That’s My Story and I’m Sticking To It

In my 20s, I attended a fair number of baby showers and pregnancy/childbirth-centric events.  It’s like a bad take-off of the Jane Austen line, “It is a truth universally acknowledged…”…that if you are a married woman in your 20s, you are interested in conceiving/pregnancy/birth.  As someone who was at best ambivalent about having babies (oh, the irony) at the time and more focused on going back to school, I found this emphasis frustrating.

When I arrived at 30, suddenly in a tearing hurry to have babies and getting into increasingly expensive, painful interventions that seemed to fail at every turn, the amount of social pressure turned into something far darker.  While there are areas of the US where women in their 30s having first babies is the norm, where I live, I was one of the oldest people in my peer group married with no kids.  Most of my friends have older kids, including a kid who is a teenager currently.

In the throes of infertility, I quit going to baby showers.  I stayed out of heavily female spaces because it felt like pregnancy/childbirth stories came up a surprising amount as a bonding activity.  I figured one day I’d get wherever “there” was to feel emotionally secure enough to start attending again.

I had the kids.  And then something strange happened: I still don’t belong.  Not really.

There’s more room for sharing of “less than optimal” experiences now than perhaps there once was, but there’s still a pretty heavy social price for relating certain parts of stories.  I’ve personally primarily experienced this in regards to miscarriages/pre-viable PPROM/NICU – so that’s what I’m writing about here – but I also know this happens in some very difficult ways in the infertility community as well for people for whom treatment doesn’t work or adoption doesn’t happen (because this isn’t my story to tell, here is an excellent blog post on that subject, as well as here).

The first time I naively waded into a discussion after my older daughter was born, I simply spoke part of the truth: that I’d been in the hospital for quite some time after my water broke at 21 weeks, the doctors thought the baby wouldn’t make it, I somehow stayed pregnant until 28w4d, and E was born, spent awhile in the NICU, and was now doing pretty well.  Never mentioned the infertility/IVF/miscarriages or the messiness of the subchorionic hematoma/hemorrhages.  I actually watched someone’s mouth drop open.  People weren’t sure what to say.  There was some shuffling and looking down and the subject got changed.  It wasn’t the last time this happened.  Eventually, I started being a lot quieter during these conversations.

“It’s like I’m Stephen King giving a speech at the romance writer’s convention,” I once quipped to Arthur.  I’ve also heard more than once complaints about how people love to tell expectant women the worst stories about infertility/pregnancy/childbirth and scare them.

Obviously, there’s an element of knowing your audience here and being polite or sensitive.  I don’t tell anxious pregnant women my story because of this, because they’ve got enough concerns going on.  There are times that people can’t handle certain stories and I get that.

But other times, there’s an element of silencing.  Stories that are too uncomfortable and too taboo to tell out loud.

As I was reading Sarah DiGregorio’s book on prematurity Early, a passage helped crystallize the vague sense of not-belonging I’ve felt at times: “I also didn’t want to be the bearer of dark information, and I couldn’t imagine how I would participate in ‘normal’ conversations about my baby.”  DiGregorio also notes that “The emphasis on ‘natural’ birth that is meant to be empowering can be painful for those of us who needed every unnatural intervention to get our babies (and/or ourselves) out alive.”

I hear that.

I know that I’m (thank goodness, as I wouldn’t wish this on anyone else) an extreme outlier to plenty of statistics.  Of people who struggle with infertility,less than 5% go on to use IVF according to the ASRM.  Subchorionic hematomas are one of the most common reasons for first trimester bleeding, but very few are anywhere near as problematic as mine turned out.  Periviable PPROM affects only around 0.4% of pregnancies.  While preterm birth is an enormous problem in the US, only a little less than 2% of all births and around 16-20% of preterm births are before 32 weeks’ gestation.  In other words, my experiences are definitely not the norm. I don’t think policies or procedures or public health should be based around women like me.

But the suggestion that anyone can (fill in the blank: get pregnant without intervention, get pregnant with intervention, prevent a miscarriage, give birth without certain interventions, prevent a c-section, etc.) has the weird effect of sort of erasing people like me who don’t fit into those narratives that we are ultimately in control.  At times, I’ve found it also can have the effect of almost turning my story into a spooky fairy-tale, the thing that lurks in the shadow, the uncomfortable specter at the feast.

