holiday gifts

As the year winds down to a close, I have been finding it difficult to post.  I've spent these last few months focused on trying to heal, to be a less broken soul.  The holidays whizzed by in our house, and the silence concerning my last loss was deafening.  I truly understand that it is not out of cruelty that so many of my loved ones can't utter any words when it concerns my lost baby (girl). For some reason we mere humans are not equipped with the vocabulary to discuss these things.

A quick trip to NYC with Niblet to see my parents a few days ago produced the opposite results in some respect.  While they lack the words, it was clear that this most traumatizing loss was front and center in their interactions with me. And while they were being equally kind, they too sort of stumbled around the topic, treating me (unintentionally) like a soul to be pitied.  I suppose I am.  But that inadvertent acknowledgement of loss was nearly as painful as the deafening silence.

Don't even get me started on when Niblet handed me a book to read in front of my mother about a little boy anxiously awaiting his baby brother.   Or when my dad played baby videos of her on his ipad, and it became so stark, the realization that these could be the only and last baby videos ever captured for our little family.  Niblet is in kindergarten now, and my days of mothering an infant are over.  That's a heavy weight.

I spent a grateful hour in therapy a few days before Christmas, voicing what no one around me will - or can - voice.  Between these sessions (not covered by insurance unfortunately, so a gift to myself) and a gift of my husband (a certificate to my favorite consignment shop, where I can while away the hours looking for vintage cashmere, my weakness) I am shooting for some sanity.

I have diligently been trying to follow the instructions of Dr. K, imagining my life with only Niblet.  While it's a bittersweet way to live, it is probably a healthier way to live.  We are "NTNP" in the justonemore household - "Not trying not preventing" when it comes to procreation (though I am sort of mindful when I ovulate).  Some mornings I wake up utterly petrified at the thought of pregnancy.  Other mornings I wake up sad that this chapter of my life may come to such a brutal close.

But enough of my maudlin ramblings.  To my readers who have had a similarly rough year, it is coming to an end.  I offer no resolutions, no forced cheer.  What I have learned is that the morning of January 1st will be a new dawn like any other, and in that respect, a gift. I offer only the most sincere wishes for Peace and the hopes for gentler days ahead.

PTSD

You know when your husband leaves the house and you say goodbye, and you're then wracked with fear that he's going to get rear-ended by a semi on the highway and that peck on his cheek will be the last kiss you ever give him? How about fears that someone will slam into the passenger side of your car and kill your child while she's munching on cheddar bunnies in the back seat.  Or what if she's hit by a careless speeding driver next to her house while she's playing in the front yard. Or perhaps your number's up and you'll be hit by random gunfire while walking down the street, leaving your kindergarten-aged daughter motherless.

These aren't the sick thoughts that flash through your brains, say, every day?  Just me?

I've mentioned before that I have always been on the neurotic side, but honestly, this is getting debilitating and exhausting.

The only "comforting" piece of information in this:  I am not alone.  A quick survey on one of my support boards found a tribe of women who are also struggling with seemingly irrational fears of death and destruction.  The world around us is frightening and violent and clearly out for vengeance on us and our loved ones. My heart aches thinking about anyone else who is living this way, but at least I am not completely on the train to crazy town. There is reason why my brain is firing on these awful cylinders. The trauma runs deep.

They didn't get the fucking memo

Dear Insurance Company,

It's rather easy to point out the ways in which you make our lives harder.  Haggling over ultrasounds, over blood labs.  That's your raison d'etre after all.

But you should also know you are awful.  Just awful.

My baby won't thank me for filling out your fucking survey.  Should I go online to let you know that I have a feeling that "something isn't right?"

My baby is dead.  This is the fourth one in a row.  You couldn't figure that out from my medical files?

"My wish for you"

"My wish for you is not about money or wealth.  I wish for you to be just like that old woman who lived in a shoe like that nursery rhyme.  So that when your husband would come home, he would be tripping over children.  You are such a mom.  You have so much love.  I believe that you will have another baby to love and raise.  I believe in miracles."

Well that was an unexpected moment in my day.

You see, those words were spoken by a friend at work who knew about two (possibly three) of my losses.  But she did not know about my last baby lost in October until I informed her after she spoke those spontaneous words.  I say spontaneous, because they were just that.  A different colleague had brought her 3 year old to the office, and after a staff meeting I heard her cry and ran over to her.  And her noticing that sprint across the room prompted the soliloquy above from my friend.

It's funny.  Just this morning, Niblet decided to go all drama queen on me and tell me what an awful mom I was (because I had woken her up for school, and was forcing her to actually get dressed, poor baby).  So I won't let my friend's wishes go to my head, the miraculous Niblet will always keep me in check.

A date in time

Today would have marked the estimated due date of miscarried baby #3.  We will never know whether this one was a he or she, though somehow, I suspect it was a boy.

Many members of this sad sisterhood have bought themselves tokens of remembrance for their lost babies.  I joined them during my holiday weekend in NYC when I found this trinket.

'Tis the Season

I was recently commiserating with a friend about the Holidays.  Holidays are a fucking minefield for survivors of infant loss and RPL.  Holidays in the wake of a loss are hell.

All of my family members are incredibly supportive, but some of them....well, as kind as they are, they take great comfort in stating aloud at the dinner table how "lucky" we are, how gratitude fills our hearts.  I will share with you this:  Having hosted Christmas dinners for a number of years now, I have come to expect those moments where I will crawl in my skin.  Where the grief of loss is too overwhelming and I excuse myself from the kitchen to take the longest shower in creation.

I don't need reminding that Niblet is a miracle.  I don't need reminding that I am incredibly lucky to be in a loving marriage with a beautiful roof over my head.

To those of you who are facing grief this season, I offer this incredible essay, which articulates the minefield better than I ever could:

"Telling me to only focus on my blessings and not what’s missing this holiday season is like telling me to forget if I had lost all my limbs. Yes, I’d still be thankful for what I had left and yes I’d also be deeply sad for what is missing."

liberation

Lord knows I could change my tune in a year and be absolutely despondent that I didn't jump on the opportunity to do IVF....but for now, this decision to get back to living feels right to me.  It almost feels liberating.

While I will likely continue to be an emotional wreck over miscarriages and grief.... and while my OCD tendencies will likely be in full force as I continue down the road of supplementing and changing my diet to address the motherfucking gene mutation that I am absolutely convinced led to my baby's demise.... and well, there's also the whole business of religiously peeing on sticks.... I can't help but feel better about the fact that painful shots of hormones, in addition to a myriad of pokes, prods and scans are off the table (for now).

There's also another thing that makes decision easier, and it has to do with my husband.  Who, let's just say, does not want to stay wedded to his current job situation.  Its a job situation with insurance that makes IVF possible.  It's also, however, a job situation he is very unhappy in.  So I will only say this:  taking IVF off the table could have some other positive effects.

My last pregnancy, ostensibly the winner of the golden egg award - until it wasn't - was the outcome of some TLC.  Massages, yoga, dance, making my body a veritable temple to good health, all of that was on the table.  I caught a good egg once, maybe I can catch another?  Is that too much to ask?

My acupuncturist is convinced that I can.  And if I try really hard, I can almost believe that Dr. K sees it in the realm of possibility, and decidedly without drugs.

So peeps, here I am, back on square one but at least with a definite path, one that involves a fuckton of viatmins and supplements, an elimination of gluten from my diet (ugh), and being more diligent about exercise. 

The RE you want is the RE in your corner

 "Do you truly want to try again?" asked Dr. K. "Are you strong enough?"

Dr. K (with a resident RE in training in tow) was very kind this morning.  "I am guessing that if you didn't already have one child, this would be even harder for you," she continued.

It's kind of awesome, talking to a doctor who is gentle, commanding, and also in your corner.  There was no discussion of my AMA, my ancient eggs, anything to make me feel less than worthy of a baby.   Dr. K made a suggestion that I truly believe was meant from a place of kindness: "Try to imagine your life with one child.  You don't have to give up trying, but it will make the future less stressful for you if you take the pressure off."

I have been instructed not to consider IVF at the present time.  My high FSH predicts few(er) eggs would be retrieved, and it's not worth subjecting myself to the injections and pain while I am still finding myself pregnant naturally.  She WAS, however, very forceful in reiterating that my high FSH does NOT mean I cannot get pregnant (obviously, given that I was pregnant with the elusive "good egg" the month after the evil lab work that had a clinic kick me to the curb). She will not test my FSH again because she thinks it will only add to my general state of stress and despondency. 

So, my instructions were to continue trying, with higher doses of folic acid (which I will be substituting with the methylfolate version).  Dr. K will monitor my next pregnancy with as many early ultrasounds as I need to stay calm.  I suppose the best thing that could come out of a meeting with an RE after a pregnancy loss is their belief that you could end up back in their office knocked up again.  So there's that.

The biggest smile of the consultation came when I asked about my hinky tube though....

