I’ve not been able to write as much lately. It isn’t for lack of material though… The last couple of weeks since my first trip to the Maternity Trauma Center, have been eventful, though not in any earth-shattering sort of way… Not to an outsider, at least. But my high level of internal turmoil has me paralyzed, frozen, it seems. By fear and anxiety. Sure there have been moments of hope and reprieve, but these seem so fleeting as of late.
WARNING – I’m aware that this post will expose me for the hot mess that I am… It’s pretty much one big, stream of consciousness feeling dump worthy of clogging some kind of cyber toilet. (I’m hoping my next post can be more positive or humorous or something rather than making me sound like an explosive ball of stress, but I kind of am though.)
I know by candidly sharing so many of my difficulties I risk sounding whiny and ungrateful. So I’ll first emphasize that not only am I aware I chose this post-loss path, I also realize that I’m lucky to be here, 32 weeks pregnant. And I’m thankful, and I wouldn’t trade it. But none of this changes the fact that I’m finding things very challenging.
Some of my struggles, I think, relate to the time of year more than my pregnancy itself. May and June and July include so many milestones in such quick succession, milestones that bring back such vivid memories of one year ago today… Mother’s Day, Memorial Day, Father’s Day, Fourth of July – markers of the last time we were normal, the last time we were truly happy, the last time we felt (and will possibly ever feel) pure joy without its new constant companion, pain.
And then there’s the milestones looming in the not-so-far-off distance – reaching 32+4 (prior point of loss) with Jay (this Sunday), July 12 (the day we checked into the hospital – the beginning of the end), and July 13 (Matthew’s birthday or anniversary… or angelversary for those who find this term comforting).
And besides being insanely sad and pissed off on Mother’s Day, I worry I’ve cut off many of my emotions related to grief to make room for the fear and anxiety and my intensive medical monitoring and the associated stress that comes with it.
So I don’t know how we’ll acknowledge July 13… Throwing a big party doesn’t seem right. Ignoring it doesn’t seem right either. And it’s on a Wednesday for freak sake. And anything we do will be so much the opposite of how things should be. I doubt I’ll have room to process my feelings appropriately. So they might just hit me later – I could totally crash and burn in some huge, unexpected way.
If I make it to my scheduled delivery date which is still very much subject to change, I have 40ish days to go in this pregnancy. It seems so close, yet so far away. What most terrifies me is the only certainty at this point is that, no matter what, the sun will rise and set 40 times. And at the end of this time period, there will be a conclusion to this part of our story. And though I hope the conclusion is a happy one, and I actually think the conclusion will be a happy one, the thought that it isn’t completely outside the realm of possibilities to experience more devastation never, ever leaves my mind.
So even though I consider much of this “journey” to be torturous, in a way I want to remain suspended in time too. Suspended here in my hour-to-hour, caged-animal-like existence, where I consider my only responsibility to be to keep Jay alive (not that I have full control over this, but I can pretend that I do) – this existence where Jay is, currently, alive.
The last couple of weeks have brought another midnight trip to the Maternity Trauma Center, two impromptu visits to our favorite just-for-fun sonographer, two official cord pathology ultrasounds (and another tomorrow) with maternal fetal medicine (MFM), two amniotic fluid checks, and several non-stress (what a joke, this terminology) tests (NSTs). I find myself at the hospital nearly every day lately, it seems.
For the record, I know how bat shit crazy this all sounds. But I’m choosing to share honestly anyway, because those who’ve been in my shoes understand that there’s no rulebook, and those who follow in my footsteps will need to understand this too. And those who haven’t been in my shoes who find themselves judging me can take their judgment and shove it somewhere. (Like, “Don’t stress, have faith, think positively, cut the excessive monitoring, etc., etc., etc.” are easy things for others to say.)
So most of these visits and tests have been relatively uneventful. But no matter how uneventful they are, we just go right on ahead and make them eventful, because apparently this is what we are going to do… But in our defense, some weird ass shit goes down at nearly EVERY appointment, which doesn’t really bode well when we are already on such high-alert.
Like at one hospital NST appointment, they had a nurse check my fluid levels, which they apparently shouldn’t have done because this particular nurse proceeded to tell me that my placenta had DEFINITELY shifted from anterior to posterior, something she’d “never seen happen with someone this far along.” So I knew what she was saying was scientifically impossible, but she INSISTED on it, so then I wondered if I’d had a partial placental abruption or something. And she also informed us Jay was vertex, but I thought he was breech, so we called our just-for-fun sonographer afterwards and made an emergency appointment, where she confirmed the position change was accurate, but the placenta change was not, but then Jay was wearing his cord like a Vegas stripper wears a feathery boa, which sucked, but this situation’s since resolved itself, which is good.