It’s a tricky thing: I want women to be empowered to seek answers and have authority over their own bodies, I want to see fertility treatments covered by insurance but not hailed as ‘the’ solution to infertility, I want as many miscarriages as possible prevented but women not blamed for miscarrying, I want to see unnecessary c-sections curtailed and more choices for women but also the understanding that c-sections can be life-saving preserved, I want better public health to help prevent as many pre-term births as possible and also better NICUs/treatments for those that happen anyway, I want campaigns of information that can help people avoid bad outcomes but don’t ‘other’ or shame those that don’t fit or have less than optimal outcomes anyway.  I did nothing wrong and yet so much went sideways for me.  There was no extra prenatal care or information that would have helped me, there were d*mn good reasons I had c-sections, and I get very tired indeed at times of explaining why (fill in the blank) would not have prevented this, the suspicion that I had to have done something to make this happen because surely these things are preventable?

I don’t know the answer here.  I don’t know how we make space and genuine understanding for all of these realities.  Telling stories is a starting place, I suppose.

The Sisyphean Task of Bargaining

I was standing in the bathroom the Saturday evening before Christmas, getting ready for work, when Arthur appeared in the doorway.

“So, L called this afternoon,” he said slowly.  I inhaled sharply.  I knew the next words that would come out of his mouth.

“She’s pregnant.”

I stared at him miserably.  “How far?”

“Six weeks.”

“Oh,” I said.

~*~

It’s true that I would never wish the messiness I’ve been through on that quest on another person, and I stand by that sentiment.  I’m glad she’s not going through those things and I do hope all this works out well for her.

This happened to be the third pregnancy announcement of that week and I’d actually been pretty proud of myself for handling the others well.  I’d congratulated and been genuinely happy for them, even if there was a little achiness.  But the announcement of someone in the family (sister-in-law), someone I also happen to not get along with at all and have a whole ugly history concerning, felt like entirely too much.

~*~

The immediate effect was the utter destruction of the fragile détente Arthur and I had formed to get through the holidays and give ourselves a little bit more space about fertility and being done – or not.  It was one of the worst fights we’ve had in nearly 15 years of marriage, a conflict that encompassed weeks of silences, retreats, open clashes, sullen glares, smoldering irritation, and plenty of times when everything seemed fine on the surface as we worked together on the house, shuttled the kids around, or sat around together.  About the time we both figured we had to have exhausted the conflict, we found it hiding in the undone dishes, the mess in the bathroom, the recycling left on the kitchen counter.  Both of us wanted it to stop and neither of us could find a way to leave the trench we’d each dug.

My OB/GYN finally helped bring it to a more manageable level when I splattered infertility and failed IVF and jealousy all over the table by gently telling me that yes, with me at 37 and my history, we did not have time to wait forever.  “But you’re not doing more fertility treatments and three months is most likely not going to change your ability – or not – to get pregnant,” she said.  “Give it three months, breathe, then revisit how you and Arthur feel about this.”

~*~

None of this, of course, was truly about trying again.  With the permission to take that off the table and breathe, I could see that this was (again) about coming to terms with our fertility issues and the other things we’d put largely on hold in the thick of it.

I’ve wondered, for a while now, why I seemed to be stuck in the anger stage of grief.  L wounded me a couple of years ago and I just…haven’t been able to let it go.  Even though at some level, I’ve felt ready to do so for a long time now.  I was angry at Arthur for deciding he was done when it came to family building.  I was angry when the beta came back negative.

Ah, but grief is a tricky, slippery thing.  Because it turns out, I’m more in the bargaining stage of things.  It just doesn’t look like the examples I’ve seen given about bargaining, where people say things like “take me instead of my (fill in the blank)” or offer money or power.

For me, it looks much more like the famous myth of Sisyphus, rolling the rock up the hill every day, having it come tantalizingly near the top, only to have it roll back down.

If I can untangle the relationship with L, I can overcome the grief at being rejected by her as a sibling and also (not coincidentally) somehow cosmically make right the grief and loss of my brother’s death.  I will refuse to let this point of connection go – even if it takes the form of a horrible resentment that is incredibly unhealthy – because I can prove that I am worthy of this connection.  G-d knows I’m working hard enough at it. 

Roll, roll, roll…and it all comes crashing back down.

If I can persuade Arthur to try again, that is somehow going to make up for the miscarriages, the infertility, the disappointments, the bitterness. 

Up the hill goes the rock.  Down, down, down it comes again.

