Aliza's Heart

Often as parents of a child with a heart defect we find ourselves waiting for the shoe to drop. We are always wondering if Aliza's heart defect is the cause for this problem or that. When she was 3 weeks old she had her heart defect repaired, however the surgery left her with a valve that does not function properly and may one day need to be repaired. She is on a daily heart medication to lower her blood pressure so that her heart does not pump as forcefully so that the malfunctioning valve does not pump blood as forcefully back into her lungs, causing lung problems and eventually heart failure.

We have always known that one day we will be looking at another heart surgery and we pray that this is years away. As Aliza is getting older, she is almost 9, she is getting smaller...No, she is not shrinking, but she is not growing. She is losing weight, but she still looks very healthy and is very active. Her siblings sure are gaining on her. Aliza is 47 inches tall, and has been for over 1 year, Trevor is 50 inches tall and sprouting fast, and Ella is 46 inches tall (she is a tall 4 year old) So you can understand our concerns that maybe Aliza's heart is not able to keep up with her hence the lack of growth. So yesterday was our visit to our wonderful, amazing, kind, I cant say enough good things about him, Cardiologist Dr. Michael McCulloch at Nemours Cardiac Center. We have checked in with him every 6 months for the past few years. We discussed our concerns with him...He is a dad of two young kids and I really feel he gets it! He does not think we are crazy or paranoid parents, how could you be when you have a child with a HEART defect... We are not talking about a broken limb, we are talking about her heart. There are many things in life we can live without... Aliza can not live without her heart and I can not live without her. And this love I have for her may cause me to worry and make a bigger deal out of some things that may seem trivial to others. I owe a huge thank you to Dr. McCulloch for understanding our love for Aliza and validating our concerns while at the same time easing our fears. According to the "Great Doctor" Aliza looks great! While she has lost weight and not gained height, we have can rest assured that her little ticker is ticking away. We charted her on a Down syndrome growth chart and she is on the same curve she has always been. She has dropped within her curve, but not dramatically. As her peers are shooting up around her she this makes her petite stature so much more evident, but who cares about what is essentially a cosmetic concern. And now we breathe, at least until the next issue...