"In June I had an HSG and there was a late spill from my left tube.  I was told this significantly heightened my risk for an ectopic pregnancy."
"Bullshit" said Dr. K.  My eyebrows lifted up.
"Actually," I continued, "I was told the tube should be removed before I even consider trying to get pregnant."
"Bullshit," she repeated. "That's total bullshit.  A late spill is often the result of the apparatus not inserted correctly."  (I quickly recalled a different Dr. K jamming a catheter in me).  "Have you ever had a pregnancy that wasn't intrauterine" she said, smiling.
I grinned back.  "Well, there's one less thing I have to worry about."
"You've had enough to worry about."

This bitch is mine

Coming soon....

plugging away

"The people I see who keep plugging away, who just keep trying despite the roadblocks and setbacks and the pain, those are the patients of mine who take home babies."

Words of my therapist.

Fuck (western) Doctors

"My visit to Dr. H was uninspiring," I wailed to my acupuncturist.  I described how, while she is a very nice doctor in the world of doctors, she too could only offer me donor eggs as a next step to consider.

I also note how no one is taking my MTHFR concerns seriously, which my acupuncturist is astounded by.  "I haven't done enough research on it, but you have a mutation that causes a folate deficiency, and your last loss was much like a neural tube defect, which is absolutely linked to folate deficiency."

We talked in more detail about all of my supplements, all of which are geared towards the health of my eggs.  My last egg was healthy, maybe there's another good one in the waiting.  The list currently includes:

• Co-q 10 (600-800 mg) or Ubiquinol (400mg), depending on what I have in the house
• DHEA (75mg)
• Vitamin D (4,000 IU + what's in my prenatal)
• Prenatals - with at least 800mg of folate, ideally 1 gram
• L-Methyl 5 Folate - currently 2grams, going up to 3
• PQQ - 20 mg
• Daily serving of wheatgrass

She thought the list was good, though suggested throwing in Royal Jelly.  Why the fuck not. 

"Oh, and I've been spotting for three days, and it's really getting to me," I continued.  "I know, I know, it's totally normal to not have a regular period after a D&E, but still, I would like something in my body to work right now."

So she proceeded to needle me up along my endocrine system, turned off the lights, and shut the door.

Forty-five minutes later the door opens, the lights go on.  I feel great.  I am realizing that I tend to feel really good  - particularly when I am not in a doctors office.

"How is your daughter doing?" she asked.  "Really well, amazingly well.  She loves her school.  She's a fun kid when she's not pretending to be a Disney Princess," I say with a mock feminist grimace.  "Though I guess it's understandable, she does look like a Disney Princess."

"Does she look like you or your husband?"

"Actually, it's a funny thing...." And I show her some pictures of Niblet on my phone.  And my husband, the source of her blond hair.  We stare at the phone in awe and marvel at the wonder of nature.  Niblet is just so freaking cool.

"You know, I think I'm getting my period.... like right now," I say. "that was some fast work!"

As l leave, I realize I'm not ready for donor eggs, even if I could afford them.

When hope is just a word

Random snippets of some moments during a hellish morning post-op appointment with Dr. H, my OB.

(She hands me a form from the lab that performed the micro array, confirming my girl had no chromosomal abnormalities):
Me:   I don't know what to do with this information, how to process it.  I have seen some websites say that her birth defect was a 1:10,000 random occurrence. 
Dr. H:  It's like you were struck by lightening.
Me:  That's what they told me after my partial molar pregnancy. 

Dr. H:  Do you want to try to get pregnant again?
Me:  I suppose.  I've been pregnant four times in two years.  I guess with my history I would expect to be pregnant again, just not with a healthy baby.
Dr. H:  If you can stand the emotional trauma of it, there's no reason not to keep trying.  You can still have hope.
Me:  Dr H, have you ever had a patient with a history like mine who ever successfully carried a healthy baby to term?
Dr. H:  It's hard to say, all cases are so individual.  I did have a patient with High FSH at age 38, who moved on to Donor Eggs and had a healthy baby.
Me:  Did she ever get pregnant on her own?
Dr. H:  No, I don't think she ever did....  Are donor eggs something you would consider?
Me:  Without a lottery win, no.  And at age 38 my FSH was 3.  At 39 it was 8.  And I still miscarried both years.  And I keep getting pregnant.

My frustration must have been palpable, I know.  Her office gets points for whisking me to the exam room quickly, without having to stare at shiny happy pregnant women in the waiting room.  The doctor herself got some points for accommodating my request to shove a pippelle up my cervix to ensure there was no scar tissue.

But she lost a point for wishing me luck with a final handshake. It was an awkward moment, maybe I am just used to hugs, like the huge warm one my acupuncturist gave me.  I was going to deduct another one for offering me the word "hope" without anything meaningful to back it up, but that seemed unfair.  It's not her fault there is nothing to back it up.

broken or not

One of the things that I can't seem to impress upon people close to me is that this latest loss has me feeling fundamentally different.  I feel broken.  It's hard to describe.... I get through a day with few crying jags.  I laugh.  I eat.  I put my make-up on and try to look nice.  Maybe I do such a good job of it that I fool some people into thinking that I am living in the moment. And I fool those others - the ones who know me - into believing that the days that have passed have healed me. 

But that would be a lie, a grand illusion.  I'm not healed.  And as much as time heals all wounds, there hasn't been enough fucking time.  My grief over her is carried with me, like I am wearing a locket.  Sometimes I can feel it, tactile, as if I were fumbling with the clasp to open it up and look at her.  The pangs hit me at odd moments.  On a conference call.  When I stare into Niblet's eyes, and wonder what her sister would have looked like.

She had a sister.

But my last weekend was also marked with some of those fleeting moments that gave me the hope to keep on hoping that maybe - just maybe - I will walk out of this experience a functional human being.  Someone not permanently broken.
 
Like, I survived the moment where a stranger at a dinner outing asked me if I ever planned on having another child or was it just my 5 year old.  I calmly (I hope) responded "not sure" and proceeded to pick up the giant glass of red wine that was sitting next to my plate.  Which I hoped was some sort of universal symbol of "don't fucking press me on this question," and apparently worked on the nice lady, who pressed no further.

Niblet herself contributed to the calm this weekend, as only Niblet can do.  An old friend of my husband's came to dinner with her boyfriend, and Niblet decided it was an opportune time to display her considerable charms and intelligence to them. The visit resulted in strange, double-edged swords sorts of feelings that night.... On the one hand I felt this gushing and ego-maniacal surge, a sad surge, because,  "wow, we did such a great job with this kid, wouldn't we be wonderful trying our hand at it again?"  On the other hand, I felt a sense of calm,stemming I guess, from a deep feeling in my gut that Niblet would survive just fine in life as an only child.

Disconnect

As much as I like my therapist, I do feel like sometimes we are speaking in different languages.

"Oh, so you believe you will be pregnant again?" she said, almost joyfully, last night.
"Of course," I respond.  "I have little evidence to show that I won't be pregnant again. I just have very little reason to believe it will ever result in a healthy baby."

This conversation, which I feel like we've had a few times already, is why I am constantly asking her whether there's something inherently unhealthy about my drive to try again.

She keeps assuring me that I am merely trying to rewrite the ending to this chapter in my life.  And that doing so isn't crazy at all.

And I keep wondering how many more losses it will take for me to accept my tiny family of three.

Zombie-walking

I am not someone enamored by the current zombie-zeitgeist. But honestly if someone asked how I am right now, I could only really point to zombie imagery.  I mean, I get through the day, in a lumbering, shambling sort of way. Often with a smile or a laugh thrown in.  But I am going through the motions.

Routine helps.

According to my therapist, my desire to get back on the reproduction horse isn't compulsive behavior.  Well, that's helpful.  Who knew, apparently I am not only a fighter, I am an optimist (ahhh, if only my husband was in the room when she said that). 

I have been back at work for a little under two weeks and somehow it feels like months.  I am depleted (another pronouncement of my therapist).  The universe continues to fuck with me in a myriad of ways I won't detail here, I'll just say that I sprained an ankle and am trying to prepare for the possibility of a financial crisis in my household.  Fun times ahead.  Can I go back to sleep now?

Speaking of sleep, I apparently need more of it.  On the advice of my therapist I ordered some mediation cds, and let's just say I suck at meditation.  I completely fell asleep during my last attempt.  I found myself snoring, so I wasn't in a particularly "mindful" state. 

And yet, my routine has been re-normalized in a way that's comforting to me because it feels proactive.  Supplements, wheatgrass juice, visits to my acupuncturist (who pulled some miracle treatment on my ankle the other day, and I will only use one word to describe it:  "Bleeding" - yes, as in we're in the year 1540).

I have gained four pounds since my D&E, enough to scare me back into motion.  The problem is, I can't return to my old dance studio yet to teach zumba classes.  The space itself  is a giant trigger for me, I began a new round of weekend classes when I last learned I was pregnant over the summer.  One of my students knew I was pregnant.  I can't even look in the studio mirror without imagining how far along I would be now (17 weeks) or how my tiny bump might appear now ("hey everyone, look how pregnant I am").

What to do.  Well, I can't lie around and complain anymore, so hopefully I can resume teaching a class or two at my office.  The very stressed out women I work with could use a little release, maybe I can help them.  Maybe we can help each other.  It takes a village, y'all. 

with nails bitten to the quick

I scheduled an early December appointment with the RE (the one we met and liked a month ago).  Doing so triggered, like, every manifestation of anxiety (I'm talking shaking and tears) and every muscle memory of panic imaginable.

