Levi has been so strong during this hospital stay. We have been here since he was born. He is barely three weeks old right now and has endured more in this time than most people so in their entire lives. He had his first surgery, the Norwood, when he was 5 days old. This is the first of three open heart surgeries that he will need to help his half of a heart work the best that it can.
He has made so much great progress: his chest was closed a day after surgery (which is amazing and means he didn’t have as much swelling as they anticipated), he was weaned off the ventilator and oxygen support and has been breathing room air, his chest tubes were taken out, he has been weaned off many medication and had all of his IVs taken out. He had feeding tubes for a little while, but is now working on taking all of his calories by bottle. We are so proud of him!
We are still in the hospital, learning how to care for him and helping him learn how to eat. These babies often have trouble with eating, as they tire more quickly and develop oral aversions from the interventions they need. (Like breathing tubes, ect) One of our doctors explained that it would be like one of us running a marathon and trying to eat a cheeseburger at the same time. It is hard work! He will need monitoring and nursing care at home during the “interstage” (time between this surgery and the next).
We are so excited and nervous to think about leaving the hospital for a couple of months.