21 weeks pregnant with twin boys who may have TTTS

Trisha - posted on 08/29/2011 ( 47 moms have responded )

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I'm 21 weeks pregnant with twin boys and the doctors think they may have twin to twin transfusion syndrome. However none of my doctors have suggested bed rest but I keep reading about women being put on bed rest and everyone except my doctors are telling me I should quit work. I see my new doctor a maternal- fetal medicine specialist tomorrow and am going to ask him whether I should continue working or not. I just want some more feed back what does everyone else think. I want to do the right thing for my babies so they have a chance.

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Amy - posted on 09/17/2011

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You WILL make it to December Trisha and we will all be here to support you until then (and beyond I suppose :)) Seriously be positive it makes all the difference. Everything is going to be ok.

Crystal - posted on 09/17/2011

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I found out, for sure, that I was having twins @ 16 wks. I knew nothing about TTTS, never heard of it until @ 29 wks I had an emergency c-section b/c of it. It was never mentioned to me by anyone! I am obviously not happy about this but my identical twin girls who are miracles are healthy and 18 mo. now = ) Good luck! O, btw, I was never put on bed rest of course since they were taken once they realized I had TTTS. I didn't even have a choice of the laser surgery/treatment that they have for this

Karla - posted on 08/29/2011

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I think doctors can really stress you out sometimes. When I first found out I was having twins, they told me there was no membrane for weeks! I finally found out just a few weeks ago when I seen my maternal fetal medicine specialist. My twins are showing no signs of TTTS yet. They're the same weight and have the same fluid amounts, so I'm hoping for the best. Keep your head up! Things will be okay (:

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Natasha - posted on 12/28/2011

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congratulations glad to hear that everything went ok and mum and babies are doing well.

Grace - posted on 12/25/2011

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Yay! So glad it all turned out so well for you! My birthday is actually on Dec 20th too! :) I'm so glad ya'll all got to be home for Christmas and did so well and they only had to be in NICU for short time. My girls were taken at 34 weeks and they each had to be in NICU for 3 weeks they got to come home together but it was a rough 3 weeks! You are very blessed! Congrats! :)

Amy - posted on 12/24/2011

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Yea yea yea! I was actually thinking of you yesterday and hoping you would update us! Aren't you glad the whole pregnancy thing is over! I am so happy your little guys are home and doing well. Now just enjoy them :)

Trisha - posted on 12/24/2011

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Just an update... I had my c section on Tuesday December 20 It wasn't nearly as scary as I thought it would be. I was in the hospital until friday December 23 and my bigger baby Brock Ganon was able to come home with me. Today December 24 our other twin Ash Fenix was able to come home. During the hospital stay Brock was in the NICU for a day in a half due to some breathing issues and what they thought they heard a heart murmur. As issues were resolved with him though. Ash was in the newborn nursery with low glucose levels and had to have an I.V attached to his forehead. Since getting out of the hospital he's been eating very well.... They both have. It was a great Christmas present to be able to have both of my twins home for their first Christmas.

Natasha - posted on 12/09/2011

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That's excellent news. Good luck with the arrival of your twins, hope all goes well and what an early christmas present for you.

Amy - posted on 12/03/2011

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Wow that is so great! Think of how far you have come, you must be so relieved to know that at this point they can come safely at any time :) That is so wonderful, Merry Christmas to you and yours :)

Trisha - posted on 12/02/2011

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Not too bad. The TTTS hasn't progressed much and the babies fluid levels have increased. I'm at 34 weeks now. They have a c section planned for me at 37 weeks and one day which puts me at December 20. So they'll be close to Christmas babies.

Natasha - posted on 10/27/2011

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When my twin boys were born they were 36 weeks and 4 days. twin two had to have a little bit of oxygen and both twins had to stay in hospital for two weeks before we could bring them home. It was not the NICU as they were not that serious but it was a couple of levels down as they were having problems feeding and had to be feed by a tube through their noses. Twin two was 5lbs 7 and twin one was 5lbs 2.
Hope all goes well for you and your babies.
Even though I do not post alot but I do read your posts often to see how things are going.

Natasha - posted on 10/27/2011

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When my twin boys were born they were 36 weeks and 4 days. twin two had to have a little bit of oxygen and both twins had to stay in hospital for two weeks before we could bring them home. It was not the NICU as they were not that serious but it was a couple of levels down as they were having problems feeding and had to be feed by a tube through their noses. Twin two was 5lbs 7 and twin one was 5lbs 2.
Hope all goes well for you and your babies.
Even though I do not post alot but I do read your posts often to see how things are going.

