A bitter taste that doesn’t fade

Mid-way through the two-day intensive child birth preparation seminar we attended last weekend one of our instructors asked:

Who here thinks giving birth is going to be the hardest thing you’ve ever done in your life?

My hand stayed firmly at my side, while the hands of those around me shot straight up.  The mister and I gave one another a solemn, knowing look, and the moment passed.  It was likely a blip on the radar of so many others in the room – the woman who had to turn away during the bloody birth scene in one video, the many others who let out an audible gasp when our instructor introduced us to the Kiwi delivery device (the next-gen vacuum extractor), and the coach who got squeamish when our instructor noted that the prostoglandins in semen can induce labor.  But, to me, that 5-second show of hands was one of the biggest takeaways of our child birth education rite of passage.  I’m different.  We’re different.  Infertility doesn’t fade.

Don’t get me wrong, had the instructor phrased that question one of any number of different ways I might have joined in with my classmates.  One of the most physically taxing experiences of my life?  Sure.  Something for which I can’t be truly prepared until the moment arrives?  Absolutely.  An even that will redefine physical pain for the rest of my life?  I don’t doubt it.  But, to be entirely honest, I don’t suspect that the physical act of child birth will really, truly be the “hardest” moment of my life.  Whispering permission to die in my mother’s ear?  Bingo.  Walking in to maternity triage to get a double dose of methotrexate to terminate our first pregnancy?  Up there too.  Enduring 12 hours of contractions at home after being sent away from the hospital to birth our third dead fetus?  That definitely is on the list.  No, instructor, I don’t think giving birth is going to be the hardest thing I’ve ever done.

For better or for worse, I’m an education junkie and feel quite comfortable in the classroom.  That’s probably why I’ve built up the act of attending a child birth seminar in my mind so very much over these past 4.5 years.  It’s not that I’ve not gotten excited (and stressed) about finishing the nursery, and I even managed to find a sense of (uneasy) happiness at my first family shower two weeks ago; but, that child birth class?  That’s the moment I’ve most been waiting for.  That day that would tell me this is real.  I’ve always assumed that sitting on a floor huffing and puffing in comical fashion with a dozen other expectant couples would finally normalize this experience for me.  In a few ways, it did; but, in most ways, it absolutely didn’t.

Don’t get me wrong, we left with valuable information and I’m extremely comforted by the fact that I now have my bearings in the hospital we’ll be delivering at.  (A hospital I never set foot in until Saturday.)  Mr. knows where to drop off the car, I know what the birthing rooms look like, and we both know that there’s a definite disconcerting bounce to the upper floors L&D occupies.  (Thankfully, I don’t think I’ll be fretting about a bouncing building mid-delivery.)

It’s just that I also left knowing that pretty much nothing is going to normalize this pregnancy after infertility stuff for me.  And by that I truly don’t mean to be negative.  I couldn’t be happier or more excited to meet this little man in a few short months, and I don’t remotely regret attending the classes.  Just as they prepared us to navigate the built environment of the large teaching hospital campus we’ll be using, the classes also provided me with the knowledge that a certain amount of bitterness is going to be my perpetual bedfellow in this journey.  I won’t wallow in it, but, sometimes it’s just nice to know the lay of the land.

And, the emotions I experienced during the class aren’t likely to go away as we (oh please God!) transition from pregnancy to parenthood.  At just 30 years old, I felt old in the classroom.  In league with one or two other couples, we were the “old parents.”  We were frequently the babies in the infertility waiting room, so seeing so many faces lacking wrinkles and heads missing gray hair was unanticipated and a good bit unsettling.

Then I realized that most of our fellow classmates knew one another or knew our instructors.  The city we’ll be delivering in is kind of a “small town, big city.”  The nurses that led the class were the appropriate age to be friends with the parents of the mid-twenty somethings that occupied the room with us, and many of them were.  Other classmates were young professionals with the same local firms, and still others came from the nearby army base.

In all of this, one word prevails – “nearby.”  Each of our fellow classmates (like most sensible people) are a short distance from their hospital of choice.  We, on the other hand, will be traveling just about an hour to get this baby out.  We have to; I’m high-risk and this is the only hospital equipped to deal with high-risk patients.  As our instructors taught us to leave for the hospital when our contractions were 5 minutes apart, 1 minute in duration, over the course of 1 hour, one casually commented, “… because no one’s from over an hour away, right?”  I raised my hand and our instructions were altered to 7 minutes apart, 1 minute in duration, for 1 hour.

But, ultimately, I wasn’t worrying nearly as much as my fellow nervous classmates about deciding when to head for the hospital, because odds are our drive up will be timed to the convenience of our physicians, not my body, as they intend to induce if I get to 39 weeks.  And induction means doing it all at the hospital.  Being high-risk also means constant monitoring that made our tour of the whirlpool tubs and discussions of laboring in water all the more frustrating to listen to since those won’t be options for me.  At times, I found myself sitting back and mentally saying to my fellow students, “Oh, honey, don’t worry about how big that bathtub is… you’re gonna be begging for an epidural the second you roll in.  Accept it and move on.”

I had thoroughly othered myself.  An older transplant to the region that would never have the “typical” birth story (whatever that is!).  That’s not going away anytime soon, so acceptance sooner rather than later is probably a good bet.

Oddly enough, I only started easing into comfort with the classes on the second day when our instructors had learned enough to start calling me out as the special snowflake that I am.  On day one I was pretty miserable.  The class began as our instructors noted that, while their own pregnancies had been a while ago, they were still L&D nurses and instructors and were abreast of how the field had changed in the intervening years.  And, even more importantly screamed one, “My kids have given my grand kids!  Squeal!”  To which the other one replied, “Yes, my children have been delinquent and haven’t given me any yet, but they will soon or they’ll be hearing about it!”  The room laughed lightly, the instructors playfully jabbed one another, I turned a violent shade of fuchsia, formed my fist into a ball, and almost walked out barely thirty seconds into the class.  I was fuming for most of the rest of the 2.5 hour session.

Saturday morning was similar in tone, and then came lunch.  The instructors sat at our table and did something that oddly made me feel instantly better.  We had the names of our OB/GYNs on our name tags (to help us find our “labor buddies” with similar practices?!? Yea, no one else was with my MFM…) so the one instructor asked, “So, why are you with Dr. S?  He only takes really difficult cases, no?”  That might have made some of you squirm, but to me it was just the opening I needed to start the conversation about how I found her comments the day before a bit unsettling.  I listed off my resume – IVF, 3 miscarriages, antiphospholipid syndrome – and she went from playful (bumbling) kindergarten teacher holding the hands of a bevy of nervous fergiles to the educated L&D nurse instructor that she was at her day job.  From that point on – during the tour, through our discussion of pain management options, to the section on induction and labor augmentation – she looked me in the eyes, gave me additional tips and advice, and waited until I’d asked all my questions.  It’s amazing how you can go from hating something to loving something in the blink of an eye.  I even began to cut my classmates some slack, not the least of which because one particularly squirmy gasper overheard my conversation with the instructor at lunch and identified herself to the two of us as the survivor of 7 IVF cycles, the last of which landed her in our midst.

