TTTS

I was diagnosed as having TTTS yesterday - anyone else here been diagnosed? If so when, and how are they handling it? I'm scared to death of losing one or both of these babies!!

 

I don’t have it… but my Peri warned me about it… mine share a placenta… I know a few moms have some great success stories regarding TTS here on this site… my Peri told me they have come soooo far on surgeries that can make a world of difference should they discover TTS on me… and it sounds like your going to the best out your way… I have a feeling it will be all right for you :hug99: …

 

I don't have any experience with it, but I wish you and your babies all the best.

 

My doc warned me about it too. Good luck and keep us posted!

 

We had TTTS with our twins.

I would recommend going to the TTTS foundation website and contact Mary - also get on the message boards there and ask for help. There are LOTS of people with lots of different experiences there who can help you.

I was diagnosed at 16-18 weeks. My smaller baby was a week behind the other and had NO fluid. The other baby had normal fluid. Bladders were visible, but the smaller baby had absent end diastolic flow in the cord doppler. I also contacted Dr. Delia in Milwaukee and Dr. Quintero in Tampa - their staff is very helpful as well. We never qualified for the placental laser ablation surgery (seal off connecting vessels) because my recipient never has excess fluid. However, I went on bedrest at 17 weeks, and drank 3 high protein Boost drinks a day (slowly, throughout the day). My fluid levels stabilized by 22 weeks. The babies stayed stable until I delivered last week at 38w4d. Both babies came home with me, which is a miracle. I am a big believer in bedrest, now. So is my peri. She told us that our prognosis was poor, which we knew from our research, but we did not give up. You are the best advocate for your babies. Get to a peri that will help you. Contact the foundation and get the info. You can do this. There is lots of support out there.

PM me anytime. I know this is a roller coaster. Losing one or both of my babies was just not an option for me. I did everything I could (including 21 weeks of bedrest). I celebrated every milestone, starting with 24 week viablility. I had a party, literally, when I hit 28 weeks. Preemie I could handle, losing my babies I would not.

Hugs to you - sorry for your diagnosis - I would not wish this diagnosis on anyone. But you can do it.

Jenny

 

Don't have it but wanted to send you hugs and my support.

Dianna

 

We were never sure until after the birth, but had problems with IUGR. It's such a roller coaster and very scary. I'm sorry you have to go through this. NOw I look at my little ones dumping all their toys out across the living room and I can't remember what it was like to worry like that every minute. :hug99:

There are lots of moms on this board with little TTTS survivors; take comfort and hang in there!

 

QUOTE(DblOsbornes @ Dec 5 2007, 08:48 AM) [snapback]521474[/snapback]
I was diagnosed as having TTTS yesterday - anyone else here been diagnosed? If so when, and how are they handling it? I'm scared to death of losing one or both of these babies!!


*hugs* I have been keeping an eye on it since I found out I'm carrying ID twins. I've had to fight for a lot of things to be sure I got the right monitoring and such and it's still a battle. At almost 33 weeks though, there is still no sign and since they are both breech and haven't turned in months - I'm being scheduled for a c-section at 37 weeks. the TTTSfoundation.org website is so great, and they have a forum on there. Also, Mary will personally email you back and send you information to arm yourself with. I'm so sorry you have to deal with this on top of just plain being a momma with twins in her belly and worrying enough as it is. Just remember, you are their best advocate.

 

QUOTE(Bernice @ Dec 6 2007, 04:59 AM) [snapback]522856[/snapback]
*hugs* I have been keeping an eye on it since I found out I'm carrying ID twins. I've had to fight for a lot of things to be sure I got the right monitoring and such and it's still a battle. At almost 33 weeks though, there is still no sign and since they are both breech and haven't turned in months - I'm being scheduled for a c-section at 37 weeks. the TTTSfoundation.org website is so great, and they have a forum on there. Also, Mary will personally email you back and send you information to arm yourself with. I'm so sorry you have to deal with this on top of just plain being a momma with twins in her belly and worrying enough as it is. Just remember, you are their best advocate.


thank you!! good luck to you too!

