Tuesday, September 6

The rocky road of infertility

So while I am in a good headspace, here is our story up until now.  I have skimmed over a few medical details, but I haven't left much out.  If you are upset by loss, maybe this isn't the post for you to read.  As I said yesterday, this has a huge impact on who I am, where my marriage has gone, how I see the world.

I met Mr Lina about a year after each of us had left long term relationships, you know the kind you have through university that are pretty formative years as an adult?  It came out early in our relationship that he had made a choice to not have children, but that year of being single had him questioning a lot about himself and he wasn't sure now.  So I took a few days to myself, I thought about life without children.  I thought about life without Mr Lina.  I had been so sure from the first kiss when I was hit with stars and images of auburn haired children that he was who I wanted to build my life with.  He has the kind of sense of humour that works well with children.  This was a bombshell.

So I came to a conclusion.  I could not go through life without being a mom and feel okay with that.  I didn't care how I became a mom, but it was going to happen.  That would be part of my identity.  BUT... I knew he needed time to see how he felt.  Being single, it hadn't been an issue.  He had never thought about having children with me, and I'm very different from his ex (she's nice, we're friends, but would not have made good parents together).  I wanted open discussion, I could ask him about his thought process at any time.  If he ever decided that he did not want kids, he needed to be fair and leave me because it was that important to me, but he could have the time to think about it without pressure.  It did take time, lots of conversations, analyzing time with friends, discussing how we saw life with children, our attitudes about parenting.  Eventually, he decided that he did want children and he could be a good father and we got married.

I went off the pill, Mr Lina had some surgery to reconnect snipped tubes, we tried.  And tried.  And tried.

My cycles were as irregular as they were in high school prior to going on the pill.  Mr Lina's sperm count was dwindling.  We were told to go to a fertility clinic.  So we checked out two, one was more to our liking than the other and we're still with them and I would still recommend them.  We had tests, lots of tests.  It was decided that IVF with ICSI was our best route.  This means they would extract my eggs moments prior to ovulation and take each egg and inject it with one of his sperm.  With IVF they just let the eggs and sperm hang out in a petrie dish, but we don't have enough sperm to risk that, so ICSI is the additional step.  3-5 days later, they pick the best 2-3 (3 in my case) and let them loose in my uterus.  Often there are extra embryos, the best of those are frozen.

I did that and nothing happened.  It sucked but it was okay, it's only suppose to work about half the time.  We had 3 frozen embryos from that first IVF cycle.  Frozen embryo transfers (FET) are so much easier, they line up my cycle with the age of the embryos and thaw them out and let them hang out in my uterus and you cross your fingers.  There are many drugs supporting that (although not as many as IVF), but essentially that's it.  I had my first positive test.  With a viable pregnancy, they should see your HCG levels double every 48-72 hours, which is why they test again two days later.  I failed the second test.  I was devastated.  Marriage prep classes do not cover grief, particularly grief that no one else sees and there is nothing specific to mourn.  We found a marriage counsellor, best decision we have ever made.  We still see her from time to time but generally we have good coping skills.

We bought a "3 pack" of IVF at the outset.  Essentially, it was like insurance.  If I got pregnant on the first try, well, you paid too much but you had a baby.  Why would you complain?  If you got pregnant the second time, you got it at a discount.  The third time, well, the clinic sure isn't making anything off of me. 

So we did IVF again.  And I passed the first test.  I doubled for the second test.  They schedule an ultrasound at the clinic for 6 weeks which is really 2 weeks after the pregnancy tests as the 6 weeks starts with Day 1 of your period.  We were over the moon, it was wonderful.  My in laws were visiting us when we passed the second test, so we told our parents.  And then we went for the ultrasound and there was nothing.  No sac, no heart beat, nothing at all.  I take progesterone supplements to support the pregnancy up to the end of 11 weeks, so the miscarriage wasn't starting because my progesterone levels weren't plummeting.  I actually was told that I would be having a miscarriage soon, to stop taking the pills that were holding it back.

And we tried again.  I had enough frozen embryos for 2 FET cycles, 3 embryos for the first and 2 for the second as one of them did not survive the thaw.  Both resulted in positive first pregnancy tests and failed second tests.  They call this a chemical pregnancy.  If I wasn't going through treatments, I would assume that I had a cycle that varied by maybe 5 days, when really it was repeated miscarriages.

In between all these cycles we did more tests.  I've had biopsies of my uterus, I've had multiple sonohystograms, everything came back normal.  Yes, I have PCOS so I generally don't ovulate on my own and I overreact to the drugs that stimulate my ovaries to produce extra follicles (I had 28 follicles maturing with the last IVF cycle, it's like my little almond ovaries turned into walnuts).  But there wasn't anything showing that I couldn't support a baby.  My doctor suggested it might be my immune system.  There was a clinic in the US that specializes in these things.  For a good chunk of money we could send my blood to them and have it tested.  Sure enough, that's the problem.  My T ratio is elevated, my immune system recognizes the foreign object and rejects it.

