Confirmed TTTS, surgery scheduled, Advice Please!

:itwins_boys: [SIZE=10pt]What a range of emotions we've been through the past 2-3 weeks. :unsure: After our second trip to Cincinnati, where they confirmed TTTS stage 3 we decided to try an amnio reduction (this was done Tuesday of this week). Yesterday we returned to Cincinnati to find out that the amnio didn't work and Baby B (our recipient) is now showing heart problems. This is in addition to amniotic fluid differences, no bladder in our donor baby, significant weight differences, absent flow in the umbilical artery of both babies. It's amazing to me how quickly TTTS can progress.

We are scheduled for surgery in Cincinnati on Tuesday, with all pre-op on Monday. We'll have to stay in Cinci until Wednesday, then return again on Friday for a follow-up. We are fortunate to only live 3 1/2 hours away. I know that the surgery is the best opportunity for both babies to survive, yet I am so afraid. Especially for our little baby (donor). I'm so fearful since we don't know the difference in the share of the placenta. I know the chances of survival without the surgery are slim.

Just a few questions: how long did the surgery take? how did you feel after the surgery? results? length of recovery? I guess, any details you can give me to help me prepare.

I don't know what I would do without TS! Thanks! :hug99:

Jenn[/SIZE][/size]

 

:hug99: :hug99: I have no advice, but did want to give you some hugs for all you are going through and let you know I'll keep your little guys in my prayers. :hug99: :hug99:

 

We didn't need the surgery I just wish you the best and will be thinking of you all. I know you are going through just about the worst thing you'll ever go through right now and I'm sure things will turn out for the best. I have heard very good results from the surgery and you'll be in good hands. Good Luck.

 

Jen, I'm sorry you have this stress on your shoulders. :hug99: I have no advice, just wanted to let you know I'm wishing you all the best on the surgery and you and your little men are in my thoughts. :hug99: Please update us when you can.

 

Our boys had TTTS but surgury wasn't needed.

I'm sorry you're going through this, how incredibely stressful

:hug99:

 

Not sure what button I hit to get those two blue guys...we're actually having little girls!!! We have two boys at home and what a surprise to find out twin girls are on the way. Thanks so much for all the hugs, it means so much.

Jenn

 

QUOTE(jenn-mommy2boys @ May 3 2008, 08:02 PM) [snapback]754032[/snapback]
:itwins_boys: [SIZE=10pt]What a range of emotions we've been through the past 2-3 weeks. :unsure: After our second trip to Cincinnati, where they confirmed TTTS stage 3 we decided to try an amnio reduction (this was done Tuesday of this week). Yesterday we returned to Cincinnati to find out that the amnio didn't work and Baby B (our recipient) is now showing heart problems. This is in addition to amniotic fluid differences, no bladder in our donor baby, significant weight differences, absent flow in the umbilical artery of both babies. It's amazing to me how quickly TTTS can progress.

We are scheduled for surgery in Cincinnati on Tuesday, with all pre-op on Monday. We'll have to stay in Cinci until Wednesday, then return again on Friday for a follow-up. We are fortunate to only live 3 1/2 hours away. I know that the surgery is the best opportunity for both babies to survive, yet I am so afraid. Especially for our little baby (donor). I'm so fearful since we don't know the difference in the share of the placenta. I know the chances of survival without the surgery are slim.

Just a few questions: how long did the surgery take? how did you feel after the surgery? results? length of recovery? I guess, any details you can give me to help me prepare.

I don't know what I would do without TS! Thanks! :hug99:

Jenn[/SIZE][/size]


I'm sorry to hear that you are going through this. I can relate as I had the surgery for our twins at 20 weeks. We were also at a stage 3 with no visible bladder in the donor and the beginning of heart problems in the recipient. Our donor had like .3 cm of measurable fluid and our recipients fluid was over 9 cm. There was about a 30% difference in their weight. This can progress quickly so it is good that you are being proactive in taking care of it as soon as possible. The things they can do nowdays with this surgery are amazing. Our babies are doing incredibly well 7 weeks post surgery. Infact, at 4 weeks post surgery they were measuring within .3 cm of each other on fluid, their weights were only 2 oz. apart and they were measuring within 1 day of each other.

