Jennifer - posted on 01/15/2009 ( 1 mom has responded )
I just wanted to say Hello and introduce myself...my name is Jennifer and I have 2 kids...Shauna is 5 1/2 and my son Alexander is 2 1/2. Shauna had a really rough go of things when she was born. She had a very very difficult delivery when she was born. Acutally she wasnt even breathing when she came out, they had to intibate her. Luckily she was extibated and holding her own before she left my room but that was just the start of what would end up being a horrible week for my husband and I. When Shauna was first born they had ner in the baby icu. They next day they did a scan on her to be sure she didnt have any major problems because of the delivery. Thats when they found her VSD. It was small, actually the size of a pin prick we were first told. We were horrified. We never thought something like that would happen. The next day she got Jondus and we were there a week before she could come home. Everything was ok with her heart and she had to see a cardiologist once a year for a check up. We were told because the VSD is located close to a valve and in the cartiledge not the muscle she had less than a 50% chance it would close on its own. So we waited and waited and waited each year for good news but it never came. Its actually kind of weird because you dont even need a stethascope to hear her heart is different. Actually you dont even need to have your head right on her chest to hear it. You can feel the vibration if you put your hand over her heart. We were always told that between the ages of 5 and 7 they would consider fixing it. Well in May of '08 she turned 5. We were referred to a new cardiologist..the surgon who would actually fix it should it need to be done and did we get a huge shock. After her first echo and EKG with the new doctor they found she also has a DCRV. So she was immediately scheduled for a cardio catherization. That was the longest day of my life. I was trying to be brave for her and for me and my husband was not taking it well at all. It took a few days for everything to sink in for him. They had told us for 5 years if the problem was to be fixed that they could do it through her leg like a stint. The new doctor said there is no way that could happen, it was to close to a valve...it would have to be open heart surgery if it was to happen. I did alot of research and found out alot of things to help me get through it.
However this story does have a happy ending. When she had her carido cath done in November it was found that her blood flows and oxygen levels were running at levels that were just fine. No open heart was needed at this time and it may never happen. Now we go back to waiting and going in every year to see that its the same and nothings changed. Whcih is good news however, it still is something I have to continue to worry about for the rest of her life unless they change their minds and decide to fix it at some point which is kind of bittersweet.
I look forward to talking with each of you!!