Anxiety and exhaustion

~ christine

I’m approaching 24 weeks in my pregnancy with Jay. Viability. The point at which a baby can live outside the womb should he need be delivered. (Though at 28 weeks the odds of survival become much higher.) I celebrated this milestone in my pregnancy with Matthew. How stupid and naïve I was.

To me, it seems the definition of viability should be clarified… The point at which, technically speaking, a baby can live outside the womb should he need to be delivered. But this is only if any problems that arise are identifiable and aren’t acute in nature, and only if the patient actually identifies said problems in time, and only if the patient makes it to the hospital in time, and only if doctors agree the baby needs to come out in time, and only if doctors act quickly enough to get the baby out in time, and only if the baby’s reserves haven’t been depleted enough to render any resuscitation attempts useless, and only if the baby survives lung immaturity issues and also manages to avoid contracting a hospital acquired infection. Only then could a post-24-week baby live and the chances of the stars aligning and all these aforementioned things happening are actually so effing small, so happy viability day – don’t celebrate just yet.

So, although I’m beyond thankful to be nearing this point, I’m also not reassured.

A couple of weeks ago I was sick for three days. I get sick once per year in April. This year was no different. My sickness started as a sore throat, turned into a head cold, and then morphed into a chest cold, until I could use the rescue inhaler (safe for pregnancy) enough times and cough up enough gross shit that I could breathe again. (I’m 99% sure I’ll die of pneumonia someday provided something else doesn’t get me first, though Mark assures me I’ll avert this fate with advanced preparation – like perhaps when I reach a certain age I’ll just prophylactically puff inhalers into perpetuity?)

So I stayed at home from work one day, and it wasn’t at all fun. I couldn’t read or write or watch TV. Instead, I stayed in bed and took vitamin C and drank Gatorade and water and napped whenever I wasn’t pissing off all of the Gatorade and water.

And it was a really bad day filled with coughing and chills and diminished hope (emphasis on diminished hope). And I entered an extremely dark place, a place in which I’ve pretty much remained ever since.

I tried to sleep for most of the day. And I succeeded, but only in ~45 minute intervals. So ~seven times I fell asleep. And ~seven times, I had the same short nightmare – I’m being wheeled back to the operating room, tears streaming down my face. The scene’s chaotic, but my thoughts are clear. I’m screaming, “Will I die? Will Matthew die?” I’m begging and pleading, “Don’t let us die!” And then I’m knocked out. And shortly thereafter, I awaken from surgery. And Mark chokes out, “He didn’t make it.”

And my eyes snap open. It’s a horrific nightmare. But it’s also real. And those tears from the nightmare? They’ve crossed over into reality. I notice my eyes are wet, as I’ve just relived the worst moments of my life. Over and over again. Seven times in one day.

And when you’re approaching “viability” in a pregnancy after loss and you’re sick and you’re experiencing flashbacks of your first child dying and your cord pathology scan (ultrasound) looms in the near future, it’s difficult to remain hopeful.

Our first cord pathology scan is next week. The one for which we’ve begged and pleaded. The one I’ve written about in my blog, insisting that it’s possible. The one that our doctors probably wouldn’t be doing if it weren’t for us demanding it.

And I’m terrified. Because how else am I supposed to feel when they’re going to be tracing the cord in its entirety, searching for the very issues that killed Matthew, my precious firstborn child? And what in the actual hell am I going to do if they find something?

Finding any sort of cord issue would be the end of any bit of “carefree” in this pregnancy. And when I say carefree, I’m speaking only in terms of within my new world, where carefree equals regular thoughts of death and feelings of helplessness and panic for no reason other than a previous pregnancy ending in tragedy, which, to be clear, is a damn good reason.

But I don’t know what will happen if there actually becomes a reason for me to panic that is associated with this specific pregnancy – if I’m given the news that Jay has potential to also become a ticking time bomb. How would I begin to process this? And, though we’ve demanded the information, do we really want to know?

Mark and I discussed this a couple of nights ago, and I sobbed uncontrollably on the sofa as he consoled me. We revisited the pros and cons of proceeding with these cord pathology scans…

And we decided to proceed. Because no matter what the final outcome, we believe we’ll want (need) to know that we used every ounce of information we’ve learned to give Jay his best chances of survival. We don’t want to put ourselves in a position of potentially looking back and wishing we’d tried something more.

I just hope that there are no cord issues, obviously. Because even the most innocent of cord issues would feel like a death sentence.

