Ok, I admit I'm very bad at blogging since I have not done a post in a while. I am still recovering from one of the most devastating events in my life, and to be honest I have been to a lot of counselling since it happened so now the whole episode is no longer so raw but still aches and my grief comes in waves. My previous post recounted my baby's diagnosis, which completely devastated me after hoping for a miracle all week since the initial screening that flagged a potential problem. I had already started grieving, but having some hope hurt ...but still wanted to ignore the facts and hope it would all be ok and this problem would just go away... it was a very emotional time. Sometimes when I woke up in the morning I would remember the diagnosis and wonder, was that just a bad dream? Is everything really fine? Then I remember that yes, it's true, none of it was a dream, though it feels like one.
In the end the results came in, and yes, I was the "one" that was hit by lightning. Across all pregnancies 1:800, for my age 1:100, after my screening 1:8 for Down's Syndrome (Trisomy 21) and 1:2 for T13 and T18. That's still 7:8 chances that the baby wouldn't have T21 and 50% that it wouldn't have the other trisomies. That's still ok, right? NO. My optimism was shattered by the actual results, the baby did have T21. DH and I were so sad for our baby and we knew that was not the life we wanted for her. Who would care for her when we got old and died? We were not prepared to deal with a baby with such big problems at our age and without much help. My own mother is 81 and we will probably have to care for her in the near future. I was so sad that my baby would never live an independent life and would be not only mentally retarded, but probably have other health complications as well, the extent of which would not be known until after birth. Many T21 babies have heart problems and need multiple surgeries with painful recoveries, also there is a high rate of autism and early onset alzheimers, and other problems. Our little one had a lot of uncertainties and obstacles set before her, it was so unfair!
It was a terrifying time after receiving this definitive diagnosis, and one I hope to never relive. I had to make arrangements to follow through on our decision to terminate the pregnancy, given the test results. It was a horrible decision, but I know it was the right one for me. I know some people would not make the same decision and they may have different circumstances and beliefs that support that choice, that is the right one for them. I found it interesting to find out, however, that 90% of T21 pregnancies are terminated, despite the lack of general public knowledge about this topic and my previous impression that it was more like 50/50.
The termination was in some ways worse and in some ways better than I thought. I thought my doctor would look after me and the procedure would be done in a hospital, like my testing had been done. That did not happen. The genetic counsellor was very nice, but I think reluctant to actually do the procedure; clearly, it was possible for him to do it, but he made some excuses and directed me to a private clinic. He said I could only have it done at the hospital up until 13 weeks, and I was 13 weeks, 1 day when I got the diagnosis. I thought that was a bit weak. The test results were two days late, too, so I could have had it done if they had been on time. So I had to call around to different clinics, it felt so absurd after having gone through an IVF to get pregnant, take daily (painful!) progesterone in oil shots to sustain the pregnancy, and now I was trying to hunt down a doctor to end the pregnancy at an actual abortion clinic. I called 3 clinics, the first one was not very helpful. They said the doctor was on vacation, I had to go in for 2 days of counselling first, and pay $150 for the manditory counselling, presumably some sort of birth control counselling which was completely irrelevant to my case. The other two clinics both required paperwork to confirm the baby's diagnosis from the CVS, so I needed to get back in touch with the GC, which took another bout of phone tag. One was in a bit of a dodgier neighbourhood, so I went for the other one. I was a nervous wreck going there, I didn't know if there were going to be protesters. This clinic had been firebombed in the past (not recently) and I think they had changed locations several times. They had code words to get in, a password for when they contacted me, they also said that they wouldn't call unless there was a problem and they would just say "Donna called". My appointment was for Monday morning. On the weekend I went up to my mother's place by the lake and spent my last days with my baby, to say goodbye. When I got back I was a bit alarmed to see there was a message saying "Donna" had called. What did this mean? Was there a problem with the paperwork? Did I need to contact the other clinic as a backup and have it done there? Why was this so difficult? I just wanted to get this horrifying and inevitable chapter behind me and start grieving in earnest. If they couldn't do it for some reason, the process would be drawn out longer and I didn't know when I would be saying goodbye, I would have to go through this pain all over again. I called, but they were not answering since it was too early in the morning, so I just had to go in and hope all was ok. I was worried about protesters, and about how I would feel that day, and seeing the other women who were ending healthy pregnancies there. It was also maybe the last few minutes/hours of my pregnancy and I was just numb from emotional overload. I remember getting into the car with DH to go to the clinic, and feeling just empty and strange.
I wasn't allowed to bring large bags to the clinics. I guess some people bring weapons or something crazy. This was adding to my anxiety that some other people are so nuts that they will kill other people that don't comply with their beliefs. I feel angry at these ignorant people, they have never been in my shoes! And I don't know why the other women are here, but I don't pretend to understand or know what's best for them, since I have none of the facts. I really wished I never had to go to that clinic, though. Why wouldn't they do this in the hospital?
We got into the clinic with our passwords and ID check. They checked around and no one knew why someone called, but everything was fine. We waited together quietly in the waiting room, that was filling up with a few other women and couples. Most of them were young, in their 20s maybe. One girl looked very upset. I wondered about her and I wasn't going to go talk to anyone, but she looked distraught and I thought maybe I should ask her if she's ok. We went in together to sign some papers and talk to a counsellor. She told us about the procedure and gave me a pill for anti-anxiety. After that I had to go alone into another part of the clinic and change into a gown, have an ultrasound, then go into the procedure room. DH had to wait in the large waiting room all this time. He was there several hours on his own. The nurse put in the IV. The doctor came in, introduced herself and said "I'm sorry about your diagnosis". The drugs started working pretty well. She said she was going to inject my cervix, I forget with what. They did not give me the laminaria sticks as planned because they said I didn't need it since the baby was small. She was measuring 13 weeks 3 days, a few days behind and just on the cusp of needing the laminaria to get her out. In the end, they probably should have done the laminaria because it ends up they didn't get it all out, but that's a later part of the story...
