Well, we are near King's Island and we feel like we've been riding a roller coaster. We forgot how it felt like this with Alyssa. Mike and I went in to Samaritan Hospital at 12:30 p.m. to register and have our amnio reduction done at 1:00 p.m. Well.......they did an ultrasound and checked our amniotic fluid levels and they had changed since last Friday. They were 4 and 8.4 Today they were 4.8 and 6.4 (around there). The normal range is 2 to 8. So with the numbers they had today, they really didn't see any benefit of doing the amnio. That was really good news. The dr. said the only thing now that is pointing to TTTS is the stress on Olivia's heart (I thought both hearts were stressed but I guess it was just Olivia).
So...where do we go from here? Friday we are scheduled for an Echo at 10:30 a.m. They will see if Olivia's heart is still under stress (she is moderate on a scale of mild, moderate or severe). If she is still under stress, we go in for laser surgery next week. If she is fine, they will eliminate TTTS and diagnose us as only growth restriction and I will go home to Washington on a monitering basis. Still bedrest, still eventually hospital bedrest and take the twins when Emma's growth stops or she is in distress. He thinks she has a good chance of growing to a survival range. So we are very thankful they did not proceed with this when not necessary. In a way, we are back at square one but in a better place. It looks like we are slowly eliminating things. So we'll just keep praying. It's amazing how much stronger we have been and trusting God with this more so than with Alyssa's situation.
Thanks for all the prayers - they are obviously working!!!!
Monday, April 7, 2008
Sunday, April 6, 2008
It has been a relaxing weekend...
It has been a relaxing weekend. Mike will be leaving tomorrow after the amnio to go back home and work. The dr. said he would call me by 9:00 a.m. and to be ready to come in ASAP. He wants to get me in early if he can. I will know at that appointment the schedule for when he wants to see me back again to do the Echo to see if the babies hearts have improved. I'm guessing that will be Friday. If that is the case, Mike will come back Thursday evening after work. Linda might bring the girls up to see us on Friday. That is Loren's 1st birthday and I will be dying to see my girls!!!!! I already miss them tons. But I know they are having a GREAT time with grandparents, aunts and cousins.
I'm feeling better about the situation. It's giving up that controlling aspect and releasing my girls to God. They are His and I have to let Him hold them in their hands. I have to release the fear of losing them. But when I release them, it gives me peace. Peace that I don't have to fix everything and it's not up to me. God has a plan for them and I have to trust that His will will be done. As hard as that is, it's freeing. Going through it makes you not want to become attached, makes you not want to name them, not see their little personality on the screen. It makes you want to think of them as fetuses because you think it will be easier. But we don't want to miss this adventure and getting to know them. They are so sweet already and have these amazing personalities. So we will continue to open our hearts to them and get to know them and treasure each moment we share and continue to lean on God to help us through this time.
I didn't go into much detail medically the other day and I know some of you have questions. So I will try to go into it a little more. Just know that it is complex and it is fine if you don't want to read this section. When we came here, we had already heard from one dr. that she thought we had twin to twin. We heard from another dr. the day before we came that he thought we had growth restriction. So we were a little on the confused and overwhelmed side when we got here. When we met with the dr.s he told us we had both. In this case of understanding it would have been easier for him to say we had one or the other and not both. There are reasons for the growth restriction (which some of them fall under the TTTS).
Emma's umbilical cord is not attached in the best place (it's on the far side end of the placenta). Olivia's is attached right in the center of the placenta. Emma also only has 2 blood vessels in her umbilical cord (she is supposed to have 3). When the egg split, Olivia could have just gotten a bigger part of the egg than Emma. Twin to Twin transfusion Syndrome is a complication of multiple gestation resulting from imbalanced blood flow through vascular communications in the placenta, such that one twin is compromised and the other is favored. This contributes to the growth on the side of twin to twin.
So basically you have this placenta in the shape of a watermelon. Split down the middle is a thin membrane that seperates our two girls. There are arteries and veins that are coming from each twin to the membrane. The blood and nutrients flow from the twin to the membrane and are supposed to come back to that twin. Well, some of ours are not doing that. Some are going to the membrane and going through that to the other twin. So there is an imbalance of blood flow causing stress on both babies hearts. The laser surgery would go in, cauterize the ones that are flowing to the other baby so that blood flow is stopped. They would leave the ones that are acting correctly. This is a 91% survival rate of one or more twin in this case (taken at the month after delivery). So are chance are very good.
