A Slow Burn

One of my more visceral memories from childhood comes from when I had chickenpox.  Age-wise, I’m among the oldest Millenials and I got it before the vaccine was widely given.  Mostly, what I remember is the incredible itching.  I had gotten a full-blown case, spots everywhere with fever, but no major complications.  “Don’t scratch,” my dad told me.

“But it ITCHES!” I wailed.

“You don’t want to get infections and scars, especially on your face.”

“I DON’T CARE IF I GET SCARS!”

“You will when you’re 16.”

As I grew up, though, I read more about diseases like polio (author Peg Kehret’s Small Steps: The Year I Got Polio is a well-written, YA-level account) and mumps and measles.  I shivered at the horrific accounts of the Spanish Flu and did high school reports on the Black Plague.  I was glad that I never had to experience them, and even as my belief that medical science could conquer almost anything faded quickly, I felt fairly secure.  I rejoiced when the girls got their chickenpox vaccines, that they wouldn’t have to know even a week’s itchy misery, let alone the more serious complications.

~*~

After E got home from the NICU, we were under quarantine for a year.  I was allowed to take her to medical appointments and occasional shopping expeditions (where I kept her covered in her car seat and sanitized virtually everything we touched).  Arthur went to work and did everything he could to stay away from illness, as did I.  I had an elaborate routine post-shift of changing at work, washing any exposed skin from my shift, my scrubs sealed in bags and washed separately with the washer bleached afterwards.  E and I didn’t go to church, and after his second job ended in the early fall (before cold/flu season), Arthur didn’t either.  We didn’t go to gatherings (with the exception of my brother’s memorial service, where the worry E would catch something added to the general awfulness of the situation).  I used to take E for walks in the fresh air when it was nice, social-distancing ourselves by at least 3 feet from other people before the term entered the lexicon.  We had hand sanitizer stationed all around the house and my hands were often dry and cracked from washing.

All this to say, these precautions aren’t totally new to me.  The fear isn’t new.  The isolation isn’t new.

It’s a deep breath and the slow burn of anxiety as we wait in ways I never thought we’d have to do again.

~*~

In my house, we are all low-risk as possible for the serious complications and doing everything we can to be responsible citizens to prevent the virus spreading/complying with social distancing.  I know the virus can be severe in younger people as well and we are not by any means taking that potential lightly.  Strangely, I’m less anxious about working in health care than I would have thought – but, then, I’ve known since long before going to nursing school that communicable diseases were a risk I had to assume if I chose this field.  Obviously will be following all guidance closely and extremely careful complying with all personal protective equipment/isolation requirements (as always).

I am definitely worried about my parents, friends, my last surviving grandparent, all the elderly/immunocompromised and what happens next.  Reading about Italy’s current situation is almost overwhelming in its awfulness and the decisions that I suspect we will shortly face in many other places.

I know that experts have long modeled and predicted pandemic scenarios, but in day-to-day life, it’s felt easy to rest secure.  There are so many things to worry about just in a normal course of existence.  This one really didn’t make the cut in my head.

Yet here we are.  I gave blood on Monday – one tangible thing I could do as someone who’s eligible, currently healthy, and has a blood type in high demand.  Now we take the precautions recommended by the experts, comply with public health recommendations, check in with people by internet/phone, and wait.

Waiting, as I think we all have experienced in various ways, is far tougher than most people give it credit.

That’s My Story and I’m Sticking To It

In my 20s, I attended a fair number of baby showers and pregnancy/childbirth-centric events.  It’s like a bad take-off of the Jane Austen line, “It is a truth universally acknowledged…”…that if you are a married woman in your 20s, you are interested in conceiving/pregnancy/birth.  As someone who was at best ambivalent about having babies (oh, the irony) at the time and more focused on going back to school, I found this emphasis frustrating.

When I arrived at 30, suddenly in a tearing hurry to have babies and getting into increasingly expensive, painful interventions that seemed to fail at every turn, the amount of social pressure turned into something far darker.  While there are areas of the US where women in their 30s having first babies is the norm, where I live, I was one of the oldest people in my peer group married with no kids.  Most of my friends have older kids, including a kid who is a teenager currently.

In the throes of infertility, I quit going to baby showers.  I stayed out of heavily female spaces because it felt like pregnancy/childbirth stories came up a surprising amount as a bonding activity.  I figured one day I’d get wherever “there” was to feel emotionally secure enough to start attending again.

I had the kids.  And then something strange happened: I still don’t belong.  Not really.

