Saturday, 28 January 2012

Transfer Day is set

Well, I went back to the clinic today and once again got the alternate doctor.  This is the one I like better than my real RE so we were glad to see him again.  It's like he's our doctor now, we just have to keep going in when our doctor is off!  He said my lining was good at 12 mm already so there is no need to wait 17 days as my RE had said.  It's my cycle day 9 today.  He gave me a date for transfer, February 2nd.  That's groundhog day, DH's favourite holiday!  (DH loves that holiday because there are no expectations or family obligations, no gift giving, just an open invitation to get together at the pub with no pressure to show up or not.  We used to go to a pub called the "Groundhog Pub" but sadly it has gone under so we have had to improvise with other celebration locations.)  So this year we will spend groundhog day at the clinic.  The doctor said there was some flexibility in the date if we wanted to move it ahead or back, but we thought it was fine on Feb. 2nd.  So today was the first day that I actually felt a bit excited about this cycle, and truly hopeful.  I will take Thursday and Friday off work to rest, and chill out on the weekend, I think that should be enough time to give the embies a reasonable chance to get settled in.  I am just praying that they both survive the thaw, there is a chance they may not so that is quite a worry.  I booked my acupuncturist to come to the clinic on Thursday and do a session before and after the transfer, like he did last time.  Also, I'm going to see him one last time on Tuesday before the transfer.  I think the acupuncture may have been helpful in building my lining so far because I'm a bit ahead of schedule, which is good news.  This is a contrast to my last "natural" cycle that was super slow, I did not do acupuncture and it dragged on for 43 days.  I asked the doctor about that, he did not have any real answers but said that fluctuations are normal since my hormones have been all over the place with my last IVF and the termination.  He said I'm on a very high dose of Estrogen right now, so that will suppress ovulation.  Today I started my Progesterone in Oil injections as well.  I do one injection each day from now on until the pregnancy test.  I am well versed in this since I did over 3 months of daily PIO injections for my pregnancy.  It was bittersweet to restart with those.  The last time I did an injection I was happily pregnant, so it brought back some memories.  Those injections hurt a bit, mostly after a week or so when the progesterone "bubbles" start accumulating and there are less "new" spots to inject that are not already sore.  The progesterone takes a while to get absorbed and some of it sits there in a painful bump.  I try to massage them out, but that's a lot of massaging and I don't have enough time to get them all out. 
On Monday I start a daily dose of Medrol, for 4 days before the transfer, which the nurse said was a steroid to suppress my immune system.  She said this makes my body more friendly to the embryos and it won't attack them as a foreign body.  I guess it makes me more susceptible to viruses, etc as well.  And I'm also going to start 3 days of Doxycyline twice a day starting Monday, to prevent infections from the procedure.  Aside from that, I'm continuing with my thyroid meds- 1 1/2 pills a day.  I found out my TSH is now 1.6, which is good since it's under 2.  It was 3.6 in November, before the meds.  Normal is under 5, but the nurse said that under 2 is good for fertility patients since a higher number has a greater risk for miscarriage.  And finally, I'm continuing with the baby aspirin once a day, as a blood thinner.  This is because the PIO causes the blood to thicken and this helps balance that out.  Oh, and also my vitamin daily that has folic acid.  So that's a lot of meds to keep track of!  I have taken notes in my day planner and hopefully won't screw it up!  So here we go!  Hoping for a miracle, that the little frosties make it out of their defrost, and that they stick and grow.  Everything is crossed for a good cycle, otherwise obviously I will be so depressed because we will be starting over from scratch.  There are no other embies, and I'm concerned about how crappy my last cycle was.  Hoping groundhog day will be lucky for us! 

Sunday, 22 January 2012

Prep for FET, many fears

I woke up yesterday feeling terrified.  I'm afraid this cycle will fail and then I won't know what to do.  I'm afraid I will never feel relaxed and comfortable with myself, that I will be stuck on this island of IF and baby loss forever.  I'm just hanging on to a thread of hope that I may be able to leave, and I feel that thread unravelling.  I think I had some weird nightmare that night, too, but I can't exactly remember it.  I had another night sweat, completely soaking the sheets so I was wet and uncomfortable.  I have asked my RE about this previously and she said it's because of hormone fluctuations.  I don't think she understands how freakish this is to wake up and feel like someone has poured 2 gallons of water all over you while you were asleep.  I had to change my pyjamas, that were drenched, and also put down a towel to continue sleeping on, since I got up too early and it was gross to go back to sleep in cold, wet sheets.  This weird sweating makes me so afraid that there is something terribly wrong with me and I'm going through menopause, and my doctor doesn't care.  My GP asks me if I have the heat up too high or too many covers on.  I think if that were the case I would sweat every night and so would DH, but his side of the bed is bone dry, there is something wrong with ME!  I would like to know WHAT, and fix it!