Statistics right now:
Emma is 9 oz. - measuring 19 weeks
Olivia is 16 oz. - measuring 21 weeks
Mommy - 22 weeks pregnant.
So they are actually both a little under in size.
The amnio reduction which I will have tomorrow, is 20-30% effective. They will insert a long needle into my belly button and extract some amniotic fluid off Olivia's sac. They are hoping to relieve some pressure from both hearts by doing this. I will be suprised if this works. But we are willing to give it a try before we go to surgery and we have time to try this. I will be able to go home afterwards and get back on bedrest.
Friday, they will do an echo and we will know whether we will proceed next week with the surgery.
I hope this explains a little more.
It is overwhelming to try to understand something so complex and make a big decision as far as what treatment to go through with. So that is why we have had some time to ourselves the past few days to really overanalyze our options.
Please send any questions our way. Please take care of my husband while I'm gone. (At least he won't have the kids with him). : ) I think he'll keep his focus on working on the basement.
I'm feeling better about the situation. It's giving up that controlling aspect and releasing my girls to God. They are His and I have to let Him hold them in their hands. I have to release the fear of losing them. But when I release them, it gives me peace. Peace that I don't have to fix everything and it's not up to me. God has a plan for them and I have to trust that His will will be done. As hard as that is, it's freeing. Going through it makes you not want to become attached, makes you not want to name them, not see their little personality on the screen. It makes you want to think of them as fetuses because you think it will be easier. But we don't want to miss this adventure and getting to know them. They are so sweet already and have these amazing personalities. So we will continue to open our hearts to them and get to know them and treasure each moment we share and continue to lean on God to help us through this time.
I didn't go into much detail medically the other day and I know some of you have questions. So I will try to go into it a little more. Just know that it is complex and it is fine if you don't want to read this section. When we came here, we had already heard from one dr. that she thought we had twin to twin. We heard from another dr. the day before we came that he thought we had growth restriction. So we were a little on the confused and overwhelmed side when we got here. When we met with the dr.s he told us we had both. In this case of understanding it would have been easier for him to say we had one or the other and not both. There are reasons for the growth restriction (which some of them fall under the TTTS).
Emma's umbilical cord is not attached in the best place (it's on the far side end of the placenta). Olivia's is attached right in the center of the placenta. Emma also only has 2 blood vessels in her umbilical cord (she is supposed to have 3). When the egg split, Olivia could have just gotten a bigger part of the egg than Emma. Twin to Twin transfusion Syndrome is a complication of multiple gestation resulting from imbalanced blood flow through vascular communications in the placenta, such that one twin is compromised and the other is favored. This contributes to the growth on the side of twin to twin.
So basically you have this placenta in the shape of a watermelon. Split down the middle is a thin membrane that seperates our two girls. There are arteries and veins that are coming from each twin to the membrane. The blood and nutrients flow from the twin to the membrane and are supposed to come back to that twin. Well, some of ours are not doing that. Some are going to the membrane and going through that to the other twin. So there is an imbalance of blood flow causing stress on both babies hearts. The laser surgery would go in, cauterize the ones that are flowing to the other baby so that blood flow is stopped. They would leave the ones that are acting correctly. This is a 91% survival rate of one or more twin in this case (taken at the month after delivery). So are chance are very good.
Statistics right now:
Emma is 9 oz. - measuring 19 weeks
Olivia is 16 oz. - measuring 21 weeks
Mommy - 22 weeks pregnant.
So they are actually both a little under in size.
The amnio reduction which I will have tomorrow, is 20-30% effective. They will insert a long needle into my belly button and extract some amniotic fluid off Olivia's sac. They are hoping to relieve some pressure from both hearts by doing this. I will be suprised if this works. But we are willing to give it a try before we go to surgery and we have time to try this. I will be able to go home afterwards and get back on bedrest.
Friday, they will do an echo and we will know whether we will proceed next week with the surgery.
