Our day began with us trying to leave the house and realizing that Magdalena had pulled her feeding tube out of her nose! We didn't have time to worry about it then because we had to be on our way. Thankfully, she slept past her feeding time which meant she woke hungry and was able to eat a full feeding by mouth. After her cardiologist appointment we went to the NICU at Baptist to have one of our favorite nurses put one in her nose before her afternoon feeding.
The appointment today seemed overwhelming. It began as we were sitting in the waiting room, and as most women do there was small talk occurring, which was fine until personal questions began to arise about Magdalena's health. It didn't bother Noah, but I just don't like talking about her syndrome in a doctors office. Maybe it is because my emotions are going crazy as it is. Mothers were talking about their experiences with their children having heart surgery, etc.
Magdalena did great. She hardly cried during the echo and when the doctor listened to her heart. Her heart problems have not healed on their own. The oxygen and blood in her body is mixing too much. The vessel that normally closes with babies in the first week following birth has not closed in her heart. Also, there is a hole. This is fixable with surgery, but Noah and I have to be careful about the surgical decisions that we make. We don't want her to spend her short life in pain trying to heal from a surgery while another part of her body is failing. However long she is with us we want her to be happy. When we returned to the house I called the geneticist who can look at Magdalena's individual situation and hopefully give us some better information so that we can make an informed decision. I say this because so many doctors are negative about any attempts to extend the life of a T18 baby because most of them have so many problems that it is better to just let go. We are praying that our geneticist can look at Magdalena's charts and explain to us if her heart is her only major problem or are there others about to occur. Magdalena will always have delays metally and physically, but our concern is with major health issues.
We want to feel a peace about the decision we make with no regrets and what ifs knowing that we have made the decisions that will bring glory to God through our beautiful daughter.