Read the journey of hope and celebration about Rowan Taylor and his parents, Emily and Reggie below…
“The reason we were referred to a high risk doctor was because at our regular anatomy ultrasound, Rowan’s heart seemed to be in the middle of his chest instead of on the left. Our obstetrician told us not to worry as we made the appointment.
At the high risk ultrasound, they not only discovered Rowan’s heart towards the middle of his chest, they also found multiple anomalies that would require surgery to fix. Once Rowan was born, they repaired his congenital diaphragmatic hernia and all seemed like it would be fine. Except it wasn’t.
Babies need to eat a certain amount of breast milk or formula in a certain amount of time before they are considered to be exerting more energy than is required aka burning more calories than taking in. In the NICU, it almost becomes an obsessive ordeal to track how much a baby eats within a time frame. Rowan would never eat enough in the set time. Ever. We tried different nipples and bottles, but we always ended up tubing his feed. It got to a point where he was retracting and working harder to eat and breathe, so the team placed him on low flow oxygen to help ease some of his breathing.
The cardiologists came by to assess him since he was laboring so hard to breathe, even when he wasn't eating. They determined that he more than likely needed his ventricular septal defect (VSD) repair surgery, but they would present his case to the cardiology team on Wednesday, May 4, 2016 to decide on his candidacy for the surgery or see if there were other options. When I walked into his room on Tuesday, May 3, 2016, our nurse Candice told me that the cardiac surgeon had come by and wanted to perform the surgery the next morning! She said the surgeon felt confident that he needed this surgery and the benefits outweighed any risks. Reggie and I met with Dr. Kumar, the cardiac surgeon, that Tuesday afternoon, and scheduled Rowan to have the open heart surgery the morning of Wednesday, May 4, 2016.
No one and nothing prepares you to see your young baby hooked up to cords and tubes with a huge band aid down their chest. The monitors and numbers and beeping become overwhelming. Every day, we would watch the numbers to see how he was doing. Eventually, Rowan healed and was able to move back to the NICU. A month later, he was discharged from the hospital to go home after 93 days.
Six days after our discharge, Rowan has a follow-up cardiology appointment. When we took him in, the pressures in his heart were high, so the cardiologists admitted him for a heart catheter procedure and to try medicine for the pressures. Luckily, the pressures were not super high and could be controlled with medicine. We only stayed a few days at LeBonheur before we went home once again.
On July 10, 2016, Rowan was rushed to the ER for respiratory distress stemming from his pulmonary hypterention. He bounced from the CVICU to the heart floor to the PICU in the hospital before landing in the IMCU. The doctors couldn’t figure out what to do with Rowan. Our last option was a small heart procedure to place a band around an artery in his heart. Before they did this, one of the cardiologists suggested we try a medicine called Enalapril to help balance the pressures. He warned us that it only had a 25% chance of working and surgery would be the next option. The Enalapril worked and we ended up discharging about a week later (without any oxygen!).
We never thought much about the future during Rowan’s first year. It was always “take one day at a time” mentality. So, when it was time for Rowan’s first birthday, we were ecstatic. Here was a kid who, at birth, had a 50% chance of survival on top of having open heart surgery on top of plummeting into respiratory failure - we wanted his first birthday to represent where he had been and where he was going. Our theme was “Oh the Places You’ll Go!” And it has been a fitting theme ever since.”
Support the Big Heart Fund and kids just like Rowan with a gift today as we walk with them along their journey to help them reach all the places they’ll go!