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.

Survivor’s guilt (even if pre-survival)

Three realizations converged today (well, four if you count my new awareness of what the moist parts of your eyes and nostrils do in a -35F windchill).

First, I woke feeling lost about what to do with this blog in the new year.  I’ve had checking in here on my list of things to do for ages now, and even with ample down time over the holidays, I still couldn’t muster a post.  It came to a head this morning because I did actually, in theory, have something to write about.  Baby But IF gave us our first serious scare yesterday (well, aside from the constant, skull-numbing, miscarriage fears I’ve had since the moment I saw that flash of white shoot across the ultrasound screen on the day of our embryo transfer).  I won’t belabor the point (yet? ever?) but did y’all know that it’s common to have blood pressure dips in pregnancy?  I surely didn’t as I gingerly walked down the stairs to tell Mr. But IF that I thought I was dying yesterday morning after a post-vomit check-in with his blood pressure cuff gave me a starling 86/57 result.  So yea, I thought today, there’s something to chat about.  There’s an update worth mentioning.  There’s a way to contribute something of worth that might help someone in the future.  But no, I almost immediately decided, this blog is not the place to gloat about my (totally blown out of proportion) brush with death.  That’s totally inappropriate.

A few hours after making that decision, I read Dogs Aren’t Kids’ recent post “I’m an Asshole.”  And, what can I say, it resonated.  It wasn’t until about halfway through the post that I realized that I’m the hated and not the hater in this scenario.  And, that realization stung.  Not because her words hurt me (they absolutely didn’t), but because it felt like it was taking away part of who I am, part of what I define myself as.  You succeeded, Dogs, and this post is tremendously brave.  I just feel lost because I don’t know how to be brave myself anymore.  How to morph my IF activist self into a pregnant IFer with any semblance of credibility.  I stared at the empty text box for an hour, struggling to phrase a comment, find the words to un-self-righteously convey a “Fuck yeah! Damn straight!” on her blog as I chugged my Metamucil and wondered whether those flutters low in my abdomen are what I’ve started to think they might be.  Ultimately, I closed the tab.  I ran away.  I was decidedly un-brave.

Finally, it came together when a member of another IF “grads” board I’m on posted the Huffington Post’s blog “A Twin Mom’s Post-Infertility Survivor Guilt.”  As I wrote on my wall when I shared the article on Facebook:

Nothing more to say but “Yep,” “yep,” and “yep” (and I’m not even close to delivering or even fully accepting that we’ll get to meet this little one yet)!

I’ve actually used the AA chip analogy in therapy sessions before.  A few weeks ago my therapist asked (with no hidden agenda or any other motivator but to continue our conversation), “Why does membership in the ‘infertility community,’ as you call it, matter so much?  What makes you so fearful about leaving that part of your life behind?”  I stumbled quite a bit at that one.  Me, that usually has an answer planned for every possible question, for every contingency — I just froze.  I mumbled something about being true to myself, about wanting our struggle to help other people, about how I’ll never be able to forget what we’ve been through.  Ultimately I formed my own version of the AA analogy.  Though, in my version of IF AA you would get to stay a member forever… I’m just not quite sure how that happens just yet.

Then I got to Goldberg’s commentary on her shower.  She writes, “Years later, when my mother-in-law sent out invites for my own baby shower — for twins, no less — I had to stop myself from launching a follow-up email apologizing, saying something like, please, don’t feel obliged to come. People did come, though, with heaping bags of registry loot.”  That one hit me straight in the gut.  When we were home for the holidays my MIL announced she’d be throwing me a shower.  She asked when I’d like it to be, what I’d like, and who to invite.  My first thought was, “I can’t think about this yet, we still don’t know if this pregnancy will last!,” and my immediate second thought was, “Oh God, even thinking about going to my own shower is overwhelming and filling me with dread and bitterness!”

