The Start of Our TTTS Journey

This is going to be a long starter post, but I feel to record our journey accurately I have to start from the first. So to start, an introduction:

 I'm Katie, 27 years old and married to an amazing husband and father named Matt. We live in Weaverville, NC with our two beautiful children: Arianna who is 3 1/2, and Hailie who is 8.

 We started trying to get pregnant again over a year ago. We tried for around six months with no luck until some back and nerve issues steimed us for 3 months, then we were back to trying.

Finally, on August 21st 2015 we got a positive pregnancy test! We were so incredibly thrilled, but cautious as well. We had a loss at almost 14 weeks when Hailie was a baby, and when I was pregnant with Arianna I had low levels and had to take progesterone.

I went in September 2nd to have a pregnancy confirmation ultrasound, and for them to take my blood for the first part of testing my levels. The appointment was a mess, almost all the doctors were either gone or at surgery. I had to wait a good 2 hours to go back for my ultrasound, and when I did it was an ultrasound tech who was used to doing anatomy ultrasounds, because at this office the doctors usually do the early ultrasound themselves. She could not find a heartbeat, but we saw a small baby and it was still early, so I wasn't too worried.

Before I go on I should say that this pregnancy felt different from the very first. I am usually only a little sick feeling and very tired at the first. This time, I was straight up getting sick every single day, and truly felt like I had the flu. We were relieved when, after I went back 2 days later just for another blood withdrawal to compare how my levels were increasing, I got a phone call saying my levels were perfect.

I went back for another ultrasound a week after the first one, with hopes of hearing a heartbeat. It's an understatement to say I was blown away when right away two little circles popped up on the screen. It was twins!! I was in complete shock, and Matt thought I was playing a joke on him until I sent him the ultrasound. My first thoughts were excitement, and then moved quickly to worrying about how in the world am I going to afford two at once? How can I even care for two at once? Those fears were quickly replaced when I started to do research on the type of twins we had. They are Mono/Di, which means they are identical, they share a placenta, but have a thin membrane in between them, and have separate amniotic sacs.

The first thing I was worried about was vanishing twin syndrome. That is where one twin essentially vanishes and is absorbed. Every ultrasound we were so pleasantly surprised to find both twins still there and thriving!

So when we went for our first Maternal Fetal Medicine Specialist appointment, the biggest thing we were worried about was whether we were going to find out the gender of our sweet things or not. At this point I was one day shy of 16 weeks.

The ultrasound tech had a hard time finding the membrane, but besides that everything seemed to be fine. Then she got really serious and didn't say anything for a minute, flipped the machine off, and said the doctor will be in to talk to you in a minute.

It turns out our little babies had borderline/stage one Twin-to-twin transfusion syndrome, or TTTS. Baby A had too much fluid, at 9.something, and baby B had too little at 2. The reason the tech had a hard time finding the membrane is that baby B is pretty much suspended in it like a teardrop, with a small amount of fluid above its head. She said that most likely we would need to go to Charlotte and have the laser surgery that severs the connections where the babies are sharing, giving them essentially separate placentas. Though we were in the beginnings, she said most of the time this progresses and it is pretty much inevitable that the surgery will be necessary. If we do nothing, the babies will most likely die.

We were devastated of course. I had done some research on TTTS, but it was not something I assumed was going to happen to us. She set me up with an appointment to come back in Friday for a recheck, as it can progress rapidly, and said she would get in touch with Charlotte.

I got a call in the middle of the week that Charlotte did not have any openings the next week, and they were hesitant to even see me so early in the pregnancy and being borderline/stage one. So she contacted Cincinnati, who said they are comfortable doing the surgery this early in the pregnancy, and did have appointments. We waited until the scan Friday to make an actual appointment at Cincinnati.

So we had our scan Friday November 20th, which unfortunately showed some progression. Baby B had a small amount of bladder fluid left on Tuesday, and now had none. There was also a small lack of brain fluid (i believe that is what it is called). Due to the progression in just two days, she said it was time to go to Cincinnati. After many phone calls from our MFM's office as well as Cincinnati, we finally got everything settled.

We are driving the 6 hours up on Monday night for our appointment on Tuesday. They said I will have testing in the morning, including an MRI, Fetal Echocardiagram, and intensive ultrasound, then in the afternoon we will sit down with the doctors and discuss our options. If it has progressed enough to have surgery, we will have it on Wednesday, I will have to stay in the hospital for a day, and then we will have to stay in Cincinnati for 5 days after that for monitoring.

I also want to thank Mary Slaman at the TTTS Foundation. This woman is amazing! It felt like she knew more about this than the doctors did. She was able to direct me to articles citing the importance of bed rest and nutrition to help this condition that had not been told to me by the doctors. She also arranged to reserve and pay for the FULL duration of our stay at the Marriott near the hospital, saving us so much money! This foundation is truly a lifesaver and what they are doing is making it possible for me to get the care me and the babies need and just focus on that, and not all the financial craziness. I will update Tuesday!