have twin to twin transfusion syndrome.

soldierswifey · December 28th, 2007, 03:28 AM

hi im chasity im 18 and pregnant with twins, i am 22 weeks pregnant and i found out yesterday that i have t2t transfusion syndrome, im on complete bed rest and my husbands deployed overseas, help what do i do?what do i expect?

**Feathertop** · December 31st, 2007, 11:44 AM

Hi there!

Have you talked to your dr about what this means at all? And what options might be open to you? If not, I'd recommend booking half an hour or so to go through it with him/her as it is quite complex. I haven't had TTTS but I think some others on this site have, or their friends or family have. Have you got family support nearby? I think it would be good to get your family in on the conversations with dr's. I know that when I was pregnant, I'd only recall about half the conversations, my husband had to fill in the details - so it might help to have someone with you when you speak to the dr.

My advice is talk to your dr in detail first, don't just search the web as too much information is scary, plus everyone's situation is different. Hope you hear from others on this forum. And take care of yourself and the boys.

SamanthaP · December 31st, 2007, 01:02 PM

Do you need your husband home? The army will be able to arrange that if you want it.

soldierswifey · January 1st, 2008, 01:56 AM

I have talked to my doctor already but he confused me so badly, i have talked to the military about my husband coming home but they will only let hime come home for two weeks and i would rather him home when they are born so i can have help.. my family is across the country. my parents live in seattle, washington, my mom is flyin down jan7th for 3 weeks to help but then she has to return to work she is a lawyer so i am in a rough situation, i currrently have a friend who is living with me to help me out.. I will be having laser surgery on january 9th at University Of South Florida because thats the nearest fetal therapy program to me , to seal off offending blood vessels on the surface of the common placenta.We chose this option because it has a 85% chance that 1 baby will survive and a 50%chance both will survive and a 5% chance of birth defects like cerebral palsy.. i was also asked to have a amnioreduction, so i would not go into premature labor before they are ready to be born, of course we already know that after 30 weeks they will probably end up being early.. so that really scares me.. but i guess every one must learn new things and this is one of em for me... thanks for the help.. i still need help though..Several of my friends FROM WORK and school(the college i attend) have started a team and will be participating in the TTS RACE FOR HOPE IN LOS ANGELES ON MARCH 30,2008....

**Feathertop** · January 3rd, 2008, 08:29 PM

Fingers crossed for you for the surgery. Take your friend to every appointment and get him/her to write down stuff for you so you can discuss it later - much less confusing.

**Amity** · January 4th, 2008, 06:34 PM

A girlfriend of mine had TTTS which was diagnosed at 16 weeks. Unfortunately her little boys, Oscar and Jack, were born at 24 weeks and did not make it. She had the laser surgery at 16 weeks which was successful, but unfortunately the TTTS continued to affect her sons and they were born too early. They were born naturally and lived for 15 minutes. Rest in peace boys.

Another of my girlfriends had twin girls, and was diagnosed with TTTS at 28 weeks. Her girls were born at 29 weeks by emergency caesarean as she began bleeding. Her girls were 801gms and 1090gms and both are now turning three. The smaller girl is still small, but they have no other issues. They had a 3 month stay in NICU/SCN though.

There are good and bad outcomes with TTTS. Make sure you talk to your care provider and, most of all, inform yourself.

Best wishes. THinking of you.

**bettyboop** · January 4th, 2008, 06:47 PM

Hope all goes well for you, sending you a hug , hang in there

**rosehannah** · January 4th, 2008, 06:56 PM

Good luck with the laser surgery, I will be thinking of you. Hang in there little ones, grow strong.

**littlelara** · January 4th, 2008, 06:59 PM

Oh, I wish you so much luck.
I'll be thinking of you

soldierswifey · January 5th, 2008, 04:25 AM

Thank You all, I know that God will bless me and Noah&Preston. My church annointed me with oilvand prayers sunday and i know, that everything will be fine....

**bettyboop** · January 5th, 2008, 08:48 AM

praying for you , i have just been listening to music by Twila Paris and found a song called God of Miracles and it made me think of you , i hope oneday you can hear it.

**mickyndan** · January 13th, 2008, 06:25 PM

Good luck with everything.... good luck vibes coming your way - thinking of you. xxoo

**bettyboop** · January 13th, 2008, 06:33 PM

I have benn praying for you and your little ones , hope to hear some news soon.

soldierswifey · January 14th, 2008, 03:29 AM

as most of u know, i had my laser surgery done, as of now, there is no change and the surgery was unsuccessful, i am scheduled to have it done again on the 23 of january, both lil boys are hanging in here but, i am having alot of difficulties, i am on complete and absolute bedrest, which is so so very hard. thanks for the prayers