XP: some encouraging news re our TTTS babies

littlewonders

First of all, I want to thank each and every one of you for your kind words, both in replying to my post here, or in comments on my blog. It meant the world to me and DH to know that there are so many people caring for us and praying for us. Special thanks for those of you who had been in similar situations before and took the time to share your experience with you.

 A quick update: Through the TTTS Foundation, I got connected with the doctor who invented the laser surgery 25 years ago and now heads the only TTTS Institute in the US. His name is Dr. De Lia, and after leaving him a message at his office yesterday, he called me back this morning. You'll find all the details on my blog - but in essence he was very encouraged by how relatively mild my case still was, and was extremely hopeful that the combination of bed rest and nutritional supplementation he recommends could make a very positive impact on our situation. We might not even ever need the surgery. But even if we did, we would consider going to Milwaukee (where he is) and having him do it, since his success and survival rates are so incredible. All this to say, after feeling we'd received a death sentence for our two girls on Thursday, I feel SO much better after talking to him. 

As in any case of TTTS, things will stay dicey until the babies are born as a severe worsening of the condition can occur at any time - so we very much appreciate your continued prayers. But I just wanted to give you the positive news we'd gotten this morning. 

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that is good news!!  continued prayers for your twins!

Heather.D

Isn't he wonderful? I am so glad Mary got you hooked up with him. After I spoke with his nurse, I already felt 100x better! Glad you got some good news!

seattlestef

Great news!! I've been thinking about you and your family. Keep us updated!

pea-kay

oh my gosh, that is such wonderful news! i am so, so happy to hear it. i will keep you and your babies in my thoughts. now go eat some protein!

mmbench

Awesome.  I'm so glad to hear it.

 I should add that when our peri diagnosed us, he was very worst-case scenario kind of guy.  He was all set to put us on a plane to see Dr. Quintero in Tampa.  But then when we saw the specialist here in NC, he wasn't as worried and put us on the left-side bedrest/nutritional supplements protocol.  So happy it worked for us.

 I didn't even know I was having twins until 20 weeks, so I was a little past where you are now.

caseybog

What reassuring news! I hope for nothing but the best from here on.  Take care!

jlc071903

That is AWESOME news. I hope that you don't even need to have the surgery, but if you do....he sounds like the BEST one to do it.  Keep us posted..

sweater

WOW...small world Dr. DeLia was the doc who reviewed our case and said we weren't eligable. Our peri-team said he pioneered the surgery, so I agree that he's HIGHLY recommended!! (we live in the milwaukee area and are so lucky to be close to a #3 rated Childrens Hospital...I believe Dr. DeLia is at St.Josephs Hosp which is right in town)

Keep your chin up, and hang in there!!

maria15288

I'm so happy that things are looking up for you. I'll keep you all in my prayers.

jd0614

Wow, that is so encouraging!!!  And how great he called you back so quickly!!!  Good luck and keep us posted!