I have some confessions to make.  Namely:

  • I still loathe pregnant women.  Like give them dirty glares from across the aisles at the grocery store levels of hate.
  • I’m terrified of the day I really start showing.  It will truly be open season for talking to me about my pregnancy.  A few have tried it already, and I keep replying to all questions in hushed whispers, all the while suspiciously looking around to make sure no one can overhear me. This from a woman that gladly discussed infertility, IVF, IUI, timed intercourse, cervical mucus, miscarriage, hell, you name it, loudly and proudly in crowded bars and restaurants.
  • After four years of being anal retentive about every drug, calorie, drink, or thought I put into my head (Could this saucer of soy sauce make it less likely for us to conceive?  Will half a cup of coffee impact the effectiveness of Clomid?), I’ve been startlingly hands off about this pregnancy.  I’d love to say it’s because I’m just that cool and relaxed about it all, but, if I’m being honest, I had that sushi on December 23rd and that second cup of coffee on Tuesday because I can’t bring myself to act pregnant.  I’m still so certain it won’t last.
  • I’m ashamed to discuss the preliminary baby names we’ve agreed upon with friends and family.  Not for the usual reason – you know, the fear that someone will hate them – but more because it feels like an act of smug arrogance.  Frankly, I’d love for them to argue with me about hating the name because fighting back is something I’m pretty damn good at these days.  Having happy, lighthearted conversations isn’t.
  • And, perhaps the deepest, darkest secret of them all, I’m actually excited.  I’m fascinated with my hardening belly, the flutters I think just might be something other than gas, the sound of my doppler, and (once the sheer panic dissipated) even the threatened black out yesterday.

And, that’s what today has given me.  I don’t know what this blog is for, or even who would want to read it anymore.  I don’t know how I can live life infertile and pregnant at the same time.  I don’t know if the survivor’s guilt will fade or if I even want it to.  All I do know is that I’m here, I’m infertile, I’m pregnant, and I’ll likely be trying to figure it all out for the rest of my days.  Why else is life worth living if not for growth, reflection, and reinvention?

FB Official

Over the years I’ve had plenty of time to think about how or if Facebook will play a role in my pregnancy.  I’ve gone from loathing any thought of allowing FB into my womb, to desiring more than anything to reclaim some normalcy in this process, even if that “normalcy” is defined as blathering on about bumps on FB.  Initially my hesitations about FB announcements were twofold.

  1. I feared I’d hurt someone like me.  Someone that simply wanted to mind their business, stalk casual high school acquaintances, and blow off a few minutes of the work day with FB.  That someone that logs in happy and logs out crying after yet another “my baby is the size of a kumquat” post from a 20-year old cousin that got married two minutes ago.
  2. I was wary of the stupid comments.  The “About damn times!”  The “I told you it would happen if you just relaxed!”  The “All in God’s time!”  I’ve gotten enough of those face-to-face over the past 4 years, I didn’t want a digital jab hunting me down and hurting me in the comfort of my own home or office.  I also didn’t want to explain to great aunt so-and-so why I deleted her comment and encouraged Mr. But IF to go ahead and chug down the fifth of whisky for the both of us.

But, as the years drew on, as we proudly came out of the IF closet on FB, total radio silence about any fluke pregnancy we’d managed to trick long enough to stick around until announcement time seemed unrealistic.  And, frankly, I’ve sat through enough cutesy announcements by this point that it’s about damn time that I spew some (admittedly bitter) joy back into their smug fertile faces newsfeeds.  So, we did it.  We made it FB official.  I feel funny…

Because brevity isn’t really my forte, my initial plan of a simple photo collage quickly went out the window and was replaced with a full-on video montage.  Oh, and can I just say, I had FAR to much fun sticking stickers all over this thing to anonymize the personally identifiable content.  Enjoy!

Insidious IF

It’s been six days since I was released from the RE.  Six days since we saw that undeniably human-shaped fetus wiggling around in my womb.  Six days since I had some reassurance that something might go right for once.  Apparently six days is about all the unassisted hope I can muster.

I’ll start by adding that (thankfully) I have an appointment with my therapist this afternoon.  Seems we’ll have plenty to discuss.  And here’s an additional caveat that if you’re in a fragile mental space this post is not for you.  If negative thoughts, frank discussions of miscarriage, and angry rants are not in your best interest right now, then stop reading here.  It’s about to go downhill quickly I’m afraid.