 

It's so scary isn't it. We were diagnosed at our first u/s at 19 weeks. We found out we were having twins followed very shortly later by the diagnosis of TTTS. Sierra was our donor baby and her fluid levels were very low but she still had a bladder showing. Ainsley's heart looked okay as well. We had our 1st amnio reduction about 2 hours later and they took out jars of fluid from Ainsley's amniotic sac.

We had weekly u/s from that point on and ended up having another amnioreduction at 25 weeks. Since the girls were now viable, I stayed overnight in L&D after that one. We made it to 35 weeks before Sierra's growth stopped and we needed to induce even though the perinatologist thought there was very little chance we'd make it to 30 weeks.

Some of the things that I believed helped my girls survive TTTS were eating a lot and sipping 2 protein drinks throughout the day. I had a checklist of foods that came from my "What to Expect When You Are Expecting" workbook that I made sure to eat every day. It gave me a very balanced diet and also made sure I ate alot. After completing my checklist, I would allow myself some treats.

There is a current theory that TTTS is caused by some sort of protein deficiency. This is because so many women do well when they drink 2-3 protein drinks per day. I know I ate lots of meat but the protein drinks worked well for me and for so many other women I know that I would recommend them adamantly. That is definitely where you should start.

One of the main issues with TTTS is that so many doctors don't recognize it or don't find it until it is too late because they are not watching identical twins closely enough. The fact that your doctor sees it already gives you a leg up on the statistics. Visit the TTTS Foundation and Dr. DeLia provides consultations on the syndrome if you forward him your records. Take advantage of it. Your doctor should be giving you weekly u/s from this point on and you should also be under the care of a perinatologist. We will keep you in our prayers.

 

i don't have it, but thankfully, to this board and mary at the ttts website, i armed myself with knowledge and am now being monitored properly by my ob.

my heart goes out to you and your babies, as you do not need to be going thru this. There have been a lot of sucess stories, ferfishers, more recently (congrats again!) so keep up looking after yourself and your babies. I hope things will be ok.

One thing is for sure though, contact mary.

take care, prayers and hugs. tash

 

I was diagnosed at about 25wks. Like everyone I went to the TTTS foundation website and got as much info as possible. I talked to Mary And Dr. De Lia who are both great!
Baby A had very little fluid while Baby B had a lot. There was also a gap in their weights. I put myself on as much bedrest as possible and began drinking the boost drinks. Now at almost 35wks. all signs of TTTS are gone. Their fluid levels are even, and at our last visit they were weighing 5lbs. 3oz. and 5lbs. 5oz. I'm not real sure of how it just appears and disappears but I'll swear by my bedrest, boostdrinks, and my faith in God.
I'm praying for you, and Good luck!

 

Thank you everyone for your thoughts and prayers. I am going back to the peri on Tuesday, one week later to recheck. I'm so scared they are only going to find one h/b- I keep having nightmares about it!! This has been a really hard and long week, I'm glad it's not two or three weeks in between visits!
After reading the posts on the TTTS foundation site I ran straight to the grocery story and stocked up on the boost shakes, three a day. I've also started keeping my feet up at work during the day and go home and get straight on the couch. It's so hard to do that when you are just starting to feel human again!
The babies were still measuring good on Tuesday, one was 4oz the other 5oz - I just hope they hang on and this nasty situation goes away!!

FerFischer has been so helpful and supportive to me - THANK YOU, again!!

I'll be holding my breath until Tuesday, until I see BOTH heatbeats!!

 

I'm so glad you got the Boost drinks and are doing as much bedrest as you can. It's also good to know that your work will work with you if you need to go on home bedrest. I really believe that it can make a difference, even if a lot of dr's are skeptical. Focus your energy on those babies - and consider a doppler, I worried a lot about hearing the h/b's too, and that was reassuring to hear, even if it was nothing but the heartbeats! Most doppler companies will send them out really quickly, you could have one by Monday, I bet!

Keep me posted please, I know what a tough journey it is.

Hugs,
Jenny