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.