Trisha - posted on 10/21/2011

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Thanks for the encouraging thoughts Amy and Ann. I'm staying positive hoping that everything comes out well with my twins. At this point I think they will especially if I can make it that long. I don't know if they'll still have to be in the NICU. I know they won't be 6 or 8 lbs. I'm hoping for them to be 3, 4 or 5 lbs. Even if they do have to stay in the NICU I'm hoping for it to not be a long stay.

Amy - posted on 10/21/2011

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I made it to 34 weeks with my girls and they were born at 4lbs each but super healthy and didn't need oxygen or anything. Sounds like you are doing everything right, eating a lot of calories, resting and being positive :) Just can't wait until you tell us your little ones are here. You will be busy so I hope you are prepared :)

Ann - posted on 10/20/2011

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Trisha- great to hear all is going well :) If you go to 34 or 35 weeks do you still have to have the babies go to the NICU ?? Sounds very encouraging for you and the babies. Wishing you well in your home stretch

Trisha - posted on 10/19/2011

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Not too bad Amy, I'm still hanging in there. The twins are still doing well. I'm trying to up my calorie intake in hopes that it'll help the small baby catch up. The dr think that I can make it to 34 or even 35 weeks. Which sounds great to me. However, I just found out I'm going to have to find a new high risk ob for my delivery. I guess my current dr is retiring or something come November.

Ann - posted on 10/09/2011

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Good luck to you Trisha. I'll be thinking of you. Feel free to ask questions. One thing that helped me was setting up a carepage for our twins. It served to inform family and to help me journal.

Trisha - posted on 10/08/2011

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I'm not doing too bad Ann. In my 25th week through all the tests and dopplers and ultrasounds the dr said my twins were doing better and over all my placenta was working better for both of the twins. The last time they were measured which was that same week they were measuring at 1lb 3 oz and 1lb 9 oz. so they are both over a pound now. Also in my 25th week it was found that I was having mild contractions. The dr put me on medication for that and now going into my 27th week the dr says I can go down to one dose a day. Other than that physically I've been doing pretty good. The dr says that my cervix is still measuring very good and he seems pleased with the results.

Trisha - posted on 10/08/2011

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I'm not doing too bad Ann. In my 25th week through all the tests and dopplers and ultrasounds the dr said my twins were doing better and over all my placenta was working better for both of the twins. The last time they were measured which was that same week they were measuring at 1lb 3 oz and 1lb 9 oz. so they are both over a pound now. Also in my 25th week it was found that I was having mild contractions. The dr put me on medication for that and now going into my 27th week the dr says I can go down to one dose a day. Other than that physically I've been doing pretty good. The dr says that my cervix is still measuring very good and he seems pleased with the results.

Ann - posted on 10/04/2011

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Trisha - I'm not sure where you are now but I noticed you posted less than 2 weeks ago at 24 weeks. My daughters were born at 26 weeks because of TTTS and the recipient twins heart was not functioning properly. Here is my encouragement to you... Although we had a roller coaster ride in the beginning it slowly got better. Now I have two healthy happy energetic 3 yr olds. It is scary to have preemies but there are two great reasons to hold on to hope!!! Yet the early gestational age does cause some challenges for some kiddos. All I can say is that my son who was full term is a special need kid. And he is worth the extra efforts I must put into him!!

Jana - posted on 09/22/2011

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Thanks for understanding, ladies. I know my situation is probably different than a lot of the ones on here. TTTS sucks and I hope you and your babies show it who's boss! My little guy is doing alright...he has been in the NICU for 3.5 months and we are SO ready to get him home, but it doesn't look like that is going to happen quite yet. Thank you for asking! Keep those babies in there as long as you can Trisha, even if it means bedrest! Bedrest sucks, but I would do it all again in a heartbeat :)

Amy - posted on 09/22/2011

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Jana,
Sorry if I made you feel as though you said something offensive that isn't the case. I was simply trying to encourage Trisha who I am certain knows the risks and is very aware and trying to stay positive. Sorry about your experience. How is your LO in the NICU doing?

Jana - posted on 09/21/2011

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Ok, I think that post was taken a little differently than I intended. Of course you need to stay positive, that is one of the best things you can do! The what ifs will drive you crazy, I know because i've been there. As long as you are aware that this can be a really serious thing for your babies and if you ever feel like something isn't right, tell your drs. Everybody gave me the "dont worry everything will be fine" and it wasn't. I hope in your case that that's true though. Thinking of you and your babies!

