I will start a little before Tucker was born. I had a routine echo and they couldn't find the left part of my heart. The doctor convinced us that he was just laying wrong. The day he was born he was blue and had a hard time taking his first breath. again the doctor convinced us after she got him breathing he was fine. The first time I went to nurse he would only nurse on one side. The doctor and nurses told me to force him to nurse on both sides he was just being lazy. Then when Tucker was 2 days old he quit nursing completely and started breathing hard. We took him to the local ER and they called Code Blue. They told us he had severe pneumonia and needed to to transfer him to a larger hospital. After about 4 hours of a series of tests, most all of Tucker's major organs were shutting down. The on call pediatric doctor called in "one last straw" the pediatric cardiologist. Within minutes they found out Tucker's aorta was almost completely shut and he had no lower left ventricle. With hat we were on a plane to Omaha, Nebraska. Where we had 3 decisions: "compassionate care" or other works take him home and let him die, or wait and see if we could get a transplant- but with Tucker as sick as he was and most  organs barely functioning we probably wouldn't find a donor in time, and last was to do a 3 stage surgery called a Fontan. We were lucky enough to have been able to meet with a family that had a 1 year old boy that had already gone through one of the 3 surgeries. So we chose the Fontan. Tucker actually had 4 open heart surgeries and 2 pacemaker surgeries by the age of two. The extra surgery was when Tucker was 1 month old he went back into heart failure and we were Life Flighted to Omaha again to find out he had 4 leaflets on one of his valves instead of 3. 
A month ago Tucker started coughing a lot and his O2 started really dropping. He had an echo about 3 weeks ago, which showed his heart is not squeezing very efficiently. So we needed to hurry to Omaha. He was in the hospital for over a week. They ran a bunch of tests and he is in heart failure. We found out he is a good candidate for Heart Transplant. They gave him a bunch of new meds. We need to be  within 4 hours of Nebraska Medical before the will put him on the transplant list.