New Here -- Pregnant with Twins Who Have TTTS

Hi Everyone,

I just wanted to introduce myself as I am new to the forums. My husband and I found out in January that we were expecting Mono/Di twins. When we found out, we did not know much about the risks that being pregnant with Mono/Di twins posed. After getting over the shock of being told we were having twins, we were happily going about our everyday lives when our regular OB referred us to a perinatologist. At 18 weeks and 3 days pregnant, we were headed to Omaha (2 hours from our house) for our first appointment with the perinatologist. It was at that appointment that our identical twin boys were diagnosed with Stage 1 Twin-to-Twin Transfusion Syndrome. The perinatologist explained to us what TTTS was and explained that we needed to be seen by an expert in Selective Laser Ablation Surgery due to the seriousness of our condition. Two days after my appointment, I received a phonecall from Dr. Jullian DeLia and was ordered immediately to go on bedrest and begin protein therapy (which meant drinking 3 Boost High Protein drinks per day). He said that we needed to have the surgery very quickly and had us scheduled to be in Milwaukee for surgery the following week.

To make a long story short, before we headed to Milwaukee, we visited our perinatologist one more time for a check up and things seemed to be improving. For about 2 weeks this was the case, but on March 13th I ended up in the emergency room as I could barely move. The fluids around the recipient baby had elevated to 11 cm while the donor baby only had about 3 cm. The doctors admitted me to the hospital and immediately performed an Amnioreduction, hoping that would solve the problem. Unfortunately, the Amnio did not work and fluid began to build up again, so we were sent to Colorado Children's Hospital for a consult. By that point, we were diagnosed with Stage 3 TTTS and had Laser Surgery the following day. Dr. Timothy Cromblehome performed the surgery and it was a success! They did uncover during the surgery that our donor only had 10% of the placenta while his brother had 90%, so they were concerned that they did not know how big we would be able to get him.

So, after being monitored on a weekly basis since the surgery, I am on bedrest in the hospital right now and have made it to 31 weeks and 1 day!! The babies are currently 2.2 pounds and 3.8 pounds. The doctor wants to wait until 32 weeks and then hopes to deliver them as the donor baby is showing signs that his growth is slowing down.

 

Welcome! I know of a girl who had TTTS with her now seven year old daughters. She had the laser surgery by Dr. Ruben Quintero in Miami. Her girls are amazing, healthy, beautiful girls. We are very excited to have you here with us.

 

Welcome to Twinstuff!

I'm sorry you've had to deal with TTTS in your boys. :hug:

Which hospital are you at now?

 

Welcome!

 

Right now I am at Methodist women's hospital in Omaha, ne. It is kind of a bummer since it is 2 hours away from where I live, but I know I am in the best place for me and the kiddos.

 

:welcome: to Twinstuff!
I am sorry that you've had to deal with TTTS but it sounds like you and the babies are receiving excellent medical care. Please keep us posted and I wish you all the best for the rest of your pregnancy!

 

Welcome! I am sorry you've had to go through this with your babes, but it sounds like you're getting great care and there's lots to be optimistic about. Here's hoping for smooth sailing until 32 weeks!

Also, post delivery we have a great NICU forum. Lots of mamas on here have had kiddos in there and can offer lots of advice and support.

 

Welcome to twinstuff and good luck for the remainder of your pregnancy - it seems like you had quite a rollercoaster ride already . I hope all goes well with you and your babies.

 

Melissa! Good to see you 'round these parts! I'm excited for you to meet the TS ladies and for us to cheer you on in the coming weeks!

 

Good news...the doctor this morning said since I am almost to 32 weeks, they are going to play things by ear and not do the planned c-section they had talked about right at 32 weeks. He said since all of the scans have looked good up until this point he doesn't see a reason to deliver yet.

Which makes me happy -- the more time they spend cooking the less time they spend in the NICU!

 

CONGRATS!!! 11 years ago, at 18 weeks pregnant, I was diagnosed with TTTS. I was on bedrest from 28 weeks until 35 weeks. I had 3 amniotic fluid reductions. I now have two 11 year old beautiful girls. Feel free to ask any questions you might and have and keep us posted!

 

Welcome to TwinStuff. Hope things are still going better!

 

Things changed again...our boys were born on Friday, may 31st at 32 weeks exactly.

Lincoln Tyler was 3 pounds 14 ounces and 16.5 inches long
Nolan August was 2 pounds 11 ounces and 14.25 inches long

Both boys are in the nicu but doing well!

 

Congratulations! I am glad that the boys are doing well in the NICU. :hug:

 

Congratulations on the birth of your boys!!! I am so glad they are doing well; I hope YOU are recovering well!!

Welcome to the forum and let the fun begin!!

 

Congratulations!

Welcome to the world Lincoln and Nolan!

 

COngratulations!!! Good luck in the NICU.