Dear Lord how do you survive the constant worry?  Since being released from the RE last Wednesday, I’ve already come to feel mentally battered and beaten into a pulp.  After becoming accustomed to the weekly reassurance of good-looking ultrasounds at the REs, the prospect of no more ultrasounds any time soon is enough to push me over the edge.  These past few days I just can’t stop reliving each of my miscarriages.  I can’t talk happily about this pregnancy (though I’m trying for the mister’s sake).  I can’t even allow myself to do anything about the fact that my pants are starting to get too snug.  All I think about is what it would feel like to have a new pair of maternity pants or a belly band arrive the day I start miscarrying.

I know the worry will never completely go away (like, for the rest of my life), and I know that is normal.  That one of the few things fertiles (including my therapist and OB) have said to me in the past several weeks that hasn’t immediately made me want to punch them.  It’s true, in the worry regard I’m likely as normal as the mister’s kid-spouting cousin.  All new parents worry about the health and well-being of their children.  As much as I’d like to argue that the fact that I have three children I’ll never meet makes my worry worse, that’s just not productive and, most likely, not true.

I guess, more than anything, I’m just frustrated with the medical industry and it’s total disregard of worry as a treatable medical complaint.  After starting to embrace a future where I would NEVER have to look an OB/GYN in the eyes again (GPs can do a regular pap, people!), the piss-poor hands-off attitudes of these “specialists” have me irate.  If one more medical “professional” tells me something is not “medically necessary,” I plan on sending them all my counseling bills.  Nickle and diming me on a 5 minute ultrasound is just costing me and my insurance company that much more for mental health services.  Infertility is an insidious ass and invades each and every aspect of your being; to deny me an NT scan, additional blood work, or an extra ultrasound because I don’t fall on the right side of their actuarial tables is a daily middle finger.  Where were these medical professionals when I was diagnosed as infertile at 25? Where have they been the last 4.5 years, the last 3 miscarriages, the last tens of thousands of dollars?  I was breaking their projection models then, but instead of extra testing I got a swift kick in the behind and a “good luck, you’re on your own.”  And, what doctor thinks I WOULDN’T gladly pay out of pocket for extra monitoring after all the time, money, and heartache was have put into IVF?  WHY do they insist that I must come off Lovenox because, “ouch, those bruises look painful, you really don’t need to keep doing that!”  You know what is painful?  Miscarriage.  And I’m not even talking the mental pain…

I’m a mess because of tomorrow.  It will be my first (and likely last) appointment with the maternal fetal medicine doc, and my first true OB consult with my OB (previous visits have been coded as GYN).  I’m expecting a several round knock-out fight, and don’t quite know which of us will come out on top.  My RIs plan got me PG, my RE takes the credit and calls the RI a “witch doctor,” the OB tells me I’m normal and on “crazy” and “unnecessary” medications, and the MFM (who I’ve not yet met) will almost surely tell me I’m wasting his time by being there.  So much for the added peace of knowing you have a whiz-bang team of experts there to guide you through the bumpy ride.

Ultrasound at 9w 2d

The human-shaped blob, complete with placenta and umbilical cord.

All the while, I’m terrified.  I look at my latest ultrasound, I see the human-shaped blob, I recall what it looked like to see the blood flowing through the umbilical cord, and all I can think is, “Wow, it’s big.  This miscarriage will surely hurt worse than the last one.  Especially if they send me home from the ER with a collection jar again after declining to do an ‘elective’ D&C on a Saturday.”

And then, other times, I look at that ultrasound and it all melts away.  Yes, I’m furious that it’s all I have to hold on to.  I’m concerned it is all we will ever get to see and hold of our little one.  I worry that this is as good as it will get.  But, some small part of me still squeals with delight to see that blob with a head and flippers.  Am I really justified in my rage, or am I just becoming an overbearing mother that wants to order the million-pack of school pictures already?  And then I sigh and scold myself for thinking too far ahead.  For opening up to hope.  For too easily dismissing insidious IF.

Of blobs and blogs

According to this morning’s ultrasound, the blob has turned into a large, semi-personish shaped thing.  An oblong wiggle-worm with a heart thumping at 170 beats per minute.  Can we all just take a moment and collectively exhale with a, “Holy shit!”?

