Yesterday was another big day. I had another ultrasound and another fetal echo. The doctors & nurses at NorthShore Evanston Hospital were very impressive. Although, after being there for 7 hours, I was ready to go home. A huge thanks to Lindsay who came with me and kept me company through it all!
The ultrasound looked good. Dr. Silver (who was written up in Chicago magazine as one of the best Maternal Fetal Medicine Doctors in the area - impressive) was pleased with what he saw. The fluid levels had risen, which made me nervous, but he said they were still within a normal range. Baby A had a fluid level of about 5.5 and Baby B had a fluid level of about 3.5. We will continue to watch this every week. Other than that, he said everything was looking good. We didn't measure their size this week because it is too soon to see growth, so we will be looking at size every other week.
I then had an office visit with Dr. Plunkett. She checked me out and said everything looked good and said that I should go out to dinner periodically... pretty exciting!
Lastly, I met with Dr. Young, a pediatric cardiologist. She did the fetal echo and said that she thought both hearts looked good. Baby A still does have thick walls, but the doctor thinks that with time they will normalize. She didn't see any leakage on either heart and the function & flow looked good for both babies. We also got the Tei index for Baby A. Since we did the echo in Evanston instead of Cincinnati, it is hard to make a true comparison of the numbers. However, we are still very pleased. Baby A's right ventricle (which was at .8 before) now has a Tei index of .32 and her left ventricle (previously .62) is at .26. We don't know a lot about what that means, but do know it was getting too high. So, it seems good that it is lower :)
We also got other results from Cincinnati today. When they took the fluid out of my belly during the surgery through amniocentesis, they were going to analyze the fluid for more information on TTTS and our babies. They had seen a soft marker on Baby A in the initial ultrasound, but this found that she has no chromosomal abnormalities. So, that is just more good news.
So, today is a good day. Thank you to everyone for their thoughts and prayers. And, in more good news today, Cooper George Utynek arrived this morning at 12:03am and is a healthy baby boy ~ congratulations to Amanda & Darrin!!
Have a Happy New Year!
Wednesday, December 30, 2009
Wednesday, December 23, 2009
The Weekly Check Ups Begin
We had an appointment with Dr. MacGregor yesterday at the hospital in Evanston. The ultrasound looked good ~ no major changes since last Thursday. Both girls had strong heartbeats and had fluid in their bladders. Dr. MacGregor was pleased with what he saw since the last time he had seen the babies was when he diagnosed us with TTTS.
Baby A is still significantly bigger than Baby B. Baby A is a full pound (16 oz) and Baby B is only 11 oz. But, both babies have grown which is good news. Dr. MacGregor said that it is too soon to expect Baby B to catch up, but he still thinks she will.
The most exciting news from this appointment is that Dr. MacGregor is going to help us meet a pediatric cardiologist up here for the echocardiogram. So, it looks like we don't have to go to Cincinnati next week. We were dreading leaving Owen again and are thrilled that we don't have to!!
Merry Christmas!
Baby A is still significantly bigger than Baby B. Baby A is a full pound (16 oz) and Baby B is only 11 oz. But, both babies have grown which is good news. Dr. MacGregor said that it is too soon to expect Baby B to catch up, but he still thinks she will.
The most exciting news from this appointment is that Dr. MacGregor is going to help us meet a pediatric cardiologist up here for the echocardiogram. So, it looks like we don't have to go to Cincinnati next week. We were dreading leaving Owen again and are thrilled that we don't have to!!
Merry Christmas!
Saturday, December 19, 2009
Back to Chicago we go... for now.
Thursday morning we went back to the hospital for another ultrasound, fetal echo, and our post op meeting with the doctors. The first thing we found out is that the fluid had equalized for the two babies. At the time of the surgery, Baby A's fluid level had reached 10.5 and Baby B's fluid level had been 1.2. Now they were both 3.2! There were also some other small positive changes since the surgery in both babies, which the doctors were pleased to see.