I was terrified that it would hurt, but the drugs were fairly strong and I didn't feel much. They had the ultrasound screen moved away so I couldn't see it that day. The last time I had seen the baby was the previous week at the CVS testing and she was kicking and moving a lot. The procedure was a D&E so there was some noise and a scraping kind of feeling. It was over pretty soon and they led me to the recovery area to wait for the drugs to wear off. I had a heating pad on my stomach and waited in the room with several other women, one was the girl who looked so upset in the waiting room. She was totally asleep and they kept trying to wake her up. She still looked upset after she woke up. I was relieved to be well enough to leave that area and go meet DH in the other room, get to our car and go home. It was a bizarre experience, I just couldn't get over how this was so the opposite of our hoped outcome when we had done IVF. Coming home to the couch, I felt so glad that it was over and I had made it through the procedure and the day. I slept for a bit, then my mom, who was staying with me to make sure I was OK, said maybe we should go out for a bit, so we went to the store then came back.
The next few days, I have to say I still felt pregnant. Aside from a little bit of bleeding, which stopped, I felt pretty much the same. Emotionally, I was a wreck. I had planned to announce my pregnancy that week to my colleagues, and now there was nothing to announce. However, I was so upset, I wanted them to know that I have had a loss. It just doesn't make sense that I would be crying all the time for no reason at work. My aunt told me I should at least tell my principal what was going on, more or less. I decided I did not want to get into details other than I lost the baby/ miscarriage. It was too much to get into it more, and most of these people are just acquaintances anyway. It was terrible, I went in and this was the week before school started so many teachers/ staff were in the building but no classes were on yet. Everyone was setting up their classrooms and I just dreaded the "how was your summer?" question. Frankly, it brought up terrible memories of when my father died when I was 22 during the summer vacation, in a motorcycle accident, and when I returned to university in the fall I broke down every time I tried to answer that question. "Well, my father died..." And my 22 year old friends did not know what to say at that and mostly shyed away after their initial "Oh, sorry to hear that". So now, my teacher friends were saying "How was your summer? Did you relax and enjoy yourself?" And then I answer "Well, I was pregnant, and then I lost the baby last week". I was a blubbering mess going around the school to let a few key people know. I literally kept a kleenex in my hand the whole time in case I burst into tears, which seemed to happen every 20 minutes. I did let the principal know, and several other staff. I had also done a quick job of setting up my classroom, with the help of my mother who came in as well. I was exhausted and I had had enough, so I went home until the first day of school. Luckily, when the students arrived, I maintained my composure and did not cry in front of them. I got through the first day fine, and the first week. At home, I continued to cry all the time, but fortunately while teaching the tears did not come. Not that I could control it if I tried.
After 2 or 3 days I noticed my breasts had suddenly become painfully engorged. I had never experienced anything so strange because I am not the most endowed to begin with. I became afraid, though, of what was happening because they were like overinflated balloons that were about to pop. I looked like I had breast implants. I called my doctor but couldn't get an appointment until the following week. I thought I might explode before then. I looked online and saw that one remedy was to use ice packs and a tight bra to reduce the engorgement. My breasts started leaking milk. It was sad that my body thought I had given birth, when I actually didn't have a baby that would need this milk. A few days later it started going back to normal.
I was already going to counselling, since before the termination. I went to the counselling available through my work, and also a cousellor available through my fertility clinic. These couselors really helped me get through those weeks, and I continue to go to them now, four months later.
As I mentioned, the story did not quite end there. I went for my follow up 2 weeks later with my GP. I know now I should have gone straight back to my RE. I was still bleeding, so she said to come back in two more weeks. So I went back after 4 weeks. I was still off and on bleeding. I had just had cramps and passed a prune sized clot a few days before, then some very heavy bleeding. I considered going to the hospital because I was soaking a pad every 20 minutes, but it started letting up and I waited to go to my appointment. I thought at first it was my period, since it was 4 weeks past the termination. My GP examined me and said I was fine. I went back to the RE at 6 weeks and the ultrasound showed that I had some material remaining. She said I would have to do a d&c or otherwise we could wait and see, etc. I decided to have the d&c and the biopsy afterwards showed it was in fact a piece of placenta that was left behind, so it was important to get it out. I should have had it out sooner.
After that I did another IVF in November and we decided to have the embryos tested for chromosomal abnormalities, to avoid a repeat of this whole experience. To make a long story short (sorry, this is already so long!) we retrieved 11 eggs, 9 fertilized, 7 made it to day 3, by day 5 there were only 3 good ones left. We sent those 3 and 2 frozen embryos from my last cycle (5 embryos in total) to be tested by PGS in Detroit. Of the 5 embryos, 2 were normal, though they were "not very good quality". We were not able to transfer them that cycle, the following cycle was the Christmas holidays and the clinic was closed, so I'm supposed to go in for a FET in January. It ends up this January cycle is long for some reason (my first real "natural" cycle since the termination) so it will be more like February before the FET. I was disappointed that my last IVF cycle did not yield many embryos. In the end I had one from the frozen and one from the fresh cycle. It was a lot of time and money just to get one healthy embryo. I'm not sure what's next if the FET doesn't work. I think that brings me up to present. Sorry again this got so backlogged. I'll try to be better, but I was really too sad and bummed out to report. Hoping for a better year in 2012!