Is this delusion?  I am still the woman with high FSH and Diminished Ovarian Reserve walking into a fertility clinic in the hopes that they will let me attempt a miracle.  I now have four losses under my belt (one of which was chromosomally normal - perhaps the only "normal" egg I had left).  I am still "statistically unlikely" to find success.  How do you embark on something as physically and emotionally grueling as months of inject-able medications and IVF all the while knowing that there is a high statistical likelihood that it will fail?  Is this the definition of insanity?  Or desperation?  My rational mind supposes that husband and I need to turn over every rock before we give up entirely, particularly the rocks hidden under reproductive technologies that are covered by his insurance plan.  But my rational mind also sees the danger in the whole production.  Can you really emotionally detatch yourself from the reproductive process?  I ask this speaking as the woman who tried to emotionally detatch herself from a pregnancy for 11 weeks.  That worked out well. (snark).

Something to discuss with the therapist tomorrow.  Yay therapy.

Affirmation of the Day

"If you're going through hell, keep going."
Winston Churchill

Proactive

I start back at work on Monday.  I have mixed feelings enough about returning to work after a weekend, let alone after a week of recuperation.  My job is stressful.  Satisfying, occasionally fun (because my co-workers rock), but stressful.  As a researcher I am quite literally paid to think for a living.  And the job is time consuming, I often have to bring work home.  Mainly I am hoping I can avoid crying at my desk.  That seems like a good goal.


I have scheduled upcoming acupuncture and therapy appointments. See how proactive I am about healing?  I should pat myself on the head.  My new therapist describes herself as an addition to my health "posse" - a new tool in my "arsenal" for coping.  Hmmm.  Apparently I am such a mess that I need a team behind me. Ponder that for a minute.


I have also started taking vitamins and supplements again....Wait, what?  "Justonemore you fucking nutcase, are you seriously considering trying again for another baby a week after your surgery?" ask my readers.  Well, no, not quite.  See, here's my conundrum: I am not one of the lucky people out there who can stop popping pills and supplements and get miraculously and spontaneously pregnant and cross my fingers that it will work out fine.  I have to look at the cold hard truth about my body and my brain.  Would I be able to function if I suddenly found myself knocked up without a regimen of methylfolate and Co-Q 10 and Vitamin D behind me?  Likely not. 


How can I put this another way...ok, here goes:  I am taking my supplements and prenatals and drinking my wheatgrass again because IF I get pregnant again (which may not be likely, but is certainly possible, considering fertility after miscarriage and my history) - and miscarry (as I would only come to expect right now) I will be less likely to blame myself. 


See, proactive.  My face might as well be next to the word in the dictionary.


My therapist tells me that "what ifs" are poison to me.  What if I do get pregnant?  What if I can't?    My first exercise is to eliminate the what if and trade it for a "so what"......you can see why I am a great candidate for therapy, right?  So much of my stability right now depends on being able to internalize the following sentence:


So what if Niblet is our only child.

The therapist's pronouncements

"You're a fighter."


Umm, ok, if you say so, doc. 


"You have been through trauma."
That's validating.  Apparently I can toss the letters P-T-S-D around. 

Peace

My return to my acupuncturist this morning was like a vision of light.  I am not sure if I ever mentioned before, but I have always felt incredibly lucky to have a practitioner of Chinese Medicine a couple of hundred feet down the street from me who is also trained in Western Medicine as a nurse and public health researcher.  The perspectives that she brings to the table are something of a lucky break for me given my personality and world-view, and I take great comfort in having her in my self-care arsenal.  I will not go into detail, but I will say that for the first time in days I truly feel at peace.  And maybe I feel a glimmer of hope too.

Stuck

Post-Traumatic Stress Disorder.  PTSD.  I have no idea if I have it. I know so many people who like to toss psychoanalysis into casual conversation (was I one of them?) and I am only now fully realizing how lucky someone is when they can use words like this, without a full understanding of their meaning.


I suppose (hope?) I will have the chance "work through" what I will describe now, in therapy.  OK, let's see whether I can do this justice, because words are strangely difficult for me to conjure now:  It's like, my brain is stuck on a continuous loop at a moment in time, like a record with a scratch.  Maybe when veterans return from war their brains are stuck on a moment of gore, of death, of people with limbs or heads blown off.  God have mercy on their souls.  My brain thankfully isn't stuck on something so vicious and gory.  Strangely, it isn't even stuck on my baby.  Here's where I am stuck, like a recording that has looped and never ends unless you turn the whole fucking machine off:


I am lying on the table, in the moments after the sonographer has completed gathering the pictures for the doctor to view.  I am calm, holding my belly.  And waiting.  And waiting.  My baby was waving her arms just minutes before....Does it feel like a long time has passed?  Why hasn't the doctor come into the room?  More minutes pass.  I am trying to recall every bad ultrasound I have ever endured, did I have to wait this long for the doctor to return for those bad ones?  Then the door opens.


Maybe this is what people mean when they say they recall the moments before the car wreck.

Autopilot

I want to throw out to anyone who has been reading my musings, that I am so incredibly thankful to have the support of so many people right now.  I can palpably *feel* the compassion that is being sent our way, and it means more to me than I can express right now.

In the midst of chaos there is routine.  Niblet needs her mother to dress her, feed her, pack her lunches, take her to school, hug her, look over her homework, read to her, hug her more.  Our house needs to be cleaned, our fridge needs food and meals have to be cooked.  I have a job outside of our home that needs attending to, emails that need to be checked (though I have taken days off from work for anyone wondering).  I guess I can say I function on autopilot.

And a new addition to my routine will be therapy.  I can no longer walk this journey without the help of a mental health professional. Perhaps I've needed one all along, I guess I will find out soon, I start in two days.  I only know that nighttime is the worst time.  I am lucky to have a support network of friends and family, I know so many don't.  I am lucky to have the safe space to cry in, safe shoulders to cry on, and the deep understanding from years of losses that I can cry for as long as I need to.  But those hours when I lie down to sleep, after I have tucked Niblet in are the worst.  The absolute worst.  The panic and anxiety attacks are very real, and the turnings of my brain and resulting insomnia make it very difficult to even function on autopilot.  I am out of my depth in dealing with them.  So I call "uncle" - I need help and hopefully will get it.

privacy and few words

I am a mother. My will to protect my family is fierce and primal. 


We have been forced to say goodbye to our precious baby #5.  She has a name - one that I will not likely utter to another living soul for some time. Our grief is just unfathomable. 


And Niblet does not know.

Marriage

My husband is deeply private.  It's part of the reason you will likely never see our pictures or names on this blog (the other part being my desire to protect Niblet's anonymity).

But last night, in a bout of insomnia, I started reading my posts, like a book.  And I realized that I haven't done him justice. Or our marriage really.... I mean, it's implicit that he's there in the background, because honestly, who the fuck could survive these hits without a partner supporting them?  I don't know, but at about 3 am, I felt this compulsion to put down for posterity how it is that I am even functional right now.  And why my decisions involve so much more than just me.  Or Niblet.  Or my husband himself.  We are the sum of our parts.

And now I am stumped for words.  Go figure.  So I will try to draw a picture for my readers as a jumping off point.  I fell in love with and married a guy who is essentially a Viking.  He is physically huge.  Blond.  I am short and brunette (depending on the day).  I am often described as "bubbly" (I know, it's hard to believe from the tone of this blog over the years....that's a post for another day).   I am also an open worrier, a hand-wringer, dramatic. He is stoic and reserved.  To say he is the Yin to my Yang is the worst kind of cliche, but it's true.  I have long believed that we compliment each other in ways that truly do make us better versions of ourselves.

And we produced Niblet.  Like I said, I'll never post a picture, but take my word for it, she is a complete composite of us, and cute as I think we are, she is stunning.  Blond, like her dad, so people are quick to say she looks like him.... and then they look closer and realize, whoa, genetics is a funny thing, she has my eyes, and my smile.  We often can't believe we brought such a miracle into the world.  I'd like to think that every parent thinks about their offspring the way we do.  I think in so many ways, our drive to have another baby - compulsion at times - stems from the pure joy of her.  Who wouldn't want another?

I wasn't alone in my insomnia last night at 2 am.  And while part of me felt absolutely fucking awful that the love of my life was tossing and turning next to me, another part took great comfort in the fact that I wasn't alone in my thoughts and grief.  And while I was frustrated and angry as the clocked ticked on....3....4....5am....I felt hopeful for our lives past this car wreck of a situation.  And that is our marriage.

PSA: Stay off the facebooks

In attempt to grasp at some normalcy in my life, I jumped on facebook today and started scrolling down.  Whoa.  That was pointless.  I paused at a "debate" over the safety of flu vaccine posted by a high school friend.  Then there were the ebola scare stories. I noted the mundane posts you expect of the moms.  One taking her daughter to the Dunkin Donuts. Another laughing at her toddler boys' antics.

This was me once.  Posting the occasional adorable picture of Niblet.  Maybe getting on a soapbox about protecting social security, or low wage workers.