Unfortunately, baby A (the recipient) still does have heart problems. Her Tei index in her left ventricle went down (from .69 to .62) which is good progress. However, in the right ventricle it went up from .58 to .8. So, we will be heading back to Cincinnati again after Christmas for another echo to further watch the progress in her heart. They did say that the leaky valve problem is solved. But, there is some abnormal blood flow that they hope will correct itself. These heart problems in Baby A continue through her umbilical vein and ductus venosus. This means she still has right heart cardiomyopathy.
Baby B (the donor) looks okay. She has a bit of leakiness in her heart, but they don't think it's a big problem. And her blood flow is okay. The big thing with her is monitoring her growth. But, it was too soon on Thursday to see any growth after the surgery. So, we will continue to have weekly check ups where we monitor her growth. With time, the doctor's think the ratio of her head to body will normalize and that she will catch up to her sister.
So I am now on bed rest for the remainder of the pregnancy. The biggest worry at this point is that the babies come early. So, I need to lay on my side as much as possible to relieve the pressure. Additionally, whenever I move I am using my blood which means that the babies are getting less. Since baby B only has a 30% share of the placenta and her growth is what is so important, this means that bed rest is imperative.
So, the Anderson family has moved into my dad's place downtown. It is one level, so I won't need to use stairs (which the doctor's said was not allowed). And, on Thursday we got to come home and see our baby boy. Owen's hugs are the best medicine.
We already have so many people to thank for all of the love and support through the last two weeks. We really couldn't get through this without all of the help... A huge thank you goes to Dave, Kris, Elliot, and Christian for letting us stay with them in Cincinnati for a week. It was so nice to have family around and it truly made a terrible situation manageable. We love you guys... thank you.
Unfortunately, baby A (the recipient) still does have heart problems. Her Tei index in her left ventricle went down (from .69 to .62) which is good progress. However, in the right ventricle it went up from .58 to .8. So, we will be heading back to Cincinnati again after Christmas for another echo to further watch the progress in her heart. They did say that the leaky valve problem is solved. But, there is some abnormal blood flow that they hope will correct itself. These heart problems in Baby A continue through her umbilical vein and ductus venosus. This means she still has right heart cardiomyopathy.
Baby B (the donor) looks okay. She has a bit of leakiness in her heart, but they don't think it's a big problem. And her blood flow is okay. The big thing with her is monitoring her growth. But, it was too soon on Thursday to see any growth after the surgery. So, we will continue to have weekly check ups where we monitor her growth. With time, the doctor's think the ratio of her head to body will normalize and that she will catch up to her sister.
So I am now on bed rest for the remainder of the pregnancy. The biggest worry at this point is that the babies come early. So, I need to lay on my side as much as possible to relieve the pressure. Additionally, whenever I move I am using my blood which means that the babies are getting less. Since baby B only has a 30% share of the placenta and her growth is what is so important, this means that bed rest is imperative.
So, the Anderson family has moved into my dad's place downtown. It is one level, so I won't need to use stairs (which the doctor's said was not allowed). And, on Thursday we got to come home and see our baby boy. Owen's hugs are the best medicine.
We already have so many people to thank for all of the love and support through the last two weeks. We really couldn't get through this without all of the help... A huge thank you goes to Dave, Kris, Elliot, and Christian for letting us stay with them in Cincinnati for a week. It was so nice to have family around and it truly made a terrible situation manageable. We love you guys... thank you.
Tuesday, December 15, 2009
The Surgery
In short, so far, so good. Cindy had surgery (Fetoscopic Laser Photocoagulation) on Monday and everything went well. They severed 31 connections of the babies' veins and arteries in the placenta. They also removed about 1.3 liters of fluid from her belly which was the excess around Baby A. (The fluid level had gotten up to 10.5 that morning.) Lastly they put three holes in the membrane between the twins to allow the amniotic fluid to be shared between the two babies. The two doctors (Dr. Lewis & Dr. Crombleholme) seemed very positive after the surgery and were pleased with the outcome. Cindy did have a large contraction at the end and they were watching Baby A's heartbeat very closely. After a little trouble, she got right back to normal.