I hope this explains a little more.
It is overwhelming to try to understand something so complex and make a big decision as far as what treatment to go through with. So that is why we have had some time to ourselves the past few days to really overanalyze our options.
Please send any questions our way. Please take care of my husband while I'm gone. (At least he won't have the kids with him). : ) I think he'll keep his focus on working on the basement.
Friday, April 4, 2008
Hello Family and Friends...
Hello Family and Friends,
First of all, thank you for being patient with us. It has been a very long day of testing and probing and we are done. After being so drained, we are not jumping to get on the phone and call people so bear with us.
The findings of today are this....
Our twins have the combination of 1) twin to twin transfusion syndrome and 2) growth restriction.
The good news is that Emma and Olivia have no birth defects. There is nothing big wrong with them as far as how they have grown and developed, even though they have a 40% growth difference. Emma is 9 oz. and Olivia is 1 pound.
The concern and problem right now is there is distress on both babies hearts. They do not have heart failure right now. But they can tell they are both working too hard. If nothing is done, we will lose both babies.
So my first order from the doctors is that I am now on bedrest.
Our two options are this
1) amnio reduction - they will go into the larger baby's amniotic sac and reduce some of the fluid. There is a 20-30% chance that this will work. It is less risky and we're willing to give it a shot. This procedure will probably be this coming Monday. One week from there, we will have another echo to see how the babies hearts are doing. If this has not helped relieve the stress then we go to option 2. I will remain in Cincinnati for the duration. Mike will most likely come back to work.
2) laser surgery - we will schedule surgery as soon as possible (once we know that option #1 didn't work) for that week. They will go in and cauterize the blood vessels. This is more risky but it has a 91% chance that one or both will survive.
So I think that is the basic information of it all. It was a big decision but we are trying to be wise with our choices on how to proceed.
The other thing, while they did my MRI, they found a massive cyst on my left kidney. Once we take care of this situation I will go see a urologist. But right now the twins come first.
So I think I'm done. I might write tomorrow when some of my brain cells have returned.
Love you lots and thanks for the prayers!!
First of all, thank you for being patient with us. It has been a very long day of testing and probing and we are done. After being so drained, we are not jumping to get on the phone and call people so bear with us.
The findings of today are this....
Our twins have the combination of 1) twin to twin transfusion syndrome and 2) growth restriction.
The good news is that Emma and Olivia have no birth defects. There is nothing big wrong with them as far as how they have grown and developed, even though they have a 40% growth difference. Emma is 9 oz. and Olivia is 1 pound.
The concern and problem right now is there is distress on both babies hearts. They do not have heart failure right now. But they can tell they are both working too hard. If nothing is done, we will lose both babies.
So my first order from the doctors is that I am now on bedrest.
Our two options are this
1) amnio reduction - they will go into the larger baby's amniotic sac and reduce some of the fluid. There is a 20-30% chance that this will work. It is less risky and we're willing to give it a shot. This procedure will probably be this coming Monday. One week from there, we will have another echo to see how the babies hearts are doing. If this has not helped relieve the stress then we go to option 2. I will remain in Cincinnati for the duration. Mike will most likely come back to work.
2) laser surgery - we will schedule surgery as soon as possible (once we know that option #1 didn't work) for that week. They will go in and cauterize the blood vessels. This is more risky but it has a 91% chance that one or both will survive.
So I think that is the basic information of it all. It was a big decision but we are trying to be wise with our choices on how to proceed.
The other thing, while they did my MRI, they found a massive cyst on my left kidney. Once we take care of this situation I will go see a urologist. But right now the twins come first.
So I think I'm done. I might write tomorrow when some of my brain cells have returned.
Love you lots and thanks for the prayers!!
Tuesday, April 1, 2008
I talked with the lady last night...
I talked with the lady last night for about an hour who founded the Twin to Twin Syndrome Foundation. She seems to think there is another problem going along with the TTTS. I'm not going to go into it because I don't fully understand it. But it is a problem that can't be corrected. It would require being in the hospital starting at 24 weeks with 24 hour monitoring to watch the small one - for the placenta to run out, for Emma to stop growing and at that point they would take both Emma and Olivia. It could be early, it could be later. This is only a possibility right now.
