A Long Time Coming

In the weeks and then months after E was born, we spent a lot of time at the hospital, first in NICU, then going back and forth to doctor’s appointments and tests.  Every time I made the trip to the hospital, the route took me through a nature preserve marsh area.  I’d often spot hawks, great blue herons, or swans.

One day, I saw a flock of white birds perched in the trees and logs.  At first, I wondered if they were seagulls or more swans.  They were quite a long way from the road, so hard to make out, but as I got a better look, I realized that a couple of them were wading in the water.  They were storks.  A whole friggin’ cloud of storks.  This realization elicited a rather dark-humored chuckle from me, given the association of storks with babies.

“Really?!”  I muttered incredulously to myself.  “This is where y’all have been hanging out all these years, huh?”

I continued to see the storks all summer, and the next spring, I kept an eye out for them.  Sure enough, the cloud of storks again descended on the marsh.  I would watch for them as I went back and forth to my OB appointments in those early, tenuous days of my pregnancy with M.  I saw them as I headed in with bleeding.  I saw them after good ultrasounds.  I got to the point where I was almost superstitious about it – if I saw the storks, everything was probably okay.

This summer, I waited to see the storks.  While I’ve seen a few of them on and off, it’s nothing like the last two years.  At most, I’ve seen three or four at a time, whereas in previous years, I’d see ten or fifteen easily.  I’m completely aware that this has something to do with changes in the migratory pattern of the birds, but it’s a sort of strange coincidence how it has almost perfectly dovetailed with the volume of my anxieties and feelings about infertility.

When I was first diagnosed with infertility, the one thing I wanted to know was whether or not the acute distress of not knowing and the horrible limbo of waiting would ever end.  I figured intellectually it would – and multiple bloggers/authors in this community with every manner of outcome testified to that – but there were days it felt emotionally like we might remain in the undecided, unresolved ether forever.  In some ways, that was one of the hardest parts of fertility treatment for me.  I could deal with the physical side effects, but the waits – waiting to start cycles, waiting for lab results, waiting for paychecks to pay for cycles, waiting for embryo reports, waiting for pregnancy tests, waiting for ultrasounds, waiting on those long weeks of hospital bedrest to see if E would survive – stressed me enormously.

For a long time, infertility has been a wound that has stubbornly refused to heal or even really scab over.  We still have two frozen embryos, and with my history of subchorionic hematomas and the concerns with whether or not something in the IVF process possibly exacerbated the first one with E, there are some loose ends yet.  Lately, though, I’ve noticed that while I’m not quite resolved, I’m starting to see that eventuality on the horizon.

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In Which A Break Turned Out To Be Longer Than I Anticipated

Content note: Pregnancy mentioned

I didn’t set out to take a writing hiatus, but thanks to, well, life, that’s exactly what happened.  Of course, once the hiatus starts, it becomes harder and harder to go back. Where do I even start?

It has, indeed, been a full couple of months.  School has been busy, so perhaps it’s not so much a true writing hiatus as a blogging hiatus as I’ve written a fair amount towards that overarching project of BSN work.  My daughter had a couple of minor surgeries that thankfully went well, but one of which required several all-day trips in a relatively short time period to see a specialist out of town.  Arthur and I both blanched at the horrible election results.  We’ve lived under Pence for the last four years and to say that we’re worried and chagrined would be a gross understatement.  My husband’s work got busy and I changed my job position as well.  As of December 31, I crossed 28 weeks and 5 days pregnant, making me – out of four pregnancies – the furthest along I’ve ever been.  An anatomy scan at 18 weeks showed no abnormalities and that the baby is a little girl.

In many ways, we’re transitioning into a relatively good place family-wise.  Out of the normal has been our default setting for so long – starting with infertility and progressing to miscarriage, job losses, a high-risk pregnancy, PPROM, preterm birth and my brother’s death – that it’s almost a novelty to sit back and just breathe for the first time in about four years.

Sometimes I almost forget that a lot of people in real life we come in contact with these days don’t know the story since we moved in the midst of it and then spent a year in quarantine to let E’s premature immune system develop.  By the time we came out of hibernation, E looked a lot less premature (small, but not abnormally so), didn’t have her wires from the monitor any more, we weren’t in the midst of infertility treatment and then had a welcome, spontaneous pregnancy.  Recently, we were at church, going over future plans for the congregation and I objected to one point that talked a lot about “families with children”.  Which of course, seemed odd given that we are “family with children”.

“What you don’t see,” I explained, “is that we almost didn’t have children.  We did several rounds of fertility treatments and then IVF and had miscarriages.  My water broke at 21 weeks and by almost any calculation of odds, E wasn’t going to survive.  By that time, we were financially tapped out, emotionally exhausted, and if E hadn’t lived, we wouldn’t have had the ability to keep trying or pursue adoption.  We would have been a family of two.”  It heartens me that in that group of people I was talking to, everyone was kind, respectful and interested in being inclusive of family structures outside of the nuclear.

Another moment occurred when we went down to witness my niece and nephew’s dedication ceremony.  As all the parents and adorably dressed babies walked out onto the stage, the pastor briefly talked about the ceremony and then gestured to a white rose placed in the front.  He explained that this was in honor of those who had lost children, struggled with infertility, and for whom this was not a joyous or easy occasion.  While communities – religious or otherwise – still have a long way to go towards true, full inclusion and integration of those who struggle with infertility, do not have children, or do not have the families they longed for, such a gesture was a welcome sign that perhaps someday those changes may come with work and determination.

