Look out ladies between the gestational age of 18 and 30 weeks!!!!!!
Danielle and I proudly introduce Ben....
And Jake!!!!!!!!!
(These are there 20 week birthday photos)
Thursday, July 27, 2006
Monday, July 24, 2006
23 Weeks 1 Day
We have good news and difficult news. Again, today is a day I don’t feel much like updating the blog but I know if my family and friends know what is going on they can pray extra hard for our boys.
Good News:
Jake is at the 50th percentile for growth, weighing in at 1 pound 5 ounces. His MVP was at 6.1. The best it has been so far. He is doing GREAT!
Ben is at the 17th percentile for growth, weighing in at 14.5 ounces. Doctors say normal range of growth is between the 10th and 90th percentile, so we are pleased with the 17th percentile. At our 17-week appointment Ben was at the 5th percentile, so this is a LOT better. His MVP was at 4.5, which was his best reading so far. Ben’s doppler reading was abnormal again which continues to be our biggest concern. He has intermittent absent end diastolic flow. Fortunately, it has not changed but obviously we would like to see a normal blood flow.
All in all, things are about where they were last week.
Difficult News:
Our doctor told us as we approach viability we need to prepare for all possible outcomes. This was not an easy conversation to have. If Ben stops growing or gets really sick in the next 4 weeks or so, we have to make a very difficult decision. He told us that every appointment we come to from now on we have to be prepared to make a decision. In our hearts we truly believe Ben is going to be just fine but I guess we need to be prepared for all scenarios.
Basically, we will deliver based on Ben’s progress. The problem is that if Ben begins to have problems at lets say week 24 and we need to deliver, this will also put Jake in jeopardy. Jake would then have to be delivered when Ben does despite how well he may be doing. Some people feel this is unfair to the bigger baby and the doctor suggested if it comes to this, we could do a cord ligation. This means we would clamp Ben’s cord, only allowing Jake to survive and continue to grow. This is very difficult for me to write about let alone actually consider. The doctor told us this is 100% our decision. Obviously, Kevin and I are hoping we never have to make this decision and that Ben will continue to grow. We have faith in God and know he ultimately decides the fate of our babies. I believe that every time Ben gives me a little kick he is telling me “Mom, I am ok!!!”
Below you will find survival statistics for various gestational ages. Each week that passes increases our chances of survival and quality of life.
General Survival Statistics:
23 weeks:
Babies born at 23 weeks have a 20% to 40% chance of survival, if they weigh over 1 pound 2 ounces (500 grams). If they weigh less than 1 pound 2 ounces, the chance of survival is closer to 10% or less.
24 weeks:
Babies born at 24 weeks have a 60% to 70% chance of survival, if they weigh more than 1 pound 10 ounces (750 grams). If they weigh less than 1 pound 10 ounces, then chance of survival is around 50% to 60%.
25 weeks:
Babies born at 25 weeks have a 70% to 80% chance of survival.
26 weeks:
Babies born at 26 weeks have a 80% to 90% chance of survival.
General estimations about the chances of long-term handicaps (as defined on the first page):
23 weeks: (less than 1 pound 2 ounces)There is very little information on these babies. It is safe to assume that almost all will have some degree of handicap. Probably about 50% of them will have mild to moderate handicaps and the other 50% will have severe handicaps. Rarely, is an infant born this early and this small, normal.
23 weeks: (over 1 pound 2 ounces)About 25% of these babies will be normal, 25% will have mild handicaps, and 25% will have moderate handicaps, and 25% will have severe handicaps.
24 weeks: About 25% will be normal, 30% will have mild handicaps, 25% will have moderate handicaps, and 20% will have severe handicaps.
25 weeks: About 30% to 40% of these babies will be normal and 30% to 40% will have only mild handicaps. About 10% to 20% will have moderate handicaps and 10% to 20% will have have severe handicaps.
26 weeks: About 70% to 80% of these babies will be normal, 5% to 10% will have mild handicaps, 5% to 10% will have moderate handicaps, and 5% to 10% will have severe handicaps.
