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.

“And”

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Content note: pregnancy, children, loss – none recent

This weekend, we tore up some of the scrotty grass that’s never grown well next to our patio in the back and put in hostas.  I pulled out the dead hydrangeas from the back bed and planted shade loving coral bells.  We went to visit college friends and as we sat, I had one of those moments that might be called transcendent or even holy, where for just a second, everything was right with the world and good.

The new life, both literal and figurative, was all around us.

I came home, checked my calendar, and realized that it’s not all that much longer until my saline infusion sonogram for this final transfer.  And before I knew it, this morning I was ugly crying, the one that isn’t a couple of crystal tears decorously sliding down the cheeks, but the red-faced, sobbing, snotty Kleenex filled kind.

That’s life, though, isn’t it?  At least after a certain point?  Where the most extraordinary exists among the prosaic of every day and the deepest, darkest muck that can be dragged up?

I am so incredibly, amazingly thankful for my girls.  And I am so terribly sad that I never got to meet the three that died and were miscarried early, long before they truly lived.

I honor the truly ordinary, uneventful pregnancy I got the immense privilege of experiencing.  And I grieve the long weeks of waiting, of fertility treatments and IVF, of hope mingled with sadness, of ultimately having three others over far too early.

I get the loveliness of watching my older daughter survive and now thrive.  And I mourn that she lost the last weeks in pregnancy that she should have had, that she went through so many painful procedures, that we were separated by plexiglass walls and nights apart at the beginning of her life.

I can’t even express how much gratitude I have to see the girls treasuring each other and also fighting – as siblings do.  And I can feel my heart breaking again and again and again that my sibling is gone, that a person I held as he came into the world left it long before me in such a terrible, senseless way.

I hold my dear ones close, their precious selves tangible and messy and wonderful and alive.  And I cry remembering the unnatural coldness of my brother’s still face, the benediction of viewing him in death, the slight smear of blood that transferred to my hand when I put it on his cheek.

I am fiercely glad for my marriage and the love my husband and I get to share every day.  And I mourn the things we have both broken over the years, some of which are still being repaired.

I am grateful for the chance to complete this final cycle, to close out this particular road, to know that no matter the outcome, I am truly fortunate and ready to live this good life I have.  And I am anxious, struggling with the months of waiting in the lead-up, dreading some painful procedures, and worried about the potential for more hurt.

For the last several months, I’ve been veering back and forth between the extremes, saying how I’m fine (true) and FINE – F*cked Up, Insecure, Neurotic, and Egotistical * – (also true).   It doesn’t sum up neatly, the pros and cons on the paper don’t cancel each other out.  They’re all true, all a part of what poet Mary Oliver termed “your one wild and precious life”.

I am, without a doubt, in today’s parlance, a hot mess these days.

And…it’s an absolutely beautiful mess as well.

*credit to Louise Penny

This post is a part of Microblog Monday.  If you want to read more or add your own, please head over to Stirrup Queens’ blog.  Thanks to Mel for originating and hosting.  

This Dream Stands Before Me

Content Note: Child, parenting

When we moved to the city, we weren’t in much of a position to begin exploring.  Fortunately, as spring finally made an appearance, we began remedying that situation.  We started by taking E to the botanical gardens for her first birthday.  I hadn’t visited the gardens in years, and while the outdoor gardens weren’t appealing on the cool, gray day, the indoor gardens were beautiful and blooming.

It wasn’t E’s first outing – we’d made a few forays to restaurants during quiet hours when we could keep her in her carrier away from germs – but this one was the first we’d really done with the intention of getting out with her and showing her sights.  I’m not sure if she was impressed or unnerved by the brightly colored foliage, fish pond, and waterfall, but she kept looking around and staring at everything.

Later that evening, we took some cookies and other goodies up to the childbirth center where I spent my time on hospital bedrest and the NICU.  Seeing all the nurses who had cared for us for so many months was fun and everyone oohed and ahhed over how big E had gotten. When we stepped into the busy NICU, leaving the treats at the desk, I realized E didn’t belong there anymore as I watched people rushing around.

We threw E a party that weekend, just inviting family, but with Arthur being the oldest of five, it still meant a fair number of people.  I made simple food: meatballs, sandwich spirals, spiced oyster crackers, a fruit plate, a vegetable spread, as well as a from-scratch chocolate cake.  We helped her open her gifts, E far more enamored with the colored paper and boxes they came in.

Taking the baby out just for fun, throwing a party, going to NICU just to visit instead of staying, marked a moment that I’d dreamed about during her whole NICU stay and even beyond.  Every day, I’d go to NICU, take stock of the wires and tubes, and visualize E as a healthy toddler.  Hope that there was a life beyond the NEC scares, the brady episodes, the oxygen, worry about RSV, and the monitors where we would no longer wonder if this was the day it would all come crashing down.  It kept me going through the months where we couldn’t get E to eat, the nights the home apnea monitor would go off several times, often due to loose leads but jolting us nonetheless.

All of a sudden, that child ceased to be simply a hope and stood in front of me in the flesh.  I smiled, realizing that no matter what other dreams were gone, this one, this deeply cherished one had somehow come true.

Odds and Ends

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Watching the penultimate episode of Downton Abbey, Edith, speaking to her sister Mary, tells Mary that in the end, they will be the only two left who share the memories of their parents, their late sister Sybil, and of growing up together. It put into words a feeling I’ve been trying to articulate since my brother died, a very particular facet of that loss. In the end, I will most likely be the sole keeper of those family memories.

~*~

Listening to Arthur congratulate his brother this week on the birth of wonderful twin niece and nephew, it’s decidedly bittersweet. I’m so excited to be an aunt to these babies. We are glad for a safe birth at 32 weeks and babies in good health for their prematurity. I’m so happy E has cousins, and I know both Arthur and his brother hope to keep our families close. I am grateful for E yet again and the extraordinary circumstances that meant we were able to take her home. We are glad that E will know this uncle and aunt and their little ones.

My brother was surprisingly good with small children, although he would have been the first to deny that. He always took them seriously, listened to what they had to say, and as that’s often a rare quality in adults, they would follow him around chattering, excited to have found someone that heard them. I wonder what E would have told him, this uncle she will never know except in photographs and stories.

~*~

It’s one of the things that’s a bit hard about this birth, it comes as my period starts after the first sort-of two-week-wait I’ve had in a while.  We said we weren’t going to do this, but when my cycles suddenly regulated out on their own, we couldn’t resist. No intervention or fertility treatment, no idea if I actually ovulate, no idea if my left tube is open, just a very long shot on a natural cycle figuring it has been a year since my c-section, I’m not getting any younger, and we’re not doing any more fresh IVF.

Even though I know better, even with plans for a much better shot with an FET in the fall, I found myself half-hoping and with that small disappointment, I find myself counting the losses again: my own sibling, whether or not E will have a sibling, the long five day wait with nothing to do except sit by E’s incubator, watching the monitors alarm, wondering if E’s brain ultrasound would show bleeding before we could even consider holding her, the scariness mingled with her first kangaroo sessions as her oxygen saturation dropped and it took two nurses to get her into position, the twins I lost after the first IVF, the ectopic after my FET. I wonder about those lost babies, if they would have looked like E or her cousins?

I wonder if E will be left as the lone memory keeper for our family.

And I hate that this is what suicide and infertility and extreme prematurity have cost me, at least for now: unadulterated joy and happiness without complexity.

This post is a part of Microblog Mondays.  If you want to read more or participate, please head over to Stirrup Queens to check it out. 

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.