TTTS survivers!

I just went to see the peri today and was hoping for good dr appt...guess what it wasnt so good. Baby A is measuring 24wks and is 2lbs Baby B is measuring 27wks and is 2lbs 7oz. Baby A has only a 3 on amniotic fluid and baby B has 9. She said we are at stage 2 of TTTS. I am to see the actual peri on Monday 24th and I have another NST on this friday. they said they wont take the babies out until they are a lb different or if A stops growing all together. I am so scared, and Im going to go join the TTTS foundation website now, I feel so bad for my lil man he has no room at all. and baby b is just swimming in a big pool. She said this is what is also causing my PTL. I need some good survival stories of TTTS babies and what to expect over the next month. They are saying about a month maybe less if nothing changes!! SO SCARED!!!

 

Sending hugs your way.

Dianna

 

Your doing the right contacting the TTTS foundation. We were in the same situation, but now all signs of TTTS are gone. I'm praying for you and your babies. :love0028: PM me anytime.

 

I have no experience with this, but I just wanted to send :hug99: your way.

 

I was diaganosed with TTTS at 30 weeks. Same situation one baby had alot more fluid than the other and there was a big weight difffernce too. I had an amnio reduction to reduce the amount of fluid on baby a because the levels where so dangerously high, the removed 3 2 liter bottle of fuid off of her and oh man I could feel the difference immediatly. The amni reduction put me in PTL but it was stopped after 2 days and we where sent home. I was monitered every other day had NST and ultrasounds. The redution helped baby b out alot and she gained more fluid and both stayed about the same. The fluid did come back on baby a but I was monitered so much that if anything did happen they would catch it asap. I ended up deliverying at 35 weeks 4 days because I had sever pre-e and my blood pressure was terrible 190/ 100 their early delivery had nothing to do with their TTTS. DR's said there weights were about a pound or more apart but they ended up being only 5 ounces.
I am sure your dr's will monitor you carefully as they do cases with TTTS. Their are amazing procederes and things that are done to save babies with this disease. I will keep you in my prayers!

 

No experience here either, but I am praying for you and the health of your babies!

 

I will write more later - but we are a success story too!

I was diagnosed at 18 weeks, when my donor had no fluid at all (was shrink wrapped in her sac) and the recipient only had normal fluid. my donor had absent end diastolic flow in the dopplers too. Although everything else was normal, we didn't qualify for the laser ablation surgery.

I went on bedrest and drank 3 high protein Boost drinks a day.

My fluid levels evened out after 2 weeks, and stayed even and all other things were normal until 38w4d when I delivered by scheduled c-section.

definitely contact mary at the foundation and get on the message boards there and ask for help. from ust the fluid levels alone it doesn't souond like sage two to me, unless you have abnormal dopplers or no visible bladders.

and, for what its worth, fluid levels above 2 are normal. both of my twins had levels (maximum vertical pocket) of only 2-4 my entire pregnancy.

my placenta was sent to the lab and confirmed connecting vessels between my twins. bedrest works! my peri said we were the worst case she'd seen and we ended up the best. i credit the bedrest and focusing all mny energy on the babies.

i know this is a roller coaster and is very trying. you are not alone!

hugs, pm me anytime!
jenny

 

I was diagnosed on 12/4 @ 16wks- I'm scheduled for the laser surgery in Tampa on Thursday. Stay strong!! The Foundation and TS members are all very helpful. Don't let the doctor's offices delay your care - that has been my biggest struggle! I'm resting as much as I can and drinking the protein shakes. Good luck and keep us posted!

 

:love0028: Just be sure they stay on top of it all. And know that if your boys are born early, they can do wonderful things with little preemies, just look at my avatar for proof of that!

 

hugs to you and your partner.

Hope all goes well, the ttts foundation is a great source of info and support. I don't have ttts but mary helped me alot in getting me to understandf what to look out for and whatmy doc should be doing to monitor the onset.

goodluck and keep us posted. Prayers for you and your babies.

 

Hugs and prayers, you and your babies are in my thoughts. :hug99:

angel