The doctor said the outcome for our babies is very unpredictable. We see “unpredictable” as a good thing. Several doctors have told us “this will progress” and “it is an absolute that you have TTTS” and so far we have not followed suit. These days I tend to go with what I feel in my heart versus what the doctors tell me. My heart seems to be on target so far!
We appreciate every email, phone call, and prayer. I apologize if I have not kept up with returning calls/emails lately. Just know your kind words are always appreciated!!!!
We have good news and difficult news. Again, today is a day I don’t feel much like updating the blog but I know if my family and friends know what is going on they can pray extra hard for our boys.
Good News:
Jake is at the 50th percentile for growth, weighing in at 1 pound 5 ounces. His MVP was at 6.1. The best it has been so far. He is doing GREAT!
Ben is at the 17th percentile for growth, weighing in at 14.5 ounces. Doctors say normal range of growth is between the 10th and 90th percentile, so we are pleased with the 17th percentile. At our 17-week appointment Ben was at the 5th percentile, so this is a LOT better. His MVP was at 4.5, which was his best reading so far. Ben’s doppler reading was abnormal again which continues to be our biggest concern. He has intermittent absent end diastolic flow. Fortunately, it has not changed but obviously we would like to see a normal blood flow.
All in all, things are about where they were last week.
Difficult News:
Our doctor told us as we approach viability we need to prepare for all possible outcomes. This was not an easy conversation to have. If Ben stops growing or gets really sick in the next 4 weeks or so, we have to make a very difficult decision. He told us that every appointment we come to from now on we have to be prepared to make a decision. In our hearts we truly believe Ben is going to be just fine but I guess we need to be prepared for all scenarios.
Basically, we will deliver based on Ben’s progress. The problem is that if Ben begins to have problems at lets say week 24 and we need to deliver, this will also put Jake in jeopardy. Jake would then have to be delivered when Ben does despite how well he may be doing. Some people feel this is unfair to the bigger baby and the doctor suggested if it comes to this, we could do a cord ligation. This means we would clamp Ben’s cord, only allowing Jake to survive and continue to grow. This is very difficult for me to write about let alone actually consider. The doctor told us this is 100% our decision. Obviously, Kevin and I are hoping we never have to make this decision and that Ben will continue to grow. We have faith in God and know he ultimately decides the fate of our babies. I believe that every time Ben gives me a little kick he is telling me “Mom, I am ok!!!”
Below you will find survival statistics for various gestational ages. Each week that passes increases our chances of survival and quality of life.
General Survival Statistics:
23 weeks:
Babies born at 23 weeks have a 20% to 40% chance of survival, if they weigh over 1 pound 2 ounces (500 grams). If they weigh less than 1 pound 2 ounces, the chance of survival is closer to 10% or less.
24 weeks:
Babies born at 24 weeks have a 60% to 70% chance of survival, if they weigh more than 1 pound 10 ounces (750 grams). If they weigh less than 1 pound 10 ounces, then chance of survival is around 50% to 60%.
25 weeks:
Babies born at 25 weeks have a 70% to 80% chance of survival.
26 weeks:
Babies born at 26 weeks have a 80% to 90% chance of survival.
General estimations about the chances of long-term handicaps (as defined on the first page):
23 weeks: (less than 1 pound 2 ounces)There is very little information on these babies. It is safe to assume that almost all will have some degree of handicap. Probably about 50% of them will have mild to moderate handicaps and the other 50% will have severe handicaps. Rarely, is an infant born this early and this small, normal.
23 weeks: (over 1 pound 2 ounces)About 25% of these babies will be normal, 25% will have mild handicaps, and 25% will have moderate handicaps, and 25% will have severe handicaps.
24 weeks: About 25% will be normal, 30% will have mild handicaps, 25% will have moderate handicaps, and 20% will have severe handicaps.
25 weeks: About 30% to 40% of these babies will be normal and 30% to 40% will have only mild handicaps. About 10% to 20% will have moderate handicaps and 10% to 20% will have have severe handicaps.