That’s bargaining.  The certainty that if I can succeed at these Sisyphean tasks, if I can get that d*mn rock to just stay put at the top, it will all be okay.

It is bitterly untrue.  Because a relationship with L, even if I theoretically could magically restore it to being BFFs and true sisters and all that (unlikely even under the best circumstances, we’re just very different people and there’s simply too much between us at this point), would never take the place of my brother.  Because trying on our own for a third child and/or the very real gratitude for my wonderful living children does not erase the miscarriages, add years back to my life/fertility, or put around $50,000 (preferably with interest) in my bank account.  Theoretically trying to have another child does not insulate us from the potential for loss in the future either.

I’m about a million years behind the times, but I was recently reading a Dear Sugar column by writer Cheryl Strayed, written in response to a woman who had experienced a devastating stillbirth.  “Nobody can intervene and make that right and nobody will. Nobody can take it back with silence or push it away with words. Nobody will protect you from your suffering. You can’t cry it away or eat it away or starve it away or walk it away or punch it away or even therapy it away,” Strayed wrote.  Her words hit me straight in the heart.

Nothing and nobody can bring Eric back.  Nothing and nobody can change the myriad number of small and large losses that encompass infertility/miscarriage.

It’s really easy at this point to start talking about how lucky I am (true) or how much privilege I have (a lot, also true).  It’s really tempting to slip back into the comfortable place that is denial, put up a nice wall in front of the rocks that are still sitting at the bottom of the hill.  While acknowledging and examining privilege is absolutely a worthy pursuit and feeling true gratitude is a marvelous thing, denial is neither of those.  It’s pretending that because other things have gone right, the grief isn’t there for the stuff that hasn’t.  Also tempting is kicking the rock in fury because, well, the thing should stay put at the top.

Whether it’s fair or not, those rocks aren’t staying at the top.

Recognizing that, and not forever taking fruitless runs at pushing them up – and ignoring people who tell me that surely one more run will do it or to please hide these unsightly boulders – is the challenge now.

Nope

The beta was negative.

It’s one of those sort of, well, moments, if you know what I mean – it’s by no means the end of the world or even up there among the cruelest moments infertility has dealt to me over the years, but it also just plain sucks.  Maybe because it’s such a reminder of the real cruelty of infertility, the part where you get your hopes up over and over and over again, only to have them dashed into the reality of a cancelled cycle or your period or blood at the wrong time or a negative beta or the scan that shows that the embryo is in the wrong place, doesn’t have a heartbeat, or is an empty sac.  It’s not so much the individual cr*ppy moment, it’s the compendium of varying degrees of cr*ppy, exhausting, or outright tragic days that make up a torturous drip that wears, bit by bit.

It’s also, a little, the pervasive sense of being a sucker who somehow allowed myself to go back to the glittery high-stakes roulette table that is fertility treatments and roll like I was going to win.  I know what those odds look like, and yet, somehow, allowed myself to get my hopes up.  Adding a bit of insult to injury, the RE that has – in the past – been fairly compassionate couldn’t be bothered to call with the beta results.  The nurse told me he wanted to “make sure I got the results earlier” (reality – it took around 7.5 hours from my blood draw to get the call and I had told them that I already knew it was negative as I’d taken a home pregnancy test beforehand) had a “full schedule” and would be “happy to offer us a post-cycle consult” but he knows that this was the end for us.  There’s no reason to go to the hassle of having my husband take off work and putting the kids in daycare.  We talked about it extensively at the pre-cycle consult. It stings that in the end, I didn’t merit even a five-minute phone call with tough news.

It’s the reminder that infertility still has a sting in its tail, long past the point I thought it could really wound me this deeply.

I don’t know what happens now.  We’re done with IVF and fertility treatments.  We don’t know whether or not to see if something breaks loose without medical assistance.  Or if that ship has just…sailed.  We’re lucky and exhausted and sad and grateful and angry all at the same time right now.  I guess mostly we now just sit with all the myriad emotions and live.

Infertility, Stigma, and Reading

Content note: Infertility portrayed in very problematic ways – possibly not the post to read if you’re in a tough place right now.

It’s old news now, but a month or so ago I read the Slate article that has been making the rounds in the infertility community – for good reason, it’s an excellent article hitting up a wide variety of issues and reasons infertility is particularly tricky when it comes to the workplace.  It also gets into how, despite more openness and acceptance for infertility, there’s still a very long way to go.

