hospital with Theo’s grandparents, and were discharged from the hospital three days later.

We’ve been home since then with no scares, and enjoying every minute of it. Theo is doing amazing. His cardiologist could not be more pleased. Theo has fought so hard, and we are so proud of him. However, I don’t want that to imply that Theo fought harder than other heart warriors. Some fought just as hard as Theo. maybe harder, and gained their angel wings. That’s the thing about CHD. Its unpredictable. Its scary. Its stressful. There are so many unknowns and surprises. We always have to be on our toes. Every heart parent knows what I am talking about, and if you are reading this because you just received a diagnosis, you’ll know too. That’s why Lexiam exists, and that’s why I am so proud and excited to be involved with Lexiam! We are here to help you navigate this confusing, stressful, and scary road.

As I write this, Theo is starting to crawl, and running around the house in his walker. He just discovered that he can scream really loud, so he does that a lot just for fun. He’s starting to eat solid foods and getting really good at eating from his bottle (one of the many complications that can stem from surgery).  He really loves his mom and dad, and we love him too. And we are so excited for Theo’s future and so thankful that he is on the road towards actually have having one.