Lily Grace Simons

Hello! My name is Kevin Simons. I am starting this fundraiser on behalf of my brother Jeff and his wife Katlyn. On September 18th at 8:30am they gave birth to their beautiful daughter, Lillian Grace. She defied many odds already by making it to that date, however her story had just begun. She was diagnosed with a heart defect when Katlyn was 23 weeks pregnant. Lily has a huge hole in heart which will require surgery in about 4-6 months. We were all with them in Greenville, SC getting ready to take Lily home for the first time and the doctors decided to do one last echocardiogram on her before they discharged her. They discovered that her aorta was narrowing and so they ended up transporting her to the Children's Hospital in Charleston, SC.

Once in Charleston we were surrounded by an amazing team of pediatric cardiologists and nurses that are providing the absolute best care. She ended up going for surgery to repair the aorta on Tuesday September 27th. It went seemingly well however they had to leave her chest open due to some swelling on the heart and to monitor the bleeding. At 2:30am the next day, Jeff called my parents who are in town with them to rush to the hospital. Jeff and Katlyn were sleeping in the room with Lily and her heart suddenly stopped. A nurse was thankfully in the room and started compressions right away. An onslaught of machines, doctors, and nurses rushed in suddenly to keep Lily going. Brutally tough to witness for my brother and his wife. A few hours later they met with the doctors. Lily was back on the heart/lung machine and initial tests were showing no signs of brain, kidney, and liver issues despite the earlier events of the day. The doctors were “cautiously optimistic” but make no mistake this was a major setback in her recovery.

Since then Lily has made some improvements as well. She is showing positive test results when testing her brain, kidney, and liver still. Her medical team is working to wean her off the echmo as her heart is showing functionality now on its own. The doctors are affirming Jeff and Katlyn how encouraged they are by Lily’s progress and how her heart is performing. They will continue to do several tests as they plan to remove her from the machine completely.

HOW YOU CAN HELP:

We as a family fully believe that Lily is in the mighty hands of our Lord and Savior. We believe that He has been with us every step of the way and guided her through the pregnancy and these first few weeks. We ask that you join us in continued prayers for Jeff, Katlyn, and Lily. We ask that you lift up their medical team who are consistently giving her the best care. We ask that you continue to surround Jeff and Katlyn with love, support, and encouragement. We ask that you pray for minimal impact from Hurricane Ian as it closes in today. We also ask that you pray for rest for Lily’s heart, and for Jeff and Katlyn who have been in the hospital with her every single day.

If you feel so inclined to give, we know that they will be facing a ton of upcoming, unexpected medical bills. They also are growing in their expenses being away from home for so long. They likely have at least another month, potentially two before they will be able to take Lily home. Nothing is expected, but everything is greatly appreciated and will be sent directly to Jeff and Katlyn.