26 weeks: About 70% to 80% of these babies will be normal, 5% to 10% will have mild handicaps, 5% to 10% will have moderate handicaps, and 5% to 10% will have severe handicaps.
The doctor said the outcome for our babies is very unpredictable. We see “unpredictable” as a good thing. Several doctors have told us “this will progress” and “it is an absolute that you have TTTS” and so far we have not followed suit. These days I tend to go with what I feel in my heart versus what the doctors tell me. My heart seems to be on target so far!
We appreciate every email, phone call, and prayer. I apologize if I have not kept up with returning calls/emails lately. Just know your kind words are always appreciated!!!!
Thursday, July 20, 2006
Just wanted to give a quick update to our loyal blog groupies! :) Not much has changed since the last update…which is good! At our appointment on Monday we had a small scare. The technician could not find Ben’s end diastolic flow and we all started to panic a bit. Again, this is not a good sign and would indicate he is struggling. However, the doctor came in and found it right away! Thank GOD!!!! His S/D ratio actually was 5.6 compared to 7.5 last Wednesday, so that was an improvement.
We have an echocardiogram Friday and a weight check and doppler on Monday. I am VERY nervous for the weight check. I am hoping Ben has gained at least 3 ounces!! Jake is right on track so that is good. We keep telling Jake he needs to share with his brother!! :)
We officially made the switch to U.M. and we are very happy about our decision. We are confident in our doctors and they seem to be very proactive. It’s also nice and close to my parents house which is working out well.
Dr. Crombleholme (the TTTS specialist from Cincinnati) called us Friday night at 8:00 to check in and see how we are doing. He said he was “very encouraged” with our progress. It was the first time a doctor has ever said anything positive to us about our pregnancy. We were on cloud nine. We are also cautious and realistic but believe it is so important to focus on any positive news that comes our way.
One last fun thing I would like to mention is that Kevin and both of our moms have felt the babies kick. I don’t know what it feels like to have one baby but two feels like they are doing acrobatics in my stomach. The amount of movement is amazing! I feel it almost all day long and on both sides, which is so reassuring. Yesterday, I could actually see my stomach moving up and down with each little kick. It was very entertaining. I can just picture them in there playing with each other. It makes me feel so good to know that they are not alone in all of this! They say at 20 weeks twins know that the other one is there and that they even show signs of affection toward one another. How cool is that!!!
Hopefully we will have some good news for you on Monday! :)
Thursday, July 13, 2006
21 Weeks 4 Days (4 weeks of bed rest)
Kevin and I learned a very valuable lesson about the pregnancy process yesterday. We went to U.M. yesterday to get another opinion and to also possibly consider switching health care providers. Before our consultation with the doctor, we had a three hour ultrasound. The tech conducting the u/s was very thorough. She did each measurement 2-3 times. The u/s machine was also very clear and detailed. Once we completed the u/s the tech told us that Jake was 15.9 ounces and Ben was 11.2 ounces!!!! So in less then 24 hours, we got a completely different measurement. This puts the boys at a 29% weight discordance. The lesson we learned is that technology is NOT always accurate and NOT to put too much stock into these measurements if everything else seems to be ok. We believe that U.M.’s measurements are more accurate because they really took their time with each measurement as opposed to the Beaumont group who flew through our u/s. We were so happy to hear Ben had gained more weight then we originally thought.
We are not sure if we are going to make the switch to U.M. yet but they did have some interesting observations about our case. The doctor told us he is not sure if we have TTTS because our fluid levels have stayed stable. He seem to be leaning toward IUGR but also said we will not know for sure till the babies are born and they can dissect the placenta. To test the placenta, they actually pour milk through it to see if the milk crosses between the vessels. If it does, then this would indicate Twin to Twin.
