Saving Little Hearts

Hello my name is Lisa. I am the mother of Lenora born Oct. 2, 2003. She was born with a CHD. Her CHD is Aortic Stenosis (AS); the narrowing of the heart valve. After her check up by the pediatrician he told me I needed to take her to the cardiologist specialist in Springfield, MO. The first visit seemed like forever. After the doctor came in and told me what she said he then told my Mother in Law and I this could be terminal. Dec. 19, 2003 she had her first Cardiac Catheterization (cath.) then her 2nd one again in Feb. 25, 2004 both of these in St. Louis. Between these appointments were visit's to Springfield to the cardiologist once a month, or every 3 weeks. In Aug. of 2004 she had her first open heart surgery at Children's Mercy Hospital in KC, MO; again followed by month visits to Springfield cardiologist. She then had her 2nd open heart surgery in May 23, 2004 yes about 7 1/2 months later. She has had 2 other cardiac cath's during this time the 3rd one April 11, 2005 and the 4th one was Dec. 22, 2005. She is scheduled for a 3rd open heart surgery. I thought the hordes thing in my life was watching my mother die in front of me, this has got to be one of the worst things I've dealt with being a mom. Both surgeries she had something like a glitch ( that she is known for her in surgery for her to do now) that makes your mind race and do the what ifs. She is the 3rd child of mine and my last child. It is so hard to describe to someone that is not a mother of a CHD child what we mom's go through on a day to day basis. You go through the "did I do something wrong when I was pg? "Why is this happening" "will she be 'normal'?" Will she be able to be in sports and gym? My best thought right now is that "I hope none of this will affect her when she's in school". Finding a baby sitter other then a family member is hard to do. Not most people want to take on a "baby' with a heart problem there scared to watch her"_ The Aortic Valve Stenosis the narrowing of the valve between he left ventricle and the aorta. The narrowing makes it difficult for the heart to pump blood to the body and can result in an enlarged heart and ultimately, heart failure. After several catheterization procedures to see how restricted Lenora's valve was, doctors decided to relieve some of the pressure in t he heart chamber to make it easier for her heart to work. The way it was described to me was the top part of her heart had 2 times as much pressure as the bottom. The surgeries will even things out. Both of the surgeries were where they took the sub aortic membrane out. The first surgery was the only surgery she was to have. Obviously they were wrong and she did the 2nd one to take the flap back out and to do a Doty procedure. The Doty procedure is where they put a pair of "pants" on a valve to get it to open up it was made of man made material so we didn't have to worry about any type of rejection. The American Heart Association (AHA) chose Lenora to be the heart walk child for the walk on April 22, 2006. 1 would love to be able to go somewhere for a few hours and "forget" about things. It's hard to go somewhere and not think "wonder if she's o*?", "is she running too much?" The little questions everyone takes for granted I continually ask myself all the time. Yes she goes to my stepmother in law and father in laws house but that doesn't make it "go away". I call and check and it's a little easier letting her go there, but its still hard. We have basically put our lives on hold to get her through all this. We don't have the chance or opportunity to set a date slot of times to set operations or procedures up. It's you need to be there on this date and this time_ It's not something we can plan on and save money up for and when your stuck in a hospital for a week or longer at a time with the most stress in your life it weighs on you_ Your worried about how your child is doing in surgery/procedure. Wonder what kind of restrictions will be put on them this time. My dream vacation or day off would of been that cruise with Kenny Chesney in a beach concert with like 5 people. I have that set in my mind and day dream about it when were at the hospital just waiting and waiting. I wouldn't give anything to not stay here with Lenora. Yes it's a lot of stress, and it wears on you, but if you go somewhere w/o her then you are continually thinking of the shoved mentioned questions. She can't do the "fun" things all other 2 year olds can. No rides at the fair's that are in town, or grandparents wanting to take them to Branson. She can't be outside when it's to hot. On top of her heart problem she has eczema. The poor little thing can't win for anything. At this point she is to be limited on wrestling, football, there's like 4 things she has to limit. She can't have chocolate, or caffeine; can't fall on her chest. Most definitely no sunburn to that area of her chest. She has a bed in her own room, but I don't feel comfy enough to let her sleep in it by herself_ If I can't feel her and feel her breathing she's not close enough. I want to be able to role over and feel her breathing when I touch her tummy. I can't tell that if she's in her room in her bed. She breathes so shallow that you can't tell till your "on top " of her. It's easier to just touch her. I have had a sudden change in the last 2 1/2 yr., you don't know when the "time is up" you have to take your time everyday with a CHD child. We live the same as everyone else, just with different rules, ascpects of life with a CHD child. You have to be able to attend to that child as well as your other children and not spend all the time with the CHD child. It’s not that a CHD child is spoild or anything. Lenora get’s A LOT of attention but I’ve been trying to get awareness in our community too and using the local newspaper to do that.