Expecting our third child, we were blessed that SSM Health Cardinal Glennon Children’s Hospital was chosen for us to be our home away from home for our sweet miracle to come. At 24 weeks, we were told by our OB GYN…a man we had come to love and trust, our baby girl had some sort of heart issue. This was over his head and immediately we were sent to the hospital’s St. Louis Fetal Care Institute to be welcomed by doctors, nurses, specialists and many others who would diagnose her as having tricuspid atresia…later hypoplastic right heart syndrome. The initial shock quickly wore off and honestly Damien and I felt a sense of calm take over. We were not scared of what was to come but only concentrated on how blessed we were to have two top surgeons as well as an incredible team of cardiologists on our side.
With Dr. Vlastos by my side, Lilly was born just two weeks shy of her due date. We were well prepared for what was to come, but in our case it was the complete opposite. Instead of lifeless and grey, she was pink and screaming. However a phenomenal team would still need to take her to the Neonatal Intensive Care Unit (NICU) soon after her arrival. There, surrounded by exceptional care, she had a quick nine-day-stay and in her “Lilly way” showed them who was boss meeting milestones, reaching goals, not needing certain medications and able to go home.
At around 3 months old we emergently rushed Lilly by ambulance to Cardinal Glennon. Doctors worked round the clock, nurses didn’t leave her side, volunteers treated us like royalty and janitorial staff did more than keep our rooms neat and tidy. A family began to form around a little girl less than eight pounds who would undergo three open-heart surgeries, a procedure to keep fluid from developing around her lung, caths, echos, x-rays, scans, pokes, EKGs…you name it and Lilly probably had it done to her multiple times over her three month stay.
After returning home Lilly lead a somewhat normal life until August. At a year and a half she would now re-enter Glennon for her fourth open heart surgery. This time was different because she was older and seemed so healthy even though she was not. She was walking, talking, eating, following her brother and sister around and just living a typical toddler life. However, this time wasn’t different in that things did not go according to plan. Lilly always was a handful when we brought her to the hospital and this time she was too. She developed a high fever, liver and kidneys were beginning to shut down and what they had done was not working. With the brilliant, skilled, loving minds hard at work…PICU Staff, Surgeons, Cardiologists, TCU Staff, and so many more …corrected what they believed to be causing so many issues this time with Lilly and over time…nearly a month…in her own time…Lilly time…she came around.
Cardinal Glennon is our HOME away from home. We feel comfort walking through those front doors. We feel love when we see so many faces we now know and they know us…immediately smiling, hugging, asking about our family or insisting on helping. We feel blessed to have Dr. Huddleston and Dr. Fiore both work with Lilly as well as Dr. Danon, Dr. Renuke Peterson and the entire Cardiology team!
We thank God each and every day for all of those at Cardinal Glennon who have loved and helped us along our continuing journey. We pray each day for more funding to allow more research to enable more technology and advancements in medicine and surgery which may just allow our sweet Lilly a future filled with many firsts and accomplishments. We have been fortunate to have access to the Pediatric Hybrid Cardiac Catheterization Suite, the state of the art Imaging Center, operating rooms and PICU, the comprehensive services, technology and people behind the Dorothy and Larry Dallas Heart Center and so much more. We can only trust and have faith that phenomenal people will continue to support this place we often have called home…this place that has saved our baby time and time again…this place we pray will allow her a wonderful life like any other “normal” child. We are so grateful for contributions and we continue to believe they will help keep our baby and so many others thriving and safe! We know we cannot possibly mention each and every person who has been the sunshine on our dark days or the cheerleader in the room when days were good but to all of you, we are forever grateful!????