At this point, no doctor can tell us why we have these discrepancies between the two babies. The doctor at U.M. believes something is causing Ben to lag behind. He told us not to compare the boy’s weights but to rather watch to see if Ben is growing on his own curve. His biggest concern was Ben’s abnormal doppler. Ben’s S/D ratio (systolic/diastolic ratio) is elevated to 7.5. What this means is that his umbilical blood flow is facing more resistance then it should. This is probably an indication of why he is growing at a smaller rate. This finding is also indicative of IUGR and not TTTS. So now our biggest concern is the doppler vs. the weights and amniotic fluid. If its not one thing, it’s another!!!
Where does this leave us now…bed rest, high protein diet, and serial monitoring. Pretty much exactly where we were before. It’s such a mystery and only time will tell how this will play out.
If you get a minute and want to read a wonderfully touching TTTS success story, check out the 2nd link attached to our blog. This family documented their entire journey and it is a great inspiration to us!
Kevin and I learned a very valuable lesson about the pregnancy process yesterday. We went to U.M. yesterday to get another opinion and to also possibly consider switching health care providers. Before our consultation with the doctor, we had a three hour ultrasound. The tech conducting the u/s was very thorough. She did each measurement 2-3 times. The u/s machine was also very clear and detailed. Once we completed the u/s the tech told us that Jake was 15.9 ounces and Ben was 11.2 ounces!!!! So in less then 24 hours, we got a completely different measurement. This puts the boys at a 29% weight discordance. The lesson we learned is that technology is NOT always accurate and NOT to put too much stock into these measurements if everything else seems to be ok. We believe that U.M.’s measurements are more accurate because they really took their time with each measurement as opposed to the Beaumont group who flew through our u/s. We were so happy to hear Ben had gained more weight then we originally thought.
We are not sure if we are going to make the switch to U.M. yet but they did have some interesting observations about our case. The doctor told us he is not sure if we have TTTS because our fluid levels have stayed stable. He seem to be leaning toward IUGR but also said we will not know for sure till the babies are born and they can dissect the placenta. To test the placenta, they actually pour milk through it to see if the milk crosses between the vessels. If it does, then this would indicate Twin to Twin.
At this point, no doctor can tell us why we have these discrepancies between the two babies. The doctor at U.M. believes something is causing Ben to lag behind. He told us not to compare the boy’s weights but to rather watch to see if Ben is growing on his own curve. His biggest concern was Ben’s abnormal doppler. Ben’s S/D ratio (systolic/diastolic ratio) is elevated to 7.5. What this means is that his umbilical blood flow is facing more resistance then it should. This is probably an indication of why he is growing at a smaller rate. This finding is also indicative of IUGR and not TTTS. So now our biggest concern is the doppler vs. the weights and amniotic fluid. If its not one thing, it’s another!!!
Where does this leave us now…bed rest, high protein diet, and serial monitoring. Pretty much exactly where we were before. It’s such a mystery and only time will tell how this will play out.
If you get a minute and want to read a wonderfully touching TTTS success story, check out the 2nd link attached to our blog. This family documented their entire journey and it is a great inspiration to us!
Tuesday, July 11, 2006
21 Weeks and 2 Days
Remember how I said this would be a roller coaster…with ups and downs?? Well today is a down for us. We just got back from a 2 hour ultra sound only to find out Ben has only gained about one ounce in two weeks where Jake has gained four. Ben is at 9 ounces and Jake is at 14. This puts them at about a 36% weight discordance. On a positive note, everything else looked good. Ben’s MVP was at 3.8 and Jake’s 7.6. Both are in about the same range, which is good. Both babies are not showing any signs of stress. The TTTS is stable at stage one, which is very unusual. As I have said before, it can progress quickly.
On a side note, when measuring the baby’s weight there is a 10% margin of error. Mothers have reported that they were told their baby’s weight was at one number and then it turned out to be totally different number at birth. To get this measurement, they take about 3-5 measurements including the baby’s head and abdominal circumference and the length of their femur bone. It is just an estimation. So trying to be as positive as possible, we are hoping Ben might be a little bit bigger then what we were told. We are going to UM on Wednesday to speak with them about how they would treat my particular case. I will be interested to see what weights they come up with.
