Our babies have TTTS

I'm pasting this from another board bc I don't feel like typing it out again. Please keep us in your P&PT. Thanks.

I guess I should have been worried after all. The tech was terrific and gave us more information than most would have. I told her I was familiar with this and that since I just did my OB rotation and she just kind of spilled it from there. As of right now both babies are well. They are measuring 5 days apart. At my u/s at 10wks they were measuring two days apart and were 5 and 7 days behind my due date. This time one is measuring right on my due date and the other is 5 days behind. So essentially things are still good. I was so out of it that I didn't ask specifics about the bladder but she said both looked like they were doing very well at the moment. The tech used to work for a MFM (maternal-fetal medicine specialist) so was very thorough with the scan. I sealed my lips and waited for the doc to come in.

Doc comes in and gives us the rundown of what is happening while DH and I pretend we had no idea. They have decided to transfer all of my records to a MFM and are trying to get me in with that specialist by next week. I will no longer be seeing them and will only be dealt with by the peri.

There is a big discrepancy between the fluid volume of the babies. The membrane is laying right on top of Twin A (our donor). The fact that it has already started is what is most concerning bc it's not like they can just take the babies now. I need at the very least 10 wks, and to be honest, I've seen 24 and 26 wkers. It's a very scary journey. If we can get 14 more wks with two healthy babies then it will be a miracle. They do happen so I am putting my faith in God's hands that He will help us through this.

There is a positive side to this and that is that we were diagnosed early. Even though it's not what you want to happen this early, some ppl have no idea until it's too late and don't even have an opportunity to try to treat it. I'm holding on the the hope that we are going to eventually bring home these baby GIRLS bc right now they are fighting. We'll know more once we meet with the peri. There are only two in the area (and I live in a pretty big area!) but one is renowned--hopefully we get in with him. This is a part that I didn't add to my original copied post, but I live w/in 45 minutes of the MFM who developed the fetal laser surgery for TTTS. My OB is trying to get me in with him. I could really use some prayers for that, too, please.
So, if you could continue to pray for us or do whatever it is that you do we would very much appreciate it. This is very sad for us, but I told DH that I just want to be excited for now that we have, as of now, two healthy baby girls. Thank you and have a Merry Christmas.

 

I don't have any experience with TTTS but you and your girls will be in my thoughts. Please keep us updated.

 

I'm so sorry to hear that your girls have TTTS. There is a great place of support called the TTTS Foundation - they have a message board for "During Pregnancy" filled with women who have a lot of information, experience, and stories of their TTTS survivors, you should check it out if you haven't already:

www.tttsfoundation.org

You all are in my thoughts and prayers. :hug:

 

I was diagnosed at 18 weeks with TTTS and by 28 weeks I had a stuck twin with no visible bladder and was hospitalized. I was too far along to qualify for the surgery. I was an impatient for a month and I had 3 amniotic fluid drains. Finally they tore a hole in the seperating membrane. I know how scared you are and I will be praying for you guys every day. I also work in the OB field and you are right, 24 and 26 weekers have a long journey but it is awesome that you have great specialists near you and you are educated. That, along with all of our prayers, will get you there! God bless!!

 

QUOTE(mama23boys @ Dec 24 2008, 11:48 PM) [snapback]1121803[/snapback]
I'm so sorry to hear that your girls have TTTS. There is a great place of support called the TTTS Foundation - they have a message board for "During Pregnancy" filled with women who have a lot of information, experience, and stories of their TTTS survivors, you should check it out if you haven't already:

www.tttsfoundation.org

You all are in my thoughts and prayers. :hug:



I've not been there yet but thank you, I'm definitely going to check it out.

 

WaterGuzzler - just wanted to say that at my 11wk scan my mono/di twin B was "stuck" and measuring a few days behind. The docs all thought it was TTTS. We are now at 25 weeks and B is 3 weeks behind but my girls have not developed TTTS. B has selective IUGR but A is doing well and we think they both will make it at least another few weeks in utero, if not longer. It is not necessarily all downhill from this point on!

Hoping you get the miracle you are wishing for. Glad to hear you are in good hands.

