Rylan’s Story

My husband, Ray and I were expecting our second child. We were full of excitement and couldn’t wait to introduce our little one to his big brother, Hayden. Hayden was three at the time.

Rylan was born on Monday, October 6th weighing 9lbs – 1 ounce at Waterbury Hospital. He had a 9.9 APGAR (which measures a newborn’s health from 1 – 10, 10 being the best), was pink and crying. He looked like a healthy baby.

I remember wanting to get home as soon as possible so we could be together as a family. We pushed to be released exactly 24 hours after his birth.

Rylan was sent to the nursery for the newborn screening tests and my husband and I packed up our things and were preparing to take him home. We suddenly realized he had been gone for quite a while, so we called the nurse. The pediatrician came into our room and said she could not be sure, but it appeared something could be wrong with Rylan’s heart. He had failed his pulse ox test which looks at the amount of oxygen in his blood. She told us he needed to be rushed to a much bigger hospital for further evaluated.

I was in complete disbelief because he appeared to be so healthy.

Connecticut Children’s Medical Center (CCMC) critical care transport team arrived and took Rylan as we followed behind.

My husband and I arrived at CCMC and we were directed to the 3rd floor to the Pediatric Intensive Care unit.

As we walked to Rylan’s room we meet his cardiologist who was preparing him for his first echocardiogram. Ray and I stood waiting and praying that the exam would show nothing. Instead, the doctor told us the news. Rylan would require open heart surgery within the week to correct his many heart defects. On Tuesday, October 7th around 7pm, our lives changed forever. Rylan was born with Ventricular Septal Defect or VSD (a hold in his heart), Transposition of the Great Arteries (his major arteries, the Aorta and Pulmonary arteries, were in switched positions) and double outlet right ventricle, (both major arteries were coming off the same spot of the heart).

We spent the next week preparing for surgery, living in and out of the Pediatric Intensive Care Unit (PICU) and parenting our three-year-old son. It was the most difficult, eye opening time for our family.

On Tuesday October 14th at 7:30am the doctors, nurses and anesthesiologists wheeled our one-week old baby into open heart surgery to mend his heart. He came out of surgery around 2pm and we finally saw him around 3pm. He was asleep and peaceful looking despite the many tubes, wires, IVs and monitors attached to his small body.

Over the next week, Ray and I stayed by Rylan’s side sleeping in the family suites attached to the PICU. Once he was weaned off the ventilator, his pace wires were removed along with his central line and he was transferred to the stepdown floor. He quickly regained his strength and began feeding.

Overall, we were in the hospital for three long weeks, until he was discharged. When the time came, it was such an amazing feeling!

The following weeks were filled with doctor’s visits, tests and even at home nurse care. But we were so blessed to have Rylan home and healthy.

Rylan continues to see his cardiologists every six months to monitor his heart and leaky valves. Because his heart was mended and not cured, he will need to continue to have his heart monitored. We don’t know what the future will hold for him, but we are very thankful for everyone who has been involved in his care, who held our hands and wiped away our tears during those very difficult weeks. We are especially thankful for the work and science of the American Heart Association. Without it, many of the procedures and protocols used, might not have been in place to help Rylan.

Rylan is now a very busy, active, mischievous two-and-a-half-year-old. He loves being outside playing with his big brother or his cat, Wing or dog, Kylo.


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