While driving home today, I told Sue that I didn’t want to update my blog because it wasn’t all happy findings today. I was worried I would upset people by telling the truth about today. She encouraged me to be honest and remember why I created the blog in the first place. It’s to inform and educate not only my family & friends but also maybe another family going through this. It would do no one any good to only report the “happy” findings.
Thanks for listening!
Remember how I said this would be a roller coaster…with ups and downs?? Well today is a down for us. We just got back from a 2 hour ultra sound only to find out Ben has only gained about one ounce in two weeks where Jake has gained four. Ben is at 9 ounces and Jake is at 14. This puts them at about a 36% weight discordance. On a positive note, everything else looked good. Ben’s MVP was at 3.8 and Jake’s 7.6. Both are in about the same range, which is good. Both babies are not showing any signs of stress. The TTTS is stable at stage one, which is very unusual. As I have said before, it can progress quickly.
On a side note, when measuring the baby’s weight there is a 10% margin of error. Mothers have reported that they were told their baby’s weight was at one number and then it turned out to be totally different number at birth. To get this measurement, they take about 3-5 measurements including the baby’s head and abdominal circumference and the length of their femur bone. It is just an estimation. So trying to be as positive as possible, we are hoping Ben might be a little bit bigger then what we were told. We are going to UM on Wednesday to speak with them about how they would treat my particular case. I will be interested to see what weights they come up with.
While driving home today, I told Sue that I didn’t want to update my blog because it wasn’t all happy findings today. I was worried I would upset people by telling the truth about today. She encouraged me to be honest and remember why I created the blog in the first place. It’s to inform and educate not only my family & friends but also maybe another family going through this. It would do no one any good to only report the “happy” findings.
Thanks for listening!
Friday, July 07, 2006
20 Weeks 5 days
We just got back from another appointment and we are happy to report that all is well. The boys are still stable and had no signs of stress. Ben’s MVP (Maximum Vertical Pocket) was at 3.4 and Jake’s was at 6.7. No major change!!! Our doctor told us today that it is just a waiting game at this point. As soon as a change occurs in the boy’s condition, we will have to start making decisions. We are obviously hoping it will not get to this point.
If things progress in the next few weeks, we have the option of either serial amnio reductions or laser surgery depending on the severity. Once we get to 25 weeks, the option for laser surgery will be taken away from us. Medical professionals feel at this point the babies are viable and they would actually do better in the NICU then inside of me. I can’t wait to get to this point because then Kevin and I are not going to have to make a very difficult decision. Knowing that Ben is not getting as much of the placenta as he should, laser surgery could cut him off completely. Again, we don’t know this for sure but that is what the doctors are predicting. So as you can see, we just have to wait patiently and pray they can stay stable as long as possible.
Throughout the last three weeks there has been several positive signs that have made me believe God is telling us everything is going to be ok. For example, today I was sitting in the waiting room and a women and her baby came and sat next to me. We started talking and she began to tell about how her sweet little boy was born at 26 weeks. He was 2 pounds and 4 ounces. He was in the NICU for three months and is now home and thriving. Her story brought tears to my eyes and reassurance that this can be done!! Also, yesterday I was having a rough day (I think the bed rest is starting to get to me a bit) and I decided to flip on the TV to take my mind off things for a while. Oprah was on and the topic at hand was “MIRACLE BABIES!” Most of the stories were about multiples too! I felt like God was speaking directly to me!!
The last really weird thing that happened was when Nic and Josh were on their honeymoon they were standing in line at the airport and they started chatting with the people in front of them only to find out they had twins. Well the weird part is that this couple’s twins had TTTS and the husband is a perintologist who specifically deals with TTTS. We ended up getting their phone number and spoke with them at great length about the different options we have. Maybe this is all just coincidence but I choose to believe not. I am very confident we have someone guiding us through this. :)
FYI) We are at my parent’s house now. Its nice to be here and again, we are appreciative of everyone’s help and support!