I am beginning to believe that the remainder of my life might be viewed through a new prism:  before the 12 week scan of pregnancy # 5, and after.  The recurrent pregnancy loss that has shaped me and hurt me and supposedly made me stronger wasn't a seismic "event" but a series of small tragedies that weighed down on my very being.  This is different.  Maybe this is what a car wreck feels like.  With a clear before and after. 

I am also spotting.

MoTHerFuckeR

I am not a scientist.  I don't play one on tv.  I had a double major of history and art history in college.  I was a dancer.  I went to law school.  But I instinctively sense that the elegance of our universe is not such that everything is random.

The (few) people who know what my family is facing right now have noted the unfairness of it all.  The random, freakish nature of this experience in my fourth pregnancy since Niblet.

I am exhausted from reading at all hours of the night and morning.  My brain is jumbled.  But in my searching for "answers" to all of this - -  beyond the mere "why the fuck do I have such incredibly sucky luck" - - I found a paper produced by a team of geneticists.  Concerning a correlation between my baby's specific 1:10,000 birth defect and MTHFR.  Specifically, the 677c-->T gene mutation that I carry.  The gene mutation that every single fucking doctor I have ever met with has dismissed as a cause for concern in my reproductive life.  A gene that can impact the methylation process in cell development when a baby is in utero.

The paper suggests using folate supplementation as a way of reducing the risk of such defects.

I feel slightly fucked.

My Double Life

Niblet has no idea what is going on.  I am not showing (much as I freaked a few weeks ago that I was, I'm really not).  She knows mommy has been going to the doctor, and has been feeling sick, but hell, that's nothing unusual in my house for the past 2 years. Husband and I discuss our predicament in hushed tones, after she has fallen asleep.

She is still hopeful for a cat.  A tabby. 

Our mornings this week have been strangely calm.  I say strangely, because Niblet is something of a drama queen who fusses in the morning about everything.  Choosing clothes for school, choosing breakfast, what we pack for lunch.  Usually, it's all very.... loud, for lack of a better word.  This week our mornings have been cuddly and sweet (and she is not a cuddler).  I know I have been trying to grab an extra hug, and extra snuggle every second I can, and I am so thankful that this week she is receptive to them.

I started researching cats (since I've never owned a pet and I am a researcher).  Maine Coons sound really cool.  Affectionate, almost dog-like companions. 

When you discover what hell really is

Hell is learning that your one in ten thousand risk for a serious genetic disorder is ultimately meaningless because your beautiful baby girl - who is waving her arms at you and bouncing around on your 12 week ultrasound scan - is actually suffering from an incomprehensible, possibly fatal, physical abnormality.

Welcome to the blogspot where lightening strikes multiple times.  Where after three miscarriages, including a rare partial molar pregnancy, you should never breathe easily.  You should never make plans to clean the office out to make room for a nursery.  You should never give in and buy that cute striped maternity dress that was on sale at Target for 17 bucks. 

My baby has a giant omphalocele.  Forgive my not linking the word to a frightening website sponsored by Children's Hospital of Boston or Cincinnati.

Should you choose to google it yourself, you will learn it is an incredibly rare (1:5000 if "small", 1:10,000 if "large") deformity, where the baby's organs are growing outside of her abdominal wall.  In our case, the doctor believes that at a minimum, the omphalocele is encompassing her stomach and bowels.  When you google this, you will learn that it can be surgically corrected with some decent outcomes providing that there are no other abnormalities or chromosomal abnormalities. However, the larger it is the poorer the prognosis is, and the prognosis is very poor if accompanied with an additional diagnosis such as Trisomy 18.

I was immediately referred to more genetic counseling, as well as a CVS, which was performed today.  The CVS was the least painful procedure of my day, crampy and frightening and uncomfortable as it was.  It was concrete.  Insert the speculum.  Insert the catheter.  Insert the needle.  Extract my baby's sample, enough to send off to two different labs. The first lab will be a rapid result that confirms or rules out T13, T18 or T21.   One to two weeks from now I will learn the results of the second sample, sent for a microarray to test for every genetic disorder under the sun.

Here are the not-so-comforting next steps, in a flow chart sort of form.

1.  Rapid CVS results.  If positive for a trisomy, we are looking at an essentially fatal diagnosis.  If negative, proceed to #2.

2. Microarray.  See above.  If negative, we get another scan.  And mull the fact that there is a chance that there is a defect that can't be detected by microarray.

3.  Anatomy scan.  This is where the world becomes even more murky and awful.  The extent of the severity of this abnormality can't be fully determined until the baby is larger.  There is a large chance that she could have additional congenital heart problems that would go undetectable until a fetal echo-cardiogram is possible, at 20 weeks.  We would need to meet a pediatric surgeon to tell us what we are really dealing with.  The outcome range is anything from a baby that spends months in the NICU and has difficulties eating and breathing, to a child that requires a lifetime on a ventilator.  Babies with this defect often have small, immature lungs, and are at huge risk for grave pulmonary problems.  Not to mention sepsis.  And inability to thrive because they can't eat.

20 weeks by the way is our hospital's limit for termination for poor prognosis.

My brain is fuzzy right now.  I can't remember whether I ever put down on this blog that my prayer throughout this pregnancy was specifically, "God/Universe/Insert big picture: Give me the strength to handle whatever comes my way."  I would like to add an addendum to this prayer:  please universe, if you have any fucking mercy at all, steer me to answers sooner rather than later. 

update: panorama screen

My Panorama screen results are in.  I am "very low statistical risk" for any trisomies or triploidies. The screen indicates I am likely carrying a genetically normal girl.

High Anxiety

Today's title happens to be the name of one of my favorite Mel Brooks movies.  I need a laugh.  And I need a laugh because I am crazed and jangly with nerves and anxiety.

Sometime this week, assuming there was enough fetal DNA to extract in my blood sample, and assuming there were no other unforeseen lab errors, I will learn the likely fate of this pregnancy.  My 11-week fetus is the size of a lime.  That's a pretty significant-sized fruit, right?  Every day I become more and more accustomed to being pregnant, grabbing my belly, unwittingly basking in the love I feel for this growing life inside of me.  There has been so much deja vu this go around - harkening back to my first trimester with Niblet - which makes the prospect of learning a poor outcome just horrifying.

I am also *just* beginning to show. Husband and I attended a rather fancy dinner party thrown by my employer.  When we got home that night, he says, "I think you're showing" - Ummm, you couldn't mention this before I chose the dress???  Sure enough, I saw a photo of myself tagged on facebook, and yup, much to my dismay I do look kinda knocked up.  "Maybe I just looked a little chunky?"  I asked Husband.  Nope, being a dance instructor with ordinarily decent abs, I apparently look like someone with a bump.  For contrast, I was able to hide Niblet from the world until I was maybe 5 months along. 

When I am not literally passing out from exhaustion (I suffer from what I call "the sleepies" just as I did with Niblet at this stage in her development), I try to throw myself into work and zumba.  Anything to avoid turning over possible conversations in my mind when the genetic counselor calls.

"I have bad news" the imaginary call begins.... and I envision scrambling to cancel meetings in order to schedule an emergency CVS procedure to confirm the Panorama test results...

Well, I have an OB. And a living Kumquat*

Being me, I had steeled myself for a meh appointment.  Perhaps Dr. H would be *okay* - maybe she'd listen to me, but maybe she'd push back on my being concerned about MTHFR, and incompetent cervix, and my generally waiting to fall into a cavern of doom.

Wow, I love being wrong (sometimes).  Dr. H met with me for a full hour.  We talked in detail about my convoluted history (and she was rather impressed with my surgery/miscarriage/event date recall abilities, thank you very much).  She asked me about my first childbirth.  She asked me about my daughter.  She smiled and laughed and joked and commiserated about breastfeeding around male colleagues, and was by every measure a normal woman (in other words, I don't think she'd be cracking jokes at my D&C the way my first OB did back in 2012). 

She performed a full exam and then proceeded to move on to the doppler.  And boy, was she worried along with me when it took her a minute to find a heartbeat on this little kumquat.  "I really hope we find this, I would hate to send you out of here in a panic," she said. "I would just beg you for a requisition for an ultrasound," I responded.  "And I would write it for you," she replied.

But finally (!) there it was, the sound of galloping horses.  170bpm.  We both smiled and breathed again.  I noted while lying on the table that the only way I can handle this pregnancy is to take it week by week, to get through each benchmark and live to see another day and think about the next week.  She nodded and smiled and said that was the right approach. 

The rest of the visit was a discussion about my next steps:  The Panorama Screen, the CVS is there's a problem with it, the nuchal translucency scan, and then I enter the second trimester.  No, I'm not crazy if I still want to top off the panorama with an amnio, and the doctors who perform amnio at this hospital ONLY perform amnios, so they are the best.  No, I am not crazy to want to get my cervical length checks started a little earlier, we can start at 16 weeks. Yes, I should absolutely keep teaching zumba classes.

And then the moment when I think I knew I would be the wandering patient no longer:  the MTHFR discussion.  Dr. H was fine with my supplementing with a baby aspirin.  My manner of speaking (I can pull lawyerly authority out of my ass when necessary) apparently convinced her I wasn't a wackjob pulling insanity off of the interwebs (ha!), and she believed that my supplementing with the super-disgusting methylated natural vitamins was reasonable. So much so, that she plans to do a little more research on my homozygous MTHFR mutation AND plans on asking an MFM she knows whether she has any thoughts.  And the MFM she is going to talk to?  YES, the same woman whose office I attempted to call a few weeks ago.  How awesome is that?

