Odds and Ends

A couple of weeks ago, E knocked my laptop off the coffee table accidentally.  In a freak sort of moment, it hit the corner of a heavy basket I keep next to the table and cracked the screen.  Since the crack didn’t affect the LCD part of the screen (it was a very surface crack), I groaned and figured I’d keep using the laptop for a bit while researching potential replacements and saving.

A few days later, M spit up directly into the keypad.  I turned it off immediately, wiped up what I could, and waited.  The laptop is mostly working now, but has some sticky keys and is clearly running even more obviously on borrowed time than before.  Arthur is researching alternatives and hopefully we’ll get one ordered in the next week or so before this laptop dies entirely.  I’m backing up all my files to the external hard-drive and getting ready to move my bookmarks and such before that happens.

It is telling that upon seeing the screen crack, my first thought was: well, this will most likely be less expensive to replace than two vials of foll.istim and definitely less expensive than a single IUI.

Infertility has clearly skewed my view of the term “expensive”.

~*~

Life is in that busy but largely pleasant mode for the most part these days.  I’ve been back to work since mid-June, which is going well.  I enjoy what I do, so while I’m tired (trying to readjust to working nights is taking some time), it’s great to have a chance to interact with my coworkers and take on some projects.

Arthur and I got to go to a fundraiser for the local zoo on Friday with his parents and a couple of his siblings.  It’s a sort of local “taste and drink” deal, where many of the restaurants and catering companies in town set up booths with small portions and typically a signature drink or two.  Because I have a terrible sweet tooth, my favorite is the artisan chocolate company.  It was a lot of fun, made more so because the animals were far more active at night than they typically are during the day.

~*~

E is almost finished with speech therapy.  We have one last session in September just to make sure she hasn’t regressed.  I’m not too worried at this point.  The other day, she walked up to me and started talking about the “botanical garden”.  Yep, with the word ‘botanical’ clearly pronounced.  We’ve come a long way from the 18 month who had what the speech therapist termed a “moderate to severe” speech delay.

She’s doing extremely well overall.  Still doing some physical therapy for a few motor issues, but we see improvement and hope that soon enough the gymnastics class I’ve got her enrolled in at our local YMCA will be enough.  We’re gearing up for a minor procedure for E in September due to congenital partially blocked tear ducts, but hopefully that will be her final surgery for the foreseeable future.

M is growing so fast!  Having a term baby after a very premature one is a totally different game.  She’s a happy, giggly baby who smiles and babbles a lot.  It’s strange not to be in a doctor’s office on a regular basis and to watch her outgrow clothes at an absolutely (to me) extraordinary rate.

~*~

Arthur and I scheduled a consult with Dr. E to discuss our two remaining embryos.  We aren’t anywhere near ready to make a final decision, but we need information to make some of those decisions, time to potentially save up financially, and a discussion of what’s even possible or advisable at this point.

~*~

We’re starting to make appointments to prepare for a house purchase.  We’ve been looking at various neighborhoods, narrowed what we are looking for, and decided on a couple of financial institutions to talk to for the mortgage.  It’s both daunting and exciting to get to this point.

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Bittersweet

When E was about six months old, I organized and decorated her room.  It was, literally, the only room in the house at that time I’d managed to do anything in remotely resembling organization.  The whole project had gotten kicked off with me wailing at Arthur one day about how I “hadn’t even gotten to put together the nursery” before I’d gone into the hospital and then had been too busy in NICU to even try to deal with it.  From there, we’d had oxygen equipment for months (even after E had stopped needing oxygen, our doctors had us keep the equipment a bit longer just in case) and needed a place to put the apnea monitor.  All this meant that the room was beautifully arranged to fit the monitor and oxygen equipment, but not really optimally for living without them.  We’d recently gotten rid of both the oxygen compressor and the apnea monitor, but the room was, like the rest of the house, a mess.

To placate me, Arthur told me that I should let the rest of the house go for the time being and see if I could work up a way to make E’s room nice.  He’d help with as much as he could and also with the lifting/arranging of furniture.  We decided to make a little bit of room in our budget to get a few things to decorate the room as well.