After the surgery, Cindy's recovery went very well. She had contractions, but the doctors and nurses were prepared for this and medicated her to control them. She hadn't had anything to eat for 24 hours or anything to drink for 18 hours, so needless to say, she was very hungry and thirsty. Once she got some liquids in her, things got much better. We stayed overnight in the Fetal Care Center and had two nurses watching over us. They were wonderful!
The next big test was this morning at 7:00 am. We had an ultrasound to see if the babies made it through the night... and they did! We were SO relieved to see their two little heartbeats. And, the doctors were already seeing improvements just 12 hours after the surgery. Baby A's heart looked a bit better (subjectively the doctor said ~ they will run tests on Thursday) and Baby B had liquid in her bladder!!! This was huge for her since we couldn't see the bladder before.
So now we wait for Thursday. On Thursday, we have another ultrasound and fetal echocardiogram to check on the babies. We then meet with the team of doctors again to hear how the babies got through the surgery and learn about our next steps.
We really appreciate everyone's love, support, thoughts, and prayers ~ thank you!
After the surgery, Cindy's recovery went very well. She had contractions, but the doctors and nurses were prepared for this and medicated her to control them. She hadn't had anything to eat for 24 hours or anything to drink for 18 hours, so needless to say, she was very hungry and thirsty. Once she got some liquids in her, things got much better. We stayed overnight in the Fetal Care Center and had two nurses watching over us. They were wonderful!
The next big test was this morning at 7:00 am. We had an ultrasound to see if the babies made it through the night... and they did! We were SO relieved to see their two little heartbeats. And, the doctors were already seeing improvements just 12 hours after the surgery. Baby A's heart looked a bit better (subjectively the doctor said ~ they will run tests on Thursday) and Baby B had liquid in her bladder!!! This was huge for her since we couldn't see the bladder before.
So now we wait for Thursday. On Thursday, we have another ultrasound and fetal echocardiogram to check on the babies. We then meet with the team of doctors again to hear how the babies got through the surgery and learn about our next steps.
We really appreciate everyone's love, support, thoughts, and prayers ~ thank you!
Twin Girls... and TTTS.
On Monday, we had our 20 week ultrasound and found out that we are having baby girls. But, we were told that we have TTTS (Twin to Twin Transfusion Syndrome). A team of High Risk OBs led by Dr. MacGregor decided that we needed to come to Cincinnati because they are one of the best & only centers in the country that deal with this. On Thursday, we were in Cincinnati for our first test, a Fetal Echocardiogram. Friday, we had meetings & tests all day. We were given an MRI and another ultrasound, had a history & physical done, did an EKG, gave blood, and met with a social worker.
We then met with a team of five doctors and nurses to go over all of the findings. The two lead doctors are Dr. Crombleholme and Dr. Lewis, both who impressed us. Here are the findings:
Twin A is the recipient. She is the baby who is getting the excess blood, fluid, and nutrients. Her heart is too large and working too hard to pump all of the excess blood. The walls of her heart are thick and the heart is not functioning correctly. She has twin to twin cardiomyopothy. An index of her heart (the tei index) is severe and she has dilated cerebral venal sinuses, which is basically water on her brain. She has extra amniotic fluid surrounding her and her current fluid level is a 7.7. (It was 6.5 on Monday when we found out about the TTTS). She also has a sandle gap in one of her feet, which is extra space in between her toes. This is a soft marker of chromosomal abnormalities, which she has no other signs of anywhere. The doctors are not too concerned about this, but we will find out more on Monday when they do an amniocentesis which is a part of the surgery to remove some of the excess fluid.
Twin B is the donor. She is the baby who is not moving much and is pinned against the wall of the womb. She is 25% smaller than twin A and is two weeks behind normal growth. Her fluid level is at 1.2 and she is not processing enough fluid through her bladder. She shows no structural abnormalities. Her umbilical cord artery showed a placental insufficiency, which is not good. Her growth is uneven and would continue to get worse if the TTTS continues. Her head is growing and her body is lagging behind, which naturally happens when there is a lack of blood flow.