And at another hospital NST appointment, a different nurse checked my fluid levels and was like, “Oh……….There’s his heartbeat.” And I obsessed for days over the purpose of this long pause.
And then there was yet another fluid check where the nurse turned on the color Doppler per our request to help us ensure the cord wasn’t anywhere near Jay’s neck, and the machine was so antiquated that Mark thought he saw only one vein and one artery instead of the standard one vein and two arteries, so he worried one of the two arteries had spontaneously stopped working, so after our NST we sheepishly requested that they look at this again on a different machine (so embarrassing). And, at first, the MFM working that day looked at us as though we were nuts, but then, out of curiosity, he asked me about Matthew, and I told him his story (while crying almost hysterically), and his eyes filled with tears as he turned to the nurse and instructed her, “Just give them whatever they want.”
And then there’s the NSTs themselves… To me, every fetal heart rate monitor strip looks totally ominous. I worry that accelerations are too high (or too long) and that decelerations are too low (or too long) and that all V and W shapes represent deadly cord compressions. I’ve studied concepts like variable deceleration and mild variability and marked variability and sinusoidal heart patterns and tachycardia and bradycardia, none of which are good. Mostly, my mind will process every strip that prints out, no matter what it says, as “looking like Matthew’s.”
I’ve recently discovered that I have a lot of unresolved anger at the hospital. I don’t blame them for Matthew’s death, as I truly believe that by the time we checked in he was basically dead with a heartbeat, but I have this renewed infuriation that, for hours, everyone reassured us that all was probably well with him… But, I mean, how could they not have known?! I felt NO MOVEMENT for hours, and I repeatedly informed them of this, but not until his heartbeat flatlined did they appear to recognize the severity of the situation, at which point it was like no shit Sherlocks! I’m just so mad.
And it’s difficult for me to trust anyone. Yet, I know I’m not a doctor, so I have to trust someone. It’s a rough predicament.
Jay’s cord continues to look good, which is wonderful, but my latest and greatest stress relates to fluid levels. Over the last couple of weeks my amniotic fluid levels have increased to almost 24 AFI (amniotic fluid index). And above 24 is considered polyhydramnios (too much fluid). Polyhydramnios can be related to gestational diabetes (tested negative), chromosomal abnormalities (tested negative through non-invasive prenatal genetic testing), issues with Jay’s heart or stomach (they’ve looked at both of these things so.many.times, so extremely unlikely), a bigger baby who pees a lot (quite possible), or, get this, NOTHING (most probable perhaps). But it’s stressful, because, per Dr. Google, it’s really fucking scary.
So upon discovering that my levels are approaching borderline polyhydramnios, I proceeded to have a complete meltdown and called my doctor, sobbing. She tried to console me but maybe failed, because I couldn’t even get to work until like noon that day, and this might have been a complete over-reaction, but polyhydramnios seems a bit like some umbilical cord pathology (and like everything else in pregnancy) in that it can be absolutely fine or completely deadly, so yeah…
And then just yesterday I had to stay at the hospital for extra NST monitoring because the machine was reading contractions two minutes apart, but, weirdly, I couldn’t feel any of them (like WTF?!?). So given the contractions were at regular intervals, they were concerned about pre-term labor, apparently… But then they let me go. So I guess they became unconcerned all of a sudden? Talk about a mindf#ck.
Sometimes I want to just curl up and go to sleep for the next few weeks (or be placed into a medically-induced coma). But sleep seems dangerous. So I try to sleep as little as possible. Because it’s less risky to have to check whether Jay survived the night after four or five hours rather than eight, right? It’s exhausting.
I might seek help from a therapist. Don’t get too excited – I have a poor track record with therapy. But I’m kind of desperate.
Every day brings a new issue or surprise, feels like its own “battle” in a sense. Losing a child changes you in ways that make it hard to relate to most of the world, especially in the first year. And recently a couple of my baby loss mom friends explained that they found pregnancy after loss to be nearly as life changing as their losses themselves. And I believe them. And it makes me wonder… Even with a great outcome, after all the dust settles and this war is over, will I be able to relate to anyone at all?