Though to clarify, in theory, we shouldn’t receive any news that actually is a death sentence. Approximately one third of babies are born with one or more nuchal wraps. And, each day, many babies are born healthy with true knots as well as with other cord issues…

By knowing about potential cord issues, we’ll be able to adjust our monitoring strategies accordingly. We’ll be able to perform cost-benefit analysis of early delivery beginning ~week 32. All of these things are good and increase survival odds. And all of these things go beyond United States standard of care and aren’t afforded to babies in low-risk pregnancies (or most high-risk pregnancies), many of which end happily regardless. But I’m still so scared.

And if no cord issues are identified at 24 weeks, as much relief as we’ll feel, we also know that this only represents a snapshot in time. Jay and his cord will continue to move. So we’ll look again at 28 and 32 weeks, hoping and praying all remains uncomplicated.

And I’ve been having so many other unnerving thoughts lately. Not only have I relived Matthew’s death repeatedly, but as I reach 24 weeks in this pregnancy, I’ve also begun to wonder (in far too much detail) when Matthew’s cord issues started.

Was it in the wee morning hours of July 12, 2015? Was it much earlier? Could the cord issues that killed Matthew have been seen at 24 or 28 or 32 weeks? If they could have been seen, could we have done something to prevent his death? Did I do something to cause his true knot – move in a certain way or eat something funny? Have I already inadvertently done something to put Jay at risk?

I know none of these questions are reasonable. But it doesn’t stop me from asking them. So, after we decided to proceed with the cord pathology scans, I continued to sob uncontrollably, bombarding Mark with said questions.

And Mark’s never understood why I continue to blame myself for Matthew’s death, but I think this has finally changed… “I get it now. It’s kind of like if I were driving down the road, doing everything I could to keep my family safe, and, out of nowhere, a drunk driver collided with us, killing our child… I’d know it wasn’t my fault, but I’d replay it in my mind forever… I’d wonder if I should have stopped at the yellow light four stoplights ago instead of speeding through it. I’d wonder if I should have driven only three miles over the speed limit rather than five. I’d wonder an infinite number of things for the rest of my life,” Mark explained, as tears filled his eyes.

And I realized that this is exactly how I feel. Like I was driving the car.

And I’m driving it again. And I have no idea where I went wrong last time. (I didn’t.) And I have no idea how I’ll prevent a similar outcome. (Not everything is within our control.)

But I’m indeed driving.

And the thoughts are becoming so overwhelming… The grief combined with the post-traumatic stress disorder (PTSD) nightmares combined with the anxiety combined with some self-blame.

I’m exhausted. Life’s been unimaginably difficult over these past 9.5 months. And I say unimaginably from my perspective as the one who’s lived it.

Sometimes I feel like I’m doing well (relatively speaking, of course). And other times, the thought of surviving another minute is physically painful. My chest hurts. I can’t breathe.

I don’t want to imply that I’m not thankful… Having Jay on the way, and Jay being healthy and alive in this moment is certainly our best-case scenario for which we’re immeasurably grateful… But I’m exhausted, especially by my knowledge that, even if all goes perfectly with Jay in the end, I’ll likely still be exhausted.

Because sometimes things like driving a car or grocery shopping or cleaning the kitchen or doing the laundry seem impossible when you’re also thinking, “My child is dead. I held his lifeless body. I buried him. I’ve been through intense emotional and physical trauma,” while simultaneously picturing the absolute hell you’ve lived in vivid color.

I try not to make a habit of this, but sometimes the thoughts and feelings and visuals wash over me, and it’s uncontrollable. And I don’t yet know how my knowledge of the horror of what’s happened to me (to us) can coexist with normal daily activities without wearing me down in the way that it currently is.

When will life feel less exhausting?

It’s been 9.5 months, and I’m still trying to figure it out.

