Paul Bone

2019 Sucked

Content warning: Infertility, miscarriage, anxiety, mental health, bushfire & climate. Also some four letter words.

More info: This article is part of a series about my experience with IVF/Infertility as a man. All the articles can be found here along with a note about feedback.

The Bone Family didn’t have a great 2019. This is the story so far of trying to conceive a second child, covering 2018 and 2019. The TL;DR is that this sucked, and 2019 sucked in particular with two miscarriages, several IVF cycles ending in weird results and one more-intense-than-usual IVF cycle (a down-regulation cycle), feelings of isolation and marital stress and coming to terms with being just a family of three. There were moments that were good of course, but this post is about getting my head around the negative, and sharing that experience.

Background and family

Many people who know me, know I have a four year old, Mr 4, probably because I mention him every chance I get: I just love him to bits. Mr 4 was conceived via IVF in 2014, after seven rounds of assistive reproduction (three IUI and four IVF with ICSI). My wife and I have "Unexplained infertility", we just don’t know why conceiving naturally doesn’t work. We’ve had some different hypotheses along the way, but the short story is that we just don’t know.

Anyway, we eventually conceived our son, and while that’s a miracle, let it be known that IVF is still challenging even when things work out. It’s also challenging because you’re doing this in addition to the rest of your life. In 2014 I also had kidney stones and hyperparathyroidism and ended up with more hospital visits than my IVF-patient wife!

2018

2018 went like:

August

IVF+ICSI cycle, out of about a dozen eggs collected, zero developed.

October

IVF+ICSI cycle, out of about a dozen eggs collected, two eggs developed, one transferred (that’s what they call it when they put the zygote into the woman’s uterus. The other frozen.

At this point there are two zygotes, which means we have a conversation about what we do if this cycle is successful and we still have one in the freezer, would we try for a third child (something I had always been against), but yet it feels wrong to "waste" it. These are big ideas, and serious conversations! So is normal family planning, the difference is that you know there’s a potential human (not a human yet) in the hospital’s freezer.

The pregnancy failed with a negative pregnancy test. (They test via blood, or the woman just gets a period before the blood test date.)

Note
It’s probably not normal to write "the pregnancy" at this early stage, since if you weren’t using IVF there’s a good chance you wouldn’t ever know that you were pregnant. And yet, there’s a developing human, even if only 3-7 cells big, inside the woman’s uterus. So I suppose this is the "technically correct" way to say it.

January 2019

We started the year pregnant, but we didn’t know it at the time. We naturally got pregnant, which was a huge surprise on top of the surprise of being pregnant at all.

There’s a bit of a trope around this that a couple have their first child via IVF, then their later children naturally because the IVF somehow "fixed" something, or showed their body how. I’ll explain the problems I see with this in a future article, But the short answer is to imagine yourself as someone that can’t possibly get pregnant naturally (for whatever reason) and someone is saying "Don’t worry, miracles happen" meanwhile you know it’s untrue.

We have unexplained infertility, which means that we don’t know why it wasn’t working naturally, but that it was never actually impossible, it was just really really unlikely. Let’s say that (population average) people have to roll a 1 on a six-sided die each month to see if they fall pregnant in that month. But my wife and I have to roll a 1 on a 20 sided die each month, (I’m mostly inventing convenient numbers, but they’re in the ballpark). Using IVF is like paying $12,000 per month ($4,000 is reimbursed by medicare) to use the hospital’s 10-sided die, rather than the 20-sided die we have at home, it just improves the odds over what we can do naturally. And it’s still not as good as the 6 sided die our friends are playing with (which is not their fault).

My point is that we can conceive naturally, but that the probability is lower, and that this pregnancy was definitely a surprise, and feels miraculous, but isn’t actually a miracle (the impossible happening).

28th

Positive urine test

29th

Positive blood test

February sucked

1st

Miscarriage.

Bleeding started, then got a little heavier. My wife went to the hospital, I stayed home with our son. A friend met her at the hospital so she wasn’t alone. Blood tests confirmed that hormones were dropping and she was no-longer pregnant. From memory we were about 5 weeks pregnant. That might not sound like a lot, and didn’t seem like a lot to me at the time, but it’s enough.

