Arrival

Content note: birth, pregnancy.  If you’re not in the place, take care of yourself and skip this one.

In the end, the birth was noteworthy simply for its ordinariness.  I attended my last uneventful prenatal appointments, packed my bag, and rode the elevator to the third floor of the hospital on the morning of my scheduled c-section.  Even getting my IV in was drama-free, as despite my twisty, valve-covered, rolling veins, the nurse got it in on the first try.

The only slight hiccup was that after weeks of perfectly fine weather, the region had gotten blanketed in a coating of snowy, icy last-bit-of winter precipitation the day before I was scheduled to be at the hospital at 5:30 in the morning.  After a little bit of debate, Arthur and I opted to check into a hotel across the street from the hospital, even though we only live about twenty minutes away from where I was set to deliver.  There’s one stretch of road that tends to get really ugly, and neither of us wanted to be rushing or worried that morning.  It turned out to be a good thought, as the roads were slippery and my mother-in-law told us later that E had woken up three times in the night.  As it was, we got a good night’s sleep and an easy start to the day.

I walked into the OR on the early side to get my spinal started.  The scrub tech had the Beatles playing on the sound system, so I sat on the table hunched over listening to “Yellow Submarine” as I felt the sting of the local, then some pressure.  It took two tries to get the spinal in, but before I knew it, I felt the familiar tingling as my legs started to go numb.  Quickly, the staff had me on the table, the drape in place, and were bringing Arthur into the OR to start.

Despite knowing the anesthesiologist and knowing that spinals are typically pretty effective, I’m terrifically paranoid that the block won’t work and I’ll feel everything.  This was no exception.  “Don’t do anything until I’m numb,” I said.

“Can you feel this?” asked the scrub tech.

“I felt some pressure.”

“Trust me, if you’d felt anything real, you’d be swearing at me by now.  I just pinched you with an instrument very hard.”

“Oh,” I said.  I was having a weird feeling, an almost overpowering thirst combined with nausea.  I almost asked someone to get me something to drink, even though I knew I couldn’t have anything.  All of a sudden, the anesthesiologist told me to take a deep breath, there was going to be a lot of pressure.  I felt the hard push, heard my OB call “wait, wait!”  Then my OB instructed the staff to drop the drape a bit.

And there she was.

Tinier than I’d expected, with a cap of downy, dark hair, taking her first halting breath.

They took her over to the warmer, and then I heard her first outraged wails at being born into this cold, bright world.  Arthur went over to see her, and within moments, the staff brought her to me.  Arthur held her as I stared at her beautiful, tiny face.  “It’s a good thing you didn’t try to labor,” my OB remarked.  “The cord was wrapped around her neck three times.  I think you would probably have ended up in a c-section no matter what.”  That was what the “wait, wait” had been about: getting the cord unwrapped safely.  My OB finished closing me up, the anesthesiologist put in a TAP block (to block the nerves in my abdomen to prevent incisional pain), and before I knew it, I was in recovery.

Arthur placed the baby on my chest.  So very, very normal and every day for a birth, but so new to me.  I couldn’t hold E until five days after she was born.  This felt like the most extraordinary of miracles as I stared down at the sleepy baby.

We named her M (like this actress, though we picked out the name long before the actress was in the news) and gave her middle name after my late brother (the female version of this first name).  E came that afternoon with my mother-in-law and stared down at her new sister.  “Keep, keep,” she told us as she patted the baby, staring into the bassinette.

There was no NICU stay.  No incubator.  No restrictions on when we could hold her or touch her or kiss her.  No daily wondering if this would be “the day” we got the call that something had happened.  M came home with me and we placed her in the cradle that Arthur’s great-grandfather made for Arthur’s birth.  M latched on immediately and I’ve been able to nurse her.

We are all doing well.  The block after this c-section made a great deal of difference, and I didn’t need much help with pain.  Not being on various forms of bed rest for 18.5 weeks prior to delivery has helped me get moving faster and heal better.

It was, truly, everything I hoped for when we saw the second line in July.  I don’t know how it happened, but I am grateful.  Beyond grateful.

Born March 14, 2017 at 8:10 am.  7lbs, 9oz and 20.5 inches long.  

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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.

The Enemy of Finished

When I was in college, I had a piece of paper taped to the top of my computer monitor that read: “Perfection is an admirable goal, but it is the enemy of finished.” I’ve found, in the years since graduating college, that this is good advice for life, not just term papers.

