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Jordan
The greatest chapter of our lives began on August 27, 2000 with the birth of our first child, a son named Jordan. We had survived 9 months of a healthy and uneventful pregnancy and delivery. Jordan was a happy baby who had more than his share of colds and respiratory infections. We noticed in his first months of life that he did not seem to grow very much and he was constantly sweating. At his four month check up, his pediatrician mentioned that she “still” heard a murmur and it was probably time to get it checked out. This was the first we had heard of the murmur but we quickly called the number we were given and set out to wait six weeks for the next available appointment with a pediatric cardiologist. At the end of that appointment, we were in tears and making arrangements to travel the next day to the University of Virginia for what would be Jordan’s first surgery. Jordan was diagnosed, at that time, with Coarctation of the Aorta – a severe narrowing of the aorta. After a few days in intensive care, we were returning home to recover. Although Jordan’s vocal chords were injured during the surgical procedure and he had no voice, his surgery was declared a relative success by all persons involved.
Six months later our journey took an unforeseen turn when during a routine follow up appointment, it was discovered that Jordan had “recoarcted” – we were headed back to UVa. This time doctor’s tried angioplasty to open up his aorta but the doctors had very limited success. Again, six months later, we were back at UVa for a second surgery to repair the aorta. It was also at this time that doctors became more convinced that Jordan had a host of other “heart” issues. A fact we all had to accept. He has what is known as Shone’s Complex – a very rare myriad of heart defects.
We had a relatively uneventful next 18 months as we saw our cardiologist more frequently than extended family. We learned about all kinds of new medications for children, and we learned that we would never sleep peacefully again as we worried about each and every breath he took. In May 2004 we welcomed Jordan’s new brother, Joshua into this world. Six weeks later, we traveled to New Jersey so that Jordan could serve as ring bearer in his uncle’s wedding. Traveling to New Jersey, Jordan complained of being tired, he struggled to get through rehearsal and was too tired to play with all of his cousins. The night before the wedding, Jordan found himself being whisked away to a strange hospital with strange doctors in a strange state, he was in heart failure and we were “stuck” in Jersey. Jordan needed a new mitral valve and he needed it soon. We remained in Jersey for five days, until he was stable enough to travel back to Virginia. After three weeks of hospital stays and one more surgery, we were back home.
Jordan had to contend with weekly blood tests and more medication. Despite all of the medications and surgeries, Jordan still found himself struggling to keep up with his peers – he does not have the stamina to keep up and is always short of breath. In December 2007, we discovered why Jordan struggles more than we anticipated. After undergoing another Catheterization, we were informed that as a result of all of the strain the heart has put on Jordan’s lungs, he now has Pulmonary Hypertension.
Jordan has entered a new chapter of his 8 year old life, he has learned to tolerate, oxygen tanks, more new medications, and more invasive doctor appointments. Despite all, Jordan is a happy, loving and loveable little boy. He is full of personality and has a fantastic sense of humor. As Jordan’s parents, we are incredibly blessed to have Jordan and are eternally grateful for his spirit. We find ourselves concerned that more research has not been completed in the area of pediatric cardiology. So much of what tried with Jordan is a “unknown” or experimental. We have been extremely fortunate with the doctors we have had – they have been nothing short of wonderful but Jordan has a long, difficult road ahead of him and more work is desperately needed in this area – now…
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Jordan
The greatest chapter of our lives began on August 27, 2000 with the birth of our first child, a son named Jordan. We had survived 9 months of a healthy and uneventful pregnancy and delivery. Jordan was a happy baby who had more than his share of colds and respiratory infections. We noticed in his first months of life that he did not seem to grow very much and he was constantly sweating. At his four month check up, his pediatrician mentioned that she “still” heard a murmur and it was probably time to get it checked out. This was the first we had heard of the murmur but we quickly called the number we were given and set out to wait six weeks for the next available appointment with a pediatric cardiologist. At the end of that appointment, we were in tears and making arrangements to travel the next day to the University of Virginia for what would be Jordan’s first surgery. Jordan was diagnosed, at that time, with Coarctation of the Aorta – a severe narrowing of the aorta. After a few days in intensive care, we were returning home to recover. Although Jordan’s vocal chords were injured during the surgical procedure and he had no voice, his surgery was declared a relative success by all persons involved.
Six months later our journey took an unforeseen turn when during a routine follow up appointment, it was discovered that Jordan had “recoarcted” – we were headed back to UVa. This time doctor’s tried angioplasty to open up his aorta but the doctors had very limited success. Again, six months later, we were back at UVa for a second surgery to repair the aorta. It was also at this time that doctors became more convinced that Jordan had a host of other “heart” issues. A fact we all had to accept. He has what is known as Shone’s Complex – a very rare myriad of heart defects.
We had a relatively uneventful next 18 months as we saw our cardiologist more frequently than extended family. We learned about all kinds of new medications for children, and we learned that we would never sleep peacefully again as we worried about each and every breath he took. In May 2004 we welcomed Jordan’s new brother, Joshua into this world. Six weeks later, we traveled to New Jersey so that Jordan could serve as ring bearer in his uncle’s wedding. Traveling to New Jersey, Jordan complained of being tired, he struggled to get through rehearsal and was too tired to play with all of his cousins. The night before the wedding, Jordan found himself being whisked away to a strange hospital with strange doctors in a strange state, he was in heart failure and we were “stuck” in Jersey. Jordan needed a new mitral valve and he needed it soon. We remained in Jersey for five days, until he was stable enough to travel back to Virginia. After three weeks of hospital stays and one more surgery, we were back home.
Jordan had to contend with weekly blood tests and more medication. Despite all of the medications and surgeries, Jordan still found himself struggling to keep up with his peers – he does not have the stamina to keep up and is always short of breath. In December 2007, we discovered why Jordan struggles more than we anticipated. After undergoing another Catheterization, we were informed that as a result of all of the strain the heart has put on Jordan’s lungs, he now has Pulmonary Hypertension.
Jordan has entered a new chapter of his 8 year old life, he has learned to tolerate, oxygen tanks, more new medications, and more invasive doctor appointments. Despite all, Jordan is a happy, loving and loveable little boy. He is full of personality and has a fantastic sense of humor. As Jordan’s parents, we are incredibly blessed to have Jordan and are eternally grateful for his spirit. We find ourselves concerned that more research has not been completed in the area of pediatric cardiology. So much of what tried with Jordan is a “unknown” or experimental. We have been extremely fortunate with the doctors we have had – they have been nothing short of wonderful but Jordan has a long, difficult road ahead of him and more work is desperately needed in this area – now…
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