I’ve always known that there are many different and equally appropriate ways for women and men to endure struggle.  Mine has always been to latch on and find strength in difference.  To be brash in the defense of my journey and emotions.  I rarely sugarcoat the death of my mother, and – over time – I’ve come to be downright obnoxious about our IF.  It’s what works for me.  Others, though, are going to find strength in, well, not necessarily “forgetting,” but in moving on.  Child birth videos don’t make me squirm because, well, I’ve watched videos and seen pictures of my laparoscopies and those are a wee bit more frightening to my mind.  And, I was always a masochist throughout my IF.  I watched the videos, I read the child birth books, I was the most birth-educated non-mother around.  Whereas others can compartmentalize, I always wanted to know it all and know it NOW.  No one way is better or worse, but I sure wish I had taken the time to reflect on how my methods of coping would impact my move from IF to (lasting) PG after IF to (again, please God) parenting after IF.  Then again, I don’t know that I could have worked through this all any earlier than this moment.  That I could have anticipated how defining myself through difference would change when the differences became different.  And, that’s why I’m oddly happy we did take these child birth classes.  No, I didn’t need to learn about the stages of labor, or form bonds with my fellow nervous mamas to be, but I clearly DID need to work through some of this baggage.  And I think I’m closer now than I have been at any other stage of this pregnancy…

In which I have a breakdown

See, the trouble with having expectations is that life almost inevitably never lives up to them.  And then, if you’re anything like me, you spiral into a pit of ennui followed by a decent amount of self-loathing.  And then the capstone breakdown moment which just serves to remind you that you are far too fucked up to have had any business setting up expectations for your life in the first place.  It’s a fun ride, and I can’t help but think it’s been made even more tummy tickling by the healthy dose of hormones I’ve got rolling through this ol’ body of mine.

I don’t even know how to articulate where I’m at right now.  Linear thought and reason have left me, it seems.  I think of one thing to type and I immediately flit to another issue.  All that adds up to a silent blog and an overwhelmed me.  So, where to begin…  I guess with this blog.  You know, this one I poured my heart and soul into.  This one I was so proud of.  This space that provided sanity that now only reminds me of the sanity I feel like I’ve lost.  It’s one year anniversary was last Sunday and I totally missed that (whoops), as did I miss the Twitterversary that came a few days later.  I had helpful emails from WordPress and Twitter reminding me of the occasions.  The emails led to hyperventilation and a whimper of “No more.  I can’t take one more thing right now!”  That’s completely and totally healthy, right?

Just as healthy as laying a new floor at 28 weeks pregnant, I’d think.  My knees are currently on strike, but, you know, priorities.  The floor in the nursery does look damn fine.  I think I’ve previously explained here what a wonderful sense of pride and worthiness one can reap from rehabilitating a badly run-down grand old home.  Listen to me now: Ignore the batshit crazy lady who watches far too much HGTV.  Preparing a room with the world’s creepiest white-washed teddy bear wall-paper, drop ceiling, and stained carpet hiding loose asbestos tile flooring to be the one-day home of the son we’ve spent, oh, every last ounce of our time, energy, money, and metal stability trying to create for the past 4.5 years?  Yea, not nearly as rewarding as you’d think.  Doing it on your own while contractors concurrently gut and remodel your downstairs bathroom at 28 weeks pregnant?  Seriously, what the FUCK was I thinking?  Clearly, finding a resolution to our infertility led me to believe that I’d somehow been imbued with superhuman powers.  You know, cause getting 1 in 4 embryos that managed to find a home in my womb to actually stick around for 28 weeks makes me totally capable of, well, climbing ladders, painting (on the same day our hot water heater died), ripping up carpet, laying new flooring, and doing a rickety flight of stairs each of the 100 times a day I have to pee…

nursery after picture

Nursery After

nursery before picture

Nursery Before

But, at least that job I took because it would provide a better work-life balance for me and my finicky uterus has totally gone to crap.  Because I totally uprooted my husband and moved us both to the middle of snowy nowhere for long and un-rewarding work hours, never-ending physical demands, an unreliable leadership who philosophically opposes my understanding of my entire professional identity, and a maternity leave policy that is entirely unwritten and made up as you go along to suit the needs of whoever you happen to be talking to at the moment.

After 4 months of negotiations, though, it does appear I will get a decent leave thanks to having taken about 2 days of vacation time in the past 2 years.  (Silver lining ftw.)  I mean, I can never take vacation because of my husband’s two-job work schedule that makes it impossible (or at least damn challenging) for us to leave town on the weekends.  Did I mention that includes both this weekend – my shower in my home town 6.5 hours from here – and next – our childbirth classes?  Don’t get me wrong, I absolutely LOVE spending 14 hours in the car and 8 hours in an over-priced roadside motel, to spend 24 hours in my childhood home for a shower that will only be attended by my guilt-tripping aunt, two additional aunts who disowned my side of the family while I was growing up, a great-aunt I’ve met once, and my two bestest girlfriends (at least there’s a win).  Do I sound ungrateful enough for you yet?  No?  Well, how ’bout I tell you about the temper tantrum I threw yesterday when I found out that my cousin (daughter of one of the two “we will shun you for 20 years then pretend nothing ever happened” aunts) gave birth to a happy and healthy baby boy.  The baby boy she conceived on her honeymoon after the wedding we suddenly couldn’t attend because I was on all fours in my bathroom back home birthing my third miscarriage.  The cousin who was on a fucking dating-based reality show the year Mr. But IF and I first started trying to conceive.  The new baby that will be the center of attention throughout my entire shower, and whose name shares several syllables with the name our son will get when he arrives.

Bitter enough for you yet?  I know writing it all out surely makes me want to strangle my irrational, self-centered self.  So then we turn down the path of discontentment.  The size of the “You’re getting everything you fucking wanted and dreamed for so long” slap I want to deliver across my tear-stained cheeks is frighteningly out of control.  So I try to recenter myself, to focus on what’s important, to find a healthy way to let it out and move on.  Last week I called my therapist for a much-needed appointment only to find her only availability conflicted with an endless array of stressful work meetings.  We moved to this week to discover that her open slots were all on Thursday, the day of my day-long 28-week appointment (2 hour round-trip, growth scan, GD testing, consult, etc.).

At least I tried to get help, but, omg, I should totally just “snap out” of my mental crap and focus on the fact that shit is getting really real with the MFM after this week.  Thursday’s appointment is the “beginning of the end” of my pregnancy treatment plan, and will be followed by my first non-stress test (NST) at 30 weeks, which will happen weekly until 32 weeks, and then continue on bi-weekly until 39 weeks, at which point, if I haven’t gone into labor, I will be induced.  I’m beyond grateful to be getting this much attention, but telling an already stressed out and overwhelmed patient that she’ll be spending approximately 5 hours a week just in the car from 32 weeks onward doesn’t help with the stress level.  Add to all those round trips NSTs that, I’ve been told, could take anywhere from 15 minutes to a full day, that could result in the decision to immediately delivery there and then, and I’m just feeling oh so relaxed.  Good thing my ability to take any sort of maternity leave rests on me working a 40-hour week up until the moment of delivery…

And then, I step back and get immeasurably angry at the fact that IF caused this all.  IF made the blog and, more importantly, made me judge my worth by the meaningful ways I contributed to the IF community.  IF (and the subtle acceptance that we’d never have a family) made us feel prepared to tackle an endless array of house projects over the next decade, and “beating” IF fucked up that timeline.  IF encouraged me to put time and effort into improving my education and finding a new and rewarding position in a state with an IF insurance mandate.  IF made me incapable of planning a shower until the last moment, and IF-related pregnancy complications are making us throw that shower early in the third trimester.  IF familiarized me with a life dictated by doctor’s appointments, and IF hinted at the autoimmune issues that got me booted to high-risk pregnancy territory.

And, I think, above all, IF was an easy scapegoat for issues I would’ve faced no matter what.  I think I really cry because my mom is gone.  She should be planning my shower, she should be trying to calm me and tell me it will all be alright, she should let me whine and complain and scream and cry and still love me just as much after it all is out.  My shower, like my wedding, was never going to be without emotion, without a sense of loss.  Blaming IF masks some of that, but when the tears came in the bathtub on Sunday it wasn’t because I was unfulfilled in my career, because my husband’s second job interfered with our travel plans, or because my shower will be poorly attended.  Becoming a mother, without a mother, hurts.

