Coming Home: Rylan’s Story

By Isabelle E., Rylan’s mom

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My second pregnancy was a smooth, healthy one with no red on any of my routine ultrasounds. Rylan was born Monday, October 6th weighing 9lbs 1oz. There were no red flags at the time of Rylan’s birth. He was a crying, pink baby with a 9.9 APGAR score. It was not until 24 hours later, when we were ready to be discharged, that everything changed. Rylan went for two routine tests. A hearing test and a fairly new test for newborns- the pulse ox test (non invasive test measures blood oxygen in the body).

This is the test he failed.

Immediately he was brought to the NICU and hooked up to O2 and many other machines to determine what was going on. It was decided that Rylan would need an echocardiogram from a pediatric cardiologist and we would need to be transferred from Waterbury hospital to Connecticut Children’s Medical Center. Connecticut Children’s Medical Center’s pediatric transport team was called which included a critical care nurse, respiratory therapist, and EMTs, all needed to ensure he would make it to Connecticut Children’s safely.

At the time I believed my baby was healthy and I could not take in what was going on. How could anything possible be wrong? He still looked like such a healthy newborn.

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Upon arriving at Connecticut Children’s we were directed to the Pediatric Intensive Care Unit and Rylan was immediately evaluated. I have to say that even in our darkest moment the faces of the doctors and nurses that greeted us as we walked into the PICU were so kind and reassuring, telling us they were going to do whatever was needed. Two of the first faces I remember were our wonderful pediatric cardiologist Dr. Harris Leopold and Rose the medical student who would be following our case.

It was about 7:00pm at this point and Dr. Leopold had just finished doing the EKG and the echocardiogram. He said, “This is a drawing of a normal heart and this is a drawing of Rylan’s heart.” As he speaks, I am in a daze, until one phrase brings me back…

“He has a large hole in his heart.”

I lost it. I stopped Dr. Leopold and said, “Do you mean open heart surgery!?” It turned out that not only was there a hole (ventricular septal defect) but also 3 other major heart defects. Rylan had a Double outlet right ventricle (means both major arteries are coming off of the right ventricle), Transposition of the great arteries (means the aorta and the pulmonary artery are in switched positions) and Pulmonary artery stenosis. This was the night our lives changed forever.

The following morning we met our amazing Cardiac team. Dr. Wu blew me away from the moment we met her. She came into Rylan’s room and immediately put me and my husband Ray at ease. Dr. Wu began to explain more about Rylan’s diagnosis and what the plan was to correct it. As she explained the hurdles we would go through she spoke with such confidence and calmness, I knew we were in the right place for Rylan’s care and that he was going to get the best of the best. There would be some very tough moments in the days to come and somehow she was always there and always able to reassure me things would be okay.

The next 6 days consisted of monitoring Rylan and making sure he would hold up until surgery, which was scheduled for Tuesday, October 14th. Each day seemed like a week and with so much going on it seemed endless. We would wait every morning for rounds, which consisted of our cardiac team, all the doctors on the critical care floor, medical students following his case, his nurse, respiratory and many others that would fill the hallway around his room, discussing his constantly changing needs and the game plan for the day. It was reassuring to see so many people coming together to figure out how to give Rylan the very best care.

On Tuesday, October 14th at 7:30am, they came and wheeled my baby to surgery for a full repair of his heart defects. Those were the longest 8 hours of my life. Ray and I tried to keep ourselves distracted. Through those long hours it was very reassuring to have so many people come in and give us constant updates. We saw many members of the cardiac team, nurses and the critical care doctors come in and update us. Dr. Leopold came in our room and sat with us for awhile talking about what was going on and what we would expect when Rylan came out of surgery. We never felt alone.

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Everything went beautifully! Dr. Kirshbom and Dr. Karimi were able to do a full repair. Dr. Kirshbom came out to tell us how well Rylan did and all I wanted was to give him the biggest hug and say thank you again and again for mending Rylan’s broken heart. How thankful we are to the surgeons who took such great care of our son and who were able to work on his little heart, no larger than the size of a walnut.

Once surgery was over our awesome nurse Ashley came to get us and brought us in to Rylan’s ICU room. She went over all the tubes, wires, machines, IVs and answered all of our questions, making sure we were comfortable. It amazed me that even after surgery and being hooked up to all sorts of machines and IVs he still looked like such a perfect newborn. The next several days were very difficult while Ray and I stayed by his side sleeping in the PICU family rooms, taking turns watching over him. Every day had a new goal. One day breathing tube out, next drainage tubes and pace wires out, arterial and central lines out and then the moment Ray and I had waited so long for… the chance to hold Rylan. I can remember him looking up at us and smiling….one of those moments that will forever be with me.

After 12 days in the PICU we were moved to the next step floor to make sure he was gaining weight and to get him ready to go home. Wednesday, October 22nd was a day that we will never forget. I arrived at the hospital very early that day. I had in my car his baby car seat, hopeful today might be the day. Dr. Wu and Jill came into our room and told me Rylan was going to be able to go home. I needed them to repeat it several times before the reality of what they were saying really sunk in. Here was my beautiful baby in my arms and I knew in just a couple of hours he would still be in my arms but in our home surrounded by family. Many of those that had been there for his journey stopped by his room to say goodbye and wish us luck. I had everyone sign a Dr. Seuss book for Rylan because I wanted everyone involved in his care to be remembered.

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Finally, the big moment we had been waiting for was about to happen. I began packing up his room still in disbelief we were actually going home. It was just after 5pm and our nurse came in to inform us that all the papers were in and we were finally being discharged! I couldn’t stop smiling and laughing, I was so full of happiness. It was such a beautiful moment putting Rylan in his baby car seat and heading out the door, getting hugs and well wishes as we walked out. I began crying, thinking about what we had all been through to get to this moment and all the people at Connecticut Children’s who had helped us and most importantly, Rylan.

We are so thankful, lucky and blessed to have this little guy in our lives. Thank you just isn’t enough for saving our son and mending his broken heart. Today Rylan is a happy, growing boy who is doing well. He sees Dr. Leopold every 3 months for an EKG and Echocardiogram to continue to monitor that everything is working as it should.