Madi, born 2008On January 19, 2008, our beautiful little daughter was born weighing in at 6lbs 5oz. Madi passed her APGARs with flying colors and went home with us 48 hours later. Due to poor weight gain, we were in for weekly trips to the pediatrician's office at Riley Children's Hospital. The night before her one month check-up I told her father, "If she hasn't gained weight this time, I think they will admit her to make sure everything is ok." Little did I know how dramatically our lives were going to change that day.
On that Friday, February 16th, they wanted to do an echocardiogram to "rule some things out!" I had worked as a back office medical assistant in a general pediatric office for years, so my heart immediately sank, and the tears were already flowing. I knew something wasn't right. Upon seeing the echo with the red and blue all mixed together I began to become very nervous. Then all of a sudden, a team of doctors came in and explained to me that our baby girl had HLHS. That was quite a bit of information to swallow. I felt like I had been hit by a truck. I wasn't exactly sure what this diagnosis meant, but I knew it would be a long and difficult road ahead of us.
Since that day, our Madi has been asked to fight harder than any child should ever have to. Because she was diagnosed so late, her pulmonary pressures were very high and did not qualify for the Norwood so she had a PA Band. Madi spent five weeks in the hospital recovering and coded once in the PICU the night of her surgery. She also had trouble eating after this surgery and in May, she had a G-tube. In June, we found out that her pressures were still not low enough for the Hemi-Fontan, so on August 27th, they placed a Central Shunt. The end results shock us to the core. The surgery went well, but Madi's lungs were having trouble adjusting to the changes and she had to be placed on ECMO for 72 hours.
Three weeks later, we brought our daughter home free of oxygen and monitors. Today, she continues to be fed via GJ-tube now but otherwise is perfectly healthy and happy and continues to thrive. She scoots all around our home and acts like a perfectly normal kiddo.
She had a second heart catheterization on February 17, 2009 that showed her pressures were going down quite a bit. She will have another in the next four months and hopefully will be a candidate for the Hemi-Fontan.
Madalyn has shown us a new view on life. She is our inspiration for everything we do each and every day. Her strength and will continue to amaze us. We feel blessed that God gave us such an amazing angel who has completely changed our lives forever. We are confident that Madi will continue to fight and thrive and will live a long and amazing life.
For those parents out there going through similar situations, the advice we have is to remember to be there for one another, believe in the strength of God, and never stop asking questions! Make sure you always know and understand every detail in your child's care. Oh, and mom's always know best; trust your intuition!
Story by Madi's mom, Nicole - INDIANA
Makenzie, born 2004
Madison - 2000