We just got back from another appointment and we are happy to report that all is well. The boys are still stable and had no signs of stress. Ben’s MVP (Maximum Vertical Pocket) was at 3.4 and Jake’s was at 6.7. No major change!!! Our doctor told us today that it is just a waiting game at this point. As soon as a change occurs in the boy’s condition, we will have to start making decisions. We are obviously hoping it will not get to this point.
If things progress in the next few weeks, we have the option of either serial amnio reductions or laser surgery depending on the severity. Once we get to 25 weeks, the option for laser surgery will be taken away from us. Medical professionals feel at this point the babies are viable and they would actually do better in the NICU then inside of me. I can’t wait to get to this point because then Kevin and I are not going to have to make a very difficult decision. Knowing that Ben is not getting as much of the placenta as he should, laser surgery could cut him off completely. Again, we don’t know this for sure but that is what the doctors are predicting. So as you can see, we just have to wait patiently and pray they can stay stable as long as possible.
Throughout the last three weeks there has been several positive signs that have made me believe God is telling us everything is going to be ok. For example, today I was sitting in the waiting room and a women and her baby came and sat next to me. We started talking and she began to tell about how her sweet little boy was born at 26 weeks. He was 2 pounds and 4 ounces. He was in the NICU for three months and is now home and thriving. Her story brought tears to my eyes and reassurance that this can be done!! Also, yesterday I was having a rough day (I think the bed rest is starting to get to me a bit) and I decided to flip on the TV to take my mind off things for a while. Oprah was on and the topic at hand was “MIRACLE BABIES!” Most of the stories were about multiples too! I felt like God was speaking directly to me!!
The last really weird thing that happened was when Nic and Josh were on their honeymoon they were standing in line at the airport and they started chatting with the people in front of them only to find out they had twins. Well the weird part is that this couple’s twins had TTTS and the husband is a perintologist who specifically deals with TTTS. We ended up getting their phone number and spoke with them at great length about the different options we have. Maybe this is all just coincidence but I choose to believe not. I am very confident we have someone guiding us through this. :)
FYI) We are at my parent’s house now. Its nice to be here and again, we are appreciative of everyone’s help and support!
Tuesday, July 04, 2006
Bed Rest Birthday
July 2, 2006
20 weeks 2 days
I thought this would be the worst birthday ever but I was wrong! Despite the fact that I have aged 50 years in the last three weeks, (I went from having an active full life to playing scrabble, drinking boost, and complaining about lower back pain) it was a very enjoyable day. For one day we forgot about all of the sadness & stress we have endured and just laughed and enjoyed each other’s company. I got very appropriate gifts…pillows, sheets, books, word puzzles, etc. But the best gift was a calendar from Kevin. This wasn’t just any calendar…it was a very special calendar. Each day was covered with color coordinated sticky notes. Under each sticky note was some sort of typed out personal message. The messages are different everyday. Some of them are sweet, encouraging, and even funny. So every morning I wake up I get to peel off another sticky note and read a sweet message from my hubby. Thanks again Kev!!! I just love it!
PS) I have felt a lot more movement from Ben and Jake the last few days.
What a wonderful feeling!!!!
July 2, 2006
20 weeks 2 days
I thought this would be the worst birthday ever but I was wrong! Despite the fact that I have aged 50 years in the last three weeks, (I went from having an active full life to playing scrabble, drinking boost, and complaining about lower back pain) it was a very enjoyable day. For one day we forgot about all of the sadness & stress we have endured and just laughed and enjoyed each other’s company. I got very appropriate gifts…pillows, sheets, books, word puzzles, etc. But the best gift was a calendar from Kevin. This wasn’t just any calendar…it was a very special calendar. Each day was covered with color coordinated sticky notes. Under each sticky note was some sort of typed out personal message. The messages are different everyday. Some of them are sweet, encouraging, and even funny. So every morning I wake up I get to peel off another sticky note and read a sweet message from my hubby. Thanks again Kev!!! I just love it!
PS) I have felt a lot more movement from Ben and Jake the last few days.