It affected my wife more deeply than I knew, and for longer than I would have expected. It wasn’t as if I was naive enough to think she’d walk it off, but after the IVF to conceive Mr 4, then again to try to conceive #2, I didn’t know how deeply it would affect her. We’re still both learning just how deep this cuts.

And it affected me. I’m never really sure how much things affect me until I do something stupid because I just can’t think right. I think that happens because I don’t make the space or time to process it (which is another reason why I’ve started this blog, it’s how I’m processing all of it). It isn’t just that I don’t make the time to process this kind of thing, but that I expect that time to be granted to me for this, that for some reason the rest of my life with pause and I’ll be able to take a breath.

A few days later, a friend invited us to a pool party, which is great. Who doesn’t like pool parties, but my wife isn’t allowed to swim and is feeling uncomfortable: biologically a miscarriage is somewhere between a really heavy period and childbirth, she can’t swim.

So, I have unprocessed grief, a grieving wife, a three year old (who needs just as much attention as ever but he’s also confused about why mummy is sad and daddy is tired). So parenting around the water is my job, which isn’t a problem. However I’m now using 100% of my concentration on parenting, on being near other humans when I’d really rather just be left alone, on following the commands of my wife and trying not to snap at her, and struggling with my eyesight in the lighting of our friend’s backyard. So I have no concentration left to think about what I’m doing myself that I forget to take my phone out of my pocket. I utterly drowned a perfectly good Pixel 2. I know that’s not the end of the world, and I’m sad for the phone. I’m annoyed at my own stupidity to leave it in my pocket, and frustrated at yet another thing gone wrong.

It’s a symptom of where I was at emotionally, I should have pushed back on what was being asked of me. Not to the extent of staying home because I really wanted my son to be able to swim and have a chance to see his friend, especially since his mum and dad had been no-fun lately. But I could have pushed back on how we do swimming, and spoken up saying that I can’t manage myself, our son, and my wife’s needs in that environment at that time. It’s just one way in which I hadn’t realised I didn’t have the energy.

February - March

We’re back to trying again.

So we had a zygote in the freezer. It gets defrosted and transferred…​.Negative pregnancy test.

March

Another IVF cycle, several eggs extracted, zero develop.

That’s weird, another cycle with 0 eggs developing?!

IVF jargon

It’s time to explain some jargon.

After her period, the mother begins a course of hormones to grow a whole bunch of eggs (usually the ovaries only grow one at a time). And yes, they’re all present at birth but they need to grow a little further before being released. Then the night before she takes another hormone injection called a trigger, this is the prompt for the ovaries to release the eggs. This trigger is timed to be a specific number of hours before the surgery, and can be amusing when your wife has to duck out of a Hunters and Collectors concert to go take an injection in the storeroom of the theatre at precisely 7pm.

To extract the eggs the following day the doctor guides a needle through the vagina, up into the uterus, then pushes the needle through the uterus wall into each of the ovaries to take the dozen or so eggs that the ovaries were timed to release.

At this point the doctor has a rough count of how many eggs were extracted, and may know their sizes (how developed they are). Hopefully the doctor speaks to the mother when she wakes up, but sometimes gives this information in writing. While the mother is recovering the eggs are either placed with the sperm, or for ICSI (our case) the sperm are selected and placed inside each egg. They’re put in an incubator and left overnight.

In the morning (day 1) they’re checked, the eggs are now zygotes and should be growing and getting ready to divide. So when I wrote above "zero developed" in two of the previous cycles that means that of the 12-or-so none developed into zygotes or continue growing properly. At this point the doctor will phone us and tell us the news (positive or negative). There’s normally some loss at each step, including this one, but zero is a bit, terrible, and weird, and the doctors don’t know why.

May - June

Another IVF cycle, several eggs extracted. This time in the phone call (day 1) the doctor tells us that there’s only one developed. Because there’s only one there’s no point waiting the normal four or five days before transferring it to partner’s uterus, so they’ll transfer it tomorrow (day 2). Normally when there are a few you can wait a few days and see which ones continue to live and transfer the strongest one(s).