And, breathe…

As I’ve written before, I’m not quite sure what more to say.  Here’s the update.  I’m:

  • 8 weeks, 2 days pregnant with an increasingly person-shaped gray mass;
  • dreading and relishing the fact that next Wednesday’s appointment will be my last visit to my RE for the foreseeable future (though we’ve got 9 frozen blastsicles stored with them that we shan’t forget);
  • (im)patiently waiting for November 27 and my appointment with the maternal fetal medicine doc (high risk OB) and OB;
  • counting down the days until our NT scan where blob will REALLY look humanoid!;
  • alternatively nauseous from nerves and pregnancy (and nervous when I’m not nauseous, nervous that I am nauseous, and even pregnant when I’m neither nervous nor nauseous);
  • allowing myself to dream up/talk about the way we will announce blob in a manner that respects and acknowledges that path that got us here; and,
  • spending way too much time on Amazon looking at dopplers, ultrasound frames (Christmas gifts!), and other gateway baby stuff (can’t quite muster the “hard” stuff like onesies and little socks just yet).

(Ok, I may have actually just ordered a doppler.  Shhh!)

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While I’ve been busy off in brain dead beta worry land, early pregnancy limbo, hoping for a heartbeat holding pattern, and other similar locales, I’ve been a bad, bad blogger.  I haven’t failed to notice that MANY of you have shouted out to me or nominated me for the various rounds of blog awards circulating.  Seeing as it’s taken 4 years, 3 miscarriages, 2 states, and 3 clinics to get to this moment, I guess you could say I fully embrace the “better late than never” mantra.  My next two posts will correct this oversight.  Promise!

The gift that keeps on giving

I’m 8 weeks pregnant today.  Things appear to be progressing normally.  I have an ultrasound on Wednesday, expect to be released from my RE next week, and will have a combined maternal fetal medicine consult and first (ever) OB appointment on November 27.  Really, what more could I ask for?

You see, the thing is, infertility and repeat miscarriage are gifts that really keep on giving.  Infertility is not lazy, it works hard each and every day to reassert its control over your life.  Miscarriage is not easily forgotten, but rather, like infertility, haunts my every day.  Neither is curable, eraseable, destroyable.  No matter how this pregnancy ends, no matter how future pregnancies end, I will be infertile, I will have suffered repeat pregnancy loss, until my dying day.

I also, it seems, will continue to suffer strained relationships due to the gift of my infertility.  Yesterday I may have injured my relationship with my aunt – my only surviving female blood relative – to the point of no repair.  Ever since my mom (her sister) died in 2002, Aunt L has tried to step up, tried to be there, tried to fill the gaping hole my mother’s passing left.  She’s done admirably.  Through her own immense grief and while receiving her own life-threatening/life-altering medical diagnoses, she’s been strong through graduations, engagements, marriages, and various other events that she should never have had to be the primary support person for.  Yet, her job is a thankless one.  She’s not my mom.  She’ll never be my mom.  And, for that, I seem to never be able to forgive her.

To say she’s struggled to understand my infertility is an understatement.  If it didn’t hurt so much, it would almost be comical how stereotypically wrong her responses have been to my pain time and time again.  When I became pregnant in 2011 after ovulating on vacation on day 56 of my cycle, she laughed as she replied, “I told you all you needed to do was relax and take a vacation!”  When that same pregnancy was diagnosed as ectopic she said, “It just wasn’t meant to be.”  After scheduling my first laparoscopy to investigate possible endometriosis (a condition that she herself has, that forced her own hysterectomy in her mid-30s) she told me I was being “too much of a worrier.”  Each medicated cycle after I was reminded that I’d never succeed if I was putting all those “unnatural hormones into your body,” and each negative test after negative test I was told, “It’s just not your time yet.”  When our third pregnancy ended in miscarriage last winter, she cried with me, but reminded me that the worry I had been feeling since our first bad blood draw at 5 weeks, “certainly did your baby no favors.”  She was visiting when we were approaching the end of my stimulation phase for this IVF cycle, and insisted on driving with me to my last monitoring appointment before trigger and retrieval.  On the car ride to the clinic she told me I could have avoided all this “IVF stuff if you’d just stuck with acupuncture.”