What a wonderful feeling!!!!
Friday, June 30, 2006
June 30, 2006
19 weeks and 5 days
Good news! We had another ultrasound today and both babies looked well. One thing they examine at these appointments is the baby’s amniotic fluid level. Normal range for babies is between 3 and 8 cm. A lot of moms with TTTS say that their fluid levels change based on their activity level…that’s why the bed rest is so important. However, the syndrome itself can cause drastic changes.
At our very first appointment, Ben was at 3.0 and Jake was at 7.5 cm. This was there first indication that something was wrong. They really should be about the same for each baby. There should not be such a discrepancy. Well two weeks later, Ben is at 3.5 and Jake is at 7.0. This is really good because they have remained stable if not improved a bit!!! This syndrome can change over night…in either direction. It seems as though once people are diagnosed they almost immediately need a procedure to alter these fluid levels and we have been stable now for two weeks. We see this as a really good sign. Every week we can give these boys increases their chance of a healthy pregnancy and delivery.
We also got to see a 3d/4d ultrasound today and it was amazing. They were so active. They were even interacting with each other. We could see Ben kicking and his feet would come near Jake’s face and Jake would try to swipe his feet away with his cute little hands. This would go back and forth. You could see them yawn, stretch, scratch their head, and do these little dances. I really feel like we already know what their little personalities are going to be like.
Well as we know, this will be a roller coaster and right now we are feeling very good. Kevin had to go to Lansing today for work so he bought the boys their first set of Sparty gear- Michigan State Onesis. :)
Just thought I’d also send a shout out to my wonderful mother-in-law who took me to my appointment today. Sue, you really have been wonderful with taking care of our insurance stuff and helping us make sense of all of this medical mumbo jumbo. We appreciate all of your help! XOXOX
Our next appointment isn’t till Wed. So we are going to enjoy this holiday weekend and just relax!
Have a nice of 4th of July!
19 weeks and 5 days
Good news! We had another ultrasound today and both babies looked well. One thing they examine at these appointments is the baby’s amniotic fluid level. Normal range for babies is between 3 and 8 cm. A lot of moms with TTTS say that their fluid levels change based on their activity level…that’s why the bed rest is so important. However, the syndrome itself can cause drastic changes.
At our very first appointment, Ben was at 3.0 and Jake was at 7.5 cm. This was there first indication that something was wrong. They really should be about the same for each baby. There should not be such a discrepancy. Well two weeks later, Ben is at 3.5 and Jake is at 7.0. This is really good because they have remained stable if not improved a bit!!! This syndrome can change over night…in either direction. It seems as though once people are diagnosed they almost immediately need a procedure to alter these fluid levels and we have been stable now for two weeks. We see this as a really good sign. Every week we can give these boys increases their chance of a healthy pregnancy and delivery.
We also got to see a 3d/4d ultrasound today and it was amazing. They were so active. They were even interacting with each other. We could see Ben kicking and his feet would come near Jake’s face and Jake would try to swipe his feet away with his cute little hands. This would go back and forth. You could see them yawn, stretch, scratch their head, and do these little dances. I really feel like we already know what their little personalities are going to be like.
Well as we know, this will be a roller coaster and right now we are feeling very good. Kevin had to go to Lansing today for work so he bought the boys their first set of Sparty gear- Michigan State Onesis. :)
Just thought I’d also send a shout out to my wonderful mother-in-law who took me to my appointment today. Sue, you really have been wonderful with taking care of our insurance stuff and helping us make sense of all of this medical mumbo jumbo. We appreciate all of your help! XOXOX
Our next appointment isn’t till Wed. So we are going to enjoy this holiday weekend and just relax!
Have a nice of 4th of July!