Our last IVF cycle he threw both barrels of drugs at me.  I was on drugs to suppress my immune system, thin my blood to make implantation easier, we did IVIG which is an infusion of plasma from at least 50 different donors to further suppress my own immune system.  And I got pregnant.  I had a good reading for the first test.  And then it was dropping two days later, not failing, but dropping.  And I failed on the third day.

This frustrated our specialist.  From his perspective, he did EVERYTHING he could and I still lost the baby.  More testing and he wanted suggestions from the clinic.  He was suggesting a drug used for people with chronic immune issues like chrones, it's not tested on pregnant women but has been used by pregnant women with no sign of ill effects.  Still, he gave us time to think about it and do our own research, he wasn't going to push us into it and he wanted to know if that is the route that the immune specialists would recommend.  We paid to have a biopsy of my uterus and a sample of Mr Lina's blood sent to the US to see if it was different in my uterus vs blood and what happens when our blood meet.  Sure enough, the issues are worse in my uterus, but they didn't really give a full story on what to do about it. 

While this was going on and we were waiting for results, miracles happened and I got pregnant on my own.  I have been taking Metformin for a while.  Metformin was designed for diabetics but has a side effect of lowering testosterone so it is prescribed off label for women like me so I actually ovulate on my own.  The thing is, I didn't think I could get pregnant so it was a while between seeing signs and actually testing.  December 27th, 2010 I passed a home pregnancy test.  I phoned the clinic.  I passed their test with a level over 8,000 (home tests are sensitive at 25, the clinic considers me pregnant at 5).  It was the best New Years ever knowing that I was pregnant.  So I had to go in for an ultrasound on the following Thursday rather than a second pregnancy test.  There was a spine, a steady heart beat, little buds where limbs were going to be.  It's just a blur, but when someone tells you what you are seeing, it is beautiful.

And I was doing this on my own.  So the clinic said let your body do what it can.  Stay on your metformin, baby aspirin and vitamins.  But no progesterone, no IVIG, no prednizone, no Fragmin... We told our parents because we couldn't hold in the joy.  I was truly pregnant, 6 weeks and 5 days as of the ultrasound.  And on the Sunday, starting my 8th week of pregnancy, I started cramping.  And bleeding. 

We had gone to the hospital knowing this wasn't good.  Ultrasound was closed on a Sunday night, my HCG level was around 14,000, no where near as high as it should be that many days after 8,000.  It should double every 48-72 hours, at outside it should be around 64,000.  I was booked for an ultrasound at the hospital on the Monday while the worst of the cramping was happening.  They wouldn't let Mr Lina come with me.  I was crying and in so much emotional and physical pain.  The ultrasound results are key because it showed that while I was losing the baby, the heart was still beating, weak, but beating.  My baby didn't die and I lost it, this wasn't bad genetics at work, my body rejected the baby.

Which brings us pretty close to the present.  My specialist wanted us to try and repeat that "naturally" but with some medical help to make me ovulate.  It took 3 cycles to find the right dose, one cycle off for vacation and another month lost because medication that was suppose to make my period start didn't work and just left me as a crazy woman for a few weeks.  Since February when he came up with this plan I've ovulated once and nothing happened.  I have 4 frozen embryos left from my last IVF cycle.  And I will do my very best to give them the support they need.  But we're at the end and I know it.

I once read that IVF is like gambling at slot machines.  You just can't seem to stop pulling at those levers because maybe *this* is the cycle that will work.  And maybe those 4 embryos will become our children.  But I'm not doing IVF again.  I want to know that at the end of those cheques, the paperwork, the appointments, the questions, there is a child.  I have never believed that pregnancy equals motherhood.  I know I will mourn not experiencing that, but fathers don't get pregnant.  Are they less of a parent because of it?  So why should I? 

Right now, we're planning on starting the adoption ball rolling in the fall.  We want to go on a vacation around November, October is looking like a zoo of music and wedding.  Things may change between now and then, but Mr Lina is the one saying that is when he wants to make the calls.  I'm happy to go along with that if he's ready.  I know I am.

Some way, some how, someone is going to call me Mom.   I just haven't met them yet.

4 comments:

  1. I'm so sorry you've had to go through all that. I know what you mean about (potential) parenthood being a dealbreaker---it would have been for me, too, although it ended up I was pregnant long before we would've had the conversation.

    I wish you the best, whether it happens naturally, through IVF, or adoption. You'll be a great mom.

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  2. Awww... thanks. I think everyone at some point ends up on a road they wouldn't chose in life, but it's an important part of who they become.
    People keep telling me I'll be a great mom, one day I'll prove it. :)

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  3. What a complicated story S. I'm so sorry to hear that you have struggled in this way. I say, as long as you are happy to welcome a child into your life - in whatever way her or she comes along - you cannot lose. I wish you all the best with adoption.

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  4. Thanks so much. I love that thought of not losing. I may have to borrow that phrase at some point because it is so very true.

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Thanks for your comments, I love to have a two way conversation. I seem to be getting a lot of spam from anonymous users and am turning off the ability to comment that way. I really would like to hear from you so if you do want to add your two cents without an OpenId, email me at seraphinalina at gmail dot com.