 

QUOTE(hrm17 @ Dec 25 2008, 08:41 AM) [snapback]1121948[/snapback]
WaterGuzzler - just wanted to say that at my 11wk scan my mono/di twin B was "stuck" and measuring a few days behind. The docs all thought it was TTTS. We are now at 25 weeks and B is 3 weeks behind but my girls have not developed TTTS. B has selective IUGR but A is doing well and we think they both will make it at least another few weeks in utero, if not longer. It is not necessarily all downhill from this point on!

Hoping you get the miracle you are wishing for. Glad to hear you are in good hands.


That really helps to hear. Thank you so much. I wish your babies well and can't wait to hear about BOTH of them after delivery.

 

QUOTE(momof5 @ Dec 25 2008, 05:54 AM) [snapback]1121919[/snapback]
I was diagnosed at 18 weeks with TTTS and by 28 weeks I had a stuck twin with no visible bladder and was hospitalized. I was too far along to qualify for the surgery. I was an impatient for a month and I had 3 amniotic fluid drains. Finally they tore a hole in the seperating membrane. I know how scared you are and I will be praying for you guys every day. I also work in the OB field and you are right, 24 and 26 weekers have a long journey but it is awesome that you have great specialists near you and you are educated. That, along with all of our prayers, will get you there! God bless!!


Thank you for your prayers. As scared as I am, there is this sort of odd peace I have about it. I'm still petrified and worried that one or both won't make it, and I still break down in tears on occasion, but overall I'm handling it pretty well. I'm not sure if it's the "peace" or if it's just being numb. Maybe a little of both. I'm thankful that I am so close to qualifying gestation-wise for the surgery. I just pray that we will be able to try it if it's one of our options. We'll know more next week.

:hug: to you.

 

Although we didn't have TTTS, our girls were born at 2lb4oz and 4lb4oz at 33w6d. Our size discrepancy was due to poor cord blood flow on baby A and we thought we were going to have to deliver at 27 weeks. I went on hospital bed rest to monitor the girls and we held out for 7 weeks. I say all of this just to let you know that it is possible. Both my girls (mono/di by the way) are in the level 2 NICU now as feeder/growers only. No respiratory, no cardiac, feeding tubes only. And our 2 pounder NEVER needed any help other than nutrition.

I see you are in Florida. We are in NW Florida and I loved our doctors. What area are you in?

 

Im sorry to hear about your TTTS. We hope that what we say will give u just that little bit more faith to carry on.

Here is our story. We are 17 years old and we were born 16 weeks premature.. We also had TTTS - (Stage 2 Surivors). Although we were really premmie, we have made it. You are so blessed to know this early on. Our parents didnt know till birth that we had it.. and the doctors never explained to our parents that it only happens to Identical Twins sharing a placenta.. We were so early that our Mum only had one ultrasound while pregnant with us.. and thats when she found out she was having twins, thats all she knew. We didnt make it to a second Ultrasound. Our parents didnt know all the stats about Placentas, Sacs and such. We always believed we were Identical but it never occured to us to research about TTTS, until we came to this twin board. It is only until recently that we found out that we are Identical, after reading about TTTS. It has been a long and hard journey for both of us and our parents, but we wouldnt have it any other way. And because of TTTS my twin Alisha (was diagonsed with asmatha, as she was the reciever and was recieving too much blood.) And I was diagonised with Cerebral Palsy at 2 years old.. as I was the donor and wasnt recieving enough.. although its only mild.. i feel so lucky to be so blessed.

After finding out all this, our story that we have been told by our parents makes so much sense. If u need to talk we are here.. stay strong.. you are sure blessed to have great technolgy too suceed with your beautiful little girls.. we know u can make it, we did! :hug:

 

QUOTE(TwinsInFL @ Dec 26 2008, 01:07 AM) [snapback]1122222[/snapback]
Although we didn't have TTTS, our girls were born at 2lb4oz and 4lb4oz at 33w6d. Our size discrepancy was due to poor cord blood flow on baby A and we thought we were going to have to deliver at 27 weeks. I went on hospital bed rest to monitor the girls and we held out for 7 weeks. I say all of this just to let you know that it is possible. Both my girls (mono/di by the way) are in the level 2 NICU now as feeder/growers only. No respiratory, no cardiac, feeding tubes only. And our 2 pounder NEVER needed any help other than nutrition.

I see you are in Florida. We are in NW Florida and I loved our doctors. What area are you in?