Since my own experiences with infertility/miscarriage, I’ve definitely noticed storylines or even short bits in books/films/TV relating to adoption/loss/infertility (ALI) far more than I did before.  While infertility is becoming more realistically depicted at times, I’m still somewhat surprised at how often I run across a particular trope that I strongly dislike: that women struggling with infertility/loss are scary.

Perhaps it’s because this came up in two books I read recently: The Alice Network (Kate Quinn) and Daughters of the Lake (Wendy Webb).

The Alice Network is largely about the female spy network that operated during WWI in France, interspersed with a young woman searching for her lost cousin in the wake of her brother’s suicide post WWII.  All the trigger warnings apply on this book both from the ALI perspective (unplanned pregnancies, abortion, loss) and generally (war, torture, Nazis, rape, etc.).  There’s a short bit, however, for a side character that includes infertility.

[Very minor spoiler ahead]

Spy trainer Captain Cameron went to jail because his wife decided to commit insurance fraud to provide for a child she couldn’t conceive.  Her infertility causes her to go to desperate, not entirely sane, lengths.  She conceives and recovers her mind.

[End spoiler]

Honestly, despite how much I was immersed in the rest of the story, this part almost made me put it down because it infuriated me so much.

Shortly thereafter, I picked up Wendy Webb’s Daughters of the Lake, a gothic suspense novel, on sale at some point and finally got around to reading it.  It’s definitely a ghost story, but in a mildly shivery sort of way that I enjoyed (I then promptly picked up a couple of her other books from the library and those descend into terrifying outright horror stories – this one I found much milder).

The novel had a baby/baby loss subplot, however.  Again, the theme of women deranged by loss and not having a child came up toward the end of the book.

Even setting aside artistic license and drama in novels, this Dear Prudence letter headlined “Help!  Sometimes I Worry That My Infertile Friend Wants to Kidnap My Baby” (I would not click over if you’re in a fragile place because yes, this accurately sums up the substance of the letter).  Prudie calls the letter writer’s comment to the friend unkind and gives the letter writer a thorough tongue lashing, but the letter itself definitely displays a truly alarming attitude toward those struggling with infertility.

I am so tired of women struggling to conceive or dealing with loss being portrayed as dangerous or harmful.  Infertility made me feel a lot of emotions.  Sad.  Angry.  Conflicted.  Anxious.  Frustrated.  Jealous.  Certainly these and many more, but while it’s true that I chose not to attend baby showers, disliked pregnancy announcements for the most part, and had to unfollow streams with lots of new baby/child pictures at times, I never wanted to harm anyone.  I never wanted to take anyone’s baby.  I never lost touch with reality.  I never wished that difficulty or sadness would befall anyone.  I’m not going to say that no one was ever disappointed in my reactions or that a few people insisted that I should be visibly overjoyed for pregnant women, but I tried – hard – to be kind and keep my feelings to myself in public.  Mostly because it wasn’t other people’s fault and I knew they weren’t having babies at me.  I just wished it was my turn and that conceiving had been easier (and – not going to lie – highly resented the amount of money we were shelling out for IVF).

This is why I write about infertility, in the hopes that reality will help to dispel some of the more pernicious bits of stigma surrounding this condition.  But it doesn’t help when a scene giving a picture so much to the contrary are popping up in a novel as widely read as The Alice Network.

Thinking Through my IVF/RE Experiences: Part 2

This is the second part of my coming to terms with my IVF/infertility treatment experiences, picking up when I switched doctors.  Read Part One here.

I’ve written in a Q&A format, mostly because that seemed easier than trying to form this as one narrative piece.

What was the difference between the first and second RE?

I switched because my second RE was the doctor who “officially” diagnosed my miscarriage.  He was kind and compassionate through that awful moment and promised that he would *personally* talk to my OB/GYN to help arrange the D&C.  I was super surprised the next day when my OB/GYN told me that 2nd RE had, in fact, actually called and talked to OB/GYN.  It was probably one of the first times I’d been promised something in that office and it actually happened.

I mean, that was the biggest difference.  2nd RE actually followed through on his word consistently.