The transfer didn’t go according to plan. We got a message/phone call the next day (day 2) saying the procedure had been canceled because the zygote has deformed nuclei. We don’t know what that means, only that it can’t be transferred. Bugger.

The doctor is confused and doesn’t know why this is happening. And in that message or call (I can’t remember) to say that it couldn’t be transferred she says we may have to resort to "more extreme methods". My wife and I don’t know exactly what "more extreme methods" are, but we suspect it’s donor eggs, or exploratory surgery or something of that magnitude.

Each try ends in disappointment and sometimes heartbreak, to some extent you get used to it, but in other ways it’s a cut that has not finished healing and then you scratch it again and it opens again and it’s a bit more pain. In these cases with the "zero developed" or "abnormal nuclei" it cuts differently: it’s not just a matter of bad luck as it appeared to be in 2014, but we don’t know what "it" is or maybe it is bad luck?!

According to my calendar this was most-likely June 7th. I didn’t have time to process it before I had to fly to Canada for business on the 17th. This was just enough time to put myself together enough to function at work meetings and with so much face-to-face time at work (usually I work from home). Oh, and I was also managing the construction of a deck on our house.

July: Down-regulation

So the cycle that our doctor wants to try is a down-regulation cycle. This is where the woman takes a longer course of hormones, starting with the pill to stop her menstrual cycle. Then starting up her cycle again via other hormones and then followed by the usual IVF hormones and cycle. I forget what it’s supposed to do medically, apart from "turn it off and on again" to see if that helps.

My wife has used the pill before, and we knew she had some side effects, but never really noticed the side-effects this heavily before. The big one was her anxiety, she’s always been somewhat anxious but that got dialed up to 11. We both noticed and found it quite difficult to manage. I don’t remember the other symptoms specifically, but I noticed that we were having more trouble communicating and getting along with each other. It felt as if she wasn’t her normal self (personality change).

I’ve had enough

It’s hard to explain this without all the details which is an article of its own. So instead I’m going to need to leave that for later and give none of the details, but a bit of the feeling and conclusion. Hopefully I’ll get the details untangled enough to write about in the future.

Our everyday working relationship had deteriorated (we still functioned, but most interactions were either "meh" or negative), due to a few factors but the big one was IVF, it’s stresses and the effect of the various hormones on my wife. The other factors were:

  • The relationship with my wife:

    • not spending quality time,

    • communication.

  • Work stresses including some miscommunication.

  • Social isolation.

  • Poor support network.

This all added up to IVF is no-longer worthwhile for me. The cost is greater than the potential benefit, meaning that.

  • I didn’t want any more IVF cycles after this one

  • I hoped that this cycle would fail so that we wouldn’t then have to deal with the pregnancy and infancy of a new child. Why? Because I was all out of spoons due to dealing with IVF+life. I could not foresee having enough spoons to be a dad for a new baby.

This also meant that I had finished the grief of not being able to conceive a 2nd child and reached the "acceptance" stage. We were a family of three, and that was it, it was good, I was happy with that. (I know that sounded sarcastic, but it’s not, I really was/am happy to be a family of three.)

One thing remained though, I didn’t want to tell my partner and break her heart. Not only would that hurt her, but it would be me that hurt her. After each cycle with the doctor giving bad news I didn’t want the last stab in her heart to be from my words. And how would she react? Would she hate me? Would she leave me? Would we remain together but gradually build more and more resentment? These seem less realistic now (but still possible), but at the time these were very real possibilities.

I did tell her this though. One day it all exploded over something tiny and in the following hours, between sobs, I told her how I felt. Without sounding like a Christmas special the most amazing thing happened; she listened. She listened to how I felt, and she could see that I didn’t want to hurt her and yet honestly felt this way. She did not process it as me breaking her heart, but as me opening my heart (and struggling to do so!). My wife is the best I could possibly deserve.

It is possible to abort an IVF cycle. Either one of us can withdraw consent, it doesn’t have to be something we do together. However I would not do this, when the cycle started I had committed to it, and so I would follow through.