One of the items on my checklist if I ever managed to get and stay pregnant was high quality professional photography. Starting with maternity photos near one of the nearby lakes in springtime, then we’d transition to adorable, sleepy newborn photos and wind up with lively “happy first birthday” photos. There was (and still is) a good chance we’re only going to get to do this once, and I planned to make the most of it. These photos were going to be gorgeous and pinterest-worthy.

Once my water broke at 21 weeks, maternity photos were out. I couldn’t stand for long periods without gushing amniotic fluid, and I was trying to keep E’s head from exerting pressure on my cervix to stall labor as long as possible. I have one photo of me noticeably pregnant, taken about 40 minutes before my c-section when I did something I’d been longing to do for weeks and took a short stroll around the maternity unit. Arthur stands beside me in scrubs and I look puffy, wearing a very fashionable hospital gown and non-skid socks. It’s precious to me because of what it represents, but it’s not quite what I had in mind originally.

Then, of course, E was in the NICU for eight weeks, then out for four days, then back in for another eleven day stay. She was covered in oxygen and monitor cords. She got cold easily, so undressing her and doing those cute, sleepy photos wasn’t an option. I have quite a lot of photos of her in NICU, but none of them are professional for obvious reasons.

Once E got out, we scheduled with a professional photographer who had extremely reasonable prices because she was still building her portfolio. The appointed day of our (outdoor) shoot, it rained. We had to reschedule. Arthur and I wound up having a conflict with the second appointment. The photographer had to cancel the third due to a family emergency. After that point, we realized it wasn’t going to work. I had a couple of cute outfits and a family cradle I really wanted photos of E in, and she was outgrowing them. It was already July. We asked Arthur’s dad – who is decent with a camera – to take a few shots.

We cleaned ourselves up, I put on make-up and a skirt, and we schlepped ourselves and all of E’s outfits about an hour to do the shoot. To make a long story short, it turned out that Arthur’s dad, who had been photographing some of the flowers at the park before we arrived, forgot to adjust the settings on the camera. All of the photos took on a distinct blue-green tint as the color saturation was way off. Even after playing around with editing for some time, I couldn’t get the color quite right. I get along well with my in-laws, but even when people get along well in any family there are going to be moments where we are less than happy with one another. This was one of those moments. I reminded myself that  as upset as I was this was not worth serious drama, took a deep breath and counted to ten.

Thanks to a long time spent on bed rest, the short duration of my pregnancy, and Arthur losing his job for several months in the middle (and of course, IVF), I knew we didn’t have the money to do the gorgeous, outdoor, artsy photo shoot I’d envisioned at that point. This, for what it’s worth, is not a complaint. We are darned fortunate that with everything that happened we didn’t take a far more catastrophic financial hit. We are doing okay, amazingly okay. But we definitely didn’t (and don’t) have the discretionary income to throw the several hundred dollars it costs in our area after the shoot that lined up with my vision of perfection. After the set of photos with Arthur’s dad didn’t work out, life got busy with doctor’s appointments and then my brother died. Photos fell off the priority list entirely.

This week, I was in a gently-used children’s store looking for an item and ran across the cutest little Christmas dress in E’s size. It was inexpensive, so I nabbed it and Arthur and I delighted over it when I showed it to him. The familiar refrain in my head started. I have to get a cute picture of E in this dress.

I thought about it a bit more. Yeah, I really do want to get a picture of E in this dress. I don’t have a picture printed out of her to show people when they ask. I don’t have a picture for my locker at work. I really want a decent photo of her – and maybe us with her too.

I knew finding a photographer with availability at all this time of year was going to be a challenge, let alone one within our price range. I did a few internet searches and finally landed on the portrait studio at the local mall. The prices were low, low enough to fit in our very limited budget, and they had plenty of availability. I set the appointment for this coming Monday evening.

The photos won’t be breath-taking. They won’t make Annie Leibovitz sigh in envy. They really won’t be pinterest-worthy (except maybe in a hipster, ironic sort of way).

At the same time, I’ll have pictures of E in that adorable dress. I’ll have a reasonably decent photo of the three of us I can put up on my work locker and send to family. I also know, a couple of years from now, I’ll look at that photo and smile. We’re lucky at this stage we can even get this photo taken for so many reasons.

It’s not perfect. But you know something? Perfection – and pinterest worthiness – are overrated.  Sometimes, things just need finished.

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.