This woman loves me deeply, wholly, and completely, but seems incapable of saying or doing the right things.  And, believe me, I’ve taken my own advice – the advice I dole out so often at my RESOLVE group.  I’ve told her how her words make me feel.  I’ve asked her to respond differently.  I’ve told her what I need from her.  Each time I’ve been ignored, or, worse, corrected.  “More negativity is not what you need,” she explains, “you worry so much it makes no sense to make everyone else around you be just as miserable!”

So, for the past couple weeks, I’ve taken the coward’s way out.  She calls, I don’t answer.  She texts, I don’t reply.  It snowballs out of control.  My anxiety gets higher, the inevitable confrontation gets worse.  Finally, yesterday, Mr. But IF made me answer her call.

Apparently she thought I had died in a ditch.  You see, I do all those ridiculously long drives to the doctor and surely I got in an accident and no one noticed or told her.  (What that says about my husband and friends we’ll just ignore for now.)  I’m pregnant and she wants weekly updates, she demands weekly updates!  I told her that was just too much.  With a shaking voice I explained (again) that I just can’t keep calling and saying, “Yes, still pregnant.”  That even those three words leave me in a complete panic.  That just saying them seems like tempting fate.  That in my mind it’s not three words, but five.  It’s “Yes, still pregnant, for now…”

Again I was told that response is silly.  That my emotional needs are irrational.  If only it could have ended at that.

As her voice turned from stern talking to to chipper happiness, she said, “Well, fine, then we can talk about some other happy news at least.  Your cousin S is having a little boy, so you need to have a little girl.  I’ve told everyone you need to have a little girl so that your kids can play together!”

And, then it crashed.  The tears started flowing, the anger formed a lump in my throat the size of a softball, I couldn’t form words through the shaking.  My young cousin got married a few days after my most recent miscarriage.  After weeks of my aunt going on about how fun it will be to be pregnant at her wedding, I couldn’t manage.  I skipped her wedding.  A well-timed snowstorm gave me the excuse I needed to back out of the 6 hour drive home to the wedding of a cousin I barely know.  A cousin that is apparently very much NOT infertile.  A cousin who’s pregnancy and future little boy are just another on the long list of living reminders of all that infertility has stolen from me, of all that miscarriage has closed my heart to.

I think I’ve done fairly well at avoiding the constant comparisons and the what could have beens.  But hearing of the easily conceived pregnancy of the cousin that (I kid you not!) was on a television dating reality show when Mr. But IF and I first started trying to have our first sucks.  Having my aunt ignore my pain and replace it with joy for the niece who will give her her first grand-nephew sucks.  Having this all happen in time to coincide with the week when we lost our last child, when that heart beat stopped without apparent cause between 8 and 9 weeks, is cruel and unusual.

At least, as I said to Mr. But IF, I have something to talk to my counselor about on Thursday.  If I’m able to get out of bed on Thursday.  If Thursday isn’t the first day of grieving and moving on from a bad ultrasound on Wednesday.  But, it seems, I should just stop with the negativity and celebrate the gleeful naivete of friends and family and cousin’s named S.  Surely it’s my bad attitude that’s done this to me all along.  I’m constantly made to feel that I caused our struggles, I made my misery.  Why does this seem like rational logic to those that love me?  Why don’t they, by extension, remind me that positivity and yoga could have cured my mom’s cancer?  Why, when I speak of the pain of missing her, am I not reminded of a cousin, a friend, a stranger that has two living parents?  Shouldn’t celebrating living parents cure the lack of my own?

Speechless

I’m sorry I’ve left you all hanging for a week.  I honestly haven’t known what to say.  How to act.  How to exist.  For the past 7 days every moment has been full of equal parts hope and dread.  Every sentence has ended with, “We’ll know more next Thursday.”

Well, it’s Thursday.  And we do know more.

This morning Mr. But IF and I woke at 5AM and drove to the clinic.  I was on the table sans pants by 7:15.  We saw a gestational sac, yolk sac, and wiggly 6w2d fetal pole at 7:17, and heard the 115bpm thump, thump, thump of the fetal heart at 7:19.  (My ultrasound pictures are time stamped.  I can’t tell you how happy it makes me to know I’ll always know when we first saw and heard that thump!)