Complacency

It’s been well over a month since my last post.  That’s the longest I’ve gone without checking in here by quite an order of magnitude.  And, to be honest, putting virtual pen to paper here and now feels odd and discomforting.  It’s almost as if this space I birthed nearly a year ago is no longer mine, no longer of me, no longer for me.

In the simplest terms, I’ve been too scared to write.  As the weeks have ticked on I started settling into an unanticipated, yet easy complacency about this pregnancy.  The modifiers I’ve most frequently found to define the word “complacency” are smug or uncritical.  Neither of those have been in my emotional lexicon for the past 4.5 years.  The idea that I’d fall back on them to describe the past month, particularly the past month of my pregnancy, is downright shocking.  But, it’s been good; complacency’s been wonderful.

It’s been tremendous to walk into appointments with my MFM, his midwives, their nurses, and feel confident, supported, and, above all else, trusting.  Yes, I ask follow-up questions, request longer explanations when necessary, and speak my mind (and gut) at every opportunity, but the past few visits to the regional perinatology center have been the first doctor’s appointments I’ve attended in nearly half a decade where I haven’t walked in shielding my emotions behind an invisible layer of battle armor, where I haven’t prepared several pages of questions in advance, where I haven’t spent hours the night before setting my mind straight for the next day’s ordeal.  Instead, I’ve played the grateful patient to my practice’s caring and attentive guide.

It’s been overwhelming and surreal to feel our little man grow.  Even as he’s increasingly begun using my bladder as his own private trampoline, I find myself in awe of these jabs and flutters I often thought I’d never know.  I saw him on a regular growth scan two weeks ago.  Aside from leaving with indisputable visible evidence that, indeed, we are not jinxing ourselves by accepting all those baby blue hand-me-down clothes from friends and neighbors, we received the good news that all is well and he’s spot on the doc’s target for size (54th percentile).  With each kick I’ve felt a little more freedom from the fear that had encompassed me.  The morning I hit 24 weeks (sometimes referred to as “viability day”) I cried in the shower while silently saying, “Thank you.”

It’s been tiring preparing a nursery.  Since my last post the room was gutted to the studs, drywall was installed, and paint was painted.  (A chipper shade of yellow that makes me smile each time I walk by.)  We still have to lay new flooring (this weekend), and have the contractor replace the cracked windows and install a new heater (Mr. But IF doesn’t do electrical or heights), but I’m thrilled with our progress.  Even having our hot water heater spring a leak (well, a geyser) mid-way through painting couldn’t abate my delirious joy on painting day.  Yes, it really did kind of suck to wash up in freezing cold water, but I chuckled and joked with the mister as we drew straws to see whether “ma” or “pa” would get to have the first go in the bath water we’d boiled on the stove.  It wasn’t lost on me that uttering those two-letter country colloquialisms didn’t sting nearly so much as it would have a year ago.

Of course, the thing about finding a groove – or, in this case, embracing the complacency – is that sooner or later it’s gonna end.  The other part of the common definition of complacency is, “satisfaction with oneself or one’s achievements.”  Having an easy pregnancy this far is not an achievement.  It’s pure dumb luck.  And, given enough time, there’s always going to be a reminder that one’s luck is subject to change.

When I woke on Friday I felt like I’d been hit by a truck.  Work had been (and continues to be) extremely stressful.  We’d been engaging in the aforementioned hectic nesting for the entirety of the prior weekend.  And, then, I’d spent each night all week alternating between celebrating the Mr.’s birthday, attending to social obligations, and participating in after-hours work events (because, clearly, only 8-9 hours of work torture a day is NOT enough!).  The waters were looking rough when, on Thursday afternoon, I returned to my office after a particularly unpleasant meeting with the boss and big boss to see a blinking red voicemail message from my therapist asking why I’d missed that afternoon’s appointment.  (“Oh shit,” I thought, “I’m so overwhelmed I’m even fucking up at therapy!”  And, then I proceeded to let my missed therapy session – you know, those things I go to to vent and let out the negativity? – eat away at my mental well-being for the next, oh, 4 days.)  So, when I woke up barely able to function on Friday morning there was a simple strain of “uh oh” being repeated in my head.

As I sat at my desk that morning, I realized the world was blinking.  Well, not the world, per se, but how I was seeing it.  Large patches of black inkspots swirled in my vision in tune to the beat of my heart.  My right hand began tingling and, over time, became numb.  I remembered the difficulty I’d had zipping up my snow boots due to suddenly swollen ankles that morning, just as I started getting a pounding headache.  For an hour and a half I ignored it all.  I hid in my bubble of complacency.  I reminded myself that – despite my rock-star high-risk doctors – I had the world’s most perfect pregnancy.  I mean, it was nice and all to be labeled “high risk” because I got really attentive care, but that label only stemmed from an excess of caution approach from my former OB and my own aggressive approach to the scary, early, “bad” days of pregnancy after IF.  And, you know, that teensy-weensy autoimmune disorder that could threaten my life and that of our unborn child at any moment. Finally, I texted the mister with a simple, “I REALLY don’t want to worry you, but I don’t want you to get mad that I hid anything from you.”  As I spelled out “numb fingers,” “headache,” “vision trouble,” and “ankles the size of ham-hocks,” I realized I was a disillusioned idiot.  As he read the above he typed them dutifully into Dr. Google and immediately demanded I call the doctor as each was a sign of pre-eclampsia (one of those lovely pregnancy complications I’m now predisposed to… woot!)  I called, they requested I find a way to get my BP ASAP and to “stop dismissing these troubling new symptoms.”  Soon I was off to use that home blood pressure cuff the Mr. had bought in the bad old days prior to his weight loss and running obsession.  But, not before crying in the bathroom at work.  Not before visualizing the world crashing down around me.  Not before envisioning bed rest, hospitalization, and an incredibly premature birth.  Not before cursing myself for my complacency.

Once at home the trusty blood pressure cuff mocked me as it reassured me.  106/79.  Exceptionally normal.  Brilliantly low.  Thank-you-baby-Lord-Jesus average.  Another call to the triage line told me that, while troubling, none of the new symptoms was cause for concern UNLESS accompanied by an elevated BP.  It was 1pm on a Friday afternoon and I fully embraced the bed rest and increased fluid intake recommendation I received.  I slept most of the rest of the afternoon, greeted the mister home from work at 7, ate dinner, and was promptly asleep on the couch by 9:30.  Ten additional hours of sleep followed.

So, I guess I’m “fine.”  I’m still shaky off and on, the black spots keep finding me, and the fatigue is no joke (I brought my laptop to bed with me to write this… when I went to bed… at 7:30).  But, in the grand scheme of things, I guess I’m just as lucky now as I was a week ago.  However, one thing I’m not any longer is complacent.

I was too scared to write when there was little to write about, but I’m finding it easy to write now that I’m scared.  I don’t know what to make of any of that at this moment, but I do know it feels good to be back here, to once again feel so many of you walking beside me and supporting me in ways large and small.  Complacency’s overrated.

Why’d you give me your mother’s card? and other questions

I’ve never been big on Valentine’s Day.  I just don’t get the premise.  A day set aside to tell your loved ones you love them?  Shouldn’t that be every day?

Granted, as a kid it meant candy hearts, paper cards, and chocolate.  But, those hearts tasted (and still taste) like chalk, the cards always devolved into a game of “whose parents are so poor that they had to give out the crappy cards?,” and, I know I know, I HATED chocolate as a girl.  Only the onset of menstruation really changed that one.  Yay?

