On our 3rd anniversary, October 16, we found out we were going to have twins! What a surprise. We were so excited and scared at the thought of having 3 babies under the age of 2.
A few weeks later the doctors told us the babies were identical twin girls. However, they were starting to see signs of a condition called Twin-to-Twin Transfusion Syndrome (TTTS). These signs included one baby being bigger and having more amniotic fluid. If the fluid for 1 baby is above 8cm, and below 2cm on the other baby, that is the true sign of TTTS. I was to go for ultrasounds every week in order to monitor their condition.
As the weeks passed, the differences became more pronounced, and when I was at 16 weeks my perinatologist said that he was going to call Dr Quintero in Tampa because it appeared that they did in fact have TTTS. Dr Quintero is one of a handful of fetal surgeons who does laser surgery to cure TTTS. We spoke with Dr Quintero that Friday and he said that we didn't quite meet the criteria. Paige's fluid level was under 1cm, but Casey's level was at 7.2cm (not yet at 8). He gave us the option of coming down to Tampa on Sunday and he would do the ultrasound to check again. If she was at 8 he would do the surgery that week, but if not we would just drive home. Otherwise, we would wait until my next appointment here and see what happened then. We decided to drive to Tampa on Sunday because Paige's condition was getting critical and we didn't know if she would make it another week.
When we met with Dr Quintero that Sunday, Casey's fluid had increased to over 8 and we now met criteria. Paige was virtually 'stuck' to the uterus wall with no fluid. Dopplers showed she was anemic, and she had no visible bladder. Despite Casey's increased fluid level, she was not showing any signs of distress. Surgery was scheduled for that Wednesday, December 24.
The surgery went well, and Dr Quintero was able to identify and laser all 4 of the connecting vessels in the placenta. We had a rare case in that all 4 of the vessels showed the blood going in 1 direction - from Paige to Casey. There were none going the other way. There are 2 big milestones after this surgery - both babies surviving after 24 hours, and both babies surviving after 4 weeks. That night in the hospital was one of the longest ever because we knew how important the ultrasound the next day would be. Thank goodness for Ambien.
Both babies looked great on the ultrasound the next day - Christmas. Paige already had a visible bladder and some more fluid. I was released from the hospital and the plan was to stay in a hotel overnight and go back to the hospital the next day for another ultrasound, and then go home. We got to the hotel and I took a nap. I woke a couple of hours later and started leaking fluid. I called the doctor and he told me to stay on bedrest that day and he would see me tomorrow as planned. Although he seemed so relaxed about the whole thing, we knew this was not good. The ultrasound the next day showed that the membrane around Casey's amniotic sac ruptrued where he made the incision for the surgery. She still had a little over 3cm of fluid and was not in distress. In order to fix the hole, Dr Quintero did an amniopatch, where he stuck a needle in my belly and injected platelets and cryo into the sac. Apparently, these solutions act as a clotting agent and fix the hole. Once the sac fills with fluid again, it will stick to the wall and be sealed. We now had to stay the weekend in Tampa with me on bedrest at the hotel. We had another ultrasound on Monday and saw that the hole was sealed and both babies were doing ok. Finally, we got to come back to Georgia.
So we are back at home and I am now on bedrest at home and going for weekly ultrasounds with my doctors here. The first few appointments were very stressful. The doctors were skeptical about Paige. Although she now had more fluid, she had abnormal doppler flow in her umbilical cord. We expected her to start catching up on growth now that the TTTS was corrected, but she continued to fall under the 3rd percentile. It was clear that she was suffering from selective intrauterine growth restriction (SIUGR). When I reached 26 weeks (March 2), Paige's flow became a bit worse and growth slowed even more. The doctors decided that I should be on hospital bedrest so that they could better monitor her condition.
The first 2 weeks in the hospital went fine. I missed Ellie tremendously, but Joe and his mom brought her to visit on the weekends. She was very good when she was there and liked to take wheelchair rides with me. At 28 weeks exactly, Casey's membrane ruptured again. I was put on antibiotics for 5 days, and the babies we monitored daily by ultrasound. While the doctors said there was a small risk of infection, they were still not really worried about this hurting Casey. They said that even if she had very little fluid, her lungs were already developed enough at this point that it would not hurt her. Their main concern continued to be Paige.
On March 22 (29 weeks and 1 day), I woke up a little after 7am not feeling so good. I asked the nurse to take my temperature and it was 101.6. I was starting to feel crampy, and it turned out to be lots of contractions. I was moved down to labor and delivery by 8:30am, and moved to the OR for a c-section at 9:30am. I had to be put under general anesthesia instead of epidural because they did not want to risk getting the infection into my spine.
Casey was born at 9:50am at 2lb 15oz, and Paige at 9:51. Our little peanut weighed only 15oz. Despite her small size, Paige was stabilized relatively quickly. She was put on a ventilator at first, but they were able to remove it after only 24 hours.
Casey, however, was not doing so well. The infection had entered her bloodstream and caused her all sorts of blood pressure issues. It all proved to be too much for her little body to handle, and on March 27, just 4 days after she was born, we lost our little girl. We are completely heart-broken by her unexpected loss, but know that Casey is now watching over Paige and giving her the strength she needs to get well and come home to us.
We are so touched by the out-pouring of love and support we've received from our family and friends during this time. We feel very lucky to be surrounded by such a wonderful support system.
Here are a few pictures shortly before she passed.
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