We are going into this not really knowing for sure anything. There will be many options given to us to consider. A lot of this also depends how bad I am at that point. You have to be at a certain point for the surgery. If I went to the dr. in Wisconsin, I would be bad enough to do the laser surgery. (Because Emma and Olivia are at a 43% growth difference as of last Thursday). That dr. does the surgery if they are over 40% difference. However, I do not know how Cincinnati works. There are other things they can do besides the laser but aren't necessarily effective. There is one that I definitely don't want to do. It's not really proven to make a difference and is too much risk to the babies.
So if you could pray for Mike and I to have wisdom to make the right decision of the procedure we choose (if that is how it works). I have started high protein shakes 3 times a day to help them out and also myself. If I'm going into surgery, I need to be healthy also. The doctor that invented the laser surgery recommends the protein shakes, sipping it laying down on your left side. So that is what I'm doing.
I am staying busy packing and trying to leave my house in a condition that will be good for whatever outcome.
Thanks for your prayers! I will update you again on Friday night after our long day at the hospital.
We are going into this not really knowing for sure anything. There will be many options given to us to consider. A lot of this also depends how bad I am at that point. You have to be at a certain point for the surgery. If I went to the dr. in Wisconsin, I would be bad enough to do the laser surgery. (Because Emma and Olivia are at a 43% growth difference as of last Thursday). That dr. does the surgery if they are over 40% difference. However, I do not know how Cincinnati works. There are other things they can do besides the laser but aren't necessarily effective. There is one that I definitely don't want to do. It's not really proven to make a difference and is too much risk to the babies.
So if you could pray for Mike and I to have wisdom to make the right decision of the procedure we choose (if that is how it works). I have started high protein shakes 3 times a day to help them out and also myself. If I'm going into surgery, I need to be healthy also. The doctor that invented the laser surgery recommends the protein shakes, sipping it laying down on your left side. So that is what I'm doing.
I am staying busy packing and trying to leave my house in a condition that will be good for whatever outcome.
Thanks for your prayers! I will update you again on Friday night after our long day at the hospital.
Sunday, March 30, 2008
A little scare..
So we are all set for our appointment in Cincinnati this coming Friday. We will do most of our testing at the Cincinnati Children's Hospital Medical Center. I don't know if that is where they will do the surgery or not. I will let you know the exact date and location of the surgery when we find out Friday.
We had a little scare today. I felt them move last night at dinner but I hadn't felt them move since. So today, by 2:00 p.m., I needed to know that they were o.k. I called my dr. and she wanted me to come in to the hospital and have an ultrasound done just to make sure they were o.k. They are o.k. She could definitely see the problems with the fluid levels and the size difference and she was glad we were going but she said we weren't in an emergency state. I felt good about that. The little one still has enough amniotic fluid to make it until then. The one was kicking the other in the face.
So we are now home with our peace of mind.
We had a little scare today. I felt them move last night at dinner but I hadn't felt them move since. So today, by 2:00 p.m., I needed to know that they were o.k. I called my dr. and she wanted me to come in to the hospital and have an ultrasound done just to make sure they were o.k. They are o.k. She could definitely see the problems with the fluid levels and the size difference and she was glad we were going but she said we weren't in an emergency state. I felt good about that. The little one still has enough amniotic fluid to make it until then. The one was kicking the other in the face.
So we are now home with our peace of mind.
Friday, March 28, 2008
There is a problem...
Hello to all our wonderful family and friends,
We had a trying day yesterday. I haven't talked to most of you and I hate to email you instead of calling but sometimes it's easier to do it this way.
I had an ultrasound yesterday. My blood pressure has been really good this week which is great news. Both babies were very active and very cute. There is a problem though that we have been watching progress. 2 ultrasounds ago, our twins were 3 and 4 oz. 1 ultrasound ago, they were 5 and 8 oz. Yesterday they were 8 and 14 oz. Twin B is almost double the size of Twin A. What they have is called Twin To Twin Transfusion Syndrome. This is where one baby is getting most if not all the nutrients and blood. I thought only the little one suffered through this, but actually they both do. The bigger one is getting too much blood going to it's heart and if not treated she could have heart failure. The good news is they both still have bladders which is saying they are still regulating the amniotic fluid. Now, the little one doesn't have much fluid. Which is another problem for both. The bigger baby has too much fluid. As this gets bigger, it could send me into pre-term labor. The little one is obviously not able to develop and grow right now.