There’s more room for sharing of “less than optimal” experiences now than perhaps there once was, but there’s still a pretty heavy social price for relating certain parts of stories.  I’ve personally primarily experienced this in regards to miscarriages/pre-viable PPROM/NICU – so that’s what I’m writing about here – but I also know this happens in some very difficult ways in the infertility community as well for people for whom treatment doesn’t work or adoption doesn’t happen (because this isn’t my story to tell, here is an excellent blog post on that subject, as well as here).

The first time I naively waded into a discussion after my older daughter was born, I simply spoke part of the truth: that I’d been in the hospital for quite some time after my water broke at 21 weeks, the doctors thought the baby wouldn’t make it, I somehow stayed pregnant until 28w4d, and E was born, spent awhile in the NICU, and was now doing pretty well.  Never mentioned the infertility/IVF/miscarriages or the messiness of the subchorionic hematoma/hemorrhages.  I actually watched someone’s mouth drop open.  People weren’t sure what to say.  There was some shuffling and looking down and the subject got changed.  It wasn’t the last time this happened.  Eventually, I started being a lot quieter during these conversations.

“It’s like I’m Stephen King giving a speech at the romance writer’s convention,” I once quipped to Arthur.  I’ve also heard more than once complaints about how people love to tell expectant women the worst stories about infertility/pregnancy/childbirth and scare them.

Obviously, there’s an element of knowing your audience here and being polite or sensitive.  I don’t tell anxious pregnant women my story because of this, because they’ve got enough concerns going on.  There are times that people can’t handle certain stories and I get that.

But other times, there’s an element of silencing.  Stories that are too uncomfortable and too taboo to tell out loud.

As I was reading Sarah DiGregorio’s book on prematurity Early, a passage helped crystallize the vague sense of not-belonging I’ve felt at times: “I also didn’t want to be the bearer of dark information, and I couldn’t imagine how I would participate in ‘normal’ conversations about my baby.”  DiGregorio also notes that “The emphasis on ‘natural’ birth that is meant to be empowering can be painful for those of us who needed every unnatural intervention to get our babies (and/or ourselves) out alive.”

I hear that.

I know that I’m (thank goodness, as I wouldn’t wish this on anyone else) an extreme outlier to plenty of statistics.  Of people who struggle with infertility,less than 5% go on to use IVF according to the ASRM.  Subchorionic hematomas are one of the most common reasons for first trimester bleeding, but very few are anywhere near as problematic as mine turned out.  Periviable PPROM affects only around 0.4% of pregnancies.  While preterm birth is an enormous problem in the US, only a little less than 2% of all births and around 16-20% of preterm births are before 32 weeks’ gestation.  In other words, my experiences are definitely not the norm. I don’t think policies or procedures or public health should be based around women like me.

But the suggestion that anyone can (fill in the blank: get pregnant without intervention, get pregnant with intervention, prevent a miscarriage, give birth without certain interventions, prevent a c-section, etc.) has the weird effect of sort of erasing people like me who don’t fit into those narratives that we are ultimately in control.  At times, I’ve found it also can have the effect of almost turning my story into a spooky fairy-tale, the thing that lurks in the shadow, the uncomfortable specter at the feast.

It’s a tricky thing: I want women to be empowered to seek answers and have authority over their own bodies, I want to see fertility treatments covered by insurance but not hailed as ‘the’ solution to infertility, I want as many miscarriages as possible prevented but women not blamed for miscarrying, I want to see unnecessary c-sections curtailed and more choices for women but also the understanding that c-sections can be life-saving preserved, I want better public health to help prevent as many pre-term births as possible and also better NICUs/treatments for those that happen anyway, I want campaigns of information that can help people avoid bad outcomes but don’t ‘other’ or shame those that don’t fit or have less than optimal outcomes anyway.  I did nothing wrong and yet so much went sideways for me.  There was no extra prenatal care or information that would have helped me, there were d*mn good reasons I had c-sections, and I get very tired indeed at times of explaining why (fill in the blank) would not have prevented this, the suspicion that I had to have done something to make this happen because surely these things are preventable?

I don’t know the answer here.  I don’t know how we make space and genuine understanding for all of these realities.  Telling stories is a starting place, I suppose.

