Mother shares story of her hero

By Courtney Kile

When you think of a hero, chances are it's someone who has helped you or inspired you – your parents, a teacher or a religious figure. My hero is about 3 feet tall, likes cheesy pizza and is obsessed with the PAW Patrol. He's my son.

I married my husband, Robert, in 2009. Before the ink was dry on our marriage license, we were ready to make our duo a trio. Every month I'd take a pregnancy test, only to be let down. After nearly two years of infertility and loss, we were thrilled to find out I was pregnant! My dream was coming true.

At 20 weeks, we found out we were having a boy. His name would be Sullivan James, "Sully" for short. He was healthy, and everything looked great. Pregnancy was tough, and after being diagnosed with pre-ecclampsia at 37 weeks, doctors decided it was time for Sully to arrive.

I was prepped for surgery at our hospital in Duluth, Minn. On Nov. 14, 2011, Sullivan James Kile came screaming into the world at 6 pounds, 8 ounces; he was perfect.

When I finally got to see him, he was in the level-two nursery with an IV and oxygen cannula. Robert and I were told that because Sully was early, he just had to "turn the corner," and that's why he had low oxygen saturations.

Very early next morning, I surprised to see Sully receiving an echocardiogram. Once the test was finished, the nurse told me the doctor was on the phone. That's when my world came crashing down.

It was like being hit by a wrecking ball. All I remember was barely being able to dial my husband's number and screaming at him to get to the hospital.

I went back and held Sully. I was rocking him in a chair when Robert arrived, his eyes red-rimmed from crying. Everything was a blur. As the life flight team updated paperwork, the nurse at our local hospital turned to us and said, "Why don't we take a few pictures, ya know, just in case."

Just in case? Just in case of what? This was not how this was supposed to go. We were in shock. We took a picture together and then Sully was taken to another hospital a mile away to a neonatal intensive care unit (NICU). His umbilical cord chunk had been removed and replaced with a central line IV. He was given prostaglandins to help his heart function properly.

While I was signing releases for the transport, Robert looked at me and said, "I have only held him twice." The flight nurse from Children's overheard him and picked up Sully and gave him to Robert for a hug. It's overwhelming to be a new dad, and after being thrown into a situation like this, it was comforting for Robert to have a moment with his new baby boy. Sully was taken to the airport, and Robert and I set off for the excruciating two-hour drive to Minneapolis.

Shortly after we arrived at Children's, the cardiologists gave us our answer: Sully had pulmonary atresia with tetralogy of Fallot. When a baby is in utero, the ductus pumps the oxygenated blood to the lungs. Once a baby is born, the ductus closes and the pulmonary valve takes over. Sully's pulmonary valve was covered in tissue and couldn't open. When his ductus started to close, he wasn't getting enough oxygenated blood to his lungs. The prostaglandins they gave him in Duluth were to keep the ductus open. Sullivan was scheduled for surgery the next morning. He was too young for a valve, so they were going to put in a shunt to temporarily pump the blood properly until he was old enough for a valve placement.

As I cried to myself, his amazing nurse looked and me and said, "Do you want to give him a quick snuggle?" I nodded and she expertly picked him up ­– wires, tubes and all – and put him in my arms. It was important to us to have those special moments where we could be parents in the midst of all the chaos.

The next morning, Sully was sedated and prepped for surgery. To say we were scared would be an understatement. We gathered around him and said a prayer. Then they wheeled him away. Waiting for him to get out of surgery was hard, but a social worker repeatedly checked on us, making sure we were OK. Just as I was about to crack under pressure, Sully's surgeon, Dr. Frank Moga, came and told me that everything went perfectly. I calmly walked to the bathroom and lost it. Relief washed over me.

We were told that it takes most children 10 days to two weeks to leave the hospital after surgery because they have to learn to eat. Sully shocked doctors by learning to eat immediately. They were impressed by how quickly he was healing. Six days after open heart surgery at 3 days old, we got to take our boy home the day before Thanksgiving.

We planned how it was going to be when we brought Sully home, but nothing prepared us for our new reality of medicine, an oximeter and scale. I was a germaphobe, coating everyone in hand sanitizer. We were glad to be home, but there was a dark cloud looming knowing that Sully would need a total repair surgery for his valve in the next few months. Luckily, his team at Children's calmly handled my anxiety and answered all of my late-night phone calls and emails. Every follow-up appointment and conversation brought hope and confidence. The staff at Children's taught me how to advocate for my son and made me feel that I had a voice. Whenever I would second guess myself, I would remember the surgeon telling me, "We see children every day, but you see yours every day."

When he was 5 months old, Sully's cardiologist, Dr. Marko Vezmar, told us it was time for surgery No. 2, which would take place exactly 6 months after his first surgery. The anxiety returned. My saving grace was that I knew we were coming back to a safe place.

We pulled away from Children's, and I cried. Six months of living in uncertainty and limbo were over. No more oximeter, no more scales, no more meds; it was done. We could be a normal family– at least our own version of "normal."

Today, Sully is an active 2½-year-old with shining blue eyes and a heartbreaker smile. He spells his name, likes to sing Zac Brown Band songs and turns his nose up at broccoli. He seems like your average toddler, but Sully is a warrior.

Sully was destined to be ours and show everyone what a fighter looks like. He's the definition of miracle and hero. He's my best friend, and he's here because of Children's. I'm thankful to everyone at Children's, from the nurses and surgeons who were by his side, to the cafeteria worker who remembered me every morning – they all made those tough days a little brighter.

Sully's strength has inspired us and others. Because of the support we received from Children's, Robert and I knew we had to help our fellow heart families and heart warriors. We started a nonprofit for cardiac families in Minnesota called Project Heart to Heart. We've been able to help other families and made lifelong friends.

It's not the norm for most, I guess, but this is our world. I wouldn't change a thing. I'm the mom of a miracle.