Thursday, June 29, 2006
June 22, 2006
As you may have heard, we have been blessed with two little boys! Our little baby is Ben (Benedict William) and our big baby is Jake (Jake Francis.) Sadly, they have TTTS (Twin to Twin Transfusion Syndrome.) Thursday June 15th was the worse day of my life. Our ob told us that neither twin would survive with this syndrome. Kevin and I could barely drive home we were so upset. We came home to my in-laws house and just cried our eyes out for hours mourning our little boys. We then decided to pull it together and stop mourning babies that had not yet passed away. We thought there has to be something that can be done. This is when our intense research begun.
For the last two weeks we have been reading medical journals, looking on-line, and talking with doctors all over the country about different treatment options. What we have come to find out is that our boys do have a chance at survival. Our ob knew little to nothing about this syndrome. She did not even know about treatment options for TTTS.
We found this wonderful website/organization that we feel has changed our entire outlook on the syndrome. Its called TTTSfoundation.org. It gives us so much hope for our little ones. We are not giving up on them and continue to think positive. As I have said before, God will only give us what we can handle. I know I was meant to be pregnant with these babies and bond with them. We just want to do everything in our power to save them. Our entire life right now is dedicated to these babies. As you may have heard, I am on bed rest and a high protein diet. It is going to be a very long road but I am ready for it.
Our doctor is sending us to Cincinnati Monday to see a specialist there to get some extensive tests done. We will be there most of the week. I think we will know a lot more after next week. The good news is after our appointment last Monday both babies grew an ounce and their fluid levels improved. I really think it is directly related to the bed rest and diet. They really are so sweet. They sure are active little ones..I think we are going to have our hands full! :)
June 29, 2006
We got home last night from Cincinnati’s Children’s Hospital where we saw Dr. Crombleholme and his staff. His staff sees 3-5 cases of TTTS a week compared to Beaumont who sees 3-5 a year. So after two long days of testing (a 2 hour MRI-that was fun, an eco., ultrasounds, etc.) we now have a better understanding of where we stand. I would love to tell you that we came home with good news, but sadly TTTS was confirmed in addition to IUGR (Intra Uterine Growth Restriction) also known as uneven placental share. What that means is that Ben is not getting his share of the placenta. Jake may be getting up to 70% and Ben only 30%. We will not know exactly how much each twin is getting until they are born. The uneven placental share does complicate the TTTS. However, a lot of TTTS cases also struggle with this same issue, they seem to go hand in hand.
The good news we got is that structurally these boys are fine. This is a problem with their environment (the placenta,) not them. They have no birth defects that can be detected and their brain and heart scans came back good. However, they are showing early signs of TTTS and IUGR. These two complications are very unpredictable and can cause problems, as we know. The doctor told us this will progress for the worse. However, with monitoring and treatment, both or one baby has about an 85% chance of survival. We were happy to hear this..seeing as how two weeks ago we were told they didn’t have a chance at all. We just have to hope they can both hang on as long as possible and continue to grow. That is why I am on the bed rest and boost. We want to optimize their chances by giving them everything they need to grow and develop as quickly as possible. It is a guarantee that we will deliver early and these babies will be pre-mature. So now it is a race to the finish line.
While sitting in the team meeting with doctors, nurses, and counselors, listening to this information, I felt so overwhelmed. Kevin and I just stayed very strong and took in all the information we possibly could. It was so hard to maintain my composure and not break down and cry. Sometimes I just can’t believe this is happening to us. I know everything happens for a reason..I just haven’t figured this one out yet. I know God has a plan for our family and he will guide us through this difficult time. We remain very hopeful and positive. We know we are doing everything in our power to save our little ones. We believe there will be a positive outcome but also know it’s going to be a long and stressful journey.
TTTS and IUGR are both very unpredictable. Each week we get through is another huge milestone. We will be seeing doctors several times a week and continuing with bed rest and boost. Kevin, Bill, and Beth have been taking very good care of me. I am continually amazed at my wonderful husband. He is so supportive and dedicated. His determination inspires me.
I also want to say thank you to our family and friends. Your kind emails, cards, and phone calls are really encouraging. I hope this blog will keep you posted throughout our journey.
Please continue to keep Ben & Jake in your prayers.
XOXOXO Danielle & Kevin
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