A
Amanda
Hello Im new to this site so not sure where to post this message. I was intreduced to this site by Emma. Well this is why Im here:
My daughter Jasmine was born with CAVSD, pulmonary stenosis, hplv, and a large number of VSDs. When Jasmine was born we knew nothing about this she was a healthy pink baby. At Jasmines first check up when she was born the nurse thought she could hear a mumor so we were asked to stay another day. The next day a ECG was done on Jasmine and we were told that was all fine and we could go. At Jasmines 6 week check my doctor noticed the heart mumor and said he would like us to have an outpatience appt at the hospital to get it checked. Still I was not concerned as she looked so well. At the hospital when Jasmine was 4mths we were told that she did have a mumor and for us to come back in a week for a scan. So we went back and that was when the bomb shell hit us. After following the doctor to the ECHO room and to the ECG room and back again he told us that very scary sentence she will need open heart surgery because..... . Jasmines first open heart surgery was at 6 mths, she was still a healthy looking baby so found it hard to accept that she was ill. We arrived at the hospital and were then turned away due to her operation being cancelled. We went back a week later and she had her first surgery the next day, the surgeon managed to do all he could but did not seem happy. We went in to see her and after floods of tears felt joy that she was doing well, we then went to get something to eat. But when we returned it was a different story as we were stopped at the door of the intensive care, Jasmines heart rate had gone up to 280 and the drs were trying to stabilise her. The wonderfull drs and nurses in the intensive care managed to keep my baby girl here that night they said it was a struggle and that she would need more surgery the next day but they got her through the night. The next morning Jasmine was taken back to theatre as a stitch in her heart had opened thus causing the eratic heart rate. She managed to get through this and after going on kidney dyalisis, having fluid build up in the lung caverty and a brain scan Jasmine was back up on the ward after spending almost 2 weeks in intensive care. She was sent home with a cocktail of drugs then after a month she rapidly started to loose weight and turn Yellow. She was taken back to hospital and we were told she had heamolitic anemia, this was due to the leak in her mitral valve because the blood was jetting through at such a pressure it was breaking up the red blood cells. So Jasmine was put on folic acid and iron. After more months of no weight gain we were finally told last april that Jasmines mitral valve leak was so server that she would need the surgery soon. Jasmines third operation was in May last year and her Mitral valve was replaced with a 19mm st Jude valve. She now only takes warfarin and we check her INR at home using a coaguchek machine. We have been in and out of hospital a few times due to low or high INR. And she still hasnt got a regular warfarin dose. So Im hoping I might be able to find some tips on here and meet some lovely people who are in the same situation as my self or as Jasmine.
My daughter Jasmine was born with CAVSD, pulmonary stenosis, hplv, and a large number of VSDs. When Jasmine was born we knew nothing about this she was a healthy pink baby. At Jasmines first check up when she was born the nurse thought she could hear a mumor so we were asked to stay another day. The next day a ECG was done on Jasmine and we were told that was all fine and we could go. At Jasmines 6 week check my doctor noticed the heart mumor and said he would like us to have an outpatience appt at the hospital to get it checked. Still I was not concerned as she looked so well. At the hospital when Jasmine was 4mths we were told that she did have a mumor and for us to come back in a week for a scan. So we went back and that was when the bomb shell hit us. After following the doctor to the ECHO room and to the ECG room and back again he told us that very scary sentence she will need open heart surgery because..... . Jasmines first open heart surgery was at 6 mths, she was still a healthy looking baby so found it hard to accept that she was ill. We arrived at the hospital and were then turned away due to her operation being cancelled. We went back a week later and she had her first surgery the next day, the surgeon managed to do all he could but did not seem happy. We went in to see her and after floods of tears felt joy that she was doing well, we then went to get something to eat. But when we returned it was a different story as we were stopped at the door of the intensive care, Jasmines heart rate had gone up to 280 and the drs were trying to stabilise her. The wonderfull drs and nurses in the intensive care managed to keep my baby girl here that night they said it was a struggle and that she would need more surgery the next day but they got her through the night. The next morning Jasmine was taken back to theatre as a stitch in her heart had opened thus causing the eratic heart rate. She managed to get through this and after going on kidney dyalisis, having fluid build up in the lung caverty and a brain scan Jasmine was back up on the ward after spending almost 2 weeks in intensive care. She was sent home with a cocktail of drugs then after a month she rapidly started to loose weight and turn Yellow. She was taken back to hospital and we were told she had heamolitic anemia, this was due to the leak in her mitral valve because the blood was jetting through at such a pressure it was breaking up the red blood cells. So Jasmine was put on folic acid and iron. After more months of no weight gain we were finally told last april that Jasmines mitral valve leak was so server that she would need the surgery soon. Jasmines third operation was in May last year and her Mitral valve was replaced with a 19mm st Jude valve. She now only takes warfarin and we check her INR at home using a coaguchek machine. We have been in and out of hospital a few times due to low or high INR. And she still hasnt got a regular warfarin dose. So Im hoping I might be able to find some tips on here and meet some lovely people who are in the same situation as my self or as Jasmine.