I also appreciated the fact that 2nd RE wasn’t nearly as uncomfortable with the really strong emotions that come with IVF as 1st RE (2nd RE was a lot younger than 1st RE, so I wonder if that played a role).  After my ectopic/miscarriage (following my FET), I walked in for the follow up appointment loaded for bear, so to speak.  I cried for pretty much an hour plus, and I really appreciate that he didn’t try to cut me off or tell me that it was okay, we could try again.  He told me that it made total sense that I was upset, that we did need to take a break at this point.  Also, he was in favor of limiting the number of IVFs – 3 fresh was his personal max in my situation, and as he put it, that was only if we wanted to go that far at all.  It was helpful to hear that he wasn’t advocating for more and more and more and that it was okay to say enough.  In that follow-up, we decided we’d do one more round of fresh IVF, but if that failed, we were probably done.  He supported that decision.

2nd RE also was willing to try things that helped me get through.  I asked, prior to my FET, if my embryos could be grown out to blastocyst stage (they were frozen at 3-day) prior to transfer – and if they couldn’t get that far, then at least I’d be spared the 2 week wait.  Even though this wasn’t clinic protocol, he was fine with that.  He also would call me personally if things were changing/not going well/etc.

Did things go perfectly after that?

No, I mean, there were still communication issues at times between staff in the clinic, but it was better.

What helped?

I mean, honestly, it’s amazing how far listening and basic compassion goes.  Don’t sell false hope.  Follow through on your promises.  Keep in communication with patients.  Respect limits and boundaries.  None of this is reinventing the wheel – it’s stuff clinicians should be doing.  Unfortunately, it’s time consuming, and I think this is where problems come up.  My clinic offered a complimentary session with an infertility counselor with IVF, but it’s not really enough.  It’s not something that can be entirely outsourced – the doctors and staff at clinics have to be involved.

One thing 2nd RE did that I found helpful was that he gave me his personal work email – the one that went directly to him.  Funny enough, I never wound up using it.  But it took a HUGE load off me mentally to know that if I had one of those questions that wasn’t serious enough to call the on-call physician at 2am but was bothering me, I could send an email.  It also helped to know I could contact him using my own words and not have to rely on someone else passing the message along.

Also, when 2nd RE had bad or mixed news, he would sit down with us – I mean, physically, sit down.  I know this sounds sort of strange, but it helped because he wasn’t sort of “standing over” us and could make eye contact that way.

What are some thoughts on clinics and the experience?

I think one thing I would say to infertility clinics/staff is that even a single failed cycle, whether that’s IVF, IUI, whatever, can represent an enormous loss to the patient.  It’s time lost, emotional endurance lost, and as crass as it feels to mention money, it can be a big financial loss.  I mean, a single cycle of IUI or TI with injected fertility meds for me cost around $800-$2500, plus the time and emotion that goes into it.  Even clom.id or fem.ara, with timed intercourse, while cheaper, still ran about $150-$300 including the ultrasounds.  That’s not impossible, but it’s not an inconsiderable expense either.  By the time my husband and I got through infertility treatments, we had spent >$40,000.  For perspective, we spent about as much on a down payment for a 4-bedroom house + some new furniture + some new flooring.  We don’t live in a super expensive area, admittedly, but it’s still a boggling comparison.  Having a cycle fail doesn’t just mean all the emotional losses (which are considerable as well) but also a sickening amount of money and financial stability in many cases.

I was really grateful when the fertility clinic I used took down all the baby collages that patients could see.  I’m fine with clinics having stuff like that in strictly staff-only areas, but I remember really clearly passing the “baby board” with my miscarried fetus still hanging out in my uterus and feeling like someone had kicked me in the face.  I did not find it “hopeful” or helpful to have those out.  It made me feel like a defective failure.

It would also be nice to see “success” and “failure” re-defined when it comes to infertility.  I’m not a “success” because I had kids – I have absolutely no idea how I managed to pull that one out.  In other words, it’s not because I did something “right” or “wrong”, it’s just how things worked out.  Likewise, I wasn’t a failure when my cycles weren’t working and I miscarried twice in a row.  I would love to see clinics be much more mindful of patients as whole human beings who have intrinsic worth and dignity regardless of whether or not they have children.  I view success – when it comes to infertility – to be comprised of having a life one considers full and meaningful no matter what that looks like.  Basically, coming out on the other side is a huge victory.

Thinking Through My IVF/RE Experiences: Part 1

Over the years, I’ve sat down more than once to try to write about my experience with my first RE and IVF in general.  It’s proved trickier than I thought.  Some of it, I’m sure, is that women are socialized not to express certain (negative) emotions.  Some of it is that it seems like something I should be over.  A big part of it is survivor’s guilt.  I mean, I have kids at this point, so it seems sort of ridiculous to complain.