Variety Is The Spice Of Life

It’s weird how time passes – the minutes or hours often seem long, but then suddenly, I’m in the middle of a new week or a new month.  What I’ve been doing with those minutes and hours is a mishmash:

• Finished painting the basement. I have cream paint down the stairwell and along one long wall, then a sea-glass green to the other three walls (Benjamin Moore Windswept and Robin’s Nest if you’re curious).  It feels much lighter and airier than the blue-gray color that was there before and while I was a little worried – as always – that I wouldn’t like the colors, I love them.  I had wondered if my “anti-accent” wall would be too much (and thus should paint the whole basement in the sea-glass) or if the three colored walls would feel oppressive (and thus should paint everything cream) but the balance turned out nicely.
• Now we’re on to the basement steps, which involves sanding the rough lumber that’s there. I’m pretty sure these were originally carpet-covered, but for some reason the carpet was removed and a dark blue paint slapped down. Not great looking and, because I have some sensory issues, I hated the texture on my feet.  The trick now is to sand enough to make them feel decent underfoot but not so much that the paint doesn’t stick.  We bought stair paint in the same cream and sea-glass green as the rest of the basement.  The steps themselves will get the cream, while the risers will be sea-glass.  Then we’ll throw some thin microfiber treads on the main part of the steps.  Hopefully it will look good (at least better) once it’s done.
• I read Ariel Levy’s memoir The Rules Do Not Apply and Sarah DeGregorio’s Early: An Intimate History of Premature Birth and What it Teaches Us About Being Human. Both made me tear up for different reasons, both were excellent, and I’m hoping to delve into these with a more in-depth review here soon! (Content note – Levy’s memoir involves a stillbirth and DeGregorio’s also delves into neonatal loss.)
• Started the paperwork to register E for kindergarten. This is awesome and honestly, pretty emotional.  Kindergarten was the thing I used to hang onto in the hospital and the NICU and as we went to specialist appointments and PT/OT/ST sessions, as in “someday, she’s going to be in kindergarten, we are going to make it…somehow”.  I’d picture her getting ready for her first day, beyond the terror that a simple cold would kill her, beyond the bradycardia episodes, and the monitors.  I really cannot believe we’re now so close.
• Managed to finish a project for work on condensing some “good points” from continuing education course I did for the rest of my unit. It’s not a huge thing, but I’m really pleased with how it turned out.
• Confessed to my choir director some long-term and (to me) embarrassing deficiencies in my music reading abilities. He was totally non-judgmental and basically told me that if we don’t admit what we don’t know, we never learn.  I’ve been meeting with him to remedy those and I’m excited because I’m actually learning how to do some of these things now!
• Because we bit the bullet and went for the Dis.ney+ subscription service, Arthur and I decided to start watching the Marvel/Avengers movies as it feels like a lot of people talk about these. Have now seen “Captain America”.

What are you up to these days?

This post is a part of Microblog Mondays.  If you want to read more or participate yourself, head on over to Stirrup Queens!  Thanks to Mel for originating and hosting.  

Those Ads

Reading the other day, I came across this article on Slate about ad algorithms, grief, and social media (TW for stillbirth).  Basically, it explores the phenomenon where, post loss, people are still bombarded with ads for baby or pregnancy items when they go online.  It also has the FB shortcut to hide some of these ads but less advice about the vexing problem of FB’s tendency to “celebrate” anniversaries of particular posts.

When it happened to me, I was pretty sure I wasn’t the only one who had it occurring.  I can vividly remember getting baby ads after my first miscarriage because I’d spent time looking up pregnancy-related websites.  It sucked, especially in those first few days after arriving home from the hospital post D&C when I was physically and emotionally achy.

My second loss was a little less problematic in terms of the ads – mostly because I had known something was wrong from the start and my searching had been confined to things like “ectopic pregnancy symptoms” and “really low beta HcG” and “pregnant but bleeding”.

The one that really wrecked me, however, was after E’s birth at 28w4d when I kept getting ads for maternity clothes while she was in the NICU.

The Slate article goes on to talk about why there aren’t better algorithms to prevent these triggering ads: “The real problem is that there’s no quick capitalistic incentive for Face.book to do the work of sorting ads or pictures for you.  As one grieving woman told the Australian website…’There’s no money in miscarriages, obviously.’”

Having walked through infertility and miscarriage, I can’t help but think, as do the women featured in the article, that there really does have to be a better way.

Preemie Parenting: Our Own Version of Normal

Like a number of preemie parents I’ve read, I figured once we got E home from the hospital – especially the second time, when she was off the oxygen – we’d eventually pick up a somewhat regular infant experience. I mean, I understood that she would be developmentally closer to her adjusted age and there were going to be challenges, but after NICU, being home felt luxuriously normal.

When E was in NICU, twice nurses referred to her as a “micro-preemie”. I bristled a bit at that, and technically speaking, I was right: micro-preemies are usually considered babies born 26 weeks’ gestation or less and under 1.75 pounds. However, it’s not unusual to loosen the definition to include babies less than 29 weeks’ gestation and/or under 3 pounds, which E fits on both counts. Regardless, I didn’t want to hear it. E was a miracle. She had never needed a ventilator and was on c-pap for around 24 hours. She was going to be completely fine, and by ‘fine’, I mean that somewhere in my head I got wildly optimistic and figured that things were going to get much closer to what one would expect with a term baby.