I’m elated.  We’re both elated.  I’m also a good bit speechless.

After so many years and so many heartaches (including the still painfully fresh memory of hearing a similar thump less than a year ago), I’m gun-shy.  I want to cry from sheer joy.  I want to truly believe this is happening.  I want to be able to start speaking in certainties, start planning the nursery, start enjoying this event that I’ve put so damn much blood, sweat, and tears into for all these many years.  And, I really am getting closer.  Closer than I’ve ever been, honestly.  But, I’m not entirely there yet.

I don’t know what to do with myself.  Infertility has been such a huge part of my life.  I’m not quite sure who I am when I’m not squaring off with it each and every day.  When all that remains is the worry and doubt, but not the tireless attempts to manipulate my body into behaving naturally with drugs, appointments, and prayers.  To be frank, I’m not really sure what it is I do around here anymore.

Gushing isn’t appropriate.  It still causes me anguish, and it makes me remember all the times my heart broke when I had to hear of others’ (often well-deserved) victories.  When you are a member of a group united in the pursuit of a common goal, yet only some have the opportunity to realize that goal, it can make for some balancing.  It’s not lost on me that a few months ago I was writing of the pain of coming to grips with a child-free future.

Fretting isn’t right either.  I’ve done that.  Ad nauseam.  It’s a familiar emotion, but it’s not quite accurate either.  We have more reason to hope right now than we’ve ever had, and I don’t really want to let that opportunity pass me by.  I’ve had such a difficult relationship with hope for so long, I’m ready to start letting it back in, even if just a little bit at a time.

So, at least for a while, I think I’ll default to rote updates.  While it seems out of character to divert from tackling difficult emotions head on here (that was the entire reason I started it), it also seems a good bit pointless to try and examine my emotions when I’m not entirely sure what they are.  So, in lieu of making things up or allowing this site to disappear into the ether, we’ll stick to the facts.

 

Today’s facts:

I’m pregnant.

Fetal pole measuring 6w2d.

Fetal heart rate 115.

Next ultrasound and Intralipids infusion on Wednesday.

I have 800 pieces of candy at home waiting for Trick-or-Treat deluge.

Meet the blob

Not gonna lie, kinda feel like I’ve been snorting sunshine and unicorn shit.  I’m so high on life right now I don’t even recognize myself.  This happiness thing is a total mindfuck.

First, I’d like to introduce ya’ll to Blob.

ultrasound of gestational sac

Say “hi” Blob!

That, ladies and gentlemen, is a fucking gestational sac.  A sac IN my uterus (and not my tubes).  A sac measuring 5 weeks 1 day (pretty damn spot on to my 5 weeks 2 day reality).  And a sac that has a rockstar 5,306 beta value to keep it warm at night.  Did you seriously catch that beta?  Last pregnancy my beta at 7 WEEKS was just 2,083.  Blob here is a total overachiever.  I’m smitten already.

I don’t even know where to start with how the rest of my day went.  I mean, the rest of the day pretty much comprised of me floating from moment to moment on a cloud of euphoria.  Have I said this happiness shit feels weird on me?

After meeting the Blob, I “worked” for a few hours before heading to my first counseling session with a new counselor.  I’d scheduled the session to help me cope with what I thought would be, at best, inconclusive news, and, at worst, well, you know what news I thought I was getting today.  Instead I flitted into my appointment a happy person.  What exactly does one do in therapy when they’re happy?  I’ve totally never had that problem before.  Anyway, Dr. H appears to be a brilliant sweetheart.  She actually reminded me so much of my dear friend A, herself a budding psychologist.  Unlike the previous IF counselor I consulted, she didn’t immediately dismiss me for wanting to have a sense of control in the process – to be informed of my lab values, to have a say in my treatments, to keep in close contact with my doctors.  Instead, she said exactly what I’ve always found myself saying.  She explained:

If you know you are a researcher by nature, having all the data points can be a great source of comfort!  I don’t think you are harming anything by recognizing what type of person you are and what type of relationship you need to have with your physicians.  I just wish you could find one that would listen to you a little better and not belittle your coping mechanisms.

