This is Ava. After an exhausting pregnancy, we were excited to welcome her on February 17, 2013. The joy was short-lived, as the nurse heard a heart murmur during her exam. My husband and I each held her for a few minutes and then the nurse took her to the nursery to be checked further. She never came back. After what seemed like hours I had my husband, Marc, go there to see what was going on. He came back and said that they were still working on her. I immediately had a terrible feeling that something was very wrong. On my way to recovery from the delivery room, my nurse took me to the NICU to see Ava. She was hooked up to many lines and cords and had an oxygen hood over her head. Her oxygen level was only in the upper 70’s despite being on the oxygen. My visit there was a blur but I do remember a very angry Ava kicking her feet as the nurse was trying to poke her foot for a blood draw. It was overwhelming and scary. Around 3 am, Dr. Grifka came into my room and told us that Ava had Pulmonary Atresia with Intact Ventricular Septum as well as an Atrial Septal Defect. Her right ventricle was small and her Tricuspid valve was small and malformed. It was absolutely devastating. We had no idea that anything was wrong during the pregnancy.
She was airlifted to University of Michigan Mott Children’s hospital right away the next morning and had her first open heart surgery at 3 days old. After almost 4 weeks at Mott’s we were home! She had a bumpy road after coming home. She developed an infection in her incision, formula and reflux issues, as well as tubes in her ears at 3 months. But she has shown her strength and feistiness from the very beginning. She had her second open heart surgery at 13 months and is now thriving. She will be turning 4 soon and you would never know she has a CHD. She is full of LIFE, energy and spunk. She definitely keeps me on my toes and does not let her CHD define her!