Kilyn's Krusaders: Why We Stand Behind Riley
Our Riley journey started when I was five months pregnant with our daughter. I came in for a routine doctor’s appointment, my doctor pulled me in her office and told me they had found a mass on our daughter’s face, and there were some elevated levels in her heart.
We were soon referred to Riley cardiology, where we met with pediatric cardiologist Tim Cordes, M.D. They did an ultrasound and Dr. Cordes told us she had an interrupted aortic arch (IAA) and a very large ventricular septal defect (VSD).
It is a shock for parents to hear news like that.
Dr. Cordes took the time to help us understand everything. He sat down, drew a heart and explained exactly what was wrong with her heart. We still have the piece of paper. It didn’t matter how many questions we had or how long it took. He was very comforting.
Because of her heart conditions, we knew our daughter would need immediate care from Riley cardiology specialists when she was born. Our medical team helped us plan her birth at University Hospital, which is connected to Riley.
Kilyn was born on June 30, 2009. I didn’t get to hold her. They held her up, showed her to me, and then took her off and started hooking her up to lines to keep her blood flowing. Without those lines, she could have died. They brought her back to me in an incubator. I got to touch her for just a second, and they took her to Riley. My husband went with her, and I just sat there. I had to wait for the epidural to wear off. The time just couldn’t go fast enough.
Late that night, my husband pushed me in a wheelchair one mile from University Hospital to the Riley NICU so I could see Kilyn. When they were transporting Kilyn, she quit breathing, so when I was able to see her again she was hooked up to a ventilator. I stayed next to her incubator for several hours that night, and all day the next day. Even though I was still recovering from childbirth and was far away from my own hospital room, I just couldn’t stand to leave her.
I think it’s amazing that Riley is in the process of creating a Riley Maternity and Newborn Health program, which will include maternity services right inside Riley Hospital. Knowing you’re in the same building as your child would be so much more comforting. I was not able to relax, receive any pain medication or really recover after giving birth because the distance from my room to the NICU was too far, and going back and forth just wasn’t worth it to me. I think it’s so awesome for all the moms who are going to be able to use the new facility not have to leave their kids. I hope it can give them more comfort and peace of mind knowing that they’re right there. It’s a much-needed change that I hope the whole community will get behind.
During Kilyn’s one-month stay in the Riley NICU, she underwent her first open heart surgery at one week old to repair her aortic arch. She also had her first eye surgery to remove tumors behind and beneath her left eye when she was 3 weeks old. At the age of 2, Kilyn underwent open heart surgery to repair her VSD and place a pacemaker. Her heart surgeon, Dr. Mark Turrentine, is absolutely amazing. He is very quiet, but as soon as Kilyn walks into the room, he’s smiling and his entire focus is on her. As a parent, that’s what you want: someone to pay attention to your child and know that they’re going to do everything for them. We also love and appreciate Dr. Marcus Schamberger, her pediatric cardiologist, and all the amazing NICU nurses who took care of us.
Today, Kilyn is getting ready to turn seven. She has had 15 surgeries so far and is doing fabulous! She is very outgoing, full of energy all the time, and loves to help others in need. Our family throws an annual “Kilyn’s Krusaders” lemonade stand fundraiser, and this year Kilyn wants to give all the proceeds to Riley Children’s Foundation. We are hoping to raise enough funds to dedicate a Riley wagon, or maybe even two, in Kilyn’s name.
I wish people in the community knew that there are so many ways to get involved and give back to Riley. We are thankful every day for the doctors, nurses and staff at Riley Hospital! Kilyn is here and doing well because of the care that she received. It means a lot to Kilyn and our entire family to support Riley Hospital in any way we can.
One the fundraising priorities of Riley Children’s Foundation is funding the recruitment of maternal-fetal specialists for the new Riley Maternity and Newborn Health program. This historic change will make Riley one of the few hospitals in the nation to offer comprehensive maternity and pediatric specialty care in one location. The program will also create a statewide maternal-fetal medicine network to enhance care in hospitals across Indiana, with a goal of improving Indiana’s infant mortality rate, which is one of the worst in the nation.
To make a gift in support of this program, click here.
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