My surgery was done in less than 2 hours. They draped me and I was only given a local anesthetic at the site of the 1/2 inch incision where the scope and laser were entered. Then they gave me a relaxer in my IV during the surgery. After the surgery I had to have 2 shots of trebutaline to calm contractions. This is very common as the uterus gets irritated from having things poking around in there. I was a little sore at the site of the incision but I didn't really have any other problems. I stayed in the hospital for 24 hours for monitoring before I was able to board a plane for the flight home. I'm on modified bedrest now and just try to stay off my feet as much as possible. At 20 weeks it seemed like such a lofty goal to try and make it to 27 or 28 weeks after surgery but I'm already almost there!!

There is hope that the babies will not only survive, but that they can recover from the effects of the syndrome also.

If you have not yet, I would contact the www.tttsfoundation.org website and request that a packet be fed-exed out to you. You can also contact Mary at the foundation and she would talk to you personally.

I really hope things go well for you. If you need to talk you can email me personally. Good luck and know that we are thinking of you. Let us know how everything goes.

-Karlie

 

Today's Houston Chronicle had a detailed story on a family that just underwent successful TTTS surgery here in Houston. It's good reading if you're interested in the subject. I'm sure your story will result in the same successful results as the family profiled in the below story. Good luck!

http://www.chron.com/disp/story.mpl/front/5750896.html

 

:hug99: you are in my thoughts and prayers

 

I will keep you and your precious babies :itwins: in my prayers. I hope all goes well. :hug99:

 

Just wishing you lots of luck on your upcoming surgery. Please let us know how it goes. :hug99:

 

Good luck with your surgery. We will keep you in our prayers!!

 

I will be keeping you in my prayers. I hope the surgery is uneventful and your babies are able to grow nice and strong! Please update us when you get a chance. :hug99:

 

Sending hugs and prayers your way and to the babies.

Dianna

 

Oh Jenn - you know I am thinking of you. I am glad you are having the surgery, though - I know it seems risky, but there are SO many success stories. I agree with PP, go to the tttsfoundation website, and get on the board there and ask your questions - you will get a LOT of responses, help, support and stories of success.

I also have a friend IRL who has been through the surgery (her girls were born at 34 weeks and 19 months now - no problems!), and if you send me your email, I will send it to her and I KNOW she will respond and give you some great advice.

I will be thinking of you a LOT. Please keep us all posted. And come over to the tttsfoundation site if you can

many many hugs -
jenny

 

QUOTE(twinstuff @ May 4 2008, 08:03 AM) [snapback]754526[/snapback]
Today's Houston Chronicle had a detailed story on a family that just underwent successful TTTS surgery here in Houston. It's good reading if you're interested in the subject. I'm sure your story will result in the same successful results as the family profiled in the below story. Good luck!

http://www.chron.com/disp/story.mpl/front/5750896.html


Not to mention it was on the FRONT page! I didn't even know they did the surgery at TCH, good to know!

Jenn,
Wishing you the best for successful sugery!!

 

Many hugs and prayers to you and your family, Jenn!! :love0028: Keep us updated when you can.

 

I live 15 minutes from Cincinnati Childrens!!! My girls had TTTS but I had 3 amniotic fluid drains and spent 5 weeks on bedrest at Good Sam.....I never had the surgery. Let me know if I can do anything for you, though!!!

 

I just wanted to stop back and update on the surgery. It's with a heavy heart that I have to tell you that our little Baby A didn't survive the crucial 24 hours after the surgery. I don't want to scare anyone who has been diagnosed with TTTS, the doctors believe that she had complications in addition to TTTS that would have made it difficult for her to survive even if she had made it through the surgery ok. One of those was the 20% share of the placenta. I know that it's a gray area (placental share at 20%) and some twins can survive as long as there are no other complications and surgery is not a complete shock to them.

I wish all of you the best of luck with your twins, my heart breaks that I cannot be joining you in this adventure. I had so many hopes and dreams for our baby girls.

Thank each of you for your support, I can't say enough for this website and the comfort it has given me.

