Specialist Consultation

I had a consultation with the specialist, and he confirmed the TTTS diagnosis. This was not a big surprise, almost a relief after not knowing for the last few weeks. The good news is that the amniotic fluid levels are not severely imbalanced enough to warrant treatment at this time... but the bad news is that this can change within a week's time. SOOOOO, you guessed it! I get to keep up the weekly ultrasounds. Yuck. We will be going back January 2nd for a complete scan of both babies (weights, fluid levels and all the other goodies) and we will see how far the TTTS is progressing at that point. I feel like a walking time bomb, since at this point the TTTS is mild enough for both babies to survive, but just as I was drawing a breath of relief he pointed out that it can go from mild to severe in a week. ARGH. Again, the laser surgery is only possible for another few weeks, and after that things are more dicey as far as treatment and risks for the babies.

I also need to clarify some things about the specialist. I talked to my doctor (about the things I had complained about earlier) and I found out I was not yet transferred to his practice and/or had become his patient! No wonder he never talked to me - he didn't know I existed. Poor guy, and I was so offended. My doctor simply sent me there for the ultrasounds since she wanted techs that were familiar with high-risk pregnancies. Once she clarified that, I felt much better!!! Also, he is not against the surgery, as was my initial impression, and in fact refers patients to a clinic in Ohio that performs them. Talking to him about the surgery, he seemed very well-informed about it and had indeed sent patients to get it. The only reason he only performs the amnio reduction treatment is simply because he refers all the surgery cases to the better equipped clinic in Ohio. *Another sigh of relief.* As for not diagnosing it, my initial ultrasound reports showed such mild symptoms progressing at such a slow pace (TTTS often develops and progresses quickly) that he did not see cause for concern. Now that the symptoms are more obvious, I am getting more detailed reports from him to my doctor and he is taking much more interest in my case... even though I am still not technically his patient. Overall, I feel much more comfortable with the situation now!!!! At least as far as trusting them with my medical information/diagnosis/treatment options.

As for the babies, I can still feel both moving around. This is a good sign!! The larger baby's heart is not quite as enlarged and does not seem to be under stress any more. Another good sign!! And the little one is still kicking and squirming (even did a somersault) which shows he has enough fluid to survive at this point. Yay! Now just pray that they stay put in there for a few more months, and that the TTTS stays mild enough for them both to grow strong and healthy.

Also pray for my heart condition. It is very difficult to live with and try to take care of two energetic girlies without getting really sick. I am hoping to avoid full bed rest as long as possible, and at this point the doctor is allowing me to do partial bed rest. She does not want me on my feet unless necessary, and she wants my rest times to equal my activity. Again, with two little girls this is not always possible , but we are plugging along!!!

Thanks so much for all the prayers and support. I know I keep saying this, but it's true: we could not get through this trial without all the help we've been getting. I'll give you all the new info after the 2nd, just keep in mind it takes me a while to get to a computer!!!

More ultrasounds, less good news

They have increased my ultrasounds to every week - UGH. My uterus is swelling quite rapidly, and I am now measuring at over 7 1/2 months although I am just hitting the five month mark. (This is causing some concern, since excess fluid is a sign of TTTS. You will obviously be bigger when you carry twins, but I went from running about 4 weeks ahead in size to over 8 weeks ahead in size in a matter of three weeks.) Also, there is now a noticeable fluid imbalance in the babies' sacs as well as the larger twin having an enlarged heart. The twins are also about 25% different in size, although the little one is growing at a decent rate considering his condition.

I have been exhaustively researching TTTS treatments as well as talking things over with my doctor. (Information gathering is my coping mechanism!) I really agree with my doctor that the laser surgery has the best outcome with the least risks, but since I (well, technically the babies) am not even at Stage 1 TTTS (if the diagnosis is confimed) most specialists would do the amnio reduction first. Also, there is the issue of the surgery being so highly specialized that only a handful of Maternal-Fetal centers/Children's Hospitals even do the surgery. Texas Children's Hospital seems to be one of the main hospitals with this specialty, but my doctor is also talking to specialists she knows for recommendations. I am less concerned with it being close to home as I am with it being a doctor(s) who is very familiar with the procedure!!! Also, we haven't been able to get a clear answer from our insurance, but at the most they will cover a portion of the surgery.

As you can see, we really need your prayers as we make these big decisions over the next few weeks!!! The latest I can get the laser surgery is mid-January, and after that the outcomes are much more grim. So we are getting down to the wire here, and we are so thankful for the prayers and support of our friends and family during this difficult time.

Just FYI

I have had a lot of people asking me questions about the surgery (fetoscopic laser ablation) or about TTS (twin-twin transfusion syndrome, sometimes called TTTS, depending if they count twin-twin as one word or two!) so I have added a link here with a basic overview.

Here is a video, although there is very little information in it. There is more detail in the article the video goes with.

Also, Texas Children's Hospital has a lot of information on laser ablation treatment of TTTS. Amnio reduction is by far the more prevalent treatment, but the success seems much higher with laser ablation. Until we know how severely our babies' TTTS is, we will not make a decision on which treatment we opt for.

Still no diagnosis...

I'm not trying to leave you all hanging! I have had three ultrasounds and am scheduled for two more, but the results are still inconclusive. The twins show some signs of TTS, but not others. The specialist I am going to said he does not think the surgery is necessary, but my doctor wants me to keep the option open. There are a few reasons I agree with her and have issues with my specialist:

1. The guy has never even had the decency to come into the room and meet me in person. He has the techs bring him the ultrasound reports, he makes his notes and sends them back. I do not feel like he is taking my condition seriously, or respecting me as an actual person with actual feelings.

2. He has not personally pursued the surgery with any patient, opting instead for a different procedure in which you must come in periodically and have amniotic fluid syphoned from one sac to the other. To me, this is like bailing water from a sinking ship instead of just plugging the hole, which the surgery would do. He seems a bit set in the old ways, where I would prefer someone who is exploring more cutting edge, safer and more successful options instead of "That's just the way we've always done it."

3. He diagnosed me after an inconclusive ultrasound as "No TTS suspected" then changed his mind once my doctor pointed out some of the symptoms I/the babies were showing. This does not sound like he gives a great deal of thought to his diagnoses, so I do not feel confident in his opinion.

So, overall, we will wait for the reports from the next two ultrasounds and see how things are going. I will probably go for a consultation on the surgery, so if the twins start to show more definite signs I'll be good to go before the deadline. The surgery CANNOT be performed after 26 weeks, so if the TTS occurs (with any severity) after that point you have to deal with it in ways that are less satisfactory to me. (Syphoning fluid or inducing premature labor are two of the options.)

Please pray for grace to deal with this time of uncertainty. It is almost harder to deal with an inconclusive diagnosis than a bad one. I just want to KNOW what we are facing, but God has His reasons for making us wait. Please also continue to pray for our little boys that they will grow and develop normally. I will let you know as soon as I know something!