And yet, parts of this story still bother me because they should not have happened.  In real time, I was so deeply invested in the process, I couldn’t really dig into considering them, even in my own head.  I was all about acknowledging that something had happened, but also sort of glossing over at the same time.  At this point, it’s not so much about my personal stuff as entering a conversation about how to improve care for infertility patients in fertility clinics.

I’ve written in a Q&A format, mostly because that seemed easier than trying to form this as one narrative piece.

What went wrong with the first RE?

I’ve mentioned before on the blog that at the first consult with him, I expressed that I understood with PCOS that wasn’t responding incredibly well to drugs like Clo.mid and Fem.ara, it could take some time to get to the point where I was pregnant and that I had a wedding in June (this was in March) that we’d need to work around.  He sort of smiled and went “Oh, I think I can have you drinking water at that wedding instead of wine.”

I hate to say this, but while the rational part of my brain was going nope, nope, nope, the sad, worried, fearful part of me really wanted to hear that.  Because here was a guy who was confident and felt good about the whole situation.  He brushed away my concerns about being able to come in for ultrasounds during cycles because of my work schedule (“We deal with that all the time”).

Things escalated a little when I got a cyst after my first cycle on injected fertility medications, which I hadn’t realized could happen.  So I had a cancelled cycle and had to rest on birth control for a month.  The next cycle resulted in a huge overstimulation for TI/IUI and was cancelled as well.  I was getting concerned because I was going in for ultrasounds quite a bit – which hugely negatively impacted my work schedule, contrary to my doctor’s reassurances at the initial visit.  I then did a cycle with Fem.ara + injected meds, which was cancelled by a different doctor in the practice due to under-response (my doctor was on vacation) and told to consult with my doctor when he got back.  It was late June by this time.

My doctor was hard to schedule with because he was “so busy” according to the clinic.  We agreed to a phone consult.  My doctor told me he wouldn’t have cancelled that cycle, would rebate my clinic fees (which we appreciated) and would personally supervise my next cycle.  “Good,” I told him, “because my period is starting.”  We booked the next cycle and I started shortly thereafter.  A week later, I was told by the nurse at the clinic that one of the other doctors would review my lab/ultrasound results because my doctor was on vacation.  I was furious.

The July cycle went wonderfully, a really good stim, but I didn’t get pregnant.  I asked to talk to my doctor again, was able to get another phone consult, and expressed that I was a bit upset he hadn’t personally monitored my cycle as he had promised.  He basically told me that he got to go on vacation and implied that my expectation that he would personally monitor my cycle was expecting far too much.  He was so convincing, I remember doubting my memory and asking my husband if he too had heard the doctor promise to monitor the cycle personally.  My husband was certain he’d heard the doctor say that too.

We decided to move to IVF because we were losing a *lot* of money on drugs, fees, and lost work for cycles that were being cancelled.  It was obvious that my ovaries were super touchy and didn’t necessarily respond predictably.  I was going in a lot for monitoring.  We figured that if we did IVF, we’d be able to do one cycle with all the monitoring and have a higher chance of pregnancy.  I again phone consulted with my doctor in late August, explained to him that I had started a new job, and that we were thinking IVF.  I had planned to possibly do the IVF in February or March of the next year and settle into my new job.  “We could get you in this fall,” my doctor told me.  Because I really, really wanted to be pregnant, I agreed.  I explained what I did at work and asked if there was anything I should know about IVF that would affect my job differently than any other TI/IUI cycle with injected meds.  He told me to plan to take one day off for egg retrieval and two days for transfer.

A couple weeks later, I called the clinic to finalize some details and the nurse mentioned in passing that I would have a 25 lb lifting restriction and restrictions on bending.  My job involves a lot of lifting and bending.  I just about hit the roof.  But my doctor was out of the country on a 3-week mission trip and I had to make decisions right then or delay the cycle.  We had already scraped together the money and I was desperate.  I made a poor choice and went ahead.

The cycle proceeded, I was very anxious, and 15 eggs were retrieved.  The day after my egg retrieval I went back to my job, where I would be on my feet for 8 busy hours.  I had to leave partway through the shift because I was in so much pain.  Two 3-day embryos were transferred, 2 were frozen, and I went home to wait.  I had my beta a day early because my husband and I were both off work that day.  Though the clinic nurses called me to tell me I had a positive beta and was pregnant, my doctor also called me personally to congratulate me.  I appreciated that enormously.

