I remember the day that we found out about Sophia's heart defect, something that is pretty common in children with Down syndrome. She was two days old and they were about to take her back for her first surgery, to repair a blockage in her intestine. They informed us that Sophia had an Atrioventricular Canal Defect (AV canal defect) and would eventually need surgery. Basically she had two holes in her heart, one in the upper chamber and one in the lower chamber of the heart, causing her blood to mix. Sophia was monitored very closely by her cardiologist for her first few months before it was evident that due to Sophia's pulmonary hypertension, she was going to need to have her heart repaired, at 6 months old.
I knew it was coming, but the day I heard the news that we would be moving forward with her open heart surgery (OHS), it was a blow to the stomach. I wasn't ready for this. But I went home and tried to find as much as I could about babies with Down syndrome and having OHS. I found some helpful things that prepared me a little for what was about to come, and then I found things that only took me to a place I never wanted to go.
When the day finally came and we had to hand our baby over to her team of nurses and her heart surgeon, I didn't know what to do. I had no control over what happened inside that surgery room. I felt helpless and scared. A million 'what ifs' went through my mind that only did more harm then good. So the only thing I knew to do was pray. I had to put my trust in God's hands. If anyone was going to take care of my baby girl in that room, it was going to be Him. In such an emotional state, that was the only way to find any comfort in the situation....to know that God was with my baby and was going to keep her safe for me. And He did just that.
Sophia came out of surgery with a mended heart and no complications. Thank you Jesus! She definitely looked intimidating at first, but she needed me and I needed her, so I had to put my own fears aside and be the strong mommy that my little girl needed me to be. When you see the pictures right after her surgery, it's looks horrific almost. But nine days post surgery and we were getting our discharge papers and heading home, complete with a whole heart, and a new outlook on life.