So...they are sending me to a special hospital in Cincinnati next week. Next Friday, April 4th, I will have a full day of testing. This will include an MRI, Echocardiogram, an ultrasound and several consultations and then we will have a team meeting at the end with a board of doctors where we will decide at that time the next course of action. We are looking at laser surgery. They only do this in Wisconsin and Cincinnati. They will take an amniotic needle and go into the placenta and with a laser they will seperate the blood vessels that the twins share. Going into the uteras like this, there is always a risk for pre-term labor. So they will put me on Magnesium Sulfate to stop contractions. (I was on this with Alyssa to keep my blood pressure down - not pretty). But definitely worth it.
I talked with a wonderful lady last night (a friend of my sister, Angie, in St. Louis) and she had the surgery done a year ago with the same surgeon I will have. Her twin boys are now 7 months and have no complications. So she told me her success story which is always nice to hear. She walked me through what will happen while I'm there and explained in detail everything that I was wanting to know. So I definitely feel better. This thing can go really bad really fast, so I'm trying to take it easy this week until we go.
My girls are going to stay with their Grandparents while Mike and I are in Cinci. I've been told that I will probably remain in the hospital for a week to 2 weeks after the surgery and then remain on bedrest for the rest of my pregnancy. So it will definitely be a trying time but it's temporary and is definitely worth it to save these two lives.
Please keep us in your prayers as the next few weeks progress. I will keep you updated probably through email.
Thanks for listening and we love you all!!!
Mike, Bethany, Alyssa, Loren and A and B (we will try to decide on names soon, I promise )
We had a trying day yesterday. I haven't talked to most of you and I hate to email you instead of calling but sometimes it's easier to do it this way.
I had an ultrasound yesterday. My blood pressure has been really good this week which is great news. Both babies were very active and very cute. There is a problem though that we have been watching progress. 2 ultrasounds ago, our twins were 3 and 4 oz. 1 ultrasound ago, they were 5 and 8 oz. Yesterday they were 8 and 14 oz. Twin B is almost double the size of Twin A. What they have is called Twin To Twin Transfusion Syndrome. This is where one baby is getting most if not all the nutrients and blood. I thought only the little one suffered through this, but actually they both do. The bigger one is getting too much blood going to it's heart and if not treated she could have heart failure. The good news is they both still have bladders which is saying they are still regulating the amniotic fluid. Now, the little one doesn't have much fluid. Which is another problem for both. The bigger baby has too much fluid. As this gets bigger, it could send me into pre-term labor. The little one is obviously not able to develop and grow right now.
So...they are sending me to a special hospital in Cincinnati next week. Next Friday, April 4th, I will have a full day of testing. This will include an MRI, Echocardiogram, an ultrasound and several consultations and then we will have a team meeting at the end with a board of doctors where we will decide at that time the next course of action. We are looking at laser surgery. They only do this in Wisconsin and Cincinnati. They will take an amniotic needle and go into the placenta and with a laser they will seperate the blood vessels that the twins share. Going into the uteras like this, there is always a risk for pre-term labor. So they will put me on Magnesium Sulfate to stop contractions. (I was on this with Alyssa to keep my blood pressure down - not pretty). But definitely worth it.
I talked with a wonderful lady last night (a friend of my sister, Angie, in St. Louis) and she had the surgery done a year ago with the same surgeon I will have. Her twin boys are now 7 months and have no complications. So she told me her success story which is always nice to hear. She walked me through what will happen while I'm there and explained in detail everything that I was wanting to know. So I definitely feel better. This thing can go really bad really fast, so I'm trying to take it easy this week until we go.
My girls are going to stay with their Grandparents while Mike and I are in Cinci. I've been told that I will probably remain in the hospital for a week to 2 weeks after the surgery and then remain on bedrest for the rest of my pregnancy. So it will definitely be a trying time but it's temporary and is definitely worth it to save these two lives.
