Calling all TTTS laser surgery survivors!

Hi,
Could those of you that have had successful TTTS laser surgery please tell me what week you delivered in and why? Ie, you went into labor or your doc took them out for some reason. I am 26 W 3 D today and dying to get to 28 as I am so nervous and I keep reading that people don't make it very far. I just want these babies to cook until 32 weeks!

Thanks

Kristin

 

We have TTTS, but it's been stage I since our diagnosis. . . and I never had the laser or amnio reduction treatments. So I can't really answer your question, I'm sorry.

Are you hospitalized? (I am due to my cervix being weak, TTTS, etc.)
When did you have your surgery?
Have things stabilized?
Where did you have your surgery?
(Sorry to be nosey!)

I am cheering you on! I have seen some great success stories, and there's good reason for you to have hope. I know an inkling of the anxiety you have felt. . .

 

Well, I haven't delivered yet, but...........I had the surgery at 20 weeks and I'll be 32 weeks tomorrow!! I'm hoping I can get to 34 and my OB says they'll probably want to deliver me between 36-37 if I end up going that far. I don't know if that helps any.

 

I had TTTS, but I did not have the surgery - we managed to stabilize mine with bedrest and Boost. I made it to 38w4d!

Anyway, I have a friend IRL who had TTTS and DID have the surgery (I can't remember at what week though, I think around 19-21), anyway, she went into labor at 34 weeks. Her girls are healthy 20 month olds - I can't remember how long they were in the NICU, though, sorry!

Jenny

 

Wow, thanks ladies! I have been so worried that I wouldn't find anyone that has gone past 30.

We had stage 2 and I went into labor 23 W 2 D. That is how we found out because I had all of a sudden gotten huge due to our recipient having 17 cm, our donor had 0. We had the surgery 5 days later and within 12 hrs our donor had a bladder again and 3.5 cm of fluid within 24 hrs. They removed over 4 Litres of fluid from our recipient's sac. So far everything is great since. Both girls weigh 2 lbs 2 oz ( 26 Weeks) and our donor now has 5.1 cm of fluid. My contractions have returned to just regular braxton hicks and I am on modified bed rest at home.

Wow Fersischer that is great it never went past stage 1 and 38 W 4 D - WOW WOW!

Kj427 I am so glad to hear you are at 34 Weeks - that is my ultimate goal. I want 32 but if I can get to 34 I can deliver at my hospital near home. My doc said no later than 36 too.

Emily@Home how many weeks are you? I am cheering you on too! I had the surgery at BC Women's Hospital in BC, Canada and I LOVE MY DOCTORS!! - LOL! And nosey is fine, ask away!

Happy Healthy Babies to us all!! Thanks for replying I am so glad you are all doing so well!

 

We stayed stable in stage II from 15 weeks until they induced me at 36 weeks. No surgery or amnio ever. B (donor) 4 lbs A (recipient) 5.5lbs. They came home from the hospital with us no nicu. I would think after the surgery you have an excellent chance of making it very far. Good luck.

 

QUOTE(jillangel @ Jun 8 2008, 07:05 AM) [snapback]816047[/snapback]
We stayed stable in stage II from 15 weeks until they induced me at 36 weeks. No surgery or amnio ever. B (donor) 4 lbs A (recipient) 5.5lbs. They came home from the hospital with us no nicu. I would think after the surgery you have an excellent chance of making it very far. Good luck.


We had laser surger at 18wks - and delivered two healthy boys via scheduled c-section at 37wks 3days. I never thought I would make it that far - good luck!

 

Ladies,

After reading all your post made me feel that there is hope. I'm not diganose with TTTS but my doctor said I might. I'm already 21 weeks and still don't know what is going on in there. All I know is that Baby A is 1 lb and Baby B is only 6 oz. The doctor said the aminoic fluid in the sac doesn't meet TTTS but can change later in the pregnancy. All I can do is bed rest and drink plenty of boost. Not sure if the twins are fraternal or Identical and not sure if they share the same placenta. So many things I wanted to be answered that is not answer. Scared but still have hope.

Anyone know any good doctors in Los Angeles, ca in case I do have TTTS?? Thanks.

