Yesterday Jake and I spent the day at doctor appointments at UVA for the little ones.
First up, a regular ob/gyn appointment for me. I'm healthy, happy, blood pressure is great, my stomach is HUGE. I was measuring at 40-41 weeks along (So if this was a singleton, I'd be DONE.) All we're waiting on is the results from my 3 hour GD test, but I can get those on my thursday appointment in Big City.
Then on to the fetal echocardiogram. It was amazing to see how much bigger their hearts have gotten in a month. There's been no changes, Chucky-Sue's heart is fine, Angelina's heart has an unlabeled single ventricle heart defect. Because of her uncooperative position they couldn't get a good view of the arteries and where they lead off to. The doctors are just trying to find out as much as possible before the birth, preparation is key to plan the surgeries- no one wants a surprise during surgery. The cardiologist is very happy that Angelina's heart is reactive, it rose when they got her mad with the ultrasound wand, and lowered when she fell asleep. It looks like it's a bad situation, but the best conditions this bad situation could have. (if that makes any sense?)
Last was our very long ultrasound. (Basically everyone in UVA saw me on a table with my shirt up and belly covered in sonic gel.) Chucky-Sue is a little chub-a-lub, she's measuring 5lb 1oz, with major chipmunk cheeks. Angelina is about the same length, but much skinner, she's at 3lb 9oz. She likes to keep her feet and hands by her face, so we didn't get a great look there. the tech and the doctor both commented on how much hair both babies have- I'm glad they got my hair genes ;) again, Angelina's scrunched up position made it difficult to see all the organs, they saw adrenal glands, but no clear cut picture of kidneys or bladder, but still there has to be SOMETHING, as Evelyn still has fluid around her. My Big City doctors are will be starting the non-stress tests after my appointments now, to make sure the low fluid around Angelina isn't affecting her too much.
So all in all, no new news is very good news. I have another appointment with them in a month, to hammer out details of the leg/bladder/kidney surgery(ies?) and the actual birth. (as it's looking to little Miss Diva Chucky-Sue is perfectly happy hanging out in a breech or transverse positions, she's pushed Angelina into a tiny scrunched ball under my right ribs)
It was great to see how big they are, and marvel at how much they move, jiggle and jump in there. They are a wonderful, miraculous blessing and we cannot wait to see them :)
Showing posts with label Sirenomelia. Show all posts
Showing posts with label Sirenomelia. Show all posts
12.20.2009
Baby B update
We had our first of many echocardiograms and ultrasounds on friday. (Thank you again Grandma!) here's the info:
Baby B's heart has a very complicated heart defect, but thankfully is still pumping away at a healthy rate. Basically, her two lower pumping chambers are actually just one giant leaky chamber, plus a very small underdeveloped chamber. There are few other problems, but without hand gestures and diagrams, I haven't found a way to explain them. It's a scary and serious problem- but fixable through a series of surgeries.
Her legs however pose a much harder problem. She does indeed have the Mermaid Syndrome, Sirenomelia. The legs themselves aren't the problem, but this syndrome causes the lower organs (intestines, kidneys, bladder etc. etc.) to be underdeveloped or absent. At friday's ultrasound it was hard to see what Baby B's kidney situation is because of her position. They thought they saw a somewhat working kidney, but couldn't be positive. Doctor is holding out a bit of hope because there was some fluid around the baby (kidneys are what makes the amniotic fluid after 20some-odd weeks).
Now I get to meet the neonatal team at the University of Virginia to plan Baby B's possible surgeries and go over every possible situation that could arise. Right now Jake and I are planning to give this little baby every fighting chance that technology offers to help her fight through these complications. Her job right now is to just keep that heart beating long enough to make her debut with her sister.
I have definitely felt the prayers, thoughts and support from my family and friends and I want to thank you all for everything you do. Your kind words mean the world to us right now. I tried to bear my testimony at church today, mostly I cried, sniffled, scolded Jake rom the pulpit and blubbered. I'm hoping the spirit has a good Tracy to English dictionary for the congregration!
Baby B's heart has a very complicated heart defect, but thankfully is still pumping away at a healthy rate. Basically, her two lower pumping chambers are actually just one giant leaky chamber, plus a very small underdeveloped chamber. There are few other problems, but without hand gestures and diagrams, I haven't found a way to explain them. It's a scary and serious problem- but fixable through a series of surgeries.
Her legs however pose a much harder problem. She does indeed have the Mermaid Syndrome, Sirenomelia. The legs themselves aren't the problem, but this syndrome causes the lower organs (intestines, kidneys, bladder etc. etc.) to be underdeveloped or absent. At friday's ultrasound it was hard to see what Baby B's kidney situation is because of her position. They thought they saw a somewhat working kidney, but couldn't be positive. Doctor is holding out a bit of hope because there was some fluid around the baby (kidneys are what makes the amniotic fluid after 20some-odd weeks).
Now I get to meet the neonatal team at the University of Virginia to plan Baby B's possible surgeries and go over every possible situation that could arise. Right now Jake and I are planning to give this little baby every fighting chance that technology offers to help her fight through these complications. Her job right now is to just keep that heart beating long enough to make her debut with her sister.