Of course, I got googling (ugh) and realized that even for the day it had been done, my beta seemed…low.  But it doubled appropriately, then exploded.  Even so, I could not shake a nagging feeling that I didn’t “feel” pregnant at all.  Nothing.  No tender breasts, no nausea, nothing.  When I went for my first ultrasound with a different practice doctor, the doctor found that I had 2 gestational sacs, both with something inside but only one with a heartbeat.  The next week I went for another ultrasound with my doctor to check on the one with no heartbeat to see what was going on.  Still no heartbeat in the one, but a beautiful, perfect heartbeat in the other.  He was effusive, excited, and told me to send him photos.

The bad feeling never went away.  Finally one weekend, I found myself almost hysterical with anxiety.  I knew something was wrong.  I called the clinic Monday and they scheduled me for a scan to reassure me (with one of the other doctors in the practice, my doctor wasn’t at my location that day).  I remember feeling the cold wash over when I saw the baby come into view.  I knew there was no flickering of a heartbeat, and the ultrasound tech’s immediate “I need to go get the doctor” told me everything I needed to know.

My doctor never called.  Never said a word.  Never told me how sorry he was that I’d miscarried.

Do you blame your first RE for the miscarriage?

Not at all.  I had known in my gut something wasn’t quite right from the start and unfortunately, miscarriages aren’t particularly uncommon.

In hindsight, are there some things you would have done differently?

I would have changed doctors after the situation where he told me he would personally monitor my cycle and then didn’t – particularly after he tried to play it up like he never would have said such a thing.  I work in healthcare.  It is totally good for healthcare workers to take breaks, vacations, etc.  I absolutely support that need.  I also totally understand that emergencies happen, but based on what the nurses said at the time, they specifically said vacation and he later confirmed that.  There is absolutely nothing wrong with taking vacation.  But I had/have a huge problem with the dishonesty.  The truth is, I suspect that he just completely forgot what he said to me and really didn’t care.

I really regret not putting the brakes on that first IVF cycle.  It made things much more stressful at work (even though I had an extremely supportive boss and coworkers, thankfully) and once I realized that my doctor (again) hadn’t been 100% forthcoming with me, I wish I had insisted on waiting until I saw him to talk about the situation to do something as major and expensive as IVF.

I wish I had listened to the part of my brain that threw up the red flag in our first consult instead of playing it off as a bit of a misspeak and proceeded with more caution.

One other thing that, in hindsight, would have been good would have been getting a second opinion from a different RE before going for IVF (it’s worth noting that my first RE did not push IVF for us – we were spending so much on TI/IUI cycles that by the time we’d gone through a few, we were getting to the point where we couldn’t keep doing those for the lower chance of pregnancy, so we brought it up).  I was really intimidated by the idea of finding someone (the clinic I went to was the only one that had a local satellite office).  But even if I’d needed to go to the city where the main office was located or somewhere else entirely, I wish I had had someone review my chart/tests/treatments to that point just to sort of double-check things.

What are some things you would have wanted to see from your first RE?

The other day, Mel at Stirrup Queens posted a link to a project about the worst things people said to women who miscarried or had stillbirths.  I know, unfortunately, exactly what my chalkboard would say:

“Not one %$#%& thing.  Absolute silence.”

It still makes me really angry that my doctor could take the time out of his “busy” schedule to call me and congratulate me on being pregnant but when I miscarried, he couldn’t be bothered to take three minutes to say “I heard.  I’m so sorry for your loss.”  This is basic.  It’s not an onerous request, and I would argue that it’s an essential part of reproductive healthcare.

I also would have appreciated it if he had been much more careful when he was advising me what to expect from IVF.  He did not tell me about the lifting/bending restrictions, which were incredibly relevant to my job that I had told him about (I think he figured the nurses would go over IVF instructions and didn’t think it was his job).  I am also really frustrated that he didn’t encourage me to take a day off after the egg retrieval, especially since he knew I didn’t/don’t work a desk job where I might be able to take time to sit down.  I was in a lot of pain as a result.

Confidence can be a good thing, but I felt like his statement about water at the wedding instead of wine wasn’t a helpful thing to say.  It gave me some unrealistic expectations for the process/timeline and honestly, I felt horrible – like I had done something wrong – when I wasn’t pregnant by the time of that wedding.

He also came across as pretty dismissive when I would ask about how the various treatments would affect work or my life.  These were reasonable questions on my part and should have been treated/answered seriously.