Meanwhile I’m scared that if we continue with IVF after this cycle that it’ll take all of my energy/time/patience, and that I won’t have any more of these, or any more love, for my wife and son. And I’m scared of loosing them because we’re trying to chase a potential second child.

August: Down regulation - continued

Back in June we’d started the down regulation cycle, now it’s August and finally my wife’s mood is improving. Her mood is not just improving from the down-regulation cycle, but also since the miscarriage in February. We’d noticed when now in August she’d been listening to more up-beat music, and singing along, and it was lovely to see her in a happy mood. But it also showed us just low long it’d been since she had been in such a mood.

18th August: Egg pick-up day. What’s the result of this extra-difficult cycle?

Six eggs extracted, Five fertilized, and again we got the phone call the following day to say that zero developed.

At this point we’d kind-of come to expect it, so it didn’t hurt too bad. On top of that I was also relieved, for which I felt guilt.

September: The end

Over the next couple of months my feelings begun to relax a bit more. Our doctor has recommended one last cycle, with a simpler/easier protocol. Lower hormones so as not to "overcook" the eggs. My wife wants to try this one last cycle, even if there’s a small chance of success she wants to try. I don’t want to.

We put off the decision for a little while. We’ve been taking breaks between cycles like this the whole time, to give us both time to recover emotional energy but also to give Liz’s body time to relax.

We had initially decided that if we do try again it’ll be in November, and then found that our schedules had filled up and it would need to wait until February 2020, or risk pushing us both too far.

November: pregnancy

18th: After some early pregnancy-like symptoms my wife did a home pregnancy test. Just like in the beginning of the year both of as are thinking "it can’t be" and "we’re just ruling it out". But the test was positive and confirmed by a blood test the same day. This is another spontaneous pregnancy, that’s two in twelve months and zero success with IVF.

This did my head in. Like I had said, I wanted the IVF stuff to end and I didn’t want it to end with a pregnancy because I did not think that I had enough emotional energy to care for a new baby. Part of being "done with IVF" also meant that I was "done with pregnancy/babies". Now that I’m writing this several months later I cannot properly remember what I was thinking at this time. My best guess is that because we have infertility then the way to have children is to use IVF. I want no more IVF so in some flawed logical induction that means I want no more children? Maybe this is only temporary and I might want children once other feelings calm down? Or maybe I can’t remember because I was afraid to really acknowledge some of it, because it means disappointing my wife / breaking her heart and to some extent "standing up to her" (asserting myself more)? Or maybe I was still caught up in the feelings of July-August and thinking irrationally?

Here is where I needed, and still want, the support of other men in the same position. I saw a counsellor, and that was okay I guess, but what I really want is to speak to someone who has been through something similar, or just know that they exist.

Anyway a new baby is coming, and I was very much at a stage of disbelief. As a partner of a pregnant woman, I find that it’s easy to forget that a baby is coming until your partner really begins to show, and everybody starts saying "congratulations". So most of the time I forget. When I do remember I’m terrified.

When my wife was pregnant with our first child I felt the general terror that any new parent feels. Plus the additional fears and worries that our child would inherit my eye conditions. This time I had some very specific fears: I’m scared that I’ll lack the emotional energy to take care of the new baby, to be patient when they cry because their tummy hurts, because I’ve already been operating beyond my limits since June. I was absolutely terrified that I wouldn’t love them enough, that I don’t have enough love in me to give out, because I gave it all out already this year. Or would I have enough energy/love for the new baby but have none left for either my wife or Mr 4 and it’d drive us apart.

December

I had been working on reminding myself that a baby was coming and talking myself through the feelings above. I wasn’t finished this process, but I was no-longer terrified. Hearing the heartbeat and talking about how Mr 4 would have a little brother or sister helped.

Meanwhile my wife’s anxiety had become worse again. Some of that is the hormones of pregnancy (the same way the pill affected her in July). A lot is also because she’s worried about loosing the baby, particularly with the shadow of February’s miscarriage hanging over us.

