Friday, July 07, 2006

Boyda family heart story.

On July 29, 2004, my second beautiful daughter Karly came into this world with a healthy set of lungs, as she cried for the first 2 hours of her short life. I felt an intense love as I had with my first daughter. I thought about how I wouldn’t be so nervous with a second child and that thought would come back to me again and again. So I enjoyed my 6 ½ pound bundle of cuteness and the next day was told by the pediatrician that she detected a heart murmur and not to worry because it usually goes away within the first 24-48 hours of life. It was, again detected the next day by a different doctor and they thought it would be a good idea for her to be seen by a cardiologist. I tried not to focus on that and never in my wildest dreams ever thought a child, let alone a newborn, could have a heart problem. Boy was I na├»ve. So we went home and I felt good and thought how much easier this was the second time around. At a week old we went to see the cardiologist. On the way to the appointment I thought could there be something wrong. No she is fine. But in the back of my mind I had this sinking feeling in my stomach.

That day August 5, 2004 will forever be etched into my mind. I heard nothing other than, “We need to life flight your daughter to CHOP(Children’s Hospital of Pittsburgh) for open heart surgery.” Everything stopped and crashed before my eyes. I seemed to be in a fog that I couldn’t get out of. In my mind I yelled. “You are not taking my child, she is a baby.” At that moment it was out of my hands. I could do nothing but sob in disbelief as I watched them prepare her for flight, which was 90 minutes away from me. I hadn’t left her for a second in the week that I had her with me. At that point I thought I couldn’t go on. I felt physically ill, angry, and most of all sadness of what could never be. I still feel that way sometimes, but for shorter periods of time. For many, many months and still to this day I questioned every cry, lack of interest in eating, cold, fever, etc. I feel sad because that experience was taken from me and in my own way of coping I missed out on truly enjoying my beautiful daughter because I was fearful of the “what if..”

Eventually I was able to comprehend her diagnosis of Aortic Stenosis with a bicuspid valve that was fused together when she was born. She also has Coarctation of the Aorta. She had surgery to cut the fused valve and open it up and a Coarctation repair which seemed to have been a success. She came through the surgery well and at 23 months continues to do well and is developmentally on track. She continues to be monitored closely by her cardiologist and we know someday she will need another surgery. Hopefully many years down the road. Some days I feel like it could be so much worse and other days I feel it couldn’t be any worse.

Looking back on the past 2 years I have made mistakes. Our family has had ups and downs on this emotional roller coaster. It not only affected my husband and I, but our other daughter who is almost 7. I know we will never be the same after this experience. I also know in my heart I would never change a minute or anything because if I did I would not have my daughter and for that I am grateful. I know this journey my family has been on has a purpose and a reason. I have yet to figure out what that is and why. Until then, I will cherish every precious moment I have, not only with her, but both of my children. I could never go through the heartache of what me and my family have been through again. That is why I will be blessed with 2 children and no more. In her young 2 years of life, my daughter has taught me so much and I pray I get the chance to teach her as much.

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