So, as I awoke this morning to over a foot of fresh snow on the ground (on top of the existing 10+ inches), to absolutely no communication from my employer that we were getting so much as a late start, and to an email from my boss telling me she wasn’t coming in so I’d have to and be the sole person responsible for the department today, I wasn’t feeling particularly festive.  After dragging my mopey behind out of the shower, I started to post to Facebook:

Valentine’s Day?  M got me a freshly snow blown driveway; I gave him my endless appreciation.

When I got downstairs to the breakfast table, however, I found a card addressed in my husband’s handwriting to “Mom,” propped up next to a little black box.  Huh?  Clearly he’d gotten me a gift, but why was he giving me his mother’s card?  Wait, who gives their mother a Valentine’s Day card?  Hold up a minute…

Through the tears I opened said envelope to find a card picturing the both of us with little N’s NT scan picture nestled in between.  Through more tears I read the message from my men – my husband and my son.  By the time I opened the necklace the tears were flowing so quickly I couldn’t quite make out the beauty of the mother’s necklace (two intertwined hearts) through the surging stream of tears.

You win, Mr. But IF.  Well done.

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There have been a lot of questions lately.  What will be the outcome of this pregnancy?  Where do I fit in the IF universe?  How can I help those still in the trenches?  Will I be a good mother?  Will labor be complicated?  Will I like my new MFM?  Will he have answers for me?  When we the electrician and drywaller get the future nursery done?  How will I find the time and energy to plan a surprise 60th for my mother-in-law the same weekend as my shower?  How should I react to my aunt’s sudden pronouncement that I must now drive over 800 miles round-trip in the third trimester to attend the shower she’s suddenly decided to throw for me?  Why, when we’re so close to getting what we’ve dreamed of, did I experience a severe bout of crippling depression two weeks ago?  Will HR ever give me a straight answer about my maternity leave?  Will the snow ever stop?

Each question deserves its own post, but just so many posts have gone unwritten lately due to fatigue, long work hours, and, above all, an uncertain mind and voice.

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Last year on Valentine’s Day we drove up to the RE 9 weeks, 2 days pregnant, and drove home knowing our child’s heart had stopped beating.  Witnessing the global outpouring of love and joy (and commercialism) that this day brings as our own hearts broke into a thousand little pieces just made me feel numb.  The following day we went to our weekly Friday happy hour and I ordered the largest beer I could get in the company of friends and colleagues who knew of our infertility and pregnancy.  It allowed me to skip the questions; it enabled them to just jump to whispering, “I’m so sorry” over the din of a crowded restaurant.  Last year I wasn’t asking questions, I was just struggling to feel something, anything, even if it was just inebriation, as we waited for our own bloody red Valentine’s present to begin the coming weekend.

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Asking questions is the province of those with time and unspent emotion on their hands.  I’m whirling in them now because there’s not much else to be doing.  Baby N is kicking and thriving, baby stuff is arriving on our doorstep at an unsettling pace, showers are being planned, and my new doctor is proving to be even more kickass than the one I left behind.  While last year I trudged zombie-like through the day – following our scripted path home from the RE, running into the coffee shop to get the biggest cup they had to offer and running into all our neighbors and their 2.5 children, sending emails and working at my desk with a dead fetus inside me – today my mind flits and floats with a lightness and inquisitiveness that only the content can know.

A year ago today…

A year ago today…

  • We woke early, bundled into our car by 4am, and headed out into a snowstorm.
  • We drove 230 miles to Woodbury Long Island to meet with the reproductive immunologist who offered our last hope.
  • I was 8 weeks pregnant with our third pregnancy.  I was still pregnant, but the news had been rocky from the start.
  • I saw our little one’s heart beating for the last time in Dr. B’s exam room.
  • We heard the verdict of “This may work out, this may not, I do not know…”  We left with a plan (lovenox, prednisone, IVF, and, possibly, PGD) should the pregnancy end (which, of course, it did the following week).
  • We drove another 230 miles home, buying a wedding gift for my cousin along the way.  We’d ultimately miss her wedding as I was 6.5 hours away miscarrying in my bathroom.  She’s currently set to pop out her first next month (yea, that didn’t take long).
  • We digested the news over a prime rib special we devoured during old people dinner time.  460 miles on the road for a 45 minute appointment that left us with more questions than answers can stir up an appetite.
  • We rejoined our friends, our normal life, at our weekly Wednesday night trivia game.

Today…

  • I leave in 10 minutes to drive an hour to the regional perinatology center.  I will meet my new practice for the first time.  I will wait in a waiting room with fellow high-riskers for the first time.
  • I’m 20 weeks, 3 days pregnant with our darling son.
  • Our son is kicking me as I write this.
  • I’m putting the finishing touches on my list of questions for the MFM.  I’m making modifications and additions based on the mock-appointment my therapist and I held last night.  I’m reminding myself I have agency in this pregnancy, I have knowledge, I have power.
  • I’m getting a stomach ache at the thought of starting all over with a new unknown practice.
  • But, that stomach ache is eased by my insatiable appetite and little man’s jabs.
  • If all goes well with the appointment, I hope to take advantage of being in the “big city” and stop off at a Hallmark to buy thank you cards to send to the amazing men and women who have ALREADY showered us with baby gifts.
  • I hate that I just prefaced that with, “If all goes well.”
  • Ultimately, though, today is so much better than a year ago…

Why’d we bother?

As I stood in the shower this morning, lathering up that extra layer of flab I’m pretending is all the 8oz baby’s fault, my mind started to wander.  If I am truly and brutally honest with myself, I never thought I’d see this day.  For all the invasive procedures, the doctors’ visits, the support group cheerleading, the advocacy work and fundraising – I honestly never thought we’d get here.  Failure to conceive and maintain a lasting pregnancy had become the expected outcome; dreams of baby showers, bedtime stories, and school plays had long since ceased being something I visualized.  As that realization hit this morning, I found myself asking, “Then why did you keep going?”  This post is an attempt to figure that out.  And, furthermore, an examination of why I think this story – our story – is more the fault of our society’s medical status quo, than it is of my own damaged body.

First and foremost, treatments are what we knew.  Some go to the spa, some go out to brunch, I made 5am drives to the RE for a probe and a poke.  I knew where I’d risk getting trapped behind a school bus, I knew where the roads tended to be iciest, and I knew I’d get my bagel at the bagel shop on my drive home.  The power of routines is nothing to scoff at.  In a strange way, infertility and infertility treatments provided much normalcy and structure to my life.  As I dug through my wallet this weekend looking for an under-used store rewards card, I found the “frequent customer” card for that bagel shop 50 minutes from home.  I immediately wanted a bagel, wanted a stamp on my card, but realized I’d rarely have reason to go back.  The drive to my OB (and new MFM) follows a slightly different route than the drive to the RE.  I’ve had to learn new rest stops, learn new quick food options, learn new road conditions.  Not only has the adjustment been huge, but so has the unpredictability of its coming.  A sticky pregnancy has made me learn a new routine, and this has come long before the normal new parent routine changes we’re all conditioned to expect.

And, if the daily minutiae of infertility treatments were familiar, then defining myself through heartache and resiliency was its macro-level bedfellow.  Infertility gave me a purpose that my life was largely lacking.  I found some sense of self in my career, I enjoyed my friends and family, but when we started this journey I was, like most other 20-somethings, focusing on the things that life could give me, not that I could give it.  I mean, simple case in point, I wanted to be granted the gift of becoming pregnant, delivering a healthy child, and parenting that child for the rest of my life.  I wanted life to give me something.  For all I revere it, the act of procreating is most certainly selfish and driven by a desire to get what we want.  I don’t, in any way, think that should take away from the fact that determining when and how we reproduce should be a basic human right that we all get to work out for ourselves, but making mirror images of ourselves has an undeniable element of narcissism about it.  So, when infertility struck, I was so very, very lost.  Why couldn’t I have what I wanted?  Hadn’t I earned it?  Surely I earned it more than that terrible parent I saw in Target or my cousin who said “I do” all of thirty seconds ago.  Why was the world making me suffer?