All of these findings make our case severe. On a rating scale, they rated us at 3C. This means that the best (only) option for trying to save the babies is a laser surgery. There are risks, both maternal and fetal. The maternal risks are minimal, normal to any surgery. The fetal risks are many and complex. But, if the surgery goes well, then al of the existing conditions (heart issues, growth, etc.) will correct themselves. Basically, there is a good chance that there will be no long term effects on the babies. Obviously this is our ultimate goal.
The statistics of the surgery that they shared with us are good. In 93% of the cases, one or both of the babies survive. In 70%, both babies survive. The biggest concern outside of the surgery, is premature delivery. 20% of all TTTS cases deliver before 28 weeks. The average gestation period is 32 weeks. Only 15% go after 34 weeks. This is our goal. With premature labor, there are many additional concerns as with any pregnancy. We did talk about the NICU and the likelihood that our baby girls would be spending time there. Cindy will also be visiting the High-Risk OB team in Evanston weekly during the remainder of her pregnancy and is taking medication to try to prevent premature labor.
After the surgery, we will at least be in Cincinnati until Thursday for a follow up visit. While the time in the hospital has been long and stressful, we are very thankful to be spending our time in Cincinnati with Cindy's family (Uncle Dave, Aunt Kris, & Elliot) which has made things much easier on us. We hope to return to Chicago on Thursday night or Friday morning.
We then met with a team of five doctors and nurses to go over all of the findings. The two lead doctors are Dr. Crombleholme and Dr. Lewis, both who impressed us. Here are the findings:
Twin A is the recipient. She is the baby who is getting the excess blood, fluid, and nutrients. Her heart is too large and working too hard to pump all of the excess blood. The walls of her heart are thick and the heart is not functioning correctly. She has twin to twin cardiomyopothy. An index of her heart (the tei index) is severe and she has dilated cerebral venal sinuses, which is basically water on her brain. She has extra amniotic fluid surrounding her and her current fluid level is a 7.7. (It was 6.5 on Monday when we found out about the TTTS). She also has a sandle gap in one of her feet, which is extra space in between her toes. This is a soft marker of chromosomal abnormalities, which she has no other signs of anywhere. The doctors are not too concerned about this, but we will find out more on Monday when they do an amniocentesis which is a part of the surgery to remove some of the excess fluid.
Twin B is the donor. She is the baby who is not moving much and is pinned against the wall of the womb. She is 25% smaller than twin A and is two weeks behind normal growth. Her fluid level is at 1.2 and she is not processing enough fluid through her bladder. She shows no structural abnormalities. Her umbilical cord artery showed a placental insufficiency, which is not good. Her growth is uneven and would continue to get worse if the TTTS continues. Her head is growing and her body is lagging behind, which naturally happens when there is a lack of blood flow.
All of these findings make our case severe. On a rating scale, they rated us at 3C. This means that the best (only) option for trying to save the babies is a laser surgery. There are risks, both maternal and fetal. The maternal risks are minimal, normal to any surgery. The fetal risks are many and complex. But, if the surgery goes well, then al of the existing conditions (heart issues, growth, etc.) will correct themselves. Basically, there is a good chance that there will be no long term effects on the babies. Obviously this is our ultimate goal.
The statistics of the surgery that they shared with us are good. In 93% of the cases, one or both of the babies survive. In 70%, both babies survive. The biggest concern outside of the surgery, is premature delivery. 20% of all TTTS cases deliver before 28 weeks. The average gestation period is 32 weeks. Only 15% go after 34 weeks. This is our goal. With premature labor, there are many additional concerns as with any pregnancy. We did talk about the NICU and the likelihood that our baby girls would be spending time there. Cindy will also be visiting the High-Risk OB team in Evanston weekly during the remainder of her pregnancy and is taking medication to try to prevent premature labor.
After the surgery, we will at least be in Cincinnati until Thursday for a follow up visit. While the time in the hospital has been long and stressful, we are very thankful to be spending our time in Cincinnati with Cindy's family (Uncle Dave, Aunt Kris, & Elliot) which has made things much easier on us. We hope to return to Chicago on Thursday night or Friday morning.
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