TTTS support

[deleted account] ( 4 moms have responded )

We have been diagnosed with TTTS at 15 weeks and the doctors who diagnosed it wished for us to get to Cincinnati within two days. Cincinnati discussed with our doctors and decided to bring us in week 16 (6 days after getting the news) (Tuesday Nov.3). The girls are 5oz and 4oz and Maddy who is the donor obviously has a little less fluid. They were very active in the ultra sound and that gives me hope... but I fear that it'll take a turn for the worst when we least expect it. They just told me to relax and just remain calm. I believe we're past the guilt and other stages and know the doctors will do their best and all prayers are putting us at ease. Are all cases completely different, will the doctors be right and just 6 days won't turn completely over? Their heart rates are appropriate, Lorelei's is slightly higher, and Maddy's isn't showing any diastolic blood pressure.

Anything anyone would like to share outside of all the other pages?
Should I begin the shakes prior to discussing with my doctor?

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4 Comments

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Shannon - posted on 07/07/2011

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I want to invite you all to join my online support group at www.TTTSupport.com You can read more About it at www.TTTSupport.info Looking forward to seeing some of you there!

Shulena - posted on 11/04/2009

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It's so funny that this topic showed up. I am living this scenio has I type. I have been in Cincinnati since last Wednesday an had surgery Monday. I have my follow-up appt tom. to see how the babies are doing after surgery. The Cincinnati Children's Hospital were the fetal team of Dr/staff are located are AWESOME. In this very stressful time, I have felt more at home an relaxed as can be. I have told the staff numerous times that I am going to put them in my luggage and take them all back to Charlotte, NC with me. LOL. Ask as many questions that might come up and they are very patience by answering everything.Medically the Dr's have given my babies one an 60% survival rate and the other 40%. However, prayer & my faith is going to be the only thing that gets me through this. Good luck and keep me posted.

Erica - posted on 11/01/2009

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Trust the doctors at Cincinnati, they will not stear you wrong. I had the fetal laser surgery for the TTTS at Cincinnati Children's Hospital and everything went great. I had the surgery a week after I found out that my twins had TTTS and everything went great. Every case is different and once you get there and they do all the tests to see what stage you are in and what procedures you should consider, you will be able to sit down with the doctors who perform the procedures and ask them all the questions and conerns you may have. They will also give you a folder with everything about TTTS, the facts, statistics and in mine there were pages the told you about the doctors that will perform the procedure/surgery. You will most likely get that also. Just remember to try and relax, be calm and do whatever they say to do. I know it is a really hard thing to do, but it will help. Also, once you get there, you will meet a person who will help you get to your appts for the day, and she/he will also be with you before and after the surgery (if you choose the surgery) to answer questions that you or whoever is there with you, might have. They definately know what they are doing in Cincinnati. So, just try and relax. I hope all goes well for you and your family.

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