 

QUOTE(firsttwin @ Jun 11 2008, 07:31 PM) [snapback]822226[/snapback]
Ladies,

After reading all your post made me feel that there is hope. I'm not diganose with TTTS but my doctor said I might. I'm already 21 weeks and still don't know what is going on in there. All I know is that Baby A is 1 lb and Baby B is only 6 oz. The doctor said the aminoic fluid in the sac doesn't meet TTTS but can change later in the pregnancy. All I can do is bed rest and drink plenty of boost. Not sure if the twins are fraternal or Identical and not sure if they share the same placenta. So many things I wanted to be answered that is not answer. Scared but still have hope.

Anyone know any good doctors in Los Angeles, ca in case I do have TTTS?? Thanks.


I recommend you go to the message boards on the TTTSfoundation.org website, or write an email to Mary (the founder of the site) and they will help you find a doctor, and also you can read stories from other women. If you have an early u/s pic, we might be able to help you figure out if they are mo/di (one placenta) or di/di (two placentas) or not. I would ask your doctor more questions - if there is a size discrepancy and you don't know if there is one placenta or not, you should get u/s at least every other week. They should check the fluid levels, growth of babies, cord dopplers and see if they can see the babies bladders. They should also check for any sign of hydrops. Please, reach out to the ladies on the TTTs boards, and make sure you get the care you need from the drs - insist on it - these are your babies, you are their best advocate - do what you need to do!

Jenny

 

QUOTE(kj427 @ Jun 7 2008, 09:55 PM) [snapback]815848[/snapback]
Well, I haven't delivered yet, but...........I had the surgery at 20 weeks and I'll be 32 weeks tomorrow!! I'm hoping I can get to 34 and my OB says they'll probably want to deliver me between 36-37 if I end up going that far. I don't know if that helps any.

Hi,
May I ask what was your twin fluid measure when you have the surgury. I am 22 weeks and might be diagnose with TTTS but not yet met the criteria yet since Baby A is 6 cm and Baby B is a little less than 2 cm. My specialist said they might not do the laser surgury since it's not 8 to 2. But Baby B's condition is not progressing and I'm so scared. Thank you.

 

QUOTE(firsttwin @ Jun 19 2008, 07:58 PM) [snapback]836084[/snapback]
Hi,
May I ask what was your twin fluid measure when you have the surgury. I am 22 weeks and might be diagnose with TTTS but not yet met the criteria yet since Baby A is 6 cm and Baby B is a little less than 2 cm. My specialist said they might not do the laser surgury since it's not 8 to 2. But Baby B's condition is not progressing and I'm so scared. Thank you.

Our Donor (Baby A) had 0 fluid and our recipient had 17 cm of fluid. We are back into the woods again as Baby A has only 1 cm now (down from 5.1 2 weeks after surgery). Our doctors think that it is now a placenta issue. That our donor baby relied on some of those vessels they lasered to supply her with nutrients and now she is not getting enough. She is showing that her growth is slowing down so it looks like we may have to deliver on the next couple of weeks depending on how she does. Do you know if yours are identical or fraternal or not yet? or at least 1 placenta and not 2?

 

QUOTE(ferfischer @ Jun 12 2008, 09:45 AM) [snapback]823085[/snapback]
I recommend you go to the message boards on the TTTSfoundation.org website, or write an email to Mary (the founder of the site) and they will help you find a doctor, and also you can read stories from other women. If you have an early u/s pic, we might be able to help you figure out if they are mo/di (one placenta) or di/di (two placentas) or not. I would ask your doctor more questions - if there is a size discrepancy and you don't know if there is one placenta or not, you should get u/s at least every other week. They should check the fluid levels, growth of babies, cord dopplers and see if they can see the babies bladders. They should also check for any sign of hydrops. Please, reach out to the ladies on the TTTs boards, and make sure you get the care you need from the drs - insist on it - these are your babies, you are their best advocate - do what you need to do!

Jenny

Thank you Jenny. My doctor had schedule me to see a ttts specialist on Monday. The only one in California. And so glad to close by. It's in the USC los Angeles. From there, I'm sure I will get better answers and hopefully I will qualified for the surgury since my Donor B amionic fluid is decreasing every week.

Angela

 

Hi Momof1soon2b3 - I just wanted to say that I am thinking of you and hoping that things are going okay. I also had WONDERFUL doctors at BC Women's and can't say enough about the great care I received. I spent time in Women's during my pregnancy (not TTTS but another serious issue) and one of my DDs received fantastic care in Children's after my delivery at Women's. You are in good hands.