I'm afraid of giving up on using my own eggs, but I need to move on at some point if the IVFs are not working.  I'm bad at making decisions like when is enough enough?  I feel like I've been drifting along for too long already.  I also feel angry at my RE for not stepping this up years ago and letting this process draw out ridiculously long.  I feel very alone with all this failure and grief and anxiety.  I wonder why or when my life became a lightning rod for bad luck and people probably think they will have bad luck too if they are near me. 

We got ready and went to the clinic.  I hate that place, but it's our only hope, so it's with mixed feelings that we go there.  It's like a factory with too many people and frequent screw ups.  I'm pissed at people who seem to breeze through that place and after a few visits are pregnant and rubbing their bellies in the waiting room.  I'm pissed at people with thin files, who don't know what they are supposed to do (take a number, sign up on the three clip boards, sit over there).  My file is like a giant brick now.  I know people see that file and look at me and think I must be a lost cause.  I'm also pissed at the staff who look at me and you can see on their faces the confusion ("what are you doing here?  Weren't you just pregnant?")  I got a different doctor this time, since my doctor was not in.  He asked those exact questions:  "I was wondering why you were in, I thought maybe you had a question because I thought you were pregnant"  I'm here for cycle day 2, yes I was pregnant, but... 

This doctor is so kind, I actually like him better than my real RE.  I wish I could switch to him but I don't even ask because I'm sure there would be issues with that and he would say no.  He was very compassionate and asked about how we were doing since we lost our baby, and he said he was very sorry.  I asked about my chances with these two poor quality embryos and he said that since they have been tested that is ALL that matters.  Normally embryo quality is graded on the visual appearance and that the chromosomal health is inferred by that, but often it is wrong, like in my case where an embryo that looks normal can make it quite far along before finding the problem and losing the pregnancy.  So he reassured me that the testing was a good idea, and it was great to know that I WAS cabable of making healthy embryos.  The nurse later was also reassuring, saying my FSH was good at 5.6 since some women at the clinic had much higher and had to take other meds to try to bring it down.  I left feeling more positive than usual about these things:  Good FSH!  I CAN make healthy embryos!  I have 2!  We're going to keep trying until this works!   ... but I was still a bit anxious. 

I've started my Estrace, 2 pills 3 times a day, also Baby Aspirin once a day, and my Thyroid meds once a day (1 1/2 pills).  Cautiously preparing myself for FET this cycle, hopefully.  I'm going back to the clinic in 8 - 10 days for a lining check.  Then the transfer should be on day 17 or so, when the lining looks right.

After my visit, I realized I forgot to ask a whole bunch of questions.  I suppose I got sidetracked with explaining to the doctor about my termination and receiving his condolences, etc. so I forgot about my concerns for this cycle.  I meant to ask about the freakish sweating- maybe he would have had a better answer about that, since I already know what my doctor has to say about it.  And I had some cysts last cycle, and this time I saw them again on the screen of the ultrasound.  I forgot to ask him what that means and if it would have a negative impact on this cycle.  My doctor had said before to take a month off partly to let the cysts come down, it looks like they haven't.  And I meant to ask why did I have such a long cycle??  It was 43 days long.  Is that bad?  What does it mean?  I should write this down so I remember to ask when I go in next time, though that's in a week so I doubt the answers will be of relevance by then.  I'm just afraid that this cycle might get cancelled and I'll have more waiting.  I that happens I will be soooo frustrated! 

I'm afraid for this year because of the many milestones coming up.  Of course I'd like it to be the greatest year ever by getting a BFP and a baby that comes home.  But if that doesn't happen then this year will be crap because I'm turning 40 this year, in May.  I can't see getting through that without totally freaking out.  Really.  Also my EDD is coming on March 4th.  That will be very tough, I especially won't want to hear about any other babies born around then.  I forsee a meltdown.  And Mother' Day in May will be awful.  Last year I felt terrible and freaked out, I can only imagine this year would be worse.  Am I a mother or not?  I'm sure most people in my life think I am not, though I still have videos of my baby on my camera.  I don't even want to think about Christmas and the holidays.  This year scares me a lot.

Friday, 20 January 2012

Cycle Day 1

AF has finally appeared.  On the one hand, of course I am disappointed that my chance for a natural miracle has eluded me, but really, who are we kidding?  This cycle was super long, too.  44 days!  I have never had a cycle so long.  My cycles are normally 28 or 29 days, always!  Maybe I am messed up since the termination, but it has been four months already.  Who knows?  I am actually glad to see AF at this point, because in the back of my mind I was wondering if this is some sort of early menopause going on, just to stick it to me further.  Thanks, Mother Nature!  I didn't go to the clinic this cycle, since they weren't going to do a transfer at Christmas I figured what's the point.  I am so tired of going there.  I'm just tired, period.  But I'm going back tomorrow.  Hopefully I will get started on my FET for this cycle. 
I'm afraid to even get my hopes up, but I'm afraid to not hope either.  I know that doesn't make any sense.  I don't know what to feel. 

Sunday, 15 January 2012

Hit by Lightning

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!