We live to see another week.

*According to the exotic fruit loving minds over at babycenter, at 10 weeks pregnant "Your baby now weighs less than a quarter of an ounce and is a little over 1 inch long from head to bottom," and "is the size of a Kumquat."  And fuck if I didn't have to go and look up what a kumquat actually looked like.

10 weeks

Yesterday I handed over more vials of blood for the Panorama screen. Now I am in waiting hell for the next 1-3 weeks.

(Hmmm, is it just me or is there too much hell in pregnancy?  Beta Hell.... Screening Hell.... Waiting Hell....)

Last night I had some abdominal cramping, went upstairs to lie in bed, and just stretched there, wondering, "Whoa, is this how it all will end?" 

When you google "abdominal cramps at 10 weeks pregnant" you will get a whole lot of hits and that will serve to calm you a little.  Because abdominal cramps are apparently quite common at this stage, particularly after multiple pregnancies.  Supposedly my uterus is stretching and the fetus is in one of its rapid development stages.  Every WebMD-ish site out there will note that unless the cramping is "rhythmic" and accompanied with bleeding, I should not worry.  These cramps were the opposite of Funkadelic - more the occasional odd stabby pain on one side which subsided to a dull ache - which felt a whole lot like menstrual cramps - and then disappeared into the night. 

Tomorrow I go in for my first official OB appointment, and first face-to-face meeting with Dr. H.  Man, I really hope I like her, because I am so sick of wandering around this town with my stack of medical history, looking for doctors. Not to mention, if we discover a problem on my expected doppler scan or ultrasound, well....let's just say that I have yet to be in the company of a doctor who offered much comfort during those scans in the past.

Resource update coming soon.....

Just an FYI - In the interest of being of actual help to someone, I plan on adding a few more additions to this blog, including "Resource" pages for both Asherman's Syndrome and Molar Pregnancy.  I am not a doctor (because we all know the Juris Doctor doesn't count), but I would like to try to provide some FAQs for those poor souls who may have wandered over into the rather unscientific ramblings of my brain and could use the information.  Plus it will give me something tangible to focus on, and prevent me from indulging into to much navel-gazing.... well, that was an unintentional pun.

The beginning of the end of the beginning

I sit here at a little over 9 weeks along (9+2 maybe?).  I visited not one but two doctors yesterday, expecting both appointments to be filled with angst, and finding myself pleasantly surprised at the lack of angst-i-ness on display.

Dr #1 was Dr. K, the RE I had made an appointment to see way back in June before I found myself surprisingly knocked up.  This you may recall, was the Doc who treats high FSH-patients, many of whom are also kicked to the curb by the same IVF-clinic that unceremoniously kicked me to the curb.  Dr. K wanted me to keep my appointment, a) to offer me an ultrasound to calm my fears, and b)  because she too recognizes it's good to have a Plan B if this one doesn't make it.  An RE-in-training, Dr. W, sat in on our appointment (this clinic is affiliated with a large nationally recognized teaching hospital).

Dr. K, the warmest yet most competence-exuding RE I have ever had the pleasure of meeting (since the great Dr. Isaacson in Boston) gave me so many happy tinglies. She was an older woman, and one word that came to mind when talking with her was "gravitas."  Husband himself remarked that he felt like we would be in good hands with her if we needed her services (as opposed to Dr. H, aka "Dr. Cuddles," the scary woman who told him he should drop a few pounds).

I will cut to the chase:  Yesterday morning we saw a moving baby, this time a slightly larger blob, with a clearly defined head, torso, umbilical cord and a fast flickering heartbeat on the ultrasound monitor. Dr. K then looked at Dr. W, the baby RE in training, and said "Do not ever think that a woman with a FSH of 18 can't get pregnant." She then looked at me and added, "this is an important lesson for Dr. W to see.  I am happy to have you here today."

In fact, Dr. K explained to me that FSH is only indicative of egg reserve for IVF purposes.  High FSH would indicate that we wouldn't capture many eggs at retrieval, but offers no insight on to the quality of my eggs. And clearly I still have eggs in there.  "It's all a roll of the dice" as to whether any pregnancy of mine would succeed.  It was irresponsible for a previous doctor to suggest to me that I would never have a healthy baby with my own eggs, because that simply wasn't true.  In fact, I ever want to proceed with IVF at this fertiility clinic, they will absolutely treat me.... But for now, seeing a moving baby at this stage "precipitously drops" my risk of miscarriage.  And furthermore, in Dr. K's view, I am not a high-risk pregnancy.  My cervix should hold, though she wouldn't discourage early checks by my OB.  My MTHFR mutation does not warrant lovenox shots since my homocysteine levels are normal.  And so off she sent me, to see my OB next week, with a warm wish for me to never have to walk into her office again.

My next appointment was with a genetic counselor.  This one had me tied up in knots as well, because these are the people who say awful things about your age and statistical likelihood of having abnormal babies.  Well, again, yesterday was the day for pleasant surprises.  In fact, this nice young woman with two kids of her own did not hand me any stats. "I think you guys have had really sucky luck" she refreshingly said to Husband and I.  "I know it's been a really long road for you to get here, and I know you're nervous," she continued.  The long story short:  we have had three very random chromosomal losses but neither of us are carriers of anything.  So moved from a conversation about risk to a conversation about next steps.  Here's the plan:

At the end of the week I will take a blood screen, an amazing new tool in the genetics world that is offered to elderly mothers like myself.  The version of the screen I am taking is called the Panorama Test. It's kind of astounding really, because a lab is able to draw out the fetal cells in your blood and test them for downs, other trisomies and triploidies.  It has a 99% accuracy rate and will hopefully inform us that I am carrying a genetically healthy baby.  IF the test comes back with a positive (and there is still apparently a teeny-tiny chance that it could come back with a false positive) then I would have a CVS immediately afterwards.  If not, I could sit tight until 16 weeks, and top off my reassurance with an amnio if I choose (amnio is reportedly far safer than CVS, which does carry a small but real risk of miscarriage).  I will have the test performed around 9 weeks 4 days, and the results will come back 1-2 weeks later.  I have also scheduled a 12 week nuchal translucency scan to determine if there are any other potential defects we need to be aware of (e.g. heart defects).

The bottom line, is this:  assuming this baby continues to grow and thrive, I will know in about 3 weeks time, whether I need to start planning for maternity leave.  Whether we need to clear out our office to create a new bedroom.  Whether I can breathe again.

Pregnancy, continued.

Somewhere in the 8 week range (+2  or 3 days depending on the dating method).  Yesterday I attended a work-strategy meeting at a satellite office, far far away, catered with sandwiches and sides.  So what did this idiot do?  Oh, lookee here, pickles.  Great!  That's sure to go well.  A tuna sandwich (don't judge!), two bags of chips, two cups of lemonade and five pickles later I was going to cry in public.  My stomach was in knots. Sitting on a commuter train to return home I wondered if I was losing a fourth baby in such a public place.  Sure, technically anyone would be in an awful lot of pain after snarfing down such a lunch, but well, you know, this is me after all.  Eventually I made it home, safe and sound and according to my husband, looking fairly green.  I am happy to report that this morning a little ginger ale has made the world a better place.

In the meantime I am waiting for my OB, Dr. H to call me with a next step.  You know, I did actually try and reach out to that MFM last week but unfortunately, that didn't go so well.  As in, I couldn't even get my call past the fucking reception desk to schedule a consultation appointment. The lines of this practice were completely jammed - I would get put on hold and then I kept getting disconnected. Eventually, after about 15 minutes of waiting I wound up on the hospital switchboard, and the operator said "Oh, yeah, I will try to reconnect you but I warn you, they're having a lot of phone traffic." I got reconnected and then the phone just rang unanswered ten times.  So much for that plan.  While I know rationally that I should try to call again, this did not provide a good omen about this office.  I had flashbacks to the cluster-fuck that was my first OB's office (the nice people who gave me the wrong appointment time for my D&C). I mean, things shouldn't be this hard, right?

I've been trying so hard to not get emotionally attached to this pregnancy.  I realize that's an inane statement, it's impossible, I mean at the last check there was a baby growing inside of me... yet, that was a few days ago.  It's so tenuous. Each additional day of nausea, fatigue, and the ridiculous crying from youtube videos because I am a hormonal basket-case, makes this so much harder.  I feel like someone with a personality disorder.  It's like, a sliver of me laughs and works and goes about my day with a little extra joy in my heart and a little extra spring in my step, wondering about the possibilities for the future. Calculating rough benchmarks on the calendar.  Imagining what steps need to be taken to make a new nursery in our home.  Daydreaming about baby names and maternity clothes. Doing all of the things that a "normal" pregnant woman does.

But right next to that sliver of a personality exists another self.... an anxious creepy soul who bites her nails while silently waiting for the bottom to fall out from under her.  "Don't plan," she whispers. "Don't fall in love with this dream.  The dreams have a way of turning into nightmares, you know."