I have no answers for any of those questions, but I’m at peace because I simply stopped asking them.  No, this post isn’t going to take a turn for “If you just have hope and baby dust” territory, but I am going to be fairly blunt about the fact that asking questions about why you aren’t getting what you “deserve” is just kinda masochistically futile.  You’ll never have an answer; there is no answer; life sucks, then you die.  K?  Somewhere along the way, right around the time of my suspected ectopic pregnancy in 2011, selfishness propelled me to something amazing.  Out of a desperate attempt to feel less alone, I went to a professionally-led RESOLVE support group.  Then a peer-led support group an hour from home.  Then, finally, I started my own.  And, just recently, I’ve become a peer-led support group coordinator for my state.  At the same time, relationships I established with faceless Internet strangers on an fertility-focused support forum, transitioned away from the anonymous forums to Facebook.  These women went from familiar avatars, to close personal friends and confidants.  In 2012 we signed up for our first Walk of Hope, and we returned again in 2013 despite moving far away from the walk location.  Though this little one’s arrival will keep us sidelined from the Walk and Advocacy Day this year, my thoughts (and some dollars and constituent calls) will be with the women and men who fill our shoes.  And, finally, following my last miscarriage, I started this blog and found a new voice on Twitter.  When we started trying to conceive in 2010, I was desperately seeking an identity as “mother.”  In that time, I’ve found an identity far different than the one I expected, but one that still fills me with just as much pride and sense of accomplishment.  So, why did we keep going, even when the hope was gone?  I’d convinced myself this wasn’t just my fight, and, with the help of countless women and men, I kept on trucking.

Finally, I just wasn’t willing to give up on my health.  What started out as a drive for pregnancy, quickly turned into a battle for diagnoses, treatment, and health.  Though by no means a universal experience, my infertility has been inextricably linked to my health almost from day one.  I pushed harder than I thought I could push to get my Hashi’s diagnosis, because treating my raging thyroid disease might help me get pregnant.  I demanded a PCOS diagnosis (and the Metformin/Synthroid combo that brought me to a weight I hadn’t seen since middle school) because doing so might help me get pregnant.  I marched into my REs office and insisted on laparoscopic surgery to diagnose my endometriosis because I refused to endure another assumed ectopic.  We drove 6 hours one snowy February morning for a 45 minute appointment with a Reproductive Immunologist to investigate my wonky immune system because I needed to know I’d done everything in my power to save my failing third pregnancy.  I’m bracing myself for April’s consult with a new rheumatologist because this little man deserves to have the healthiest mama he can get.  My health was always the elephant in the room keeping me from stopping treatments, even as my ability to sustain myself emotionally through all the failures precipitously declined.  Each miscarriage was diagnostic and every failed cycle provided more insight into what was wrong with my body.  No one should have to sacrifice their children in order to improve their health, but it was a devil’s bargain I’d become accustomed to.  And, it’s a thought that’s been on my mind a lot lately, and was a central theme of my counseling appointment today.  When there’s no longer a goal in site – when the dream of pregnancy and parenthood has been achieved – what will be left to propel me toward answers to my medical mysteries?  When I no longer find myself in a practitioner’s waiting room once a week, who will be tracking my progress or decline?  When the realities of parenting a newborn hit, will I have the ability or the energy to differentiate normal new parent fatigue from complete autoimmune misfire?  These questions are also ones not worth asking in this moment, but they’re ones worth acknowledging nevertheless.  I kept turning to infertility treatments because I was afraid of turning away from treatments that might improve my health and well-being.

So, finally, the crux.  Infertility and infertility treatments pose a risk to three aspects of your life: your emotional, physical, and financial well-being.  For me, the physical was surmountable.  The surgeries, the miscarriages, and the injections were worth it, as each one brought answers.  And, usually, the physical pain of infertility was nothing compared to the pain of living my life before becoming aware of and treating my health issues.  The contractions of my 9 week miscarriage were intense, but I was prepared for them after 15 years of endometriosis-related menstrual cramping that, prior to my first referral to an RE, had always been passed off as evidence that I simply had a low pain thresh hold.  The discomfort of recovery from two laparoscopic surgeries was worth it tenfold for the improved bowel function, pain relief, and sexual desire each surgery brought with it.  Taking as many as 25 pills a day in my mid-twenties was a small price to pay to regain a metabolism that didn’t translate a 1000 calorie a day diet into constant weight gain.  And, even fertility-specific medications like gonal-f and menopur were worth it since, for the first time in my life, they brought predictable-length cycles, and didn’t leave me anovulatory and searching for my period for 8+ months.

While I won’t be nearly so quick to pass off the financial as no great burden, I will note here that we were relatively “lucky.”  (And, it’s only through my close proximity to this community and my IF Stockholm syndrome that I’m even remotely able to describe our financial situation as “lucky.”)  My first insurance covered diagnostics, and, after a targeted national job search, my second insurer was required, by state mandate, to cover treatments and meds for everything up to IUI.  So, while it’s the one thing that we’ve never been insured for that has granted me this pregnancy – IVF – I was able to make my insurance work for me most of the time.  I garnered my diagnoses on the cheap, including a laparoscopy that we risked paying out-of-pocket for had I not been found to have endo.  I used my state-mandated meds/IUI coverage to stockpile extra meds for our IVF cycle.  And, we went to a clinic with some of the nation’s lowest prices for IVF when it came to that.  So, while we’ve easily shelled out close to $20,000 in the past 4.5 years, most of that is come in the form of co-pays and deductibles for insurance-covered services.  And, on top of that, we’ve maxed out (and promptly spent) our flexible spending accounts whenever possible to ensure those out-of-pocket expenses came pre-tax from our employers.  It could have been much worse.

Where the financial truly hurt us?  Where the physical really stung?  It’s where both intersected with the emotional.  The emotional toll was crippling.  The emotional stole our hope and joy.  The emotional made us decide that child-free was preferable to continuing to go around in the same circles again and again and again.  And, contrary to what you might initially expect, entities outside ourselves can be held responsible for this emotional toll.

Published in yesterday’s New York Times, Ann Carnn’s “Meeting the Cost of Conceiving” is a a relatively simple financial piece that isn’t all that groundbreaking to anyone that’s taken their turn on the IF roller coaster.  But, re-reading the article today, after first clicking over to it from RESOLVE’s Facebook page yesterday, I think that article is the reason I found myself asking this morning, “Why did we keep going?”  And, now, I can’t help but find myself rephrasing the question as, “Why did we get to the point where stopping seemed preferable to continuing on?”  My answer is hidden in bits and pieces of Carrn’s article.  In her awkwardly placed single-sentence closing paragraph reading, “Yet, just a small proportion of women who suffer from infertility use [IVF].”  In fertility specialist Dr. G. David Adamson’s opinion that, “Cost is a problem,” and, as Carrn’s continues, “not because I.V.F. itself is necessarily more expensive than other highly technical medical procedures […] but because most insurance policies don’t cover it.”  Each step along the way we were forced to ask ourselves whether we could keep it up, quite simply because the expectation of our insurers and our medical system was that we shouldn’t.  We kept finding ourselves asking at what point were we willing to trade in the routine, the identity, and the battle – the trips to the bagel shop, the sense of belonging to a community, and the path to improved health – for the path our employers, insurers, doctors, and government expected of us.  When would the emotional toll of being stuck in a perpetual fight be greater than the toll of living childfree?  We got awfully close, and I still tend to blame my country, my doctors, my employers, and my insurer for that.