30 thoughts on “Anxiety and exhaustion”

  1. Hi Christine, I’m so sorry that you’re having to relive this nightmare. I know it’s so easy to question what you did wrong and go back over so many details. The hardest thing is you can do everything right in pregnancy and still lose a baby. You articulate so well what it’s like to be pregnant after a loss, I’m right with you (a few thousand miles away) x

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    1. It is soooo hard. We all did everything right and still lost our sweet babies. It makes no logical sense, which is why I probably replay it in my mind because I want it to be logical, though I intellectually know it never will be. Sending you hugs from many miles away. xoxo

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  2. I pretty much held my breath through this whole post. You’ve both expressed the ‘blaming’ aspect so well, it is exactly that – searching for the thing you never actually did wrong. I am sending positive thoughts your way for the scan, and the next, and the next… Grief is exhausting, add in pregnancy after loss.. I don’t know if there’s much let up to be had, but I wish there was for all of us, and for you especially – you’ve been such a support to others, selflessly. I really hope you have a gentle few days ahead, xxx

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    1. Thank you so much for these sweet words. Yes, exhausting. And the blaming for something you never actually did wrong… I so hope this can stop at some point… For all of us. It let up for awhile for me, but, alas, it has returned. It might have something to do with experiencing pregnancy again. Sending you hugs from across the pond, sweet mama. xoxo

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  3. The PTSD that follows the still birth is exhausting. We are not expecting our second child yet but hopefully soon. I know that journey will be a tough one. I am hoping your son’s scans come back good and I’m sending positive vibes your way.

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  4. Hey there, friend.

    I’m so sorry you are exhausted. I wish I could tell you when this life gets less exhausting, because I don’t even know. It’s exhausting to feel disappointed by life and the people in it (thankfully not every person) over and again. It’s exhausting to think of the future and to question said future’s safe arrival, and to feel solely responsible for getting him here safely. (the car wreck analogy made me cry…so heartbreakingly perfect.) Some days its so fucking hard to get out of bed. Still.

    Throw in the pregnancy hormones and the added PTSD and the extreme whiplash of “didn’t I just do this?” and it’s almost unbearable. Almost.

    Except that it isn’t, because you’re doing it. You’re doing it now and you’re doing it every time you question why you’re doing it. You’re doing it because even though you can’t always feel hopeful, you are hopeful. And I know it’s even exhausting to hope, so exhausting and so very scary, but you are the walking embodiment of hope right now…so all you’ve got to do my friend, is keep walking. Just keep walking.

    (Or keep laying in bed eating chocolate and watching Netflix. Same thing 😉

    I’m so sorry it feels extra heavy right now. I’m here to hold whatever I can.

    Love,
    Nora

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    3. Oh, Nora, my sweet friend… Your words are always so wise and beautiful and encouraging and never cease to make me cry. I don’t know what I’d do without you. I’m so thankful for you in my life. xoxo

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    1. Thank you for your kind words and continued encouragement. This was indeed a dark post – I was (and kind of still am) in an especially dark place, though hoping the weekend will bring some reprieve…

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  6. The drunk driver analogy is so apt. It is difficult to explain the guilt felt emotionally even when your rational mind knows you shouldn’t have it.

    Thanks for sharing your emotional journey. We’d like to try again to conceive as soon as we get the all clear from my doctor, but I know it will be a much more tumultuous time than the first pregnancy.

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    1. It’s tumultuous but there’s hope, and hopefully, in the end, we’ll all be able to say that pregnancy after loss was the hardest thing we’ve ever done but also worth it. Sending you hugs and well wishes. xoxo

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  7. I am hoping your future self is out there somewhere thinking back to this time and wishing she could take away the anguish and reassure you that everything turns out OK. Hold on to the hope and determination that led you to the decision to try for another — grasp onto it like your rock in the storm. “I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past, I shall turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.” (litany against fear from Dune)

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    3. Thank you for your kind words of encouragement and for providing this passage. I think I’m going to print it off and post it in my office or something 🙂 Wise words to remember. I hope you’re doing well. Sending hugs to you, sweet mama.

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  8. Your post is so moving, Christine. And so very true. PAL is filled with so many emotions that can swing the full spectrum from minute to minute. Or stay stuck in a place for weeks. It’s hard and it’s exhausting. Sending you big big hugs, mama. ❤

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  9. “I get it now. It’s kind of like if I were driving down the road, doing everything I could to keep my family safe, and, out of nowhere, a drunk driver collided with us, killing our child… I’d know it wasn’t my fault, but I’d replay it in my mind forever… I’d wonder if I should have stopped at the yellow light four stoplights ago instead of speeding through it. I’d wonder if I should have driven only three miles over the speed limit rather than five. I’d wonder an infinite number of things for the rest of my life,” Mark explained, as tears filled his eyes.

    Yes.

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  10. 😦 Know how that feels, The PTSD makes me jump. I’m constantly on high alert for danger, I’m constantly going over the events that led to Max’s death. I’m reliving my final moments with him in the mortuary and funeral home. I never thought I would have precious memories of holding my son for the last time in a mortuary- but I do, it was the last cuddle and I squeezed him so tightly I wished I would never have to let go.