We live to see another day

There is still a living baby inside of my uterus.  Measuring 7 weeks 4 days, with a heart rate of 166bpm.

I have to call that MFM after all.

Hedging Bets.

I am somewhere just past the 7-week mark. I am mainlining ginger-ale.  I am exhausted.  I feel nauseous.  Just the sheer thought of certain foods makes me want to barf. The smallest daily activities -the stairs in my home, walking Niblet to school -  feel like swimming through sand. Actually swimming at our pool felt like swimming through sand.  I have no clue how I survived teaching two zumba classes this past weekend without keeling over in front of my students.

This pregnancy is packing so much more of a wallop on me physically than the last two.  And it will be so much harder to lose if this one goes the way of the last three.

Getting through the day without building up dreams and emotional attachments to whatever has attached itself to the lining of my uterus is...um, challenging.  And I recognize the sheer fucked-up-edness of that sentence. I mean I should be able to use actual words here.  There's a baby inside of me right now.  Last we looked, it had a heartbeat.  My pants are getting tight.  I am actually stressing about what to wear to a wedding in two weeks because if I make it that far, I could be showing by then,  Sweet Jesus. 

Our next scan is on Thursday.  I just don't want to imagine any of the possibilities, they stop me in my tracks.  But I have to steel myself to the possibility that this baby could be dead.  I know that sentence makes many people uncomfortable.  Hell, it makes me uncomfortable.  "Be happy, you're pregnant now" the world screams ("Pregnant until proven otherwise" aka "PUPO" - a popular acronym among ladies who are ttc that I find less than confidence building).  Of course I'm happy.  Absolutely, I am pregnant now.  But ignoring the possibility that this baby could die would do me far more of a disservice.  I have to face this thing with honesty.  Is there are strong chance that after seeing a heartbeat and feeling as sick as I do that I am carrying a healthy baby?  Sure.  But does the possibility remain that I could be in that "small percentage" where the healthy baby is elusive?  Absolutely.  Everything I read suggests that at my age, with my RPL history, I have about 80% odds of carrying a sibling to term for Niblet.  But 20% is nothing to fuck with, and it's certainly not a small percentage.  It's real, and I have to acknowledge that 20% with honesty in order to survive this experience.

My acupuncturist has raised a legitimate question as to whether I should see a high-risk OB or MFM (Maternal Fetal Medicine) specialist.  The fact that my OB didn't have much familiarity with Partial Molar Pregnancies was troubling.  The amount of surgeries my sad little cervix has been through is troubling.  My age and repeat pregnancy loss history is troubling.  Reproductively, I'm a fucking blues song.

Through my vast network of online friends, I have identified a potentially good doctor to call, an MFM recommended to me by a fellow Asherman's, RPL and AMA traveler.   I suppose I'll call and ask to speak with her, or her nurse, and inquire whether my history warrants being under her care....though I'll only even consider it after my scan this week.  Because there may be no reason to.

It's sort of empowering to be able to take your medical care into your hands.  I have met so many women in my online communities, trapped in HMOs, or living in countries with so many wait-lists and restrictions to specialized care.  I should be jumping for joy that under my insurance, I can just call a doc and say "Hey, Doc, should I be your patient?  Can I be your patient?"  (Railing against the human exploitation that is often driven by my country's free market is something of a way of life in my career.  But make no mistake about it, I am incredibly grateful for my access to the kind of specialized care I have come to need on this road.)

And no, I haven't yet cancelled my appointment for September 15th with Dr. K, that supposedly great new RE who doesn't discriminate against High-FSH patients, and would advise me on next fertility steps.  Yes, I'm really hedging my bets on that one. 

Wow.  My next scan is going to be a doozy in terms of life planning, isn't it.

A cure for what ails you

Hell to the yeah.  Ok, so the name isn't terribly inspiring and conjures up images of pet treats.... But how have I been stumbling through life this past week - like a very drunken sailor about on a very rocky boat -  without these?  Shout out to the universe to my acupuncturist for handing me a bag of these little wrapped bits o' goodness.

Fu*kin' A Dolphins

These past few days I have been thinking a lot about self-care, TLC, finding peace.  Thinking about that happy place I wrote about in the month prior to this pregnancy.  Thinking about the pure bliss I felt at the beach, when I didn't have a care in the world.  And wondering if there was a way that I could at least recreate some of that sense-memory.  Because I am cranky, and anxious, and well, very very nauseous this past week.  I have a great many cares in the world, but my monkey brain won't shut down.... and the intensity of everything I am thinking and feeling will cause me to keel over.  None of this is very nurturing to either myself or the flicker in my abdomen.

So last night I set an intention as they say in yoga.  I put Niblet to bed 15 minutes early, and started to pretend to be that woman in the Calgon commerical from the 80s.  I filled a tub with warm water and lavendar bath salts.  And shut my eyes, and fucking sat in there until the water got tepid.

Then I finished my night routine of brushing, flossing and moisturizing immediately afterwards.  I got into my jammies.... and crawled into bed (mind you it is about 8:45pm about now, that's how early it is)....and turned on the soothing sounds of.... dolphins.

You read that right.  Fucking awesome dolphins.

After Niblet was born, my aunt asked what gift I could possibly use?  And my answer was the Brookstone Sound Machine.  This motherfucker would save my teary-assed, milk-laden life.  Before the package arrived in the mail I was resorting to calm Niblet down with the soothing sounds of the hairdryer. By the time this picture was taken, we had already blown out a vacuum.  Distressed babies, you see, seriously need some white noise.  To recreate the soothing sounds of their in-utero experience.  Below is an example of the lengths I would resort to to ease this kid's distress. (Note that she is swaddled within an inch of her life, and also please trust me when I say that I am not pointing a hair dryer *at* her, photo perspective is everything.  Oh, and clearly my daughter's nursery looks more Dickensian baby prison than Pottery Barn catalog, but that is a post for another day).

However, when THIS came in the mail, I no longer needed to document such disturbing images of babies juxtaposed with hairstyling apparatus.

A good friend who borrowed this little bit of magic returned it to me this weekend.  And last night, I decided to give it a whirl.  I set it on "Dolphins" (we went on a dolphin watch boat ride at the beach with some friends, a high point on our vacation), crossed my fingers to find a happy place....and completely passed out.  Cold.

So that worked.

This week I've scheduled a visit to my acupuncturist.  Next week I'll schedule a massage.  Bring on the TLC.

I am trying to find comfort in the nausea (which occasionally leads to vomiting. Huzzah.).  My OB called yesterday to talk next steps.  Another ultrasound to schedule next week.  A refill on my progesterone prescription, because, why the hell not.  "Are you feeling more confident?" she asked, "you had to feel a little better after that scan."  She also noted she was praying for me, which was sort of a nice, albeit awkward touch from a doctor I've never met but who knows that I have the uterus of doom.

No, Dr. H, I'm not quite there on confidence scale, I doubt I ever will be.  But a lavender bath and the sounds of squeaking mammals against a backdrop of gently swishing waves didn't hurt.

Familiarity breeds numb

When I was pregnant with the cancer baby, I felt "off."  Definitely pregnant, once in a while during those 11 weeks, maybe a little queasy.  But I think I've mentioned in the past, I felt a sense of doom somewhere in my gut.  I knew enough pregnant chicks in my life to know that some will feel awful morning sickness, others none, and it would vary with each pregnancy.  But it never felt *right*

The second two losses were notable for my not feeling much at all.  Little if any nausea. Maybe I had to pee a little more.  But as for my daily routine, there was little indication I was knocked up.  And my HCG peaked to only around 6,000 during one of those losses (the trisomy baby).

This go around, well, I am something of a walking stereotype.  Given my high HCG levels, this isn't surprising. I am nauseous in the morning.  I am nauseous in the middle of the night.  I threw up twice yesterday, after eating what I thought was an innocuous bowl of cereal. 

Speaking of which, can I note how fucking hard it is to find cereal - or anything in the store for that matter - these days that isn't fortified with folic acid? 

This week has been reminiscent of my first trimester with Niblet.  I crave peaches and nectarines.  I crave bland foods (huge shout out here to the Dunkin' Donuts egg and cheese wake-up wrap -sans bacon - I seem to keep those puppies down).  Right now I am boiling potatoes on the stove like the good Polish Jew my ancestral DNA has made me.  I crave water over coffee.

And all of this familiar pregnant normalcy is precisely why this will be an anxiety-ridden experience.  Or perhaps, a strangely numb experience is more accurate....Should I lose this little bean, it will be the ultimate mind-fuck.  I am just hella pregnant right now, at only about 6 weeks along, and even my Husband is noting how similar this pregnancy is to the one successful one I carried to term.  But my own personal experiences, and my years on the boards, tell me that I can't feel complacent.  I certainly would be foolish to start imagining the future.  There will no thinking about decorating a nursery or baby names for me, not for some time.  Pregnancies can and do end in the blink of the eye.  Maybe not for most women.  But I am unfortunately in a sad little sisterhood that trusts in the cozy security blanket low expectations.  I keep hearing the ominous words of REs, telling me that my only chances for successfully carrying a healthy baby were with donated eggs of a much younger woman.  Nope, those words don't serve to stave off the anxiety.

