Although congenital heart defects are the #1 birth defect worldwide and the leading cause of infant deaths in the US, CHD research is grossly underfunded despite its prevalence. The best way to ensure that money you give will be going specifically to CHD research and supporting families is to donate to organizations that are entirely devoted to fighting CHDs. The Children's Heart Foundation, Mended Little Hearts, Adult Congenital Heart Association, Sisters By Heart, cardiac units at local children's hospitals, etc. are excellent organizations that support the CHD community and exclusively fund research related to congenital heart defects. Research is so important because it is the only way that improvements will continue to be made for children and adults affected by a congenital heart defect.
This is Jackson. He is almost 3 years old and he was born with Hypoplastic Left Heart Syndrome (HLHS). His heart defect was detected 2 days after birth after becoming very sick and almost losing his life. His first surgery, the Norwood, was performed at 7 days old. The second surgery, the Glenn, was performed at 4 months old. The third stage of the scheduled surgeries, the Fontan, will be performed this summer at 3 years old. Jackson is a true blessing and I cannot imagine life without him. Honestly I don't remember life before him. Being my first child, I was extremely excited to bring him into the world. I would have never imagined that this would happen. Before I could even get used to the fact of being a mother, it was almost taken away from me. I'm thankful to God that he chose me to be Jackson's mother. He is a joy to be around and the sweetest baby boy. There are no words for the love I have for him.
It all started with our 20 week ultrasound; that is the day we learned that our little boy had a heart defect. We were told that he had a condition known as Hypoplastic Left Heart Syndrome (HLHS). We had no family history of congenital heart defects.
Jeremiah James Burford was born April 8th 2015. The first time I looked at his sweet face it was through the clear walls of an isolate transporter. He looked great and at 8 lbs and 10 oz, super chunky. That extra birth weight would help him for his first surgery at just 6 days old. The Norwood went well. Jeremiah did have setbacks during his recovery at Children's. His lungs collapsed 3 different times and he struggled with feedings. We were discharged 6 weeks after surgery. Once we were home we had several set backs with feeding that put us in the CVICU just 6 days later. We worked on feedings and were re-released almost 3 weeks later. Feeding and rates and pumps and bags and the Nutritionist...my head spins thinking about just how crazy it all made me. Somehow in the middle of all the feeding issues he was still climbing up the growth chart.
By July he was 3 and 1/2 months old and we were heading in for a heart cath. While in for that procedure we were told that Jeremiah would have his Glenn open heart surgery in a week. My husband and I were in shock. Jeremiah needed it and so we pushed forward. The recovery for the Glenn was just as scary. We discovered that Jeremiah had a condition called broncomalacia, which explained his multiple lung collapses with the Norwood and also with the Glenn. We finally came home for good 5 weeks later.
We were told at his last appointment that he looked great. We anticipate the final open heart surgery to be around 3 years of age. We may have it sooner than that. What I have learned while going through this is that there are no textbook answers. Each child is different, and Jeremiah loves to surprise us. We still have issues with food. He is just now finishing jars of baby food, but I will take it! My 10 month old boy is my hero. he is beautiful and funny and a complete miracle. People ask me if this has changed me. How can you not be a totally different person after this? I am changed forever. Loving a heart baby is a powerful, life-changing kind of love.
Heart Hero Jackson
This is Jackson. He is almost 3 years old and he was born with Hypoplastic Left Heart Syndrome (HLHS). His heart defect was detected 2 days after birth after becoming very sick and almost losing his life. His first surgery, the Norwood, was performed at 7 days old. The second surgery, the Glenn, was performed at 4 months old. The third stage of the scheduled surgeries, the Fontan, will be performed this summer at 3 years old. Jackson is a true blessing and I cannot imagine life without him. Honestly I don't remember life before him. Being my first child, I was extremely excited to bring him into the world. I would have never imagined that this would happen. Before I could even get used to the fact of being a mother, it was almost taken away from me. I'm thankful to God that he chose me to be Jackson's mother. He is a joy to be around and the sweetest baby boy. There are no words for the love I have for him.
Heart Hero Jeremiah
It all started with our 20 week ultrasound; that is the day we learned that our little boy had a heart defect. We were told that he had a condition known as Hypoplastic Left Heart Syndrome (HLHS). We had no family history of congenital heart defects.
Jeremiah James Burford was born April 8th 2015. The first time I looked at his sweet face it was through the clear walls of an isolate transporter. He looked great and at 8 lbs and 10 oz, super chunky. That extra birth weight would help him for his first surgery at just 6 days old. The Norwood went well. Jeremiah did have setbacks during his recovery at Children's. His lungs collapsed 3 different times and he struggled with feedings. We were discharged 6 weeks after surgery. Once we were home we had several set backs with feeding that put us in the CVICU just 6 days later. We worked on feedings and were re-released almost 3 weeks later. Feeding and rates and pumps and bags and the Nutritionist...my head spins thinking about just how crazy it all made me. Somehow in the middle of all the feeding issues he was still climbing up the growth chart.
By July he was 3 and 1/2 months old and we were heading in for a heart cath. While in for that procedure we were told that Jeremiah would have his Glenn open heart surgery in a week. My husband and I were in shock. Jeremiah needed it and so we pushed forward. The recovery for the Glenn was just as scary. We discovered that Jeremiah had a condition called broncomalacia, which explained his multiple lung collapses with the Norwood and also with the Glenn. We finally came home for good 5 weeks later.
We were told at his last appointment that he looked great. We anticipate the final open heart surgery to be around 3 years of age. We may have it sooner than that. What I have learned while going through this is that there are no textbook answers. Each child is different, and Jeremiah loves to surprise us. We still have issues with food. He is just now finishing jars of baby food, but I will take it! My 10 month old boy is my hero. he is beautiful and funny and a complete miracle. People ask me if this has changed me. How can you not be a totally different person after this? I am changed forever. Loving a heart baby is a powerful, life-changing kind of love.
No comments:
Post a Comment