We found out about Avery's heart before she was born, about halfway through my pregnancy. She would need to be born in Omaha, nearly three hours from home, and have her first open heart surgery in her first few days. She was born 9/14/09 at healthy 7 lbs, 14 oz. She looked absolutely perfect on the outside but she had a life-threatening heart defect, Hypoplastic Left Heart Syndrome (HLHS), and would die without surgery. "Hypoplast" means small. HLHS means that the left side of her heart was missing or severely underdeveloped. A normal heart has four chambers, Avery's has two. There is no cure for HLHS, rather a series of three surgeries that will allow her tiny heart to pump minimally oxygenated blood sufficiently to her body and organs.
She had her first surgery at four days old and spent just over a month at Children's Hospital. Other than doctor appointments, the next five months were spent at home where it was very critical that she not get sick. A runny nose or cough for one child, could have been fatal for her. Her sisters would have to shower immediately when they came home from school and sanitize each time they touched her. It became routine very quickly and they were so good with her and SO happy to have her home!!!
She was days shy of her 6 month birthday when she had her second surgery on 3/6/10. Amazingly, she was home in less than a week and was back to sitting up and would soon learn to crawl! She had a very quick recovery and we were finally able to take her out and show her off! Then she had her third surgery in the Summer of 2013. We will always have to be careful with germs and illness as it seems to hit single ventricle kids harder and faster than heart healthy kids but we lead VERY normal lives...we just use lots of hand sanitizer!
Today she is a Kindergartener and will go on her Make-A-Wish trip in November 2015! Outwardly she looks like any other 6 year old but inside she is very, very different. While her future is uncertain and she will need more surgeries (and likely a transplant someday) today she is doing amazing and for that we are thankful! We are extremely blessed and it is nothing short of a miracle that she has done so well! Kids with HLHS usually face many obstacles. Even Avery's doctors are amazed and as her cardiologist said, "If I could order every HLHS case like this, I would!" She is very proud of her tiny heart and loves to show her scar and tell how "The doctor fixed my heart!"