Today, you meet 10-year-old Lenora. I met her mother Lisa recently on our heart mamas page on Facebook, but have not have enough time to get to know her well. I look forward to learning more about her family. I hope you enjoy this entry – Sara
As I think about everything that has gone on with my daughter since her birth 10/02/2003 it amazes me the things she couldn’t go and can do now. The things a lot of people take for granted. Things we see on a daily basis other parents take for granite, things we do on a daily basis “normal” parents don’t do. Being a parent of a special needs child isn’t easy all the time. We have to learn how to take care of this CHD/Heart baby in a whole other way opposed to a “normal” baby. I remember the day Lenora was born it was about 830 in the evening Survivor was on and the Dr was telling me if I couldn’t concentrate on having Lenora he would turn the tv off. I delivered Lenora and about the time they were unlocking my bed to take me to OR because I wasn’t delivering the placenta. It was a week or two after she was born when we found out about her CHD. She went in for a checkup and then I was told by the Dr he would like her to be seen by a cardiologist. We went to Pediatrix cardiology and was there most the day to find out since we had been there a few years earlier with another child of ours that it was clinic that the same Dr see the whole family. So we made another appointment and went back. I can remember sitting in the office in a small room waiting for the doctor to come in. I remembering feeling sick to my stomach as I heard what the Dr was saying to me. 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. Lenora was diagnosed with Aortic Stenosis (AS). Dec. 19 2003 was the first cath Lenora had at St. Louis children’s. The Dr asked me St. Louis or KC? I for some reason said St. Louis knowing I had no friends or relatives there but all my family was in KC. Lenora had her 2nd cath February 25,2004 . The first surgery was done at Children’s Mercy in KC due to the fact that her cath Dr had transferred to Texas and I couldn’t see us driving that far so we went to KC for the next several procedures and surgeries. August 2004 Lenora has her first open heart surgery (OHS) her 2nd OHS was May 23, 2004 and her 3rd surgery was April 11, 2005. Lenora had her 3rd cath done April 11, 2005 and her 4th one Dec 22, 2005. April 22, 2006 Lenora was chosen as the Heart Walk Child. Between these appointments were weekly, every other week, every 3 weeks or monthly appointments.
I thought the hardest 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 pregnant? “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 than 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 her 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. During the first surgery I remember Dr. Lofland coming in and talking to us and telling us give us 45 mins to get her in her room and we will call and have you come to PICU. An hour and a half went by I then said OK I have to know what’s going on. I walked up to the desk in the Ronald McDonald room, they let us have way more people in there than normal but then again we were about the only family in there and we all fit in one room off in the corner so it wasn’t obvious they were being overly nice to us. I walked out to the desk and my dad followed me as I was walking out here come the nurse and Dr and stopped me, they proceeded to tell me that the reason it had taken so long was as they got her to her room she coded they rushed her back to OR and revived her. They decided to leave her chest open till the next day just in case she was to code again. Obviously they were wrong and she did the 2nd surgery 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. This surgery she didn’t want to come off the bypass machine there was no reason there were no “bleeders” or anything else that was missed she was being Lenora and it took a while for her to come off the bypass. Lenora got to where she had “her things” during surgery and they got to where when they did her procedures or surgeries they always would include the worst case scenario and beyond in case Lenora did something not textbook the Dr wouldn’t be taken off guard.