However, the rational author of this blog understands that those REs are often selling women the fear that they will fail to ever carry natural pregnancy. The hefty price-tag of a donor egg cycle stands in stark relief to the price of vitamins and supplements.  High-tech reproduction is their bread and butter after all....Butter.  That's right.  I have to go soften some for the giant bowl of potatoes I am about to snarf down.

"Today is a new day"

Words of my husband before our appointment.  He also says he could see my legs shaking under the blanket on the ultrasound table. 


We were hoping to see a gestational sac in my uterus, maybe a yolk sac and if we were lucky with an experienced tech, maybe a fetal pole. Dr. H warned me again not to place too much merit in what I didn't see today.


Though my last menstrual period dates me at 5 weeks 3 days today, the tech is dating me at just shy of 6 weeks along.


There was a flicker.  Too small for the machine to register any accurate bpm, but visible.


I should probably start eating healthy foods again.  As a precaution.

"You're going to combust"

"You can't keep this up.  You're going to combust" - wise words spoken by my husband today, when I relayed the latest to him.


Today I reached out to Dr. G, the only molar pregnancy expert in the U.S. to get his thoughts on protocol for me.  I was informed that I would only really be out of the woods after a 10-week ultrasound to rule out another partial molar pregnancy.  Uh, ok.


Then I (finally) spoke with Dr. H, my OB.  She requested that I get an ultrasound this week solely to rule out the possibility of an ectopic pregnancy.  "Your HCG is strong and your progesterone is as well.  All I want to see is that there is a gestational sac in your uterus, a radiologist won't necessarily find a fetus in there so early."


"But Dr. H," I said, "didn't my HCG level raise your eyebrows?  It's awfully high."


"My eyebrows stayed in place," she responded. "Your numbers weren't the highest I have seen, there's a very wide range for HCG, it can be all over the map."


Huhm.


So today I gave more blood, and tomorrow husband and I will be together at an ultrasound - for the first time since Niblet's discovery at 10 weeks.  I have been going to these alone for many moons, and it is without any hyperbole at all that I say the trans-vaginal ultrasound is a terrifying and traumatizing experience for me.  I haven't had a good one in years.


But back to the title of this post.... I see that Husband is right.  There is absolutely NOTHING I can do if this pregnancy is a recurrence of a partial mole or some other rare freak of nature.  And it's not like I would be smiling all easy-peasy at the 10 week mark anyways.  Hell, if I make it past that, the pregnancy will continue to be a white-knuckle experience.  There's no getting around it.


On my drive home today from Quest Diagnostics, I put in my zumba playlist.  Amazing how a little ass-shaking music took me out of my head.  I have to find a way to recreate the happy place I found on my beach vacation, despite neither having any more vacation nor beach.  Maybe I need to order a pregnancy yoga DVD now.  Maybe I need to get a massage, or sit in a lavender bath and pretend I am in a spa.  But I have to do something other than peruse the internet for horror stories, because fuck, if I feel this anxious at only 5 weeks, I honestly won't make it to 10 with a shred of sanity.

Someone talk me off the edge

Ok, friends, I am on a goddamn cliff right now.


My first betas are in.  Exactly 5 weeks after my LMP.  21067.  Yes, you read that right, there are 5 numbers in there.


The optimistic chicks on boards who see such a number might say, wow, looks like the betas you see for multiples!  Yay!


Unfortunately I have seen super-high betas before folks.  During my first miscarriage, the partial molar pregnancy. 


Any statisticians out there who can calculate the odds of experiencing a partial molar pregnancy (1:1500), Asherman's syndrome, three consecutive miscarriages (this will happen to less than 1% of pregnant women y'all), AND then a second molar?  It is said that the odds for a repeat mole are about 1-2 in 100.


Let the true panic begin.


Fuck me.

When life throws you nails....

With little fanfare (hell, not even an actual conversation with the OB) I gave my first vials of blood for this pregnancy to the lab yesterday afternoon.  And then later that evening proceeded to completely lose it.


Of course last night I made the mistake I often do in this situation (gah, there's a fucked up word, often).  I spent way too much time on the boards, and on the interwebs.  Haven't I learned?  Shouldn't I know better?


The symptom watch.  The failing-to-find-a-symptom watch.  The fatigue - is it because I am pregnant or because living in a constant state of anxiety would exhaust anyone? 


Life's tiniest setbacks are spinning my emotions out of control.  The leak in my tire that caused me to burst into tears on Sunday afternoon.  Then yesterday, the nail discovered in that tire by the mechanic who didn't have my tire in stock.  Of course he didn't.  So today, instead of lying around the pool with Niblet enjoying the sunshine I will be driving my sagging car to the mechanic.  Because life throws nails at my tires.


And poor Niblet.  "Why are you crying Mommy?"
And poor Husband. "Why did you tell Daddy he wasn't helping you, Mommy?"


The kind-good-not-sociopathic part of me is thrilled that most women will never ever experience the living torture that is recurrent pregnancy loss.  The anxious-fraying-at-the-edges part of me hates feeling so alone.  Wallowing in the crazy.  Isolated and freakish.


I miss the beach.

Here we go again.

I am still pregnant.  I should be 5 weeks pregnant tomorrow.  On this particular go-around, I wake up feeling queasy and nauseous, and I am exhausted.




Reality is smacking me in the face now that I have returned home from days of beach vacationing.  About 5 days ago, when I was still in the 4 week arena , a pricey Clear Blue digital test informed me I was "3+ weeks pregnant" (the highest level it detects).  This presented quite the shock.  According to the instructions, this means I had the amount of HCG present in my urine to signify 3 weeks had passed since ovulation - a doctor could date my pregnancy as 5+ weeks.  Ummm, ok.  I guess this little cluster is overachieving.  As of this morning, I am still "3+ weeks" on the CB digital.




I have to request betas now. Which means I have to call a doctor.  On my acupuncturist's advice I am going to the nice OBGYN who oversaw my second loss.  We spoke on the phone a few times last year, though never met face to face.  I am hoping that the numbers are high enough by the end of the week to schedule an ultrasound.  High enough to warrant a look-see  to rule out an ectopic pregnancy.




My mind is starting to spin with the potential next steps.  The betas.  Then the weekly ultrasounds. Then more blood labs and nuchal translucency test.  IF we even make it to a heartbeat I know that there is so much more sheer awfulness that awaits that I have yet to experience. The possible chorionic villus sampling (CVS). The possible amnio if I even made it that far (the second trimester might as well be a decade from now, it is so hard to wrap my brain around).  And for anyone wondering, no, I won't proceed in a pregnancy without this invasive testing.  Not given all of the chromosomally abnormal pregnancies I have carried thus far.  I have to trust the fact that I will be seen by doctors at a large urban hospital where high-risk pregnant ladies like myself gravitate to, doctors who perform these procedures routinely, so the miscarriage risks from these procedures will be lower.  If I even make it that far.  And right now, aside from the "if" statements, I can't even bring my brain there.




Case in point: Last night I spent maybe 30 minutes obsessing about what would happen if I needed a CVS because I have a highly retroverted (tilted) uterus.  OMG, just google "CVS and tilted uterus" and you will see why one should never google this.




It's a terrible feeling, this feeling of doom that translates to numb.  I am most fucking angry at the doctors of a particular clinic who told me that it was highly unlikely that I would ever carry a healthy baby to term and planting a toxic seed of doubt in my head.  Even if it's true, it's a horrible weight to throw on a woman who still apparently gets knocked up on a regular basis.
I am angry at myself for not being able to just give up these hopes for another baby.  And then I shift that anger into a different direction, still self-inflicted, but now angry for allowing the feelings of hopelessness to creep in.


There has to be meaning to all of this.


I just need a little luck.  A little positive roll of the genetic dice.  "Healthy babies are born every day to forty-year old women," I reason to myself.  "No, not to you," a snide little voice says. The sheer whiplash between hope and doubt and fear is exhausting.




Pregnancy is a crushing weight. 

And nary an emotion in sight

Today I am 13 DPO.  My period is supposed to arrive tomorrow.  I will not be getting a period, at least not yet.

I am well aware that some women are only first getting faint lines now, and yet, will move on to wonderful healthy pregnancies without a care in the world.  I can imagine these women, perhaps waiving their sticks around with joy, grinning from ear to ear....

Such a sight has not been seen in my house, not in years.  (And wow, I have been in *this* place for years).  Now is not the time for waiving sticks with glee.

This is my 5th pregnancy.  

"Here's the latest," I say in a serious voice, as I show my husband, presenting the stick for his viewing.
"Yes," he says, stoic, with barely an emotion discernible on his face. "That is a pretty dark line this time."

We have been here.  We know how fleeting this can be. We live the Groundhog Day of lines on a stick. I am dutiful  in my regimen, taking prenatals, vitamin d, baby aspirin, and as of today - because why the hell not - progesterone pills.  I found them in the medicine cabinet from Pregnancy # 3 (or Miscarriage #2).  If this little cluster of cells fails to thrive, I will not be left with any guilt or doubts. 

And it begins

I am 10 DPO.  I still have a nice solid line when I take a HPT.  I am still pregnant.

