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Steve, my husband, and I had planned to have our 2nd daughter Sydney, and we were so excited about hearing all the good news at the 21 week ultrasound. We wanted to find out the sex of the baby. Our hearts were filled with grief, when we heard our little baby was going to need to have at least 3 surgeries. Sydney was diagnosed with a life threatening condition called tricuspid valve atresia - meaning her tricuspid valve did not form. Since the tricuspid valve did not develop, her right ventricle did not grow. This means she only has 3 chambers to her heart, instead of four chambers.
Sydney was born at UVA, December 4th, 2006. Her first surgery was at 1 week of age. The recovery was a roller coaster ride. Sydney developed seizures 1-2 days post-op. Her O2 sats, heart rates, and blood pressures were all over the place. She had so many tubes and lines in her, that the nurses had run out of places to put them. The doctors and nurses worked diligently adjusted her medication to stabilize her. Sydney continued her fight, and we continued to pray. Our prayers were answered just 3 weeks later just in time for Christmas. Having the whole family at home was the best present ever.
We continued to have issues at home…problems with breastfeeding, pumping, needing to fortify the breast milk, and trouble getting Sydney to gain weight. She also ended up with "breast milk colitis" which caused her BM's to have blood in them. I had to take all diary, wheat, corn, eggs, nuts, and soy out of my diet to finally get her GI tract to calm down. It took all day, every day, to feed Sydney the required amount of ounces she needed to be good for her heart. We ended needing put Sydney on a special hypoallergenic formula to keep her from bleeding.
At 4 months of age, Sydney had to go back for her 2nd surgery. This was the most difficult thing we have ever had to do. Just remembering going through surgery before made us sick with grief. Thanks all the Angels above, the 2nd surgery was a breeze compared to the first surgery. Things really improved for Sydney after this surgery. Sydney actually cried! She would cry for food! She wanted to eat without a fight! This was fantastic! The doctors encouraged me to enjoy my time with her. Sydney would be doing more of the "normal" stuff. Steve and I are so blessed to have her.
Over time, we were able to get her to gain weight, get the extra fluid off of her liver and spleen and get her off of all her meds (including seizure meds). She will remain on the 1/2 aspirin a day, and need vaccinations to keep her from getting RSV. Also, she will be starting physical therapy soon. This will to help her get stronger...catch up. Sydney despite her medical problems amazes me. She always finds a smile no matter what is going on. "Syd Syd" is teaching me a lot about patience, not to worry so much about the small stuff, to trust my instincts, and so many other things. She has such strength!
Sydney will have her 3rd surgery in the summer of 2009, as long as everything continues to progress as planned. At some point Sydney may need a pacemaker, but we will cross the bridge when we get there. Sydney will never be "fixed", because technology cannot make a new chamber. Maybe one day they will be.
If I was to ever give advice to anyone with a congenital heart defect it would be 5 things: (1) don't be afraid to ask for help,(2) lean on people when they offer, (3)be your child's advocate, (4)always trusts yourself, (5)and know you are never alone. I leaned a lot on the MLH support group, my friends and family. They helped me, and I try to return the favor when I can.
Steve and I never gave up on Sydney. We prayed a lot, and are so lucky to have friends, family, and a wonderful community that really helped us pull though this. We could not have done this alone.
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Sydney Kesler
Steve, my husband, and I had planned to have our 2nd daughter Sydney, and we were so excited about hearing all the good news at the 21 week ultrasound. We wanted to find out the sex of the baby. Our hearts were filled with grief, when we heard our little baby was going to need to have at least 3 surgeries. Sydney was diagnosed with a life threatening condition called tricuspid valve atresia - meaning her tricuspid valve did not form. Since the tricuspid valve did not develop, her right ventricle did not grow. This means she only has 3 chambers to her heart, instead of four chambers.
Sydney was born at UVA, December 4th, 2006. Her first surgery was at 1 week of age. The recovery was a roller coaster ride. Sydney developed seizures 1-2 days post-op. Her O2 sats, heart rates, and blood pressures were all over the place. She had so many tubes and lines in her, that the nurses had run out of places to put them. The doctors and nurses worked diligently adjusted her medication to stabilize her. Sydney continued her fight, and we continued to pray. Our prayers were answered just 3 weeks later just in time for Christmas. Having the whole family at home was the best present ever.
We continued to have issues at home…problems with breastfeeding, pumping, needing to fortify the breast milk, and trouble getting Sydney to gain weight. She also ended up with "breast milk colitis" which caused her BM's to have blood in them. I had to take all diary, wheat, corn, eggs, nuts, and soy out of my diet to finally get her GI tract to calm down. It took all day, every day, to feed Sydney the required amount of ounces she needed to be good for her heart. We ended needing put Sydney on a special hypoallergenic formula to keep her from bleeding.
At 4 months of age, Sydney had to go back for her 2nd surgery. This was the most difficult thing we have ever had to do. Just remembering going through surgery before made us sick with grief. Thanks all the Angels above, the 2nd surgery was a breeze compared to the first surgery. Things really improved for Sydney after this surgery. Sydney actually cried! She would cry for food! She wanted to eat without a fight! This was fantastic! The doctors encouraged me to enjoy my time with her. Sydney would be doing more of the "normal" stuff. Steve and I are so blessed to have her.
Over time, we were able to get her to gain weight, get the extra fluid off of her liver and spleen and get her off of all her meds (including seizure meds). She will remain on the 1/2 aspirin a day, and need vaccinations to keep her from getting RSV. Also, she will be starting physical therapy soon. This will to help her get stronger...catch up. Sydney despite her medical problems amazes me. She always finds a smile no matter what is going on. "Syd Syd" is teaching me a lot about patience, not to worry so much about the small stuff, to trust my instincts, and so many other things. She has such strength!
Sydney will have her 3rd surgery in the summer of 2009, as long as everything continues to progress as planned. At some point Sydney may need a pacemaker, but we will cross the bridge when we get there. Sydney will never be "fixed", because technology cannot make a new chamber. Maybe one day they will be.
If I was to ever give advice to anyone with a congenital heart defect it would be 5 things: (1) don't be afraid to ask for help,(2) lean on people when they offer, (3)be your child's advocate, (4)always trusts yourself, (5)and know you are never alone. I leaned a lot on the MLH support group, my friends and family. They helped me, and I try to return the favor when I can.
Steve and I never gave up on Sydney. We prayed a lot, and are so lucky to have friends, family, and a wonderful community that really helped us pull though this. We could not have done this alone.
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