Our Introduction to TTTS

Some of you have already heard this story, but in case you haven't (and so we can have a record of it - another great reason for a blog) here's how the last week has unfolded.

On Tuesday, April 30th we went to our Anatomy Scan.  This is an ultrasound appointment that happens for ALL pregnancies where they take measurements of the baby--bones, head, stomach, arms, feet, etc.   Many people know this as the appointment where they learn if they're having a boy or girl (since for many singleton pregnancies - people pregnant with one baby - only have this one ultrasound if they are having an uneventful, healthy pregnancy).  Due to the high risk nature of carrying triplets, we've been seeing our babies at least every 3 weeks since we learned we have triplets at 7 weeks.  While we're fortunate to have many opportunities to see them, Andy and I were both very excited about this appointment because we were anxious to know genders!

Our Anatomy Scan began around 8:30am, and before it was 9 I was already uncomfortable!  Something about laying on my back and being pushed and prodded made it difficult for me to breathe and I was getting overheated.  Thankfully the technician allowed me to sit up and she continued the scan.  For around an hour and a half we got to see all three of our babies as the technician checked heartbeats (all good), arms, legs, hands and fingers, feet and toes, spines, stomachs, heads, bladders, and the fluid surrounding each baby.  We learned that our set of identicals are girls and we've got a little guy hanging out on his own!  We couldn't have been happier!  (Watching Andy's face when the technician said "Congratulations, it's a girl!" is a moment I'll never forget!)

When the technician was done with the scan, she went to go get the MFM (Maternal Fetal Medicine) Doctor to go over the scan with us.  (MFM is the fancy, technical term for the high risk doctor).  When the MFM came him, he immediately started going over the pictures with the technician, asking her questions about her measurements/how all the babies are doing, but we over heard him talking about two concerns:
     1. Baby A arm and leg measurements were smaller than what they should be based on her other (stomach, head) measurements.
     2. Baby A had less fluid around her and Baby B had more fluid than normal and used the term "Twin-Twin Transfusion Syndrome"

After the technician got a few more measurements and pictures, we moved to the MFM's office to talk about what he was seeing.

From there he told us that the arm and leg measurements are a soft marker for Downs Syndrome, but there's no way to know anymore about that unless we do an amniocintesis.  We had told him early in the pregnancy that we did not want to do an amniocintesis, and he had agreed.

The fluid levels, however, were much more concerning.  He told us that a discrepancy in fluid levels is an indication of "Twin-Twin Transfusion Syndrome" (TTTS)  Our current fluid levels weren't different enough to actually label the girls with TTTS, but he was fairly confident we'd get there.  He gave us a handout on the research of TTTS, went over it, told us that should it progress, the best solution is laser treatment, which we would have to go to Cincinnati to get done.  After we went over any questions we had (which weren't many since we were in shock) he told us to schedule another ultrasound for two weeks so we could check on the babies.

We left in complete shock, terrified of what could happen!

Throughout that day and evening, Andy read all he could find on the internet about TTTS and I reached out to all pregnancy groups I knew of to get answers and positive stories.  This may have been one of the best things I could have done because many people kept saying that we needed to be seen sooner than two weeks.

After much talking and praying, on Wednesday evening, we decided we didn't want to wait two weeks to see how the girls are doing, we wanted to be seen sooner.

Thursday morning, Andy called the nurse who is managing our case and asked if we could be seen sooner than two weeks.  Turns out they could either get us in that afternoon (on the other side of town) or on Monday (at our normal location).  We decided to leave work early and take the appointment that day, and I'm so glad we did!

That afternoon, at the Westlake office, we learned that not only had the fluid levels gotten worse, but they could not find a bladder in Baby A.  This put the girls at Stage 2 TTTS.  From here, our MFM wanted us to come back Friday to see how the girls were doing and she was also putting in a call to Cincinnati Children's Hospital to see if they would do the laser surgery, should we need it (we're an additional complication since we have a perfectly healthy baby boy just hanging on with the girls!)

Friday morning we headed to UH downtown (we were getting a tour of all the locations!) and were given good news - they found a small bladder in Baby A!  That put us back to Stage 1 for now.  As mentioned, TTTS can change in a matter of days, so just because we were at Stage 1, didn't mean we'll stay there.  The plan now, was to come back on Monday and continue monitoring.  Our MFM did let us know that should the TTTS progress, Cincinatti is willing to do the procedure!  (This is good news because if they said no, we'd be looking at having to go farther away - Philadelphia, Miami, Houston...)

As of Monday morning, the girls are still at Stage 1, fluid levels are still very low and high, but Baby A is still showing a small bladder.  We go back on Thursday for another check.  For now, we keep our fingers crossed and continue praying for these precious babies!