When, in 2002, my mom decided to wave the white flag, cease all treatments, and allow cancer to take her, she did so because it was the path she physically and emotionally preferred.  Her insurer never told her she wasn’t worth it.  Her friends never asked her why she didn’t “just” stop wanting to be pregnant alive.  And, we, her family, didn’t doubt her when she said he mind was made up.  She was given the peace, the space, and the support to make the hardest decision she would ever have to make.  I’d be lying if I didn’t say that her decision hurt 19-year-old me, but, looking back now, I love her all the more for the strength she showed in her final months.  Our flirtation with ceasing treatment had none of those aspects to it.  Our insurance checked out, our family shook their heads and talked in hushed tones about the money we were spending, and we were asked at every turn to justify our decisions.  To reconfigure Carnn’s quote above, not because infertility is itself more difficult to treat than cancer, but because most insurance policies and random strangers don’t find it worthy.  Run your head into that wall every day for 4.5 years and, even under the most forgiving of physical and financial situations, you can see how the emotions might finally give out on you.  Or, at least, how they started to give out on us.

IVF is not for everyone, and IVF is not a guarantee.  But, as long as just a “small proportion” of infertiles have access to IVF, the emotional toll of infertility will continue to call the shots.  As long as women endure cycle after failed cycle of cheap procedures with far lower odds of success, the emotional aspect will take center stage.  As long as miscarriages are treated as diagnostic, at best, and “bad luck,” at worst, the emotions will cloud all judgement.  As long as reproductive choice (including the choice to reproduce) remains politicized, many infertiles will find their lack of choices leading them down a path of “Why do I even bother?”

The (wow that went) quickening

What a difference a week makes, eh?  Sorry I’ve left y’all hanging, but even when I’m totally zapped of time and energy and incapable of updating here, I still try to give the play-by-plays over on Twitter…

So, what we’ve learned in a week:

  • Baby But IF has a winkie.  The Mr. smiled from ear to ear as the ultrasound tech proclaimed proudly, “No doubting this one, that’s a big old boy right there!”  Momma hen came out a bit as I stifled the urge to reply, “Stop staring at my son’s penis!”
  • I’m half way through this pregnancy.  How in the HELL did that happen?  I mean, I know I’m probably saying this because I have yet to reach any sort “OMG I’m huge and miserable and uncomfortable” phase, but seriously can we slow this down a little bit?  It took us 4.5 years to achieve a sticky pregnancy, it seems kind of cruel to know I’ll only get to be pregnant for about 1/8th of the amount of time it took us to get and stay pregnant.  (On the flip side, I so desperately want to meet this little man that the prospect of our meeting on the horizon is probably enough to get me to stop the chorus of “That’s so unfair!”)
  • Stubborn boy doesn’t like kicking when daddy is within reach.  As I was settling into a good book in bed on Sunday night I felt a sudden something.  A passing moment, I buried my mind deeper into the book.  Then again.  And a split second later I thought, “Whoa, wait just a damn second!  You idiot!  You know what that was!  That was most decidedly a kick Mrs. Always-Late-to-the-Party!”  Of course, Mr. But IF was sound asleep so missed out on the tiny pitter patter I could feel both inside and outside of my tummy.  And, the following day, when baby boy decided to vent his Monday morning frustrations by attacking the front of my desk, daddy was a few buildings away at work in his own office.  The movements are still very minor and fleeting, but they’re there.  And, just thinking about that brings uncontrollable tears.  I was so very certain I would never see (and feel) this day; that it has come has melted me into a pool of topsy-turvy emotions.
  • My (now former) OB is amazeballs.  It’s not that I learned this this week, obviously, but more that I’m confirming it.  I had my last visit with him yesterday.  I peed in a cup, listened to little man’s heartbeat, had some blood drawn, and that was that.  Off to perinatology I go next week to face an entirely new unknown.  The departure was bittersweet.  Dr. T had a med student with him, so it prompted him to explain to her how 1. I was a complicated case, and 2. That I was a dream patient.  Though no one likes to be a medical students introduction to when to transfer a patient off to a higher level of care, it melted my heart to hear him say, “She’s a dream patient, this one.  She knows her stuff, and it’s important for all new doctors to learn when it is time to listen to a patient who knows what she is talking about.”  And, then he hugged me goodbye and threatened to hunt me down if I didn’t send updates.  It’s strange, for over a year I cringed as RE#2 and his ridiculous soul patch hugged me in his impish, condescending, zen-master manner; this single hug from an OB I met just a few months ago elicited a wholly different reaction.
  • The regional perinatology center may more closely resemble Alcatraz than medical nirvana.  As Dr. T said his goodbyes he warned me (and the med student) that “Things aren’t so cushy over there, but you’ll be in good hands.”  This really wouldn’t startle me, except he said it as I stared at the exam room’s peeling wallpaper, broken vertical blinds, and as Dr. T perched gingers on a stool meant for 4 wheels that, for whatever reason, now only had 3.  If my former office is “cush” I’m not quite sure what to expect from the new one.  That said, if 4.5 years spent running like a lab rat through a maze of medical offices has taught me anything, it’s that the dingier the office, the more amazing the doctor.  And I’ll keep repeating that philosophy as I try to avoid being shanked in the new doctor’s offices next Thursday.
  • Referrals move quicker when you’re pregnant.  A new rheumatologist will see me April 17.  That’s less than half as long as it took to get a referral last year after my third miscarriage.  I still don’t have much hope that we’ll get anything useful out of the appointment, but at least it’s something else to look forward to.
  • And, finally, I have amazing friends and family members that I totally don’t deserve.  The mother-in-law has been nudging me with shower planning questions since the New Year holiday and, while at first the thought struck fear straight into my heart, I’m now more and more on her side as it looks more and more unlikely that I’ll be allowed to make it to my due date thanks to all these new medical issues.  I finished my registry on Sunday, posted it on Facebook in response to a few questions I’d gotten earlier in the week, and, to date, I’m humbled by the response.  While things most certainly don’t equal love, all I gotta say is this little guy is so beyond loved it’s incredible.  He has no idea what’s about to hit him when he makes his grand appearance!

Is it tomorrow yet?

Another Wednesday quickie for you, in usual bullet fashion.

Things I’m looking forward to:

  • Our anatomy scan tomorrow
  • Seeing the heartbeat (please Lord!)
  • Our anatomy scan tomorrow
  • Seeing the wiggle… I guess shotgunning an energy drink before hand to make him/her hyper is probably bad parenting behavior?
  • Our anatomy scan tomorrow
  • Seeing if Baby But IF has an innie or an outtie
  • Our anatomy scan tomorrow

Things I’m able to concentrate on:

Things I’ve done to try and pass the time:

  • Created an entire Amazon registry in, oh, 2 days
  • Asked random strangers and long-time friends-in-the-computer to give me sex guesses based off our 13w2d NT scan (“Yes, I know there’s no nub in the picture, but seriously just freaking give me a guess people!”)
  • Bought new (used) maternity pants.  And a new comforter and sheets for our bed.  And a dining room chandelier, and wall art for the bathroom, and a rug for the living room, and new tables for the living room.  Hey, baby could her his/her head on our current square tables.  Baby needs light and clean sheets to mess upon.  And, might as well buy stuff while we have the illusion of having some money cause baby’s kill your savings account, right?  I mean, we’re totes rolling in it now because, you know, uninsured IVF is so totally affordable!
  • Dwelling on the fact that his/her will shortly no longer be a common part of my vocabulary.
  • Buying (seeing a trend here?) a sweet little journal to finally start my daily journal to baby.  My mom did one for me and, especially after her passing, it was one of the nearest and dearest items I have from her.  I always intended to do one for my child(ren), but IF and RPL made me constantly feel not ready.  Tonight I go home and write.  I want at least one pre-sex reveal entry in there!
  • Eating. All. The. Things. And, it’s corollary, fretting about the fact (don’t kill me!) that I’m now down to my pre-IVF weight at 18 weeks.  Shouldn’t the scale be moving the other direction?  Is this what having a working metabolism is like?  Crikey!
  • Filling out the pre-admission paperwork I’m supposed to send to my hospital at 20 weeks (isn’t that INSANELY early).  It was while filling out this paperwork that I realized, “Oh, yea, I have no idea who my doctor is!? Whee, guess I’m not getting this paperwork in on time.”
  • Biding my time waiting to hear from my former (kinda current?) OB’s office regarding my transfer to the perinatology center.  Seriously, this is still happening, right?
  • Setting up a new rheumatologist appointment.  April 17!  That happened a lot quicker than I thought it would!
  • Antiquing (how I loathe that word).  We’re looking for something special to use as a changing table in the nursery.  We found a contender in a marble-top Victorian dresser.  Mr. is sold; I have two conflicting opinions.  Mainly, 1. it would be awesome for a girl (quickly followed by a “OMG I’m already gendering this poor little one already.  Bad progressive mama!)  And, 2. if we did purchase it for a boy we totally have to get him this, a top hat, and a baby-sized monocle.  They make those, right?

Things I’m thinking right now:

  • How did it only take my 20 minutes to write this post?  WHHHYYYY IS THE WORLD MOVING SO SLOWLY!?!?!?!

The breakup

Last night I tweeted:

Welp, another bad blood test result. My OB is transferring my care to regional perinatology center. So fucking terrified right now…

I could probably just save myself a lot of time and leave this post at that.  It pretty much sums it up.  But, I won’t.  Mainly because I’m, well, fucking terrified.  And pissed.  And numb.  Somehow all at the same time.  And whining on this blog is usually something that helps with those feelings.

If you missed my post from earlier in the week, you should probably catch up there before going any further.  I don’t have the energy to review it all again.  I don’t have the willpower to make myself reread and recount a post that ended so (relatively) hopeful and optimistic.

At Tuesday’s reassuring appointment, I also talked the doctor into running a few additional blood tests that my old reproductive immunologist has recommended.  Again, the OB happily consented, but felt it was unlikely the antiphospholipid antibodies would be elevated since they’d tested normal so many times before.  Last night he called back to inform me that, while only one of the two antibodies he’d tested was back, it was, in fact, very elevated.  And so were my complement levels.  After reviewing the results he placed a call to our regional perinatology center seeking advice.  (Have I mentioned I love this man and his teensy, tiny ego?)  They reassured him he was doing all the right things – steroids, lovenox, careful monitoring – but, also informed him that it was probably time for my case to be transferred over to their center.  Put simply, a crisis is going on in my body for an as-of-yet unknown reason, and there’s no way we can continue the charade any longer that I’m just a normal pregnant lady.  I need the highest level of care around, and that comes from the center that serves the 9 counties in my part of the state.  I’m lucky, it seems, to only have to drive an hour to see them.  Though, “lucky” isn’t really a word I’d use to describe myself and my situation right now.  Lucky, it seems, is something I’ll never be.

Of the antiphospholipid antibodies tested, the anticardiolipin has yet to come back, but the hexagonal phase phospholipid nuetralization is sky high.  Like any good patient experienced with chronic illness I immediately Googled “lupus anticoagulants and pregnancy.”  Of the seven results that appeared above the fold on my laptop monitor, five included some combination of the words “negative pregnancy outcome,” “intrauterine deaths,” “miscarriage,” or “still birth.”  So, yea, there’s that.  Basically, the ANAs let us know that antibodies are attacking my body; the positive APA lets us know that at least some of these antibodies are attacking fats – or phospohlipids – including those fats in my cells and cell membranes, including blood cells and the lining of blood vessels.  The theory goes that as blood vessels are attacked, tiny clots can form, and those tiny clots can take a trip to the womb, get stuck in the placenta, and block the flow of nutrients from mother to baby.  Basically, my body may suffocate my healthy, happy kid.  Because, you know, that isn’t remotely fucked up or unfair in any way.

So, despite all odds, I have a happy, healthy baby inside me, grown from a crop of happy, healthy embryos, in a petri dish that made a much better home than my fucked up body ever could.  No one is willing to speak in certainties with these things, but we’ve got pretty strong evidence at this point that my last loss at least (and perhaps others) was from exactly this scenario playing out, but earlier on in the pregnancy when the embryo had no placenta to protect it from my immune system.  Turns out it was probably a pretty good call for me to demand dexamethasone and lovenox be added as part of my IVF protocol as the combination of steroids and blood thinners in the first trimester may have helped stop an immune flare that could have taken this pregnancy just like it took the last.  But, as I weaned off the dex as instructed at 9 weeks, my body was suddenly free to fuck up once again, and a flare of some sort began.  So, now we’re back to square one.  But, further along in so many heartbreaking ways.

I can’t control my thoughts.  They flit and float from once thing to the next without warning.  Overall, yes, I’m fearful for our baby.  For the innocent that my body might destroy.  But, then there are times I sink into a sea of self-pity.  WHY is this happening to us?  How have I not given enough already?  Why am I ringing in my 30th year with yet another health scare, yet another series of doctor visits and tests, yet more questions without answers?  And then, I get angry.  So very angry that this is my life.  That I spent so much of my 20s battling for health, and now it appears my 30s will be more of the same.  Angry that I know so much about the medical system and medicine despite being in a totally unrelated field.  Angry that I’ve given my husband a chronically ill wife, after he had to spend so much of his time surrounded by a chronically ill father.  Angry that I don’t even have my mother to cry to because cancer took her from me.  Angry that, should we succeed and bring a child into this world, my health may keep me from being the mother I always wanted to be.  Angry that my body may kill my child.  And then I feel selfish.  Selfish for wanting a child so badly that we ignored these warning signs.  Selfish for fearing for my own health when my child’s life is at risk.  And selfish for crying about the risks to the growing being inside me when so many others would give anything to have even a high risk pregnancy when the only other option is never experiencing pregnancy at all.  And from this flitting and floating (and likely also the all-out war that is going on at the cellular level within me) I end up exhausted beyond belief.  I now know why I never received the long-promised energy boost of the second trimester.  I now know that even this pregnancy will be a battle; that our fight didn’t end after conception, after the heartbeat, after a beautiful NT scan and quad screen.  Our fight, in many regards, is just beginning.

And of all these emotions, the one tiny pin that dropped and broke that giant pane of glass?  Hearing that my doctor was dumping me.  The doctor that listened and cared and has called me more times than I can count on evenings, on weekends, on holidays.  That was it.  That was the moment it all tumbled down.  For all my independence and doctor-loathing, I’d somehow come to need this man for strength and guidance and reassurance.  Now, we start all over.  Sure, my new doctors will be the tops in their field and have the health of me and Baby But IF front and center, but I’ve had too many bad doctors to be fooled into thinking that they’ll certainly care as much (if not more) than Dr. T. did.  And all that just makes me all the more exhausted.

When an itch isn’t just an itch…

This weekend was amazing.  I outgrew my favorite jeans, and wore maternity jeans for the first time to our post-holiday holiday party.  At said party I chatted with the first-time mother of a 10-month old.  We talked symptoms and nurseries, play dates and day care.  Her husband took me aside and said bittersweetly, “I don’t know whether this will hurt or help to hear, but I just am so happy for you.  You don’t know how many times I’ve asked myself why it is we had A so easily, while the both of you have had to fight so hard.  It’s just so unfair, and I couldn’t be more thrilled for you.”  This weekend I was rocking zenned out happiness.

