Wednesday, October 29, 2014

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.

Monday, October 27, 2014

Saturday, October 25, 2014

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.

Friday, October 24, 2014

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. 

Thursday, October 23, 2014

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.

Wednesday, October 22, 2014

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.

Tuesday, October 21, 2014

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.

Saturday, October 18, 2014

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.

Tuesday, October 14, 2014

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.

Monday, October 13, 2014

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.

Saturday, October 11, 2014

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.

Thursday, October 9, 2014

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. 

Tuesday, October 7, 2014

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, deformity.

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. 


Wednesday, October 1, 2014

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.