Beautiful Aorta Arch
"Beautiful Aorta Arch" is something we hear all the time now. Every ultrasound/echo Jackson gets they say that. Hopefully, it's not like the dentist when they say "you have beautiful teeth" when in fact you know you don't...
Unfortunately, the arch was not the only thing that was repaired. They also closed 2 holes in his heart. Jackson being such a strong and growing boy, healed "too much" causing excess scaring in his right pulmonary artery. We first learned of this after his 6 week post operation ultrasound. Dr. McCanta (Jackson's cardiologist after surgery in Colorado) said he couldn't be more pleased about his arch repair and it that Dr. Jagger's did a beautiful job. He was however, concerned about narrowing in his pulmonary artery. Narrowing that they didn't really know he was born with or not. At the time, he seemed pretty concerned about it, especially because we were leaving in a couple of weeks to move to Kentucky and that would mean getting a new doctor that didn't know his case as well. He did research and suggested that we take our boy to Cincinnati for his doctor's visits because their Children's hospital was one of the best in the country. We informed him that we would really like to stay in state because of insurance reasons, but would travel if we needed to. Of course we wanted what's best for our boy.
After further research, he found Dr. Schnieder. He knew him somehow (I don't remember how anymore) but was really excited he found him AND he had just moved to Lexington to practice. Little did we know, Dr. Schnieder being our cardiologist was meant to be. While this was going on, Scott was e-mailing the MD/PhD program coordinator in Kentucky keeping her up to date with the situation and our concern of finding the best cardiologist for our son. Coincidentally, the program director happens to be a pretty awesome cardiologist and got us the hook up. She talked with the Director of the Congenital Heart program who was moving to Lexington soon and she agreed to follow Jackson (with no regard as to what insurance we had). So we were stuck in between. Do we choose the doctor our cardiologist in colorado chose or the one that agreed to follow us? Luckily, we didn't have to make that decision because it was the same person! Oh the Lord knows what he is doing!
Anyway. We moved to Kentucky and met with Dr. Schnieder (WHOM WE LOVE). Jackson received his first echo in Kentucky and Dr. Schnieder was pleased with how everything looks "Beautiful Aortic arch" he said. He also thought his right pulmonary artery stenosis wasn't as bad as Dr. McCanta had said. We also found out that it was over scarring of one of his heart repairs causing the narrowing.
We decided to do echocardiograms every couple of weeks to see how it grew and if it would get any bigger. If not, we would have to do a balloon catheter procedure, something he specializes in. After a couple of weeks and echos later, we realized it had not grown. He still wasn't concerned with it and said some kids don't need anything until they are 1 year old. However, Jackson was having a big surgery on his head at the end of October and figured we might as well do it now so we can be less concerned about his heart during the head surgery. We went ahead and scheduled this balloon catheter procedure for the beginning on October.
Balloon Catheterization, with or without stenting
The procedure is an outpatient procedure but was still scary. Usually it is old fat people who have had too many cheeseburgers getting his procedure done. Also, they are usually awake at the time. Being a baby, they had to put him under anesthesia. Always scary. Also, they were filling up a balloon and cutting off blood flow. Double scary. Luckily, things went well and Dr. Schnieder was pleased with the procedure but we wouldn't know until a follow up echo. Jackson was so sad after surgery. 1. He couldn't have fluids for 6 hours before surgery. Hungry boy. 2. Coming out of anesthesia. Never fun. 3. Being intubated, it messed with his already injured vocal chord, so he had the saddest hoarse cry. Luckily, he let me hold him while I watched movies for a couple of hours.
It sounds horrible to say, but after living in a hospital for a week, seeing your baby hooked up to all sorts of stuff, hearing different doctors say "you're baby will need this surgery/procedure" I (Lesley) have gotten used to it. You would think it would be one of those things that you couldn't get used to. But I think every time I hear or have to deal with those things, I am getting major confirmation that everything will be fine at the same time and I don't need to be scared.
Taking him to the hospital for those surgeries/procedures is hard but Jackson makes it easy. He is SUCH a flirt with the ladies and is such a good baby. Everyone loves babies, especially ones that are having to have something done to them. He and we always get special attention. He is so happy, smiley and CUTE! We are pretty lucky. Thankfully, during the heart surgery and this catheter procedure we got updates almost every hour "Just got him hooked up to IV", "Still during the procedure but he is doing GREAT" , or my favorite "all finished and he is doing great!".
Follow-up echo showed that the procedure increased the diameter of his artery some, but not enough that he is in the clear. He will now (probably around age 2) need a stent put in his heart. He will also need a bigger one every couple of years after that as his heart grows. Dr. Schnieder isn't concerned at all because he has good blood flow to his heart and lungs and there isn't a concerning amount of pressure either. Thank goodness! So for now, our journey with Cardiology is just follow up echo's and visits. That's one specialist I can cross off the list of doctors appointments to go to for now!