Amy - posted on 09/21/2011

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Trisha,
Yea! You should be excited and positive don't let any negativity bring you down. Thinking about the what-if's will do that, you got this :) Just think how far you have come since your original post :)

Trisha - posted on 09/21/2011

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Jana, that was the first thing I did when the Dr initially told me about my twins having TTTS. I do realize thing can change quickly with this condition. But I was diagnosed at 21 weeks officially and since then it hasn't even been considered as severe and then yesterday my Dr. said that thing were looking ALOT better since the week before. I know about the surgeries amnocetris (sp?), I may not express it really but I have done as much reading as humanly possible on this subject. I'm at 24 weeks and three days into my pregnancy. And any good news I get I will be happy about. I do realize that just because it has gotten better doesn't mean it couldn't still get worse. But I've got to stay positive because being negative is not going to get me anywhere.

Jana - posted on 09/21/2011

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I was diagnosed with TTTS at 20 weeks and I was put on bedrest. But I also was having contractions and my cervix was shortening. I was sent to see a high risk OB and had ultrasounds every week. At 22 weeks I was admitted to the hospital and delivered my boys at 25 weeks. They were delivered because of the TTTS. The amounts of fluid that my boys had went back and forth quite a bit. One week they would look and it would be fine and the next they would be way different. I had 2.5 L of fluid removed from my belly at one point. Our TTTS seemed to progress fairly quickly and we delivered the boys at 25 weeks because my Baby B was developing fluid around his heart and lungs. Sadly, Carter (Baby B) didn't make it and my Baby A is still in the NICU after 3 months. I dont want to scare you, but this really is a serious thing so please, look up the TTTS foundation and ask your Dr lots of questions. I hope you all turns out well for you!

Amy - posted on 09/21/2011

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Yeah I am having a party here for you too! I had a scary pregnancy after having 3 miscarriages so I know how it feels to be completely terrified and your post made me feel for you! Positive thinking, positive thinking! Oh yeah and take care of yourself rest, read, be lazy and make others help you :)

Trisha - posted on 09/20/2011

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Finally good news about the babies. They seem as though they are catching up to one another in measurements. The Dr said that my blood pressure weight gain and all of that look good at this point. He also said the placenta issues have improved since last week. My placenta is working better for both of the babies now. Yay, I feel like having a party... I feel I'm doing something right!

Trisha - posted on 09/18/2011

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Thanks Amy, I'm think doing ALOT better at staying positive. I haven't really been feeling sick or anything myself lately just kind of the normal things you'd get from any pregnancy. I have to think as long as I feel healthy then something is going right.

Trisha - posted on 09/17/2011

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I'm sorry to hear about your troubles with your twins. That's a shame they didn't inform you of what was going on. I don't understand how a medical professional could get away with that. Fortunately even though my high risk dr is not an expert on TTTS, he seems to be fairly knowledgable about the subject. And everything he has said so far makes ALOT of sense. I'm hoping it doesn't get that far for me. Im hoping to make it as long as possible without them having to do an emergency c section. I'll be happy if I make it to November, December would be even better.

Trisha - posted on 09/16/2011

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I was also wondering about the sex thing. I haven't had any Dr's say I shouldNt have sex. But I also haven't had them say anything about having sex. Really at this point I could do without actual intercourse but some stimulation would be nice.

Trisha - posted on 09/16/2011

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It wasnt bad, this time they paid ALOT more attention to the vital organs and placenta and they took scans of the connecting blood vessels. Both of the babies are still taking in blood and other liquids and producing urine and the dr said those are good signs. The TTTS is still going but is still not at a sever stage. I'm hoping that we just keep towing the line and it never makes it to the severe point. As for me everything has been healthy with me besides the normal side effects of being pregnant and they think I may have a bladder infection but I've had those before and know how to remedy that. I've put myself on a high protein diet and am drinking three boost shakes a day as suggested by many people. Also I have not had any preterm labor symptoms or contractions or even Braxton hicks contractions and my cervix is still measuring normal for how far along I am. So I also take those all as good signs and am hoping to be able to keep the babies in me til December. My estimated due date was set to be January 9th, I know I'm not making it that far. I'm staying positive and have to believe everything will turn out ok.

Trisha - posted on 09/12/2011

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Thank you all! So far I'm going to be monitored by ultrasound every other week. I went 2 weeks ago and was officially diagnosed with TTTS. The last time I went to the dr he said they were measuring at 14 oz.and 10 oz. In-between those 2 weeks I have had one full week off of work and have been resting as much as possible. Not bed rest but limited activity. I have also been drink the high protein shakes as I've seen ALOT of people recommend. I go to the Dr. Again tomorrow hopeful it is better or has come to a stand still. I am in touch with Mary from the foundation and this time around talking to the Dr hopefully I'll be more knowledgeable and be and be able to ask the right questions. Thank you all for your helpful comments and advice.