Being IVF patients we had the first two scans with our IVF doctor before being referred to the obstetrician for care. The first scan (6 weeks) showed a fetus/embryo, with a heartbeat, but also a haematoma. This is a blood clot caused by bleeding between the uterine wall and the gestational sac. This is a risk to the pregnancy, but it’s hard to say in what ways at this point.

The second scan (7 weeks) shows the fetus growing, but a bit more slowly than it should be. The haematoma is also growing. The doctor says that we have a 30% chance of loosing the pregnancy. That figure upset me, I guess on top of everything else I did not want this baby/pregnancy to break my wife’s heart: I’m afraid of the now very real possibility that it will (at this point a typical couple has a 10% chance of miscarriage). Our doctor attempts to reassure us that there’s a 70% chance that it’ll come to term. But it still feels like my heart just got punched in the nuts. Besides, even within that 70% what are the chances of other complications? or health risks for the child later?

Note
At this point I noticed that the doctor was not saying "baby", but "pregnancy". I’m sure that’s deliberate and I think we can all guess why.

Our next scan (9 weeks) is with the obstetrician, on Christmas eve. The trend continues. Baby/fetus is not growing as fast as they should (now measuring eight weeks and two days), and the haematoma is growing, it is now twice the size of the embryonic sac. But the heartbeat is very strong and we even saw them move! After the appointment we drive to my parents place in East Gippsland for Christmas.

Bushfires

You’ve probably noticed that Australia has had some pretty awful bushfires this summer. We checked the warnings before we left home and it was safe to travel. While we were there the smoke continued to increase. We had a lovely Christmas (especially Mr 4) and left there on the 29th.

29th: When we got back home to Melbourne we saw the warnings, all tourists to leave the East Gippsland area (a popular spot that time of year) because if it turns bad the emergency services people just won’t be able to help residents plus tourists.

30th: The warnings got worse again. Asking residents to make (and act on) their go/stay decisions and other preparations. My parents chose to stay.

Miscarriage

31st: Some light bleeding had started over Christmas and when it got heavier on the 31st we called the obstetrician and booked a scan. That morning we joked that "well, if it’s a miscarriage it’s sneaking it in right at the end of 2019. (2019 sucked) We also spoke about how it might just be the haematoma "going away" and everything will be okay.

My wife went to have the scan and I stayed home with Mr 4. The fetus now measures 8 weeks 3 days. It had grown one "day" bigger in 7 days' time. There was no heartbeat. We’d lost it. 2019 sucks. Both our hearts had been punched in the nuts again. A D&C was booked for Friday.

That evening I watched the emergency reports as the bushfires got closer and closer to my parents house. They were precisely in the path of the fire. They had been sending some pictures of the column of smoke blowing over them, with embers falling on/near them starting spot fires.

I heard the NYE 2020 fireworks outside at about the time the wind would have changed for them and blew the fires in a different direction. As far as I can tell a major fire was between 10 and 20km of their home.

2020 & The future

The wind changed for mum and dad and blew the fire away.

My wife passed the fetus at home, and was able to fish it out of the toilet and take it to the hospital where they can run tests. No D&C (the procedure where they vacuum it out) was necessary.

I’m in a better place now that I was mid-2019. That’s why it’s even possible for me to write this now, which I could not have done earlier. I don’t know how easy "feeling better" will be to maintain. But it’ll have to be something I work at, especially if we continue trying to grow our family.

Since June and those "abnormal nuclei" we’ve both been preparing ourselves for this being the end. We’ve started giving away the baby furniture and cloth nappies. We haven’t decided if we’ll do that "one last IVF cycle" that our doctor pitched back in August. What I know for certain is that I don’t want "one last try" then "one last try" again and again. I don’t want to wait for our lives to change and I’m ready to move on to the next phase: watching Mr 4 grow up. But we need to make a decision together.

At this point anything could happen. IVF might work, a pregnancy might go to term, or nothing at all.

Thank you

Thank you for reading. If you found this interesting or moving please share it. More people need to hear stories like this to remove stigmas from infertility, IVF and miscarriage.

There’s plenty of side-points to discuss, and even some main ones, I hope to publish more articles in the future.