Frozen

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?

17 thoughts on “Frozen

  1. not batshit crazy at all. Please keep writing your truth just the way it is.
    I can’t even imagine how stressful this all must be for you.
    big hug, Tamar

    Liked by 1 person

  2. I agree with the previous comment, not batshit crazy in the slightest. Please continue to write as honestly as you do, you touch so many people. I am certain the things you are feeling and experiencing are the same as many others who just suffer silently. I have been thinking of you guys, hoping that each day passes quickly for you. I know the time of year is extremely hard too. Know you and your husband are doing everything you can for Jay to ensure he gets here safely!!

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  3. I appreciate your honesty and am honored to witness your experience. My son, Jackson, was stillborn in December and I have shared many of these experiences as well. If we are fortunate enough to conceive again, I imagine I will go through a lot of what you are going through as well. I hope you can find some calmness in this storm of emotions.

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    1. Though everyone processes things a bit differently, I don’t think pregnancy after loss can be easy for anyone. When you’ve been through the worst, how could you not fear it again? I’m so sorry for your heartbreaking loss of your precious Jackson, and I’m sending you so many well wishes for future healthy pregnancies. xoxo

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  4. First, I wish I could just go for a long walk with you and let you purge all your thoughts and fears and probably say some inappropriate comment that would hopefully make you laugh. (I’ll tell S to get her butt over there, it’s a family trait. 😉 )

    Second..never apologize for what you write.
    Your thoughts, feelings and emotions are what they are. There is no right or wrong involved.
    Your comments made me think of these two quotes:
    “I am not afraid of my truth anymore and I will not omit pieces of me to make you comfortable.” – Alex Elle &
    “if you’re not in the arena getting your ass kicked, I’m not interested in your feedback.” Brené Brown, Rising Strong

    Finding a therapist is similar to dating, you have to keep putting yourself out there and trying until you find the right one. It sucks to keep telling the same story to new people, but hopefully you find someone who fits your needs and personality and is also able to help you.

    Liked by 1 person

    1. Ha – I’d love to go on a walk with you! I saw S the other day – starting our Monday night dinners again (though I warned them of my stress levels). 🙂

      I absolutely LOVE these quotes, and I’m confident I’ll be quoting them in my blog sometime, so thank you!

      And yes, therapy like dating – a spot on comparison!

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  5. So many things to comment on within this post that I’m sure to miss something, so apologies in advance 🙂

    Grief is put on hold during rainbow pregnancies. You are so worried about bringing your rainbow home alive that your grief is shoved to the background. Be forewarned that your emotions are going to insane, on top of the PP insanity because all of the grief that’s been on hold for Matthew will rush in after Jay’s arrival. So, you’re going to appear bat shit crazy for awhile, even though we all know this is normal.

    Anniversaries and milestones are difficult enough, then to add a PAL on top of them is another level of difficulty. Oscar’s and Bella’s first birthday was all planned out, we were going to have a party at our house and invite other families from our bereaved parent support group to attend. Turns out we still had the party, but had to totally change plans because I was on modified bedrest after being in the hospital for 10 days for pre-term contractions with our rainbow. It was my first, and very hard to handle, lesson in the living kids will overshadow the dead ones simply because they are alive.

    I definitely suggest a therapist. If one doesn’t work out, try another. When you find the right therapist for you, you’ll be amazed how good it feels.

    If there is a bereaved parent support group in your area, I highly suggest reaching out to the other families who are experiencing rainbow pregnancies or already have their rainbows here. They will be the parents whom you will most be able to relate to. Others not so much, at least for a long while, if you’re like me.

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  6. Oh, and I forgot to mention that though it sounds like you are being demanding and unreasonable by being freaked out and having all these appointments, you are not. You are doing everything that YOU can to make sure that Jay continues to stay healthy. If you need to be seen every day, then so be it.

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  7. Chrissie,

    You are not crazy. You are courageous. At the risk of being called out by your readers and other really smart people, we humans are able to control our feelings only by choosing – as best as humanly possible -what we think.

    Every day, breath-by-breath, step-by-step, snooze-by-snooze, scan-by-scan, test-by-test, prayer-by-prayer, smile-by-smile, tear-by-tear, word-by-word, moment-by-moment, heartbeat-by-heartbeat, you and Mark are doing everything that you know to bring Jay safely to birth. You are already parenting, taking care of both his health and yours.

    You give what you have. You are already a GREAT mom to Matthew and Jay. Even with faith, we know where we are and where we will be forever, but not what lies in between. But we do know we are here together. If sharing your fears in this blog helps you confront those fears, it is our joy to try to help you carry them. No need for an apology here.

    And take a step back and look. You are doing it.

    Sending care, love, and prayers for all of you.

    Love,

    Doug

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  8. I’m so sorry for the mind f@$%. You are not crazy. You have every right to every emotion you are feeling. There is no right and wrong, no black and white. P.S…. pretty sure I can find a guy with an industrial plunger if you need one… just in case….

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  9. Well, I feel exhausted just reading this so no doubt the past few weeks have zapped any energy you did have. You are not crazy – you are human, and real. I love that you still push and push to get whatever niggly questions you have, and I hope I can have that courage because it is not always easy. I really feel your battle of distrust but needing to trust, it’s a hard line to walk – you have to trust them, who else do you have. But when the outcome before has been so so so shitty, it’s fighting against everyone’s standard response to a bad outcome. So many positive calm thoughts being sent your way over the next forty days, and for Matthews birthday too (I’m not a fan of anything Angel..) xxx

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  10. First, so many hugs. You are not batshit crazy, and you don’t need to apologize for what you are feeling. I appreciate how honest you are with what you are feeling; it’s hard to be vulnerable and be honest like this. ❤ I'm not even pregnant yet, and already the idea of being pregnant after a loss is completely messing with my mind.

    I understand the feelings of not being able to trust, and yet you are forced to trust them. I know my doctors are great, but I lost a lot of trust in them when Theo died. Modern medicine failed me, how can I trust it again? It's a hard battle, and no right answer I think.

    Just take it one moment at a time. Hugs.

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  11. I know you posted this a few days ago, but I just now found myself able to read it. I swear to god your brain and mine are on the same wave length. I have spent the day thinking about our upcoming FET (frozen egg transfer) and how I actually don’t know if I’m going to be able to fucking handle being pregnant again.

    How? How am I going to be able to go through all of that again, and expect a different outcome?

    I think of you and Jay (and Matthew) so often. You are not crazy. I am so glad I “met” you. Demand all the monitoring; it’s not crazy one fucking bit. HUGE (((Hugs))) momma. You got this.

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  12. This is your safe place to put all these thoughts, don’t apologize, don’t worry about what others are thinking. We got your back! Sending light and love during this justifiably terrifying time.

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