Once again I'm so happy to hear that your babies are doing so well! It amazes me

I'm actually VERY near Dr. Quintero. We are trying to get in to see him but my OB/MWs are the ones making the calls to him and another specialist in the area that doesn't do the surgery. I did, however, email him last night. I may even try calling as well.

 

QUOTE(Brizzy_Twins @ Dec 26 2008, 03:32 AM) [snapback]1122250[/snapback]
Im sorry to hear about your TTTS. We hope that what we say will give u just that little bit more faith to carry on.

Here is our story. We are 17 years old and we were born 16 weeks premature.. We also had TTTS - (Stage 2 Surivors). Although we were really premmie, we have made it. You are so blessed to know this early on. Our parents didnt know till birth that we had it.. and the doctors never explained to our parents that it only happens to Identical Twins sharing a placenta.. We were so early that our Mum only had one ultrasound while pregnant with us.. and thats when she found out she was having twins, thats all she knew. We didnt make it to a second Ultrasound. Our parents didnt know all the stats about Placentas, Sacs and such. We always believed we were Identical but it never occured to us to research about TTTS, until we came to this twin board. It is only until recently that we found out that we are Identical, after reading about TTTS. It has been a long and hard journey for both of us and our parents, but we wouldnt have it any other way. And because of TTTS my twin Alisha (was diagonsed with asmatha, as she was the reciever and was recieving too much blood.) And I was diagonised with Cerebral Palsy at 2 years old.. as I was the donor and wasnt recieving enough.. although its only mild.. i feel so lucky to be so blessed.

After finding out all this, our story that we have been told by our parents makes so much sense. If u need to talk we are here.. stay strong.. you are sure blessed to have great technolgy too suceed with your beautiful little girls.. we know u can make it, we did! :hug:


Thank you for sharing your story, Tamara. I watched your video--you two are adorable and look like you love each other so much. Aren't sisters great? You definitely have a positive outlook on life, although I don't see any reason why you shouldn't. Thanks again for sharing. Every story helps.

 

Sorry to hear this. That must be scary, but it sounds like you have such a positive outlook. You'll be in my prayers; keep us posted! Praying for two healthy little girls.

 

I am just getting into my second trimester and still learning about all that can happen in a twin pregnancy So I dont have any experience to give you but you all are definatly in my prayers! Good Luck and as hard as it can be stay positive!

 

I'm sorry to hear this. :hug: But I'm glad they are keeping a close eye on you. Keep us posted.

 

QUOTE(WaterGuzzler @ Dec 26 2008, 08:15 AM) [snapback]1122275[/snapback]
Thank you for sharing your story, Tamara. I watched your video--you two are adorable and look like you love each other so much. Aren't sisters great? You definitely have a positive outlook on life, although I don't see any reason why you shouldn't. Thanks again for sharing. Every story helps.

Thats nice, yes we are very close and love eachother more than anything else. They are great and i couldnt imagine it any other way. I am pretty postive but the bullying and stuff gets me down sometimes with my CP.. but thats just normal i guess Im glad I could help. Keep us posted.

 

QUOTE(Brizzy_Twins @ Dec 26 2008, 11:10 PM) [snapback]1122840[/snapback]
Thats nice, yes we are very close and love eachother more than anything else. They are great and i couldnt imagine it any other way. I am pretty postive but the bullying and stuff gets me down sometimes with my CP.. but thats just normal i guess Im glad I could help. Keep us posted.


Hey, sweetie, I got bullied before bc I was blonde. They will find anything they can

 

yeah thats true.. i hate it.. it really tears u apart both emotionally and physically.. but its so great having alisha cause she hurts them back if they hurt me.. like they try tripping me up stairs and stuff.. and alisha turns round and punches them for it.. But its gonna be harder now cause we just graduated high school this year.. so its going to be a challenge not having each other around as much.. but thats part of life i guess. I dont understand what people get out of bullying people. The only way most people can tell us apart is the way i walk... other than that they dont have a clue. Good luck with everything!

 

I just saw that your docs are talking to Dr. Q. You need to call them (can google Dr. Q. and get the USF number). That's how I did it. They take calls from people around the world. They will definitely make room for you!

I'm in Chicago for a funeral this weekend, but lets try to get together for lunch this month!