Hypoplastic Left Heart Syndrome
After three years of doctors telling me I could not get pregnant, we decided to try IVF. After two years of agony, it didn't work. My husband and I decided that we were already blessed with two beautiful girls from previous marriages so why keep going. Well much to my surprise I got pregnant in December of 2005.
In August Isabel came into our world a little small, 4lbs 8 oz, but the doctors told us "everything is fine". We went home four days later; I was a C-section. Well 28 days later Isabel was very irritable, stops eating and stopped wetting a diaper. We took her into the ER, they did a spinal tap, and blood work and chest X-ray, but found nothing. After seven hours in the ER they decide to keep her for 24 hours on IV. When they finally have a room for her it was on the adult floor because this hospital does not have a pediatric floor. On our way up in the elevator she was lethargic; I knew something was just not right. When we got into the room I told the nurse, "Please something is wrong with my baby, something is not right." She agreed, went out of the room and came back in with a whole set of doctors and nurses. I was then kicked out of the room and the next thing I hear was Diaz baby respiratory failure. My heart sank!!
IShe was then flown to another hospital where she was diagnosed with HLHS (hypo plastic left heart syndrome). She was very sick and they couldn't get a central line in her heart so she was then transported to another hospital. She spent two weeks trying to recover so that she can have the first of three surgeries. They told us she probably won't make it over and over and that she was a very sick baby.
IWell she prevailed and had the first surgery; we went home after 35 days in the hospital. Then, exactly two months later she developed a "virus" and went into cardiac arrhythmia where she was administered CPR for over an hour.
IShe was then placed on ECMO and the ventilator. We waited and prayed that God would again have mercy on our baby and that His will be done. Isabel spent 103 agonizing days in the hospital. She had two cardiac caths done because her pressures wouldn't come down. She had what they called "neurological storms" where she literally had to be induced into a minor coma where she slept the rest of the day. She lost so many of her veins where she accidentally received an IV burn on her foot.
IWhen she was finally cleared for her second surgery, it went very well. She then developed steomyelitis and had to have her chest reopened for a debridement of the sternum. She lost two pic lines but after a long road we came home April of 2007. Though Isabel has had many setbacks especially with her gross motor skills she is a very happy and alert child. We have been so blessed and wouldn't have asked for anything more. I truly believe that God was with her through it all and that He has answered our prayers. This experience has made my faith stronger and I am a better mother.
*Written by: Isabel's Mom