Hypothropic Cardiomyopathy

We had our follow up appointment to Preston's Cardiologist on Monday.  I went in expecting him to be cleared because our first visit seemed very positive.  At his first visit the Pulmonary Hypertension had disappeared and he said that the thickening of the heart muscle had already decreased.  I went in thinking this would be like the last appointment.  Well, this time was a different story.  When I took Preston in with Lily to do the Ultra Sound he was not very happy about it at first.  I had to hold him down and soothe him and eventually I was able to get him to relax and fall asleep.  The Ultra Sound tech seemed to be taking a lot of pictures and this was the first thing that made me nervous.  The second sign was when the doctor came in with the look of sadness on his face.  I just knew that Preston was not going to be cleared.  Now, as a mother this is the worst thing to ever deal with.  I must say that I have learned to deal with these situations fairly well.  I shut down partially and put on my happy face.  I listened to what the doctor said but inside I was having an emotional panic attack.  I mean...who wants to hear that their sweet little baby may have a heart disease? To top this all off the Cardiologist stated that if he does have this disease that we may have to go to genetic counseling and have chromosomal testing done to determine where he got the disease.  There are two things that I thought about with this testing: 1. What if it is MY fault? What if it is my genes that made my child unable to live a normal life? 2. What if Lily has it too?. Yes, I was in full swing internal panic mode at this moment.  The doctor told me not to panic (yea, okay!) and that Preston is a normal baby who can cry and be fine.  They said that they want to do a follow up in 6 months before they will confirm Hypothropic Cardiomyopathy or clear him if he shows improvement.

What is Hypothropic Cardiomyopathy? Basically, one of the muscles in the heart is thicker than the others.  This can lead to blockages or clotting and can cause a young child who is physically active in sports to fall over dead.  You hear about this on the news.  The good thing about this....most people have NO idea that they have this disease...Preston is lucky enough to know.  KNOWING MEANS PREVENTING! If he has this disease we will have to have a huge lifestyle change.  We will have to make sure that Preston is super healthy with minimal exercise which means most of his health will depend on the food he eats.  I will be the mom who who eat baked tilapia with my boy while everyone else eats hamburgers if I have to! Anything to make sure that he gets to live a long and healthy life! I have looked into this disease only briefly because I do not want to freak myself out.  I am only basing my opinions in this paragraph based on a few articles that I have read.  If anyone else knows information please share :) If some of the information is not 100% accurate...be aware that in 6 months if he is diagnosed...I will know everything there is to know about it and I will correct any mistakes that may exist! :)