The Real Stories
We knew prior to her birth that Madalyn Grace would be born with a heart defect that would need to be surgically repaired sometime during her infancy. When she was born three weeks early by emergency c-section, we were surprised to discover that she had Down syndrome. In the days after her birth, we met with a Cardiologist who told us that in addition to her main heart defect that Maddy also had a large PDA. Basically, when the baby is in utero, there is a duct that allows the blood to bypass the babyís lungs. Once the baby is born, the duct should close on itís own. Maddyís did not and went into heart failure at 11 days old. She was admitted to the hospital and was then transported to UVA for surgery. The surgery went well and after a bumpy recovery period, she was able to come home.
Our goal then became to help her gain weight so that she would be ready to have her major surgery to repair her heart defect. Because her heart was working over time, she did not have very much energy to drink from a bottle. So, she had an NG tube and required around the clock feedings with a feeding pump. During this time she was on several medications that also had to be given around the clock.
At four months old, she reached her goal weight and was ready to have her open-heart surgery. Her surgery was done at UVA by the same surgeon who performed her first surgery. The surgery itself went perfectly and she recovered beautifully. When the PICU doctor said that she would probably be going home 3 days after her surgery, even the surgeon didnít believe it. Maddy proved to be quite a fighter. She drank from a bottle only a few times in the hospital after her surgery. We were really hoping that she would have the strength to drink from a bottle after her surgery and that we would not have to keep using the NG tube. The day before we were supposed to come home, she began to refuse the bottle and became dehydrated. We had no choice but to put in another NG tube. Five days after her surgery, we were able to go home.
Soon after arriving home, we started working with a Speech Pathologist to help Maddy drink from a bottle. Unfortunately, we were unsuccessful. For whatever reason, Maddy just was not having it. So, we moved on to cup drinking.
During the next few months, we continued to work on her cup drinking and began introducing solids. The process was slow, but I was determined to keep trying. Although she began to make some progress, the majority of her nutrition still came from the NG tube. After much thought, we decided to have a g-tube placed.
Once she no longer had the NG tube going down her throat, her oral feedings and speech greatly improved. In a short period of time, she went from taking a very small amount of baby food from my finger, to eating a bowl of baby food twice a day. Having the g-tube placed was the best decision that we could have made. I wish we had done it sooner.
Today, Maddy is doing great. She is continuing to improve with her oral feedings. We are looking forward to being able to decrease and eventually eliminate her tube feedings. We are so thankful that her heart surgeries are behind her. She is such a strong little girl.... she continues to amaze us every day!
~ Maddy's proud Mom, Kimy