 

Planning to have Part 2 coming soon…

Out of the Shadows

The other day I couldn’t resist watching the trailer for Miss Peregrine’s Home for Peculiar Children even though the book scared the daylights out of me. I was curious if the characters looked the way I’d pictured them, and I must say, I certainly never pictured Eva Green as Miss Peregrine (I’ve always seen Maggie Smith). At the end of the trailer, there’s a short image of what terrified me in the book.

While it’s not a creature I’d want to meet in a dark alley or, well, anywhere, seeing it on the screen made me go “huh…that was what scared me so much?” It’s interesting that I’d taken the outlines in the book and filled them in with my own terrors, insecurities, and ugliness to make a truly horrifying creature that scared me for good reason.

Finally pulling the monsters lurking in the dark spaces of my own mind out and really getting a good look at them this week has had a similar effect. They’re still formidable creatures and I still don’t want to deal with them, but they’re not as big or terrible as the shadows they cast.

~*~

Mali left a wonderful, sage comment on my last post pointing out that although the media (and social media) portrays family and big events as uncomplicated and happy, the reality is usually murkier. As much as I sometimes know that in the back of my head intellectually, it’s easy in the onslaught of joyful photos and exciting news to forget that this isn’t the whole of reality. I spent some time looking through what I’d posted over the past year or so, and it was interesting to note that after E was born, my Facebook posts take on a decidedly upbeat tone that wasn’t terribly congruent with what I was actually experiencing at the time. It’s also worth noting that I’ve never posted about my brother’s death on Facebook.

This didn’t happen in a vacuum, of course. After E was born, it seemed that any time I’d express concern or get upset (mostly IRL), I often got a variation on this: “But you’re thankful/should be thankful she’s alive! And doing so well!” It’s true that for a 28 weeker, especially with the early PPROM, E has done exceptionally well. She never needed a ventilator, much to everyone’s immense surprise, and at this stage of things, is right on track for her adjusted age of around 9 months. I was and am thankful for E, knowing how close we came to losing her. But it did not take away the reality that it was hard and still is sometimes.

There were days I could remind myself that people say sh*t like this for various reasons, ranging from the fact that outright sadness and suffering makes a lot of people very uncomfortable, to the idea that people often want to ‘fix’ the situation, to simply being ignorant or having their own issues. There were/are other days, however, where it was/is very effective in making me feel as though I needed to put a happy spin on a tough situation or, in many cases, simply ‘suck it up’. After all, someone had it worse than me. Honestly, I think this is a big part of where the pain olympics comes from: people feel they need to justify their pain and the complex feelings surrounding events culture often insists should be purely happy. That’s the pressure I’ve been putting on myself, and the pain olympics is all over my last post.

So I’m taking a deep breath and saying it fully: I am really excited and happy to be an aunt. I am really glad that my BIL and SIL don’t need to go through fertility treatment again and that the babies are doing relatively well. I’m sad for them that their lives/pregnancy/birth didn’t go as planned in scary ways. It truly doesn’t matter when it comes to NICU or fertility treatments – no matter the duration of either, they represent some big losses. It’s also not a shame to say that I’m sad and angry for myself at all the losses and the very real fear and sadness that surrounded my pregnancy with E as well as the difficulty of NICU and the subsequent months of taking her to 2-3 appointments a week on average and bringing her home on monitors and oxygen. It’s not wrong that siblings trigger the many unresolved feelings surrounding my own brother’s death and infertility. It’s also natural that all of this brings up difficult memories of messiness that are the events of my life over the past three or four years.

That, I suppose, is reality: some good, some bad, some uncertain.

Just as I knew that we would somehow go on and have lives of beauty and worth if we did not have a child, I know we will likewise have goodness if E is an only child. It won’t happen overnight, and may take years to fully work through readjusting those dreams and hopes but I firmly believe we will get there. I also sometimes have to remind myself that plenty of people are only children – and there is absolutely nothing wrong with that. E being an only child would not be the same as me being one of two and suddenly left alone. It’s easier to project my own sadness and insecurities as I’ve barely scratched the surface of grieving and coming to terms with what happened to my brother or to sublimate the memories I need to come to terms with by playing pain olympics.

I’m impatient in many ways. I wanted the battles with my demons done, you know, yesterday. Then again, I have to remind myself that there’s a reason I have the sign I do hanging over my desk:

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It’s something I’m working to remember.