I have definitely felt the prayers, thoughts and support from my family and friends and I want to thank you all for everything you do. Your kind words mean the world to us right now. I tried to bear my testimony at church today, mostly I cried, sniffled, scolded Jake rom the pulpit and blubbered. I'm hoping the spirit has a good Tracy to English dictionary for the congregration!
12.13.2009
Lately...
There's been some recent events that have had my mind swimming with questions. After getting some troubling news, my mind went somewhere I would have never guessed- to a young women's sunday lesson. I remember vaguely learning about talents. Our presidency had gotten our parents to write down what they believed their child's talents were. I remember wishing I had a more "outward" talent like my friends. Some were amazing at sports, or very musically gifted. Others were very intellegent or creative. I remember one of the talents my parents wrote down for me was Peace Maker, that in social situations (specially school) I didn't continue fights and I'd tried to be inclusive with everyone. This is a talent I'm proud to have and I treasure it, but at 15 it's not as cool as being able to shoot 100% at the three point line or sight-read terribly hard music.
My mind also went to 3rd grade, my favorite elementary school year. I had an amazing teacher Mrs. Gray and some great close friends. I also remembered one boy. His name was Cory and he had some sort of physical and mental disability. (At 8 years old it didn't matter much what it exactly was) He was a perfect sweetheart and I remember trying hard to include him in everything. Not out of social guilt which I think some adults are prone to, not because I was asked to befriend him, but because I liked him. He was funny, kind and I wanted to be his friend.
I was kind of surprised at these thoughts, at the surface they have very little to do with the news I recieved. They were distant memories, long buried by time and hadn't changed my life in any significant way I could see. But after mulling them over, and lots lots lots lots and looots of praying, I am beginning to see a string through all three events.
We found out at the most recent ultrasound on friday that Baby B most likely has a serious heart defect and possibly an extremely rare birth defect called Sirenomelia or "Mermaid Syndrome". His/Her legs do not move independantly of each other and are most likely fused together. It affects 1 in about 100,000 births, and even more so in twins. The extent of either medical problem is currently unknown because of the low quality ultrasound at my previous doctor's appointment. On Friday I switched up to a OB practice in Big City that is directly across the street from the hospital. I'll soon be seeing a pediatric cardiologist for a fetal echocardiogram as well as high-risk ultrasound specialists. Hopefully within the next week or two we'll have more information on the exact diagonsis for both the heart and legs. Thankfully both babies are growing at the right rate, have good weights and everything else looks like it should. (I'll be sure to keep this blog updated for faraway friends and family.)
After the inital freaking out, crying, distraught, and overwhelmed feelings, my mind when to those two memories. At that time it actually annoyed me that my mind could think of anything else but the poor child, but now I think I understand. Heavenly Father was reminding me that he had prepared me for this long ago, in very small and simple ways. He gave me a loving and accepting heart, He sent me to a strong family, most of whom in their own ways have dealt with children with a wide variety of problems, He has given me their experience and advice. He's given Baby B a strong, loving, and protective sister (Baby A). He has everything planned out for us and thanks to these seemingly random memories, I believe I've seen a glimpse of it.
My mind also went to 3rd grade, my favorite elementary school year. I had an amazing teacher Mrs. Gray and some great close friends. I also remembered one boy. His name was Cory and he had some sort of physical and mental disability. (At 8 years old it didn't matter much what it exactly was) He was a perfect sweetheart and I remember trying hard to include him in everything. Not out of social guilt which I think some adults are prone to, not because I was asked to befriend him, but because I liked him. He was funny, kind and I wanted to be his friend.
I was kind of surprised at these thoughts, at the surface they have very little to do with the news I recieved. They were distant memories, long buried by time and hadn't changed my life in any significant way I could see. But after mulling them over, and lots lots lots lots and looots of praying, I am beginning to see a string through all three events.
We found out at the most recent ultrasound on friday that Baby B most likely has a serious heart defect and possibly an extremely rare birth defect called Sirenomelia or "Mermaid Syndrome". His/Her legs do not move independantly of each other and are most likely fused together. It affects 1 in about 100,000 births, and even more so in twins. The extent of either medical problem is currently unknown because of the low quality ultrasound at my previous doctor's appointment. On Friday I switched up to a OB practice in Big City that is directly across the street from the hospital. I'll soon be seeing a pediatric cardiologist for a fetal echocardiogram as well as high-risk ultrasound specialists. Hopefully within the next week or two we'll have more information on the exact diagonsis for both the heart and legs. Thankfully both babies are growing at the right rate, have good weights and everything else looks like it should. (I'll be sure to keep this blog updated for faraway friends and family.)
After the inital freaking out, crying, distraught, and overwhelmed feelings, my mind when to those two memories. At that time it actually annoyed me that my mind could think of anything else but the poor child, but now I think I understand. Heavenly Father was reminding me that he had prepared me for this long ago, in very small and simple ways. He gave me a loving and accepting heart, He sent me to a strong family, most of whom in their own ways have dealt with children with a wide variety of problems, He has given me their experience and advice. He's given Baby B a strong, loving, and protective sister (Baby A). He has everything planned out for us and thanks to these seemingly random memories, I believe I've seen a glimpse of it.