Wendy - posted on 09/12/2011

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Hi Trisha, I would highly recommend bed rest. I had TTTS with my twin girls and found out at 17 weeks. none of my doctors were recommending bed rest either, I laid on my couch for almost 6 months and thankfully was blessed with two healthy baby girls. there is a foundation. the twin to twin transfusion foundation. contact them. they are extremely helpful. spent time with me on the phone, sent me information in the mail and got me in touch with doctors in other areas of the country that were much more knowledgeable than the ones in my area. best of luck to you and your babies

Natasha - posted on 09/06/2011

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I was 19 weeks when I was diagnoised with TTTS. I had to have lazer surgery if the boys were going to have any chance of survival, which they did and have just turned 8 years old in August. They both did have to see a speach therapist for a while and even though there are 8 there speach is still not very clear especially if they get excited about something but besides that they are like any other child at that age.
I gave up work when I found out that the twins had TTTS but as for bed rest I did not have to do it. The only thing I was told it to be careful and do not over do it. I delivered the boys by c-section just over 36 weeks and they spent 2 weeks in hospital at they were having trouble eating.
It is a good idea to contact the TTTs group and to ask your doctor all the questions you can think of.
I hope everything turns out ok and I will be thinking of you.
Please contact me if you need someone to talk about what you are going through. Good luck

Candi - posted on 09/03/2011

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BTW, look up the TTTS foundation now. They'll send you a packet of information on what to expect after you give birth and they have a lot of information on how to survive the pregnancy and what to look for. I should note that one of my boys has a mild case of Cerebral Palsy, which could be due to the TTTs or one of the two infections he had in the NICU, or the difficulties that doctors had hooking up to oxygen when he came out. It's great to be prepared, but do know that TTTS is survivable in some cases. My guys are 3.5 now, and they're in preschool and doing very very well.

Candi - posted on 09/03/2011

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My boys survived a TTTS pregnancy just fine, and I never did bed rest. I did do reduced activity, but even with that, I still floated in the pool every day up until the day I was incarcerated in the hospital with them. Eat a LOT of protein, as this will, surprisingly, help to balance out the fluid. And be sure your doctor has you doing ultrasounds every week or every other week. My doctor went a month between ultrasounds, and that was the time when everything went wrong, leading to me being incarcerated in the hospital at 30 weeks having an emergency C-section two days later. Monitor, monitor, monitor!

Heather - posted on 09/02/2011

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My babies were diagnosed with TTTS, and one had less fluid and was smaller, they were in two sacks. It was kinda up and down for a while, ultra sounds every week and sometimes every 3 days. At one point I thought I would have to have surgery ther was a 20% disperity. Then something happened and they seemed to work it out amongst themselves. my fluid levels got better and the stck baby started moving around. By the time they were born at 33 weeks there was only a few ounces diffrence. They are one now and there is one pound and one inch diffrence. When they looked at my placenta they could see it was an 80/20 share. Some how the little baby Bella fought back and gained weight. Keep the faith, I did a lot of praying and believing they were ment to be here! The TTTS foundation was a great resource for me and yes I went on bed rest at 21 weeks, but I also had preterm labor.

Believing
Heather

Trisha - posted on 08/29/2011

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Thanks Kim! When they initial thought it was TTTS which was last week when I was at 20 weeks was the first time TTTS was ever mentioned. Before that it was believed they were in one sac even. At my 20 week ultra sound they were measuring at 11oz. and 9 oz.. The smaller baby was in fetal position while the bigger one was spread out all across my lower abdomen. I'm suppose to be getting an ultrasound every week and they have transferred all my care to a maternal- fetal medicine specialist. I got for my first visit with him tomorrow. I'm hoping things have somehow improved.

Kim - posted on 08/29/2011

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My boys didn't have TTTS, but one was always over a a pound smaller than the other. I have read from other moms' posts on here about their twins being about a lb smaller than the other and being diagnosed with TTTS. How much is the weight difference? I think they will just keep a more watchful eye on your babies, I don't think bed rest can prevent TTTS. But i'm no doctor so who knows. One of my twins had a single artery umbilical cord so he continuously got less nutrients than his brother, and was always smaller and still is! Ask all the questions you need to so that your mind can be at ease. You should be getting at least one ultrasound a week, which should be sufficient to make sure your babies are healthy and growing. Trust your doctors, more than likely they will have the best advice for you.

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