City
Weaverville

My Story
Kaius was diagnosed with HLHS prenatally. He came into the world May 28th at Levine Children's Hospital. He had his first open heart surgery, the Norwood, at just 4 days old. His left vocal cord was paralyzed and we had an aspiration scare, but he did very well recovering. After a month we were able to bring him home. We tried to do oatmeal thickened milk by mouth with him on his side but he did not take well to it, so we used his NG-tube for all feeds.
Kaius then had his second open heart surgery, the Glenn, right before he was 6 months old. He did very well with recovery but still did not want to eat so he received his G-tube. We spent Thanksgiving in the hospital and then after about 3 weeks we were able to go back home.
We now wait for his third open heart surgery, the Fontan. Since his first two: his vocal cord did heal on its own over time, he now eats and drinks by mouth and does not have a feeding tube anymore, he graduated out of speech therapy (for now), and he loves running around with his cousins/friends. It’s hard to put all the details into words with everything he has been through, but God is so good and we are thankful for Levine Children’s. So while we wait for the next open heart surgery, we will soak up all the love and fun with our boy.