TTTS or Not?

Well along with our GREAT NEWS we learned...we are expecting BOYS, we received some not so great info. We found out that Baby A has too much fluid and Baby B has not quite enough. Apparently, the fluid levels of each baby should be between 2-8cm. Our Baby A has 10cm and Baby B has 2.5cm. This in it self is a sign of TTTS, but the babies are growing at a good rate. Baby A is 14oz and Baby B is 12oz, which the Dr. said is okay and not an indicator of TTTS. So we are in limbo. I go back for another ultrasound in 2 weeks to see if anything has changed. I'm super stressed which I know is not good for me or the babies, but how can I not be?! Any advise would be great. Has anyone herad of a huge fluid discrepency like this without having TTTS?

 

First, CONGRATS on your boys!! I have 3 boys and they are awesome!

I would have to look at my journal to remember what week I was, but at some point around 26ish weeks my Baby A had about 2.8 in his biggest pocket of fluid and my Baby B had 8.9 in his biggest pocket of fluid. So, they were still within "normal" ranges - but there were on the fringe of "normal" - especially in a mono-di pregnancy where TTTS is a concern. My MFM was monitoring me every 10 days via u/s and at the next u/s my Baby A had around 4.5 and my Baby B had around 6 - so it evened out.

How were your babies' bladders? Visible? What about their cord dopplers?

It is so hard not to worry, I worried about TTTS when I found out we were having mono-do twins at 10w 6d. Hang in there, get lots of protein - and make sure you feel you are being properly monitored. Have you visited the TTTS Foundation's website? There is a great message board there for During Pregnancy - I know I asked a lot of questions there and the women were always so helpful. www.tttsfoundation.org

Good luck! :hug:

 

I had fluid discrepincies at 18 weeks and had full blown TTTS at 28 weeks. My girls were never too far apart in weight, though. The very best thing for you is that your doc is aware of it and is watching it. The worst part of TTTS is when it is undiagnosed. There is soooo much they can do to help little ones with it but hopefully your boys don't even have it. Congrats on your boys. I look forward to your update after your next u/s.

 

Congratulations on your boys!

Ditto exactly what Tara said. Nowadays, the most dangerous part of TTTS is going undiagnosed. At least you have a doctor who is watching you closely. Definitely sip your 2-3 protein shakes (like Boost or Ensure) everyday until your next u/s because the leading experts on TTTS are seeing some benefits and even reversals from following that regimen. Protein is very important.

I entirely understand the worry and stress. We were diagnosed at our first u/s at 19 weeks and it is very hard not to worry. Taking proactive steps will help a lot so stay in control of what you can (like your diet) and continue your own monitoring by weighing yourself every morning (a large sudden increase in weight can signify a jump in amniotic fluid) and staying aware of your babies' movements.

 

Hi! I saw in my e-mail that you had added me to your friends list, and I just wanted to be of encouragement.

At 21 weeks gestation, we were officially diagnosed with Stage I TTTS. Recipient's max. fluid pocket measure was at the upper level of normal range while the Donor's was about 2 cm. Their size discrepancy was measuring about 20% different, and Donor was about 1 week behind gest. age while Recipient was about 2 weeks ahead. I also had a cervix that was quickly disappearing, it seemed, and I had an emergency cerclage procedure.

I was put on strict bedrest and applied the protein therapy. I contacted the TTTS Foundation, and they sent great info and support. . . Mary from the Foundation called me, and I later on called Dr. DeLia for some advice. My regular OB seemed to care but really didn't handle the TTTS stuff proficiently. I was also seeing a MFM group at the hospital for weekly (sometimes 2X weekly) ultrasounds. The frequency of the u/s helped monitor any changes and the rate of progression in case we needed to change our course of treatment or intervention. . . which is sadly limited and bound by time constraints.

It was a roller coaster ride. One week, the size diffs and pocket measures would be pointing towards worsening of the condition, some weeks were stable and other weeks, things were improved enough to bring us a sigh of relief. I observed that diff u/s techs would measure things differently. . . u/s was part art, part science. If we had a particular tech, I could predict if we were going to have good or bad measurements. Who was best or to believe? Who knows!?

We managed to stay Stage I, borderline II. By the end of the pregnancy, polyhydramnios was present in Recipient's sack. . . 14 cm, but Donor had 6 to 7 cm! Donor still was a week or two behind in size of gest. age, but Recipient was est. to be 3 weeks ahead. Because of the extra stress on Recipient, we did also start seeing a neonatal cardiologist. . . he was fabulous. He kept watch on both babies' hearts and organs in utero to see if hydrops or organ wall thickening was taking place or abnormal. (These were other signs of distress to keep watch on.)

Other things that helped me: understanding my own malnutrition @ 20ish weeks. I had bad morning sicknes, and I was placed on a restrictive gest. diabetes diet at 15 weeks. . . but I was borderline GD and easily controlled my sugars through the diet guidelines. When I spoke with Dr. DeLia, he pointed me to some research available at the TTTS Foundation website that was about malnutrition in the mother that may be a contributive factor to TTTS symptoms. I spoke with my docs about it (I was also having trouble gaining weight), and they allowed me to quit pricking/testing so frequently - just in the AM. And I started eating what I considered to be a better diet for my situation. It's obviously not something to adopt in every situation, but I quit worrying about my fat intake and focused on filling up on proteins and fruits/veggies before carbs. (If someone is afraid of this diet for weight gain, I can say that I weigh less now and am below my prepreg weight 8 months out with no exercise. . . just typical twin care and breastfeeding and sleep deprivation, haha.)

I was lucky to never have amnio-reduction or the laser surgery (which typically has to be performed by a certain gestational time and is constrained by certain factors). I was also blessed to have two pretty healthy preemies who did 1 and 2 weeks NICU for observation more than anything. Nothing was a given, and TTTS forces you to be thankful for the now and realize that the later is not so predictable or even a given. The experience changed me in some weird profound way. I don't easily take things for granted anymore, and my view of life has been further distilled. I won't go on about it here!

My doctors didn't say it to me until we delivered at 34w1d, but they were surprised we even made it to 28 weeks. Let alone 34w1d and stayed in Stage I for 13 weeks. I did go into the hospital for full bedrest at 27weeks until I delivered. It was a time fraught with anxiety, but just being prepared and educated on the choices helped.

You are not alone, and if there's anything I can do or say to encourage you during this, please let me know. Keep us updated, every little measurement that you get. . . please share with me if it will help you.

Emily

 

we had fluid issue at 20 weeks, one has normal level of fluid and the other is low. By the following week, it has corrected itself, both had normal fluid. So don't worry too much yet, just keep on monitoring the situation. Good luck.

 

i wish i would have logged in before now so i could tell you not to wait two weeks for another u/s. Also, did you ask your doctor about the bladder on the baby with only 2 cm of fluid and the heart on the baby with 10 cm of fluid? There's a thread today where i gave Courtney a shortened version of my story with TTTS. Please read - it is better to be safe than sorry. Also, is your doctor an MFM? If not, you need to have him/her refer you if your babies share a placenta.

 

I had the same exact problem early on... Baby B had a lot less fluid than Baby A yet both twins were growing at the same rate (which was a good sign), so my Peri monitored me every few weeks and low & behold the Baby B's fluid caught up to Baby A right around 12 weeks or so and (as I knock on wood!) to date all is okay. So maybe you are experiencing the same thing I did.