I am also, right now, spotting.  It is brownish blood, only visible when I wipe.  I am also cramping, just a little, they are slightly dullish, washed out cramps that are smack in the middle of my uterus.  All of this of course can signify everything from normal to the specter of doom.

When you google "early pregnancy brown spotting" you will get a million hits.  Such spotting is attributable to everything from your hormones (normal), to implantation bleeding (rare but normal), to the precurser of a miscarriage or ectopic pregnancy (specter of doom).  And this is why the internet can be a terrible thing.  For every "I spotted my whole first trimester and my beautiful little girl is sitting on my lap as I type this now" you can read there is also an "I spotted and it resulted in a miscarriage" or worse, "I spotted and it resulted in the loss of one of my tubes" anecdote.

There is a silver lining - albeit a twisted silver lining - in this development. If this turns out to be a chemical pregnancy, this would by far be the "easiest" loss I will ever endure.  No surgeries.  No protracted waiting.  I am all of three weeks pregnant, there's not a whole lot in there.  This little cluster of cells will go gentle into that good night.*  I will dutifully return to my regimen of supplements, to hopefully avoid the loss of cluster #5.

*I love me some Dylan Thomas.

To Beta or not to Beta

So, here I am, 9DPO, and still pregnant.

(A funny thing about that - a well-meaning friend who knows my tangled history said to me the yesterday, "Justonemore, how can you be pregnant if you haven't actually missed a period?"  Ahhh, to live in such a blissfully ignorant state of how early the female body can start producing HCG immediately after an egg has been fertilized.  She's clearly never bought a 50-pack of Wondfos online.  And oh, yeah, fuck you Wondfos).

Anyways, I am pregnant right now and an inevitable question arises:  Do I call a doctor to request beta labs to be drawn to track my HCG?

This question is surprisingly challenging.  First off, I am leaving for a much-anticipated BEACH VACATION this Saturday.  "Quest Diagnostics" and "BEACH VACATION" are really never words that should be conjured up in the same sentence. 

Furthermore, this week is pretty jammed packed for me work and meeting-wise, seeing as I'm all, you know, BEACH VACATION.  Running to labs for blood-draws three times would be near impossible.

To top it off, I wouldn't even know which fucking doctor to call.  Do I contact Shady Grove?  Dr B suggested I have them track a pregnancy early on with them because my hinky tube puts me at a 10% risk for ectopic.  But that sounds awful.  Like, "Hey doctors who believe that my chances of having a healthy live baby with my own eggs are nonexistent.  Why don't you track this pregnancy for me to its doom?  Because I think words of negativity are exactly what I need right now."  A call to Dr. Cuddles would produce similar results, I think, plus the whole "I am abandoning you for another practice" angle.

Then there's Dr. K with the new practice.  My appointment with her is scheduled for September 15th.  I could call them right now and beg for them to take me on as a patient earlier, but I feel like that's premature.  Because, I am what, three weeks pregnant?  If I can cram three betas in this week they won't tell me very much.  Surely they will be very very low.  And if they don't double, I will surely be very very depressed on my beach vacation.

When I return from BEACH VACATION, if I am still pregnant, I will be exactly 5 weeks pregnant.  Early enough to start betas and catch a possible ectopic if they aren't doubling, but also late enough to see SOMETHING on an ultrasound.  And I also get a little time to call Dr. K's office and try to get in earlier.  If they say no, I can always try the nice OBGYN who oversaw my second miscarriage, the rare trisomy pregnancy of 2013.

This particular BFP is throwing me for a loop as far as protocols go.  I've already been on my methyl B vitamins to address my MTHFR.  But I am also going to pre-emptively put myself on some baby aspirin to try to prevent clotting.  Lord knows, it's never been a factor in any of my other losses, but the MTHFR diagnosis has me freaked out about it.  Dr. B noted that despite the scary MTHFR mutation I carry, she wouldn't have put me on lovenox shots, and I suspect Dr. Cuddles wouldn't either, so I can't worry about the "what-if I need lovenox?" issue right now.  There are no MTHFR specialists anywhere in my area. And I'm already a "habitual aborter" in the medical world.  With three miscarriages under my belt I have to throw a little caution to the wind here.

Not to mention, this could end up a chemical pregnancy and I could get a period before the week is out.  Rendering this whole blog post moot.

Best laid plans....

Early morning conversation with Husband, who is sleeping.  Conversation rendered only slightly more absurd because I am wearing zumba pants:

Me:  So, I just peed on a Wondfo and there's a faint line I am pregnant.
Husband:  zzzzzz grumble zzzzz grumble..... Oh.
Me:  I am only 7DPO.  This is insane.  I only even tested because I felt cramping and a little nauseous.
Husband:  Cool.
Me:  Cool????
Husband:  zzzzzz

I was supposed to be on supplements for three months to try to get my crappy eggs a little more mitochondrial energy, darnit. Everything you will ever read says it takes three months to show an impact, and I have been on this particular cocktail for a little less than two.

Not to mention we really only did the deed once during my fertile time.

For someone whom most doctors have written off as statistically unlikely to ever have a baby with her own eggs, I get pregnant an awful fucking lot.

Now what?

(Update:  I peed on another stick.  The line is no longer faint.  I am completely knocked up right now).

"It's time for the EGG ROLL!"

 I recently purchased THIS:

Doesn't the cover - cased only in eco-friendly cardboard with minimal thus eco-friendly packaging - calm you?

The Amazon reviews on this 2-DVD set intrigued me, and I couldn't help but wonder whether this was the modern day version of snake-oil salesmanship:

"I was declared completely infertile by not one, but two fertility doctors. My FSH is 19 and AT BEST, they said I had a 3 to 5 percent chance on my own. They told me a donor egg was the only way to go and likened my ability of getting pregnant to a "false glimmer of hope"

"This is a wonderful DVD that really works to keep your cycle in balance. At 42, I got pregnant naturally by using this DVD everyday for a few months."

"My husband and doctor are more inclined to think it is a coincidence, but the fact remains that we had been trying to get pregnant for a year, and after doing this DVD every day for 2 months, I got pregnant. I decided to try yoga before moving on to any medical fertility treatments, and I did the DVD pretty faithfully for 2 months (I missed a few days here and there). I was still doing the video in the 3rd month until we got a positive pregnancy test."

These DVDs are highly touted on a few of the support boards I frequent. I was most intrigued by the fact that there is a separate set of exercises for each phase of your menstrual cycle.  The guy who put it together, Brandon Horn, has something of a name for himself in the world of traditional Chinese medicine and fertility. Plus he's operating out of LA (and I often think of California as ground zero for the confluence of aging zen mamas - as opposed to the rust-belt city where I now reside and view as mostly ground zero for the really tired and pissed-off mamas).    And his clinic is called the Lotus Center for Integrative Medicine and  isn't that a pretty name? "What the hell," I figured, "it's not like adding yoga to my summer of wellness can hurt." 

So, I entered into this thing totally prepared to write some snarky comments about hokey hippy-dippy yoga videos produced at Lotus Centers.  And yet, I honestly can't. Because these videos are actually (gulp) really good.

Niblet has some basic biological understanding of reproduction including the part about how the sperm has to meet the egg.  Because I won't lie to her, she also understands that some of my diet and activities are geared towards making my body healthy enough to carry a baby.  So she watched in rapt attention when I cleared a space on our living room floor and started the video on Monday night (in my Luteal Phase, if anyone's wondering).  On the screen were three ridiculously calm and only slightly crunchy looking yoga chicks (one of whom is Wendy Yu - herself a renowned TCM practitioner who helps women with fertility issues). They walked me through a series of breathing, movement and posses which at my stage in the cycle, are designed to create an optimal, warm, cozy environment for a fertilized egg to implant (I'm paraphrasing here, but this is what the voice-over was telling me).  As someone who used to regularly take yoga classes but fell off the wagon, I would describe the actual yoga itself as "yoga-lite"  - no need to be a human pretzel, or stand on your head.  This is more akin to hatha yoga flow for the yogi readers out there.  I was coma- relaxed when I was done with the 30 minute set.

Were there some mildly goofy and somewhat distracting drumbeats accompanying the routine?  Sure.  And the video is not slick at all, the studio space they're in is small and the production value is well, pretty minimal looking.  But I watched the introduction given by Brandon Horn - wearing a white jacket in order to optimize your trust of him - describing the whole point of the endeavor. And I have to say, I was pretty impressed with what I was hearing.  For one example, some of the poses in my luteal phase segment are designed to help move the fertilized egg along the fallopian tube and prevent things like ectopic pregnancies.  I think Niblet identified one of these movements herself with this rolling movement she now calls "THE EGGROLL!" where you lie on your back, grab your knees, and roll back and forth along your spine.  Living with a hinky tube myself, I appreciate this kind of reproductive forethought.

I'll be honest: If I can ever get successfully knocked up again, I am not sure I'll be able to attribute these DVDs or the specific diet changes or the ridonkulous cocktail of supplement to that success.  All of my snark aside, I really do believe in holistic approaches to mind and body wellness.  But there's also some peace to be had egg rolling with my kid and might I add the $39.99 I shelled out is a hell of a lot cheaper than going to actual classes or finding a TCM practitioner to guide me through specific routines.  So thumbs up y'all!