On the 23rd of February, when Carter was only 3 weeks old, he underwent his first open heart surgery. He went through a procedure known as the Norwood procedure. This life saving procedure allowed us to eventually take Carter home with us. We knew he was very weak and that the Norwood procedure did not solve the problem entirely. Over the next few months we made many trips back and forth to the hospital for check ups, and for other “minor” surgical procedures. On the 26th of July 2010 Carter was healthy enough to go through the second phase of the surgical process, the Glenn procedure. This was his second open heart surgery. As you can imagine we were extremely nervous for Carter to undergo such an extreme procedure for the second time in his very short life. Thankfully, he came out of the surgery as well as could be expected. Over the next few days and months it became apparent that while the surgery was successful, there were remaining complications, and that Carter was not responding to the surgery as he should be. We went through more “minor” procedures and many, many trips to the hospital.
We have adapted to “normal” life for our family. This means: knowing infant CPR; introducing all of the emergency technicians in our small town to Carter so they can know the details of his care if called in an emergency; having Seattle Children’s Hospital on speed dial; and knowing how to administer feeding and breathing tubes if needed. We have lived this “normal” life since the Glenn procedure while we waited to see if Carter would be a good candidate for the final surgical procedure, the Fontan. This procedure is usually done when the patient is approximately 30 pounds. However, right around Carter’s first birthday there were some complications and between February 2011 and March 2011 it became apparent that he would not be a good candidate for the Fontan procedure and that the only other course of action would be a heart transplant.