Lucas and Caleb's TTTS story Part 1

Our TTTS (Twin-To-Twin Transfusion Syndrome) Story

For many of our friends and family, you don't know the story of our nightmare. You know we lost Caleb and Lucas and that we are hurting very badly. We thought we would share our story to hopefully answer any questions. I am totally up for talking about the experience and our beautiful twin boys as it helps me heal some every time.

When we found out we were having identical twins who shared a placenta, I quickly did loads of research. i came across TTTs in many sites and learned the early signs. I knew it was a possibility for our twins, but prayed daily that it wouldn't happen to us.

On Saturday, May 29th, Willy and I arrived at the hospital due to me thinking I was leaking fluid. We knew from a previous ultrasound that both sacs had excess fluid. I quickly had gone home and knew as long as they had close amounts of fluid and they were the same size, TTTs was not to blame. On the way to the hospital we talked about what might happen if I was leaking fluid and just hoped and prayed it wasn't the case.

We were at the hospital for an hour and a half when the test came back saying that I was indeed leaking fluid. I cried so hard and I was so scared. Willy sat there, strong, holding my hand. I asked what happened next. The nurse said they would do an ultrasound, a visual exam, and then I would be admitted on bed rest until I delivered. I was 24 weeks and was hoping to make it until 36 weeks. I was going to be on hospital bedrest for 12 weeks and I was ready for it. Anything to keep my boys in me as long as possible. She told me that they have had moms in there for several weeks, so I kept this as my positive thought.

The ultrasound tech then came in to get measurements. He measured Lucas at 1lb 4oz and Caleb at 1lb 7 oz. He couldn't measure the fluid because he was having a hard time locating the sac line between them./ But he did claim that there seemed to be quite a bit of fluid around both babies. Their heart rates were great and they were moving around.

The on call doctor came in a confirmed that I was not dilating. She said they would admit me to labor and delivery. I would be given IV fluids, antibiotics, and steroid shots. The steroids were to mature their lungs and brains for in case we had to deliver early. She said the first 48 hours were the most crucial and I put that down as a milestone. She then said we needed to get them to 2lbs and 25 weeks and then 2.5lbs and 26 weeks. I was in this for the long haul and ready to do it. I was terrified! My babies lives were at stake. But I knew I was in the right place and we were being monitored.

That night was a rough one. I had to use a bedpan and really didn't like it. Even after I was informed it would be two weeks before they would allow me up to use a bed side commode, I held my spirits up. They came in to monitor the boys and me every couple of hours. The steroid shot BURNED as they shot me in the rear. I was uncomfortable and scared. But I was going to do this, with minimal complaints. They were my babies and I had to fight for them. They also could not put me on regular monitors for the boys since they were so small, and moved so much. But they did monitor my Braxton Hicks contractions to make sure they did not change into real contractions.

Sunday afternoon, more ultrasound techs came down with some high-end equipment to get a better look at Caleb and Lucas. They were quiet the whole time, looking hard at things I couldn't see. Willy was eating lunch and I was panicking a little. I wanted to know what they were looking at, what they found, and if our plan of action was changing.

My new on call doctor came down 15 minutes later to give me the results. It looked as though Caleb's sac had ruptured as he had less fluid than Lucas. This was rare because he was the top twin and usually it was the bottom twin whose bag would rupture first. She said they looked closely at the placenta and cords and everything looked good. I asked all the right questions and it seemed there were no signs of TTTS. I didn't ask specifically about TTTS but I felt from her report and my research confident. The plan was to keep on our path and maybe Caleb's bag would reseal itself.