Today I woke up remembering how I woke up a year ago fearful but so very optimistic. I laid there thinking about what was happening to my babies and wondered how our boys (I was so happy to finally know they were boys)we handling things in there. I imagined matching boy 'stuff'...toys, clothes, hockey equipment. I couldn't sleep so I got up and found a computer and wrote emails and online messages to let everyone know what was going on. Never did I imagine how quickly things were changing.
Cameron, is, of course, the reason I was up at 7:00 am today and today he seemed hard to comfort. He wasn't upset but seemed agitated...I wonder if it bothers him as much as it bothers me that this was the last 24 hours or so that he and his twin brother were alive together inside of me one year ago. I looked at him, held him close and realized we saved him a year ago today...that we came within hours of NOT saving him. Cole's body was giving out...the rapid progression of the TTTS proved that. How could I not be grateful to Cole for holding on for enough time for the surgery that connected him to Cameron to happen so that when he died he didn't take Cameron with him.
And yet how can I not wish that we'd known just a few days sooner so that the progression wouldn't have been so great? How can I not wish that TTTS had never happened? How can I not wish my sweet baby Cole was still here????
Below is another excerpt from the story I am writing though I'm not sure anyone is really reading these things. It's an account of what happened one year ago today....
On the morning of December 12 Dr. Ryan, met with us and scanned me at length again. He was a very reassuring person but seemed to be all business. We felt at ease with him but knew from his demeanor that this was a very serious situation. He explained TTTS to us again and discussed our odds. He said there had already been some changes in our recipient, Cole’s, heart and the fluid pockets had increased 2 cm’s in the 9 hours since I was last scanned. We wanted to do whatever we could to save the boys so the surgery was confirmed and booked. They began discussing the best place to enter the uterus and this seemed to take a long time. I had an anterior placenta and what I now know a velamentous cord insertion on our recipient though none of those terms were given to us. We did hear terms like acute TTTS but had no idea what that meant. I have since learned that having a velamentous cord insertion usually means poor growth in twins, often because they also have a poor share of the placenta. It is very rare to have both the cord problem and unequal share with the recipient baby…Cole…and a share of less than 25% does not often mean that baby will survive. Basically they just outgrow the placenta they have and do not have enough nutrients to survive. An anterior placenta is very difficult to do surgery on and some specialists won’t do the surgery if you have one. But as I said, I knew none of this at the time, only that I HAD to have surgery as soon as possible to save even just one of my babies. And so we sat in my room and waited for hours for the operating room to be ready and prayed and planned for these little boys growing inside of me.
The surgery happened at 5:00 that afternoon. I did not respond well to what was going on and had problems with anxiety attacks throughout as I drifted in and out. I think I was just so overtired that my body was rebelling. Dr. Ryan came to speak to us after the surgery and told us that he was very confident that he had gotten all of the affected vessels and that there were quite a number of them. The most serious ones were located right at the area where the membrane attached to the placenta and a septostomy had to be created in order to get to them. This, in essence, meant that our boys were now mono mono twins and their cords could entangle at any point. He told us this would mean frequent ultrasounds and likely hospitalization after 28 weeks. When this hole had been created, my husband later shared with me, our donor baby reached through it towards his very sick twin…like he was reaching out and reassuring him. Dr. Ryan went on to tell us that when the checked the boys at the start of the surgery that the fluid pockets had increased again and that Cole’s abdomen was completely full of fluid (known as hydrops) which now meant our TTTS was at Stage 4. He said his heart was also much sicker than before and because of this he would be sending me for a fetal echo cardiogram the following morning.