One day, I found a neat collage frame at a store.  It held six photos, organized around a central photo.  It was a little more expensive than we wanted, but I couldn’t resist.  I bought it and eventually put a photo of E in the center with a picture of us, one of my parents, one of Arthur’s family, one of the twin cousins once they were born, and one of my brother and his girlfriend in the outside frames.  It’s one of my favorite parts of E’s room.

As E has learned to talk and recognize people, Arthur started explaining who the people were in the frames when he was getting E dressed in the mornings.  Or so I found out when E startled me one morning by pointing up at the picture of my brother and announcing, “Unca E-!”

It wasn’t that I minded at all, in fact, it was lovely and I am really glad that Arthur is teaching E who the people in the frames are to her.  It was more that I wasn’t expecting it and it took me off guard for a moment.  I treasured the moment and didn’t think about it again for awhile.

A few weeks ago, I got some photos from my mother that I asked her for and downloaded from her phone, a whole mishmash starting at the beginning of E’s life.  As I was going through them, I found one that made me stop and stare, one I hadn’t been entirely certain existed.  E was born about seven months before my brother died.  He saw her once in NICU and then once in September of 2015.  Only during that September visit did he get to hold her.  At the time, it didn’t seem extremely noteworthy.  I didn’t know if anyone had snapped a photo.

There it was, though.  E hurried over, took one look at the photo and went “Unca E-“.  She made me go back to the photo several times as I scrolled through the folder, even trying to use the touchscreen on my laptop to go back to look at it anytime I’d try to move forward.

It was beautiful and so, so d*mn sad at the same time.

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In Which A Break Turned Out To Be Longer Than I Anticipated

Content note: Pregnancy mentioned

I didn’t set out to take a writing hiatus, but thanks to, well, life, that’s exactly what happened.  Of course, once the hiatus starts, it becomes harder and harder to go back. Where do I even start?

It has, indeed, been a full couple of months.  School has been busy, so perhaps it’s not so much a true writing hiatus as a blogging hiatus as I’ve written a fair amount towards that overarching project of BSN work.  My daughter had a couple of minor surgeries that thankfully went well, but one of which required several all-day trips in a relatively short time period to see a specialist out of town.  Arthur and I both blanched at the horrible election results.  We’ve lived under Pence for the last four years and to say that we’re worried and chagrined would be a gross understatement.  My husband’s work got busy and I changed my job position as well.  As of December 31, I crossed 28 weeks and 5 days pregnant, making me – out of four pregnancies – the furthest along I’ve ever been.  An anatomy scan at 18 weeks showed no abnormalities and that the baby is a little girl.

In many ways, we’re transitioning into a relatively good place family-wise.  Out of the normal has been our default setting for so long – starting with infertility and progressing to miscarriage, job losses, a high-risk pregnancy, PPROM, preterm birth and my brother’s death – that it’s almost a novelty to sit back and just breathe for the first time in about four years.

Sometimes I almost forget that a lot of people in real life we come in contact with these days don’t know the story since we moved in the midst of it and then spent a year in quarantine to let E’s premature immune system develop.  By the time we came out of hibernation, E looked a lot less premature (small, but not abnormally so), didn’t have her wires from the monitor any more, we weren’t in the midst of infertility treatment and then had a welcome, spontaneous pregnancy.  Recently, we were at church, going over future plans for the congregation and I objected to one point that talked a lot about “families with children”.  Which of course, seemed odd given that we are “family with children”.

“What you don’t see,” I explained, “is that we almost didn’t have children.  We did several rounds of fertility treatments and then IVF and had miscarriages.  My water broke at 21 weeks and by almost any calculation of odds, E wasn’t going to survive.  By that time, we were financially tapped out, emotionally exhausted, and if E hadn’t lived, we wouldn’t have had the ability to keep trying or pursue adoption.  We would have been a family of two.”  It heartens me that in that group of people I was talking to, everyone was kind, respectful and interested in being inclusive of family structures outside of the nuclear.