Jenn :hug99:

 

I guess grief kind of takes over right now, as I forgot to update you on our other twin. I should tell you that Baby B is doing extremely well. At the moment she is kicking me to let me know she's thriving. The doctor's will continue to monitor her closely to make sure that blood was not transferred after Baby A passed. The only way they said this could happen is if there is a deep vessel connection that they could not see during the surgery.

The hardest part right now is second guessing. I just hope that we did everything right throughout our dealing with TTTS. There is nothing that I wouldn't have done to save our baby girls.

Thank you again for all of your kind words, they mean so much.

Jenn

 

QUOTE(kj427 @ May 3 2008, 09:02 PM) [snapback]754110[/snapback]
I'm sorry to hear that you are going through this. I can relate as I had the surgery for our twins at 20 weeks. We were also at a stage 3 with no visible bladder in the donor and the beginning of heart problems in the recipient. Our donor had like .3 cm of measurable fluid and our recipients fluid was over 9 cm. There was about a 30% difference in their weight. This can progress quickly so it is good that you are being proactive in taking care of it as soon as possible. The things they can do nowdays with this surgery are amazing. Our babies are doing incredibly well 7 weeks post surgery. Infact, at 4 weeks post surgery they were measuring within .3 cm of each other on fluid, their weights were only 2 oz. apart and they were measuring within 1 day of each other.

My surgery was done in less than 2 hours. They draped me and I was only given a local anesthetic at the site of the 1/2 inch incision where the scope and laser were entered. Then they gave me a relaxer in my IV during the surgery. After the surgery I had to have 2 shots of trebutaline to calm contractions. This is very common as the uterus gets irritated from having things poking around in there. I was a little sore at the site of the incision but I didn't really have any other problems. I stayed in the hospital for 24 hours for monitoring before I was able to board a plane for the flight home. I'm on modified bedrest now and just try to stay off my feet as much as possible. At 20 weeks it seemed like such a lofty goal to try and make it to 27 or 28 weeks after surgery but I'm already almost there!!

There is hope that the babies will not only survive, but that they can recover from the effects of the syndrome also.

If you have not yet, I would contact the www.tttsfoundation.org website and request that a packet be fed-exed out to you. You can also contact Mary at the foundation and she would talk to you personally.

I really hope things go well for you. If you need to talk you can email me personally at [email protected] Good luck and know that we are thinking of you. Let us know how everything goes.

-Karlie


God bless you and your babies- I will keep you in my prayers, Lisa

 

I am so sorry for your loss. :cray:

 

Jenn,

Don't second guess, as you did what you had to do for both your babies. My heart aches for you at the loss you will no doubt feel forever, but I am so happy to hear that your other little one is kicking and doing well. You are in my thoughts and prayers. I am so sorry, Lisa

 

:cray: Jenn I am at a loss for words. I am so sorry. My heart aches for you and your family but it is nice to hear that Baby B is thriving and kicking you.

 

Good Luck! Stay strong for your babies.......

 

Jenn, I am so sorry. :cray: I will keep you and your family in my thoughts and prayers. :hug99:

 

Jenn, I am so sorry to hear about your loss. :hug99: :cray: You and your family are definately in my thoughts. :hug99:

 

I'm so so sorry for your loss

 

I'm saddened to hear about your Baby A. . . and yet glad to hear about Baby B. You all are in my prayers.

We too are being affected by TTTS.

 

I'm so sorry. :hug99:

 

QUOTE(DATJMom @ May 9 2008, 09:03 AM) [snapback]764522[/snapback]
:cray: Jenn I am at a loss for words. I am so sorry. My heart aches for you and your family but it is nice to hear that Baby B is thriving and kicking you.

:hug99: :hug99:
My thoughts and prayers are with you and your family for the loss of your little one and continued health for your other baby.

 

I am so sorry for your loss. :hug99:

 

I"m so sorry for your loss. I'm happy that your other baby is doing well though. :hug99:

 

Jenn,

I'm so sorry to hear of your loss. I will continue to keep you in my thoughts and prayers that little baby B will continue to thrive and do well.

 

jenn- you have been in my thoughts every day. my heart just aches for you. ttts is a horrible disease. i'm so sorry for your loss.