Raegan's Heart
On Monday Raegan visited her pediatric cardiologist at Children's Hospital in Peoria to ensure the surgery performed to patch Raegan's VSD in China was successful.
I was a little bit nervous about it even though you can plainly tell she is the specimen of health. I would look back at Raegan in her carseat. She'd just grin real big as if to say, "relax, Mom, everything is going to be OK."
We arrived around 9:45 and began with filling out the normal paperwork that isn't so normal for us since we know no family medical history for the girls.
After the normal height, weight (she now weighs 29 pounds), BP, pulse, O2 and other vitals, it was on to get the first EKG. She was a little nervous as the tech hooked up all the wires. But, she laid very still and we were able to get a good reading very quickly. We then began the long wait for Dr. Schneider.
Dr. Schneider is fantastic!! He immediately set out to make Raegan comfortable. After going through all the tests and then waiting she was a little edgy, but it didn't take her long to warm up to him. He went over her vitals and assured us that right now her heart "feels really good." He felt like he had heard a little bit of turbulence in her heart. He commented that her chest x-ray we had taken with us had indicated a small piece of tissue at the bottom of her VSD patch. He felt like that could be causing it and we needed to watch that as that type of membrane has a tendency to grow.
He asked about her Turner's and whether we had confirmed that. We stated we had...and that we realized her VSD was probably a result of her syndrome. Dr. Schneider then indicated that Raegan's VSD was unusual for Turner's as it was on the right side, and with Turner's the congenital heart disease is predominantly (although not always) on the left side. He then indicated a couple of other heart defects that are common with Turner's. Dr. Schneider took the time to answer my MANY questions and then he commented, "I know you've been here quite a while this morning, but I'd really like to do an echocardiagram on Raegan's heart just to see if there is anything as a result of her syndrome we need to monitor. Oh boy...here comes the next surprise. By this time is was almost 11:30, but we wanted to know everything before we left there so we agreed.
Off to another room we went. Poor Raegan. As we laid her down on the table you could see the fear on her face. She looked up at me and put her fingers near her mouth as if to ask "is it OK if I do this even though I'm not taking a nap?" When I shook my head yes her fingers immediately went in her mouth and her other hand grabbed my hand. She turned her head so she didn't have to look at the people or the machinery in the room. She laid that way for almost 20 minutes without shedding a tear.
The echocardiagram confirmed Dr. Schneider's suspicions. Raegan has a bicuspid aortic valve (meaning there are two flaps as opposed to three) and she has a mild coarctation of the aorta (meaning the aorta begins to narrow in size as it leaves the heart). He also confirmed that the membrane at the bottom of her patch is causing the turbulence that he heard.
None of these things are causing Raegan any problems whatsoever at this time. And, since we know about them we can now schedule our follow ups to monitor them. We will go back every six months to ensure they do not become problematic. If they begin to impact her Dr. Schneider says, "we'll just fix them." He told us these situations are so mild right now that he wouldn't let anyone near her heart with a surgical knife at this time.
Once again we feel like God has really watched out for Raegan by allowing us to know something very early that could easily have gone undetected until it did cause a problem. He has also given us a great doctor that we totally trust with our daughter's heart health. Raegan obviously has a special place in God's heart (the Bible tells us all orphans do) as he sure is watching over her very closely.
Next: We go to the pediatric endocrinologist on December 20 to determine our action plan for hormone treatments for Raegan's Turner's.
Thank you for your prayers!!! They are working!!!
I was a little bit nervous about it even though you can plainly tell she is the specimen of health. I would look back at Raegan in her carseat. She'd just grin real big as if to say, "relax, Mom, everything is going to be OK."
We arrived around 9:45 and began with filling out the normal paperwork that isn't so normal for us since we know no family medical history for the girls.
After the normal height, weight (she now weighs 29 pounds), BP, pulse, O2 and other vitals, it was on to get the first EKG. She was a little nervous as the tech hooked up all the wires. But, she laid very still and we were able to get a good reading very quickly. We then began the long wait for Dr. Schneider.
Dr. Schneider is fantastic!! He immediately set out to make Raegan comfortable. After going through all the tests and then waiting she was a little edgy, but it didn't take her long to warm up to him. He went over her vitals and assured us that right now her heart "feels really good." He felt like he had heard a little bit of turbulence in her heart. He commented that her chest x-ray we had taken with us had indicated a small piece of tissue at the bottom of her VSD patch. He felt like that could be causing it and we needed to watch that as that type of membrane has a tendency to grow.
He asked about her Turner's and whether we had confirmed that. We stated we had...and that we realized her VSD was probably a result of her syndrome. Dr. Schneider then indicated that Raegan's VSD was unusual for Turner's as it was on the right side, and with Turner's the congenital heart disease is predominantly (although not always) on the left side. He then indicated a couple of other heart defects that are common with Turner's. Dr. Schneider took the time to answer my MANY questions and then he commented, "I know you've been here quite a while this morning, but I'd really like to do an echocardiagram on Raegan's heart just to see if there is anything as a result of her syndrome we need to monitor. Oh boy...here comes the next surprise. By this time is was almost 11:30, but we wanted to know everything before we left there so we agreed.
Off to another room we went. Poor Raegan. As we laid her down on the table you could see the fear on her face. She looked up at me and put her fingers near her mouth as if to ask "is it OK if I do this even though I'm not taking a nap?" When I shook my head yes her fingers immediately went in her mouth and her other hand grabbed my hand. She turned her head so she didn't have to look at the people or the machinery in the room. She laid that way for almost 20 minutes without shedding a tear.
The echocardiagram confirmed Dr. Schneider's suspicions. Raegan has a bicuspid aortic valve (meaning there are two flaps as opposed to three) and she has a mild coarctation of the aorta (meaning the aorta begins to narrow in size as it leaves the heart). He also confirmed that the membrane at the bottom of her patch is causing the turbulence that he heard.
None of these things are causing Raegan any problems whatsoever at this time. And, since we know about them we can now schedule our follow ups to monitor them. We will go back every six months to ensure they do not become problematic. If they begin to impact her Dr. Schneider says, "we'll just fix them." He told us these situations are so mild right now that he wouldn't let anyone near her heart with a surgical knife at this time.
Once again we feel like God has really watched out for Raegan by allowing us to know something very early that could easily have gone undetected until it did cause a problem. He has also given us a great doctor that we totally trust with our daughter's heart health. Raegan obviously has a special place in God's heart (the Bible tells us all orphans do) as he sure is watching over her very closely.
Next: We go to the pediatric endocrinologist on December 20 to determine our action plan for hormone treatments for Raegan's Turner's.
Thank you for your prayers!!! They are working!!!
posted by Tina Biggs at
12:33 PM
1 Comments:
Raegan is so very lucky to have landed in you and CC's laps and hearts! Thanks for keeping us all informed of the progress you are making. Love you all!
From Connie B.
Post a Comment
Subscribe to Post Comments [Atom]
<< Home