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| almost 8 months old.. Happy Valentine's Day! |
Unfortunately, the arch was not the only thing that was repaired. They also closed 2 holes in his heart. Jackson being such a strong and growing boy, healed "too much" causing excess scaring in his right pulmonary artery. We first learned of this after his 6 week post operation ultrasound. Dr. McCanta (Jackson's cardiologist after surgery in Colorado) said he couldn't be more pleased about his arch repair and it that Dr. Jagger's did a beautiful job. He was however, concerned about narrowing in his pulmonary artery. Narrowing that they didn't really know he was born with or not. At the time, he seemed pretty concerned about it, especially because we were leaving in a couple of weeks to move to Kentucky and that would mean getting a new doctor that didn't know his case as well. He did research and suggested that we take our boy to Cincinnati for his doctor's visits because their Children's hospital was one of the best in the country. We informed him that we would really like to stay in state because of insurance reasons, but would travel if we needed to. Of course we wanted what's best for our boy.
After further research, he found Dr. Schnieder. He knew him somehow (I don't remember how anymore) but was really excited he found him AND he had just moved to Lexington to practice. Little did we know, Dr. Schnieder being our cardiologist was meant to be. While this was going on, Scott was e-mailing the MD/PhD program coordinator in Kentucky keeping her up to date with the situation and our concern of finding the best cardiologist for our son. Coincidentally, the program director happens to be a pretty awesome cardiologist and got us the hook up. She talked with the Director of the Congenital Heart program who was moving to Lexington soon and she agreed to follow Jackson (with no regard as to what insurance we had). So we were stuck in between. Do we choose the doctor our cardiologist in colorado chose or the one that agreed to follow us? Luckily, we didn't have to make that decision because it was the same person! Oh the Lord knows what he is doing!
Anyway. We moved to Kentucky and met with Dr. Schnieder (WHOM WE LOVE). Jackson received his first echo in Kentucky and Dr. Schnieder was pleased with how everything looks "Beautiful Aortic arch" he said. He also thought his right pulmonary artery stenosis wasn't as bad as Dr. McCanta had said. We also found out that it was over scarring of one of his heart repairs causing the narrowing.
We decided to do echocardiograms every couple of weeks to see how it grew and if it would get any bigger. If not, we would have to do a balloon catheter procedure, something he specializes in. After a couple of weeks and echos later, we realized it had not grown. He still wasn't concerned with it and said some kids don't need anything until they are 1 year old. However, Jackson was having a big surgery on his head at the end of October and figured we might as well do it now so we can be less concerned about his heart during the head surgery. We went ahead and scheduled this balloon catheter procedure for the beginning on October.
Balloon Catheterization, with or without stenting
This procedure is used to open a narrowed artery in or near your heart. The catheter will likely be inserted in the artery in your groin for this procedure. A long, flexible catheter will be threaded through your arteries to the narrowed artery. Then, a smaller balloon catheter will be led through the flexible catheter and inflated at the narrowed area to open it. In many cases, your doctor will also place a mesh coil called a stent at the narrowed portion to help keep the artery open.
The procedure is an outpatient procedure but was still scary. Usually it is old fat people who have had too many cheeseburgers getting his procedure done. Also, they are usually awake at the time. Being a baby, they had to put him under anesthesia. Always scary. Also, they were filling up a balloon and cutting off blood flow. Double scary. Luckily, things went well and Dr. Schnieder was pleased with the procedure but we wouldn't know until a follow up echo. Jackson was so sad after surgery. 1. He couldn't have fluids for 6 hours before surgery. Hungry boy. 2. Coming out of anesthesia. Never fun. 3. Being intubated, it messed with his already injured vocal chord, so he had the saddest hoarse cry. Luckily, he let me hold him while I watched movies for a couple of hours.
It sounds horrible to say, but after living in a hospital for a week, seeing your baby hooked up to all sorts of stuff, hearing different doctors say "you're baby will need this surgery/procedure" I (Lesley) have gotten used to it. You would think it would be one of those things that you couldn't get used to. But I think every time I hear or have to deal with those things, I am getting major confirmation that everything will be fine at the same time and I don't need to be scared.
Taking him to the hospital for those surgeries/procedures is hard but Jackson makes it easy. He is SUCH a flirt with the ladies and is such a good baby. Everyone loves babies, especially ones that are having to have something done to them. He and we always get special attention. He is so happy, smiley and CUTE! We are pretty lucky. Thankfully, during the heart surgery and this catheter procedure we got updates almost every hour "Just got him hooked up to IV", "Still during the procedure but he is doing GREAT" , or my favorite "all finished and he is doing great!".
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| Always a happy baby during doctor visits. Even if we had been there all day for multiple! |
Follow-up echo showed that the procedure increased the diameter of his artery some, but not enough that he is in the clear. He will now (probably around age 2) need a stent put in his heart. He will also need a bigger one every couple of years after that as his heart grows. Dr. Schnieder isn't concerned at all because he has good blood flow to his heart and lungs and there isn't a concerning amount of pressure either. Thank goodness! So for now, our journey with Cardiology is just follow up echo's and visits. That's one specialist I can cross off the list of doctors appointments to go to for now!
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| Jackson does so well during Echo's. He just sits back and watches the screen! |
Lesley you are so strong! And this little boy has an incredible family to grow up into. I admire everything you have gone through so much, because just being a new mom, let alone dealing with serious health concerns can be difficult. I totally agree that Heavenly Father is watching over you guys and he has a perfect plan for sweet little Jackson. You are amazing! Thank you for sharing. xo
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