Please keep us in your prayers as the next few weeks progress. I will keep you updated probably through email.
Thanks for listening and we love you all!!!
Mike, Bethany, Alyssa, Loren and A and B (we will try to decide on names soon, I promise )
Tuesday, March 4, 2008
I'll try to make this short and sweet...
I'll try to make this short and sweet. Alyssa had her eye exam yesterday. She has been wearing the patch over her good eye anywhere between 2 and 6 hours a day for the last 8 weeks. By far, it has been the hardest thing we have had to do - more so than 5 surgeries. I don't wish it on anyone. We are trying to get that eye to work (to make the brain in that eye turn on). She is basically blind in that eye. So by patching it, I'm asking her to give up her eyesight for several hours. Anyhow...
So the verdict yesterday was that it has not improved at all. Her Dr. is going to see if she is a candidate for this surgery in Houston, TX. It is the only place they do it. We really don't know anything about it right now. So there is not much to share. I'm going to be calling next Monday to see what they found out. Mike and I were very frustrated yesterday because we were hopeing to see even the smallest amount of improvement. Especially for me because I'm the one at home battling this every day. Despite our frustration, we are not jumping into this idea of surgery quite yet.
There is much we want to know before we make this decision (If she is a candidate). What are the risks? Is it a sure thing? If not, what is our chances of it helping or fixing the problem? and on and on......
It is not like she is 85 and looking into this eye surgery. This is a 4 year old that has her whole life ahead of her and we want to make sure we are making the right decision.
So until then.........we continue to wear the patch. We are not giving up on this stubborn brain that has a perfectly good eye to work with. I'll keep you updated on this as it progresses.
Alyssa - loves to do arts and crafts. Her very favorite thing in the world. besides camping. She has been talking for the past month now on how she can't wait to go camping. She has already packed her bag a couple of times. She loves to laugh and play with her cousins!!!
Loren - is almost walking. She is very sweet and fun to be with. I can't believe she is almost 1. She is growing fast. Her and Alyssa love to play together. They stay up at night and just laugh and laugh (even though they are supposed to be sleeping). I'm anxious to see her with the next two!!
#3 and #4 - So we found out they are identical girls. We are excited!!! We go in for an ultrasound tomorrow to check their growth - make sure one is not stealing all the goods. My blood pressure has been up the last 3 appointments. If it is up tomorrow, I will be put on meds. I'm leaving both girls with friends so I'm praying it won't be up. I'll be 18 weeks Thursday - half way there.
So the verdict yesterday was that it has not improved at all. Her Dr. is going to see if she is a candidate for this surgery in Houston, TX. It is the only place they do it. We really don't know anything about it right now. So there is not much to share. I'm going to be calling next Monday to see what they found out. Mike and I were very frustrated yesterday because we were hopeing to see even the smallest amount of improvement. Especially for me because I'm the one at home battling this every day. Despite our frustration, we are not jumping into this idea of surgery quite yet.
There is much we want to know before we make this decision (If she is a candidate). What are the risks? Is it a sure thing? If not, what is our chances of it helping or fixing the problem? and on and on......
It is not like she is 85 and looking into this eye surgery. This is a 4 year old that has her whole life ahead of her and we want to make sure we are making the right decision.
So until then.........we continue to wear the patch. We are not giving up on this stubborn brain that has a perfectly good eye to work with. I'll keep you updated on this as it progresses.
Alyssa - loves to do arts and crafts. Her very favorite thing in the world. besides camping. She has been talking for the past month now on how she can't wait to go camping. She has already packed her bag a couple of times. She loves to laugh and play with her cousins!!!
Loren - is almost walking. She is very sweet and fun to be with. I can't believe she is almost 1. She is growing fast. Her and Alyssa love to play together. They stay up at night and just laugh and laugh (even though they are supposed to be sleeping). I'm anxious to see her with the next two!!
#3 and #4 - So we found out they are identical girls. We are excited!!! We go in for an ultrasound tomorrow to check their growth - make sure one is not stealing all the goods. My blood pressure has been up the last 3 appointments. If it is up tomorrow, I will be put on meds. I'm leaving both girls with friends so I'm praying it won't be up. I'll be 18 weeks Thursday - half way there.
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