At these moments, I found myself almost in tears both times.  Certain aspects of infertility are slipping into the past for me and yet, others are still so much present in my life.  It informs so much of how I view family, parenting, and life in general.

Preserving A Space

Microblog_Mondays

Over the last few months, I’ve played around with the idea of printing out my blog as an actual, physical book.  Not to work up for publication or for any sort of distribution, but because, well, it’s my life.  Certainly edited and condensed in some respects – many posts have ended in my drafts folder, countless sentences and paragraphs pruned, life outside of infertility often left undocumented – but definitely truthful and an accurate chronicle of the last several years.

It’s funny how the internet is at once permanent and constantly shifting, blogs and platforms and media appearing and disappearing at breakneck speed.  I went back recently to find a post that I loved from a blog, only to find the blog and post gone.  While I have no plans to move out of this space right now, I know I don’t want to lose the entries if one day the terms of service with the hosting or the platform itself changes or for any other reason.  Printing them out in a tangible medium feels somehow more permanent to me, more real.

In the end, it’s a big part of my story.  It’s the space where a lot of moments live that in real life are long gone.

So, my question to all of you is this: have any of you printed out your blog?  What service did you use?  How expensive?  How much difficulty or ease?  Any advice or stories to share?

This post is a part of Microblog Mondays.  If you want to get in on the action or read more, please head over to Stirrup Queens.  Thanks to Mel for originating and hosting.

The Messy Intersection of Hope, Pain, and Advertising

I’d seen the viral photo of the baby surrounded by IVF syringes show up in my Facebook feed a couple of times. I’d paused to consider it, but had never read the caption or anything about it. I thought it was a powerful visual, a pointed reminder of the realities of IVF. The photo itself, with no caption, I identified with in its portrayal of struggle.

Then I read an article about the photo, and to say it conjured up mixed emotions is an understatement. In particular, a couple of items stood out.

Before I go on, let’s get this part out of the way: I’m not angry with my current RE, who has always been ethical and careful about explaining the known risks to me. I’m not angry with my IVF clinic. I don’t think IVF should be banned. Nobody has made any medical mistakes that I’m aware of throughout any of my treatments or pregnancies. I’m truly glad for the mother who took the photo, identified as Angela, that her daughter is “absolutely healthy and perfect” and that she is happy. I’m aware that pregnancy is a roll of the dice in so many ways, and perhaps, that’s my biggest issue here.

I’m frustrated at being shown an “absolutely healthy and perfect” baby and told to “…just hang in there” as though anyone who perseveres long enough, pays enough, and suffers enough will have that healthy baby. I understand that Angela shared it as an encouragement. I disagree with the “…just hang in there” message strongly, but I also recognize she’s a private citizen who wanted to help, never expected this to go viral and excited to share her hard-fought-for daughter. However, in the course of reading the article, I found out that the photo was originally made public by a fertility clinic*.

This struck me as far more problematic.

There is, of course, the fact that IVF cycles fail to produce a live birth more than half the time even under optimal circumstances when using the patient’s own eggs. There is also this: IVF, according to a Danish study from 2010, is linked to a 53% greater chance of preterm birth and doubles the risk of an extremely preterm birth (prior to 32 weeks) in singleton pregnancies. 8% of IVF/ICSI babies in the study were born prematurely, and 1.5% were born very prematurely, compared with 5% and 0.6% respectively for women who did not use IVF/ICSI. This is not taking twins or higher multiples which automatically have a higher risk of prematurity into account.

I understand that, for better or worse, fertility treatment is a business. Of course this clinic is showcasing such a fine outcome. I have no doubt they have all sorts of social media experts, including whoever added the caption with the subtle knife twist about the photo showing “the true definition of love that went into making this gorgeous new baby girl.”

It’s not revolutionary or surprising that infertility involves a lot of emotions, often strong ones. I know I personally felt terrible that because of my PCOS, my husband might never be a father. It’s something I’ve known he wanted since I met him when he was sixteen. I told him repeatedly that he should have married someone else, someone who could give him children. I’ve heard similar statements from other infertile people who have fertile partners. We wanted a child badly and paid with enormous amounts of money, a couple of losses, a very high risk pregnancy, and the near death of our daughter. How much does captioning such a photo as “the true definition of love” put pressure on already hurting and desperate people?

Angela and her partner were lucky in the end. They had the finances to continue cycling, a problem that IVF could fix, and apparently a healthy pregnancy. Not everyone has these resources or conditions. “…just hang in there” can mean marital problems or prematurity or severe financial issues among other things for plenty of people. I don’t say any of what I listed above to complain or look for sympathy or pity. We were also lucky and took our daughter home. We had a good outcome. Was it worth it? In the end, yes, because it worked. But it very nearly didn’t work in a terrible way, and then what about that price?

The people who promoted this line of thinking are doctors. They are scientists. They are highly educated, intelligent people. Because of this, I struggle giving the clinic a pass, even in our advertising saturated, self-promoting business climate. They know the numbers and ought to understand what hanging in there actually demands.

It’s a manipulative message to send to a hugely vulnerable population.

*I have deliberately not linked to the fertility clinic Facebook account where the photo was originally posted or their web page.  The name of it is in the Today article I linked to in the initial paragraph if you wish to explore further.