Shut the front door!  45 minutes together and this gal already “gets me” more than most people I’ve ever met.  Score!  I return in two weeks, but have her cell number should a crisis arise in the meantime.

Next it was off to my first ever OB/GYN appointment in a very long time.  I mean, I’ve scheduled many OB appointments, but I’ve never actually made it to one.  Imagining having to go to this appointment a few mere hours after hearing, “I’m sorry, I can’t find anything in your uterus” or “I’m sorry, your beta just isn’t rising” literally kept me up last night.  Visualizing walking into an office chock full of giant bellies and murals of newborn pics made me sick to my stomach this morning, and had me shaking uncontrollably as I rode the elevator up to their sixth floor offices.

When I walked in, no bellies.  No pictures.  An empty waiting room with a few no-nonsense receptionists that were immediately attentive to my presence.  (What?)  I had barely sat down when a nurse scooped me back (an OB that’s on time?), and my 2:40 appointment started promptly at 2:40.  Aside from the nurse being unable to find PIO in their computer system (for which she was highly apologetic and did not blame me like so many other nurses before for having the gall to take such unusual medications), my interactions with Anne the nurse were pure gold.  Not once did she say, “Just relax” or “I had a friend who..” (both phrases that were tossed at by my RE’s nurse just this morning).  Instead, she smiled throughout, congratulating me, fawning over the pic of Blob I brought with me, and told me to call whenever I needed anything.  (Wait, what?)

When the doctor entered the room he had the same genuine smile across his face.  30 seconds in his phone went off (oh no!  I’m going to get rushed and ignored again!).  He told his intern he was with a “very important new patient” and he’d have to call her back.  He then apologized for ignoring me for a total of 15 seconds and explained, “Ah, you know, teaching hospitals.  Everybody always wants you NOW NOW NOW!”  We talked my history, we talked my thyroid, we talked his philosophy, we talked me RE.  He kept reassuring me I was in the drivers’ seat, that no questions were silly, that he’d worked with many of my RE’s (who he kept referring to by his first name) before, and that he will never forget the journey that’s brought us here and always respect the unique challenges our IF has created for us.  He said, “I know there is no ‘normal’ for anyone who’s had to go through infertility.  You won’t believe this baby is here until you’re loading it in the car seat, and that’s fine.  Just promise me you’ll let me know how I can help make it a little easier.”  (OMG, am I on candid camera?)

I told him a bit about this year’s ANA drama (see, for example, here and here for the beginner’s guide).  He was downright annoyed at the way the whole thing was handled.  “You mean, they just sent you away with their hands in the air saying ‘Who knows?'”  Pretty much, yea, that’s what they did.  That did not abide Dr. T.  He ordered a full autoimmune workup for me and drew the blood right there and then.  Another more advanced ANA panel, DNA something, Sedimentation rate, C-Reactive Protein, Lupus Anticoagulant, etc., etc.  If anything comes back abnormal, he’s getting me in with their sister Perinatology clinic.  I have found the only proactive doctor left on this planet.  Holy shit did I hit the jackpot!  He also will be monitoring my thyroid (with both TSH and Free T4… woo!) every 4 weeks and adjusting meds as necessary.  He said he’d find a way to get me in for as many ultrasounds as I needed to feel comfortable (OMG!) and that he’ll be there with me through it all.  He gave me his fucking cell phone number!  Yea, my 2:40 appointment?  I left the building at 4:00.  Not one bit of that was me waiting alone in a room.  What the what?

I will follow up with him in 2 weeks (November 7) to go over the findings of the blood work and give him an update on how things are going with the RE.  Assuming all is well (oh, please let all be well!) I’ll be scheduled for my initial OB appointment about a week later.  Someone pinch me.  Is this actually happening?

So, now, it’s off to see the hubby.  I’ve been running all day, he’s been working all day, and we haven’t seen each other since I rolled out of bed at a crisp 5:30am in order to get to my RE appointment on time.  We’ve texted and had brief phone chats, but now I’m off to meet him, hug him, and gush endlessly at a celebratory dinner.  Good night my lovelies, and thank you so much for helping to hold me together all these past months.  You have NO IDEA how much you’ve all meant to me.