Well, E is still a miracle, and I don’t use that term lightly. She smiles, giggles, and loves people.  She reaches for toys and plays now.  There’s no doubt we beat the odds big-time with her surviving at all. But despite the fact that E is doing remarkably well for how premature she was, there’s also no doubt that it’s not quite the same thing as raising most full-term infants. We go to doctor’s appointments/tests about once a week and get therapy weekly right now.

I got my first major taste of this beginning in August when E decided she was not going to eat peacefully. Prior to this, E had started occupational therapy (OT) to help her keep up and reach developmental milestones, which I had expected she might need. Eating had always been a challenge, but starting around the middle of August, the struggle intensified dramatically. When I say she wouldn’t eat, I mean she kicked, screamed, arched her little back and tried to throw herself off my lap to get away from the hated bottle.

In my drafts, there are writings totaling over six pages detailing the many visits with the pediatrician, specialists, Zan.tac, Pri.losec, changing bottles, changing techniques, and Arthur and I staring at each other in total frustration and worry as we watched our normally happy baby turn into a child that alternated between lethargy and screaming. It came to a head in mid-October when the GI specialist nearly admitted E back to the hospital but told us we could try a hypoallergenic formula as a last-ditch effort to avoid readmission. If she didn’t improve quickly, we had very little choice.

The new formula worked. E improved and was diagnosed with a milk allergy. She did not, however, get enormously easier to feed. Somehow, probably because Arthur and I are nothing if not incredibly stubborn, E has managed to gain weight and avoid a ‘failure to thrive’ diagnosis. We track every calorie. The ongoing battles with feeding continue to be a challenge.

Around this time, I also noticed something else. E has always had a few very mild contractures on her left side. We – and the various therapists that saw E both in NICU and First Steps – always assumed that the reason for these was the PPROM and being trapped for weeks in one position without amniotic fluid. The problem was that as E grew, they weren’t going away. She developed a bit of torticollis that led to a decided flat spot (plagiocephaly) on the left side of her head. With the OT and a lot of stretching, we managed to get the torticollis mostly corrected and the plagiocephaly improved.

During tummy time I also started to notice that she would push up with her right arm, but not nearly as much with her left. I pointed this out to the OT who assessed E and agreed. The left arm and leg were weaker than the right. We continued with OT and waited a little longer. The left sided weakness was mild, but continued to persist.

The weakness and contractures that were decidedly one-sided (hemiplegia) stood out as a possible neurological issue. I knew neither of E’s two brain ultrasounds in NICU had shown bleeding, but I also knew that the weakness was still present. I asked the doctor at the neonatal follow-up clinic about it, and she concurred that possibly having a neurologist evaluate was a good idea. We waited another month for the appointment, hoping E might continue to grow out of it and the appointment would become unnecessary.

The appointment was necessary and the neurologist agreed that there was a tone difference between the right and left sides. “I’d like her to have an MRI,” the neurologist told us. “She may have a small lesion in her brain and some mild cerebral palsy.” Seeing the alarmed expressions on our faces, the neurologist explained that cerebral palsy simply means that something happened that affected E’s motor skills before age 1 and reassured us that it didn’t mean that she’d never walk or have severe motor issues. In fact, the neurologist said, she expected E to keep progressing well and eventually catch up. She pointed out that E uses her left hand and it wasn’t contractured into a fist, which meant whatever is going on is very mild.  The neurologist also told us that the MRI might look normal and the issue might be due to the PPROM and restricted movement.

The neurologist also told us E needed a swallow study because of the hemiplegia. I’d refused swallow studies in the past because everyone had told me that the study checked for aspiration and we knew E wasn’t aspirating. She didn’t have the lung infections that mark even silent aspiration and no other symptoms. However, this was the fourth or fifth medical professional that had recommended a swallow study, so I reluctantly agreed and the swallow study is scheduled next week.

The MRI is scheduled for tomorrow. There’s a sense in which nothing will change, no matter what it shows. We think E is wonderful. She’ll continue with therapy. Regardless of the challenges, diagnoses, or issues we face going forward, what matters is that she’s our daughter.  We’ll love her, parent her, and fight for her, just as we always have.

What it does remind me, however, is that E isn’t a full-term baby. That this didn’t end when we left the hospital or got rid of the oxygen or finally turned in her apnea monitor. It’s meant that I finally have to start letting go of those things that define other people’s parenting experiences and embracing E’s timetable and coming to terms with accepting that E was born at 28 weeks due to circumstances beyond our control and all that entails.

It is what it is.  And that’s okay.  It’s our own version of normal.