    Things calm and settle for a few days, minutes or seconds. Then I’m hit again by grief. Very sadly I have found out through hospital investigations that they identified Max as high risk 3 weeks before his death, the sonographer SHOULD have referred me on to the maternity assessment unit, but she didn’t-and this is what I have to live with. The pain is excruciating and I’ll be spending the rest of my life picking up the pieces.

    I am hoping you get through the next few weeks as gently as possible, I know it’s going to be hard for you and I wish it wasn’t. I wish there was something I could say to make you feel better and take away some of the pain, I can’t but I’m there right with you willing you on, we all are. You’ve been there for me in my darkest moments and I’ll be forever in your debt.

    Thinking of you, precious Matthew and his little brother always xxxx

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    1. George – Thank you so much for your comment and positive thoughts and words of encouragement. I’m so sorry you can so closely relate to all these PTSD feelings. I’m so sorry we’re all going through this – the unimaginable. I can’t believe our memories of our precious children are of holding them lifeless in hospitals and mortuaries and funeral homes. No one could have ever prepared us for such. No one can fathom the trauma without living it. I’m so sad this is our reality… And I’m so sorry you’ve also found the waves of grief and anxiety and trauma to be extra tall lately. I’m right there with you – it’s exhausting to be on such high alert for danger so constantly. I don’t think we humans are built to withstand it for such long periods of time… Hence the exhaustion.

      And I’m so sorry you’ve had to deal with the hospital telling you that things could and maybe should have been done differently. It’s so hard to look back on our pregnancies ending in tragedy and think about what might have saved our precious children. So many what ifs… So many questions.. So many opportunities to find fault in others or in ourselves. I hope someday these feelings can lessen in their intensity. For you. For me. For all of us. Each sweet loss mama I’ve encountered would have put her own life on the line to save her child… I hope that wherever our precious children are, they know this – they know how much we love them.

      I wish I had more words of encouragement. I know it’s so painful. You’re not alone. I’m right there in that dark place with you. I continue to think of you and your precious Max. I’m sending you giant hugs, sweet mama. xoxo

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      1. Thank you Christine, you’ll never know just how much you’ve ‘been there’ for me and not a day goes by that I don’t stop to think about you and your precious boy Matthew. I hope our babies know how much we love them wherever they are! And I hope you find some peace, that we all find it someday, somehow. Much love as always xxx

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  11. Yes yes and yes! It’s completely exhausting. I’ve found the flashbacks to my first pregnancy have intensified a lot with being pregnant again. Even the happy memories are sad and the traumatic memories are horrific! You are doing all you can which is to acknowledge each and every emotion, accept them for what they are and deal with them until they pass. You have such a talent for writing, I know that will keep on being such a good resource for you as well as helping people who read your posts! Xx

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    1. Thank you for your kind words of encouragement. I do think being pregnant again intensifies so many feelings… I wish not all of our happy memories of them were also so darn sad. I wonder if it will always be like this? I’m sending you so many well wishes and positive thoughts for these next few days and weeks. You’re almost there, sweet mama. xoxo

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  12. “I just hope that there are no cord issues, obviously. Because even the most innocent of cord issues would feel like a death sentence.” Oh Christine… I read your post the other day and I’ve just reread it. Having my son Freddie die at 38 weeks of a true knot (and one nuchal wrap round his neck) makes your experience so close to home for me.. I didn’t even realise cord pathology scans were a reality. The professor at our hospital told us they can’t tell the difference between true knots, false knots and just a pile of cord… I accepted this as “they’re the medical experts” but look where the tactic got me last time.. I wish I was as informed as you. It’s been 6 long months on the 6th May since I gave birth to Freddie and we’re still not pregnant with our rainbow.. I read your blog with hope and terror at the realities of what a pregnancy following baby loss will be like. I’m desperate to be pregnant again with my 2nd rainbow (Freddie was actually a rainbow baby himself) but i’m terrified as there’s nothing the NHS in the UK seem to offer that could help reassure us. We watched the film ‘The theory of Everything’ on Friday and Stephen Hawking said “However bad life may seem, there is always something you can do, and succeed at. While there’s life, there is hope.” I’ve thought about this all weekend and I guess it applies to many aspects of life.
    Thank you for your brilliant blog. xxx

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  13. Pingback: Jay – umbilical cord pathology scan 1 | chickydoodles

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