Yesterday was not amazing.  Yesterday, after weeks of happy absence, the fear came crashing back.  The doubt my body could do this, the suspicions that we would ever have a happy ending.  Yesterday I talked lab results, waited hours for a doctor’s call-back, hit up those medical journals yet again.

Today?  Today I’ve mostly found peace.  I’m celebrating a doctor that listens (and makes after-hour calls and last minute appointments).  I’m taking my new pills.  I’m finding comfort in this familiar discomfort.  And, I heard baby But If’s heart beat.  No day can be a bad day when that’s a part of it.

It all started on Thursday.  A routine prenatal visit.  Actually, it was my first visit to the OBs that wasn’t super exciting.  It was “routine” in every way possible, and that was new.  I yet again peed in a cup (who knew that 4.5 years of practice would come in so handy?), I reviewed my symptoms, I heard the heart beat with the doctor’s doppler.  That was about that, and he perfunctorily asked mid-way out the door if I had any final questions.  Well…

On the long drive up to his office I’d been debating whether to mention something strange that had been on my mind.  You see, it’s not a drive to an appointment if I’m not pre-planning my conversations with the doctor.  Anyway, over the past couple of days I’d noticed an itchy rash developing on my hips.  And, increasing joint pain.  But, you know, 17 weeks pregnant and all, how silly must I be to be concerned about skin changes and joint pain?  But the hip thing had me startled.  If you’ve been around here for a while, you might remember I’ve mentioned my itchy hips before.  And the last time I off-handedly mentioned these ample hips of mine to an MD it got me sent for additional blood work.  And, then that blood work came back, well, off.  So off that we were forced to stop TTC while the elevated anti-nuclear antibodies (ANA) were investigated by a rheumatologist.  A rheumatologist that turned out to be both prone to cancelling appointments and utterly useless.  So, that’s how a mundane-looking rash was slowly starting to work me up to a panic.  I ultimately decided to go for it… what’s the point of all these appointments if I don’t regularly make myself look like a hypochondriac fool?

The OB, God love him, sat right back down and asked a few more questions.  He didn’t blow off my silly rash like, well, the silly rash it looks like.  He understood why I’d be concerned since the last time I’d had this constellation of symptoms I was in the midst of an unexplained miscarriage at 9 weeks after seeing several strong heart beats.  He reassured me that it was probably nothing, but did say he wanted to draw another ANA level just to “ease my fears.”  He was actually more gentle with my emotional state than I actually even needed him to be.  I wasn’t really concerned, per se, just curious.  He took that curiosity as blinding fear and reassured me as he left that the ANA was a quick test and I should call the following day (Friday) to get the results from the nurse.  “There’s no reason for you to worry all weekend!”  As he left the room I heard him in the hall telling the nurse to expect my call.  10 points for Dr. T.

Well, the next day I called, but, as so often happens, the reassurances of the receptionist that the nurse would call me back that day were overly optimistic.  I didn’t hear anything.  But, I also didn’t worry all weekend.  I put it out of mind.  I mean, I wore maternity pants and talked day care, for Christ’s sake!

Yesterday morning the results posted to my online patient portal.  1:1,250 homogenous pattern.  (Again, normal is under 50.)  I’m right back where I was after our last miscarriage.  I flew mentally right back to that place.  To the worry, the incapacitating fear, the dread.  The OB opens at 8AM.  I called at 8:01.

Turns out my OB was off doing surgery at another hospital all day yesterday.  A call-back from the nurse reassured me she’d message him.  A second call-back told me he’d replied to her immediately by e-mail and would call me as soon as he could get out of surgery.  So, having taken the day off work, I waited, ate chocolate, and watched Bomb Girls.  By noon I still hadn’t heard back, so I wrote a message to my former reproductive immunologist.  He replied back quickly with a few suggestions for additional testing (anti-XA to make sure my Lovenox dose was correct and another anti-phospholipid antibodies test to make sure I was still negative), but reminded me that, at his practice, he doesn’t even seen anyone past the first trimester specifically because he doesn’t believe immune/autoimmune issues matter much once the placenta has taken over supporting the pregnancy.  I mean, of course they matter, but not in the sense that they spell immediate doom to the pregnancy.  That helped to calm me immeasurably.

At 6:30pm the phone rang.  It was the OB.  He apologized for being stuck in surgery all day, and immediately got down to business.  I needed steroids, and I needed them now.  10mg of methylprednisolone for 7 days, followed by 5mg from the next 7, then a re-check of the ANA and my complement levels in 2 weeks time.  A flare of some sort is happening, and while it’s scary, he reassured me that 1. we caught it early, 2. this is not all that uncommon in someone with a complex autoimmune history, and 3. we’re out of the scary first trimester and have no reason to believe there is anything wrong with the baby just because my body is going haywire.  Luckily, the placenta is a fairly good nanny and keeps out most of the nasties my body seems prone to producing.  Then he said, “If you were my wife, well, I know you’d want the reassurance of hearing the heart beat again soon.  Can you come in tomorrow?”  I didn’t have the heart to tell him I’d been cheating on him with my home doppler, so that, combined with the fact that I NEVER pass up the opportunity for an appointment (and to pee in a cup), I said, “Yes, absolutely!”

Our appointment today went well.  I heard that thumping heart again, and he answered many of my questions.  We’re treating it as if I now have lupus and am experiencing a lupus flare, even though no rheumatologist (or any doctor for that matter) has been confident enough in my symptoms and lab work to label me lupus.  Lupus or no lupus, the treatment of an apparent immune flare is the same — short course steroids, followed by careful monitoring of my ANA and complement levels, as well as keeping a close eye on the littlest But IF.

It’s strange to leave an appointment where so much of the conversation was dominated by discussions of my new heightened risk of pre-eclampsia, pre-term labor, intrauterine growth retardation, and warnings to watch myself closely for other (lupus?) flare symptoms, with such a sense of ease and calm.  The drive for answers has been one of the few things that has kept me going on this sometimes unbearable journey to biological parenthood, when other options could have been investigated.  My gut told me that being diagnosed with spinal arthritis in my early 20s wasn’t right, that loosing 3 pregnancies (including a strong looking 9 weeker) didn’t add up, that an ANA that high surely couldn’t be nothing, that frequent fatigue and body aches that weren’t resolved by the best thyroid care I could muster made no sense.  Whether its lupus or not I really couldn’t care at this point, but seeing “nonspecific connective tissue disorder” at the top of my discharge paperwork this morning was a huge moment to me.  I’ve stopped believing that we’ll ever have all the answers for why we’ve had to go through what we’ve gone through, and have accepted that, no matter our need for answers, that for so many of us the answers will remain “It could have been” or even “We’ll never know.”  But having that label on that paper, having a doctor take my silly rash seriously, having a physician look me in the eye and thank me for bringing my concerns to him because, “It’s great we caught this so early,” that makes all the difference in the world.

I’m trying not to think to much about the future, to be honest, but am just focusing on the present.  Today we found some more puzzle pieces that were wedged in between the couch cushions.  Who knows if we’ll have the time, energy, or desire to finish the puzzle, but finding those pieces is a necessary first step.

Now, would I have given anything to avoid all this and continue on in my blissful, rash-free, non-lupusy, pregnant happy state for the next 6 months?  Fuck.  Yes.  But, if this had to happen, I’m glad this is how it all went down.  I’m glad that from 4.5 years of fighting, learning my body, and ceasing to give a crap what others think of me, I’ve come out the other side stronger and better able to help myself and ask others for help when help is needed.  I’m glad I’ve learned that sometimes and itch is not just an itch.