Our Kids - Lily

Our journey of having a child with Congenital Heart defects began when I was 20 weeks pregnant. We never would have imagined hearing news like this seeing we have a wonderful and healthy boy, Hunter, who was born March 2006. Once we were told news we decided that U of M Motts Children’s Hospital was the best place for our daughter to be and that Dr. Bove, one of the best pediatric cardiac surgeons in the world, was going to be her surgeon.

Our beautiful little girl, Lily Marie, was born July 30, 2007. Lily Marie was diagnosed with L-TGA, Pulmonary Artesia and AVSD. We were well prepared and knew that Lily would have her first surgery very early on in life. She spent her first week in the PICU until she had her surgery. This was a difficult time because we were unaware of when her surgery would be scheduled until a few days ahead so we spent much of our time with her. It was also a difficult time because we were not able to hold her except on a few occasions and of course the night and morning before surgery.

It was a very difficult morning when we had to give Lily over to the surgical team but we knew how blessed we were to have such a great team. We had all the confidence in the world in them and knew that Lily would be in amazing hands. Lily’s surgery went wonderfully and we were so proud of her. Her recovery process had some ups and downs with some series of SVT, three nights of fevers, blood cultures, and not feeding well therefore needing a NG Tube. This time was very hard for all of us. I stayed at the hospital with Lily day and night and David was up every morning before work and every evening after work. This was such an emotional time for us and we were blessed to have friends and family that were able to watch our son Hunter day in and day out. Finally, after spending three weeks in the hospital Lily was able to come home with us. We were so nervous and didn’t know what to expect but we were so happy to be going home with both of our children. Lily has made such wonderful progress and we are so excited to see her grow each day.

The Cardiologist and Surgical Teams are unsure of how they want to repair Lily’s heart. They are debating between either a single ventricle repair or a two Ventricle repair. We should know more in the upcoming months. Whatever the decision, we have 100% confidence in the Teams and feel that we are very blessed to have them care for our daughter. We are very proud of Lily Marie and we believe that she will triumph all that comes her way with flying colors. She truly is an inspiration to all of us and we love her dearly.

David and Jennifer (loving parents of Lily)
Hunter (loving big brother to Lily)

Diagnosis: L-TGA, AVSD, Pulmonary Artesia
Surgeries: BT Shunt (August 07), Upcoming surgeries to be determined in the upcoming months.
Carepage: LilyMarieSwatosh