Another moment occurred when we went down to witness my niece and nephew’s dedication ceremony.  As all the parents and adorably dressed babies walked out onto the stage, the pastor briefly talked about the ceremony and then gestured to a white rose placed in the front.  He explained that this was in honor of those who had lost children, struggled with infertility, and for whom this was not a joyous or easy occasion.  While communities – religious or otherwise – still have a long way to go towards true, full inclusion and integration of those who struggle with infertility, do not have children, or do not have the families they longed for, such a gesture was a welcome sign that perhaps someday those changes may come with work and determination.

At these moments, I found myself almost in tears both times.  Certain aspects of infertility are slipping into the past for me and yet, others are still so much present in my life.  It informs so much of how I view family, parenting, and life in general.

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 Present

On Tuesday, Mel at Stirrup Queens asked a question as part of a post: if someone could tell you the high and low points of your life – which you could not change – would you want to know? Throughout my adult life I’ve wondered that a few times. About five years ago or so, however, starting when Arthur lost his job while I was finishing nursing school and then through subsequent infertility/loss, I started pondering the question more and more frequently. Most of the time I leaned towards wanting to know.

It’s been a strange year. I spent more time in a hospital gown than any other outfit. The living room is littered with stacking cups, burp rags, and stuffed animals. The As.ics Kay.anos my brother got me started on as a running shoe are kicked underneath the coat rack, the shoes and clutter tangible evidence of the impossible somehow manifested in this year. My daughter survived against all possible odds. My brother did not despite everything in his favor.

There is E, whose very name makes reference to the total surprise of her living. She’s named from a part of The Lord of the Rings, at first because the spot where her namesake grows in Middle Earth was the most peaceful place I could imagine her as we thought she would die. Later, we kept that name, never before on our list, instead of changing to one of the two we’d originally picked because of a moment in the final book where one of the characters asks if there was ever any hope and is answered: “There was never much hope…Just a fool’s hope, as I have been told.”

That’s all we had for her, a fool’s hope through the slow march of days that brightened into viability. If I had known she would live, she would not be E.

I remember when my parents, my brother and his long-time girlfriend, the woman we know he would have married if he had lived, came to see E in the hospital six days after she was born. My brother and his girlfriend brought window clings to decorate the glass doors of E’s NICU room and the incubator, the flowers and frogs and turtles making E’s room a home during her long stay. I brought my brother back and he stared at the baby in the plastic box. “Wow,” he said gently. It was my parent’s anniversary and my mother’s birthday and E’s birth all in the same month, so we went out to eat afterwards. It is a good memory, a memory made all the more precious by the fact that it was one of the last.

If I had known that in October my brother would inexplicably pick up a revolver and leave us, I would have missed it along with countless other moments such as his love of aviator sunglasses or the fact that as much as he sometimes downplayed his enormous affection for the cats he and his girlfriend had, he always had new cat pictures on his phone and would do just about anything for them. I would have missed the opportunities to love and share, because there is no doubt in my mind that if I had known, I would have subtly distanced myself in some sort of misguided effort to lessen the pain.

And he was worth all of it.

I don’t say that lightly. I don’t say that as an “of course”, feel-good moment, something I’m supposed to say. There are days – and will continue to be days – where the ache is so strong the pain feels physical. There are days I simply wish it didn’t hurt so, so badly, days of getting together with my in-laws and seeing their family wholeness that throws the awful brokenness I’m experiencing into sharp relief. It is recognizing the truth in the cliché about being lonely in a room full of people. It is not knowing if or when or how that sadness will fade into something more bittersweet and wistful, more complicated but more bearable.

As 2016 sweeps in, it’s impossible not to wonder what the year has in store. After living this year, I don’t think I truly want to know. Instead, Arthur comes home from work early today. We’ll play with E and nurse the colds all three of us came down with on Sunday. We’ll plan to use the new cheese board for supper and watch The Holiday. We’ll enjoy each other’s company and most likely have one of those nice, prosaic evenings that aren’t distinct memories but rather meld together to form something strong and warm and loving. I’m content to live in this moment rather than looking too far forward.

Happy New Year to all.

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.