I love Flip videos, but they always look like outtakes from "Cloverfield."
It was a month ago tomorrow that we started on this insane side-road that has seen so many emotional highs and lows, I marvel sometimes my wife and I have been able to keep things together psychologically as well as we have.
That's not to say things have been even remotely easy. Even the mere act of waking up in the morning has become a considerable challenge, due in no small part to the fact I simply don't want to wake up from many of the escapist dreams I routinely have.
An example: a week or so ago, I dreamt I opened a silver gift box, inside of which was a golden envelope, inside of which was a picture of a little boy of about three years of age. He looked a lot like my 16-month-old son, but there were several differences, including puffy dark hair. In my mind, I knew the boy was Finn as he would have been as a young boy. I don't know if my mind accurately captured the potential resemblance or not., but it doesn't matter, because that's now the mental image I have of Finn as a boy.
I miss my boy in subtle different ways each and every day. Which is good, because it would be easy to forget about him when dealing with all the other everyday necessities.
Zoey continues in her role as a daily miracle, so much so it's sometimes tempting to think of her as more healthy than she actually is. She is doing fantastic, but she's still only a 1.5 lb human being with her odds stacked to the moon. Even so, she exhibits hints of a personality that seem to indicate she's a strong-willed little spitfire, which is good because she's going to need it.
Reading back through my archives of the past month, I'm struck by just how bleak and grim things really were in those first early days. By comparison, these last few days of January feel almost like a vacation.
Still, I'm eager to turn the page on this month, because it's been, without a doubt, the most difficult and trying January of my life. I hope never to experience a month like this again for the remainder of my time here on earth.
Which I plan on being another 112 years, by the way.
Earlier this week, our 16-month-old son grabbed my watch off the bathroom counter and in short order afterwards managed to break the band. Ordinarily, this would have been only a minor inconvenience, but in our current circumstances it's kind of like having lost the use of my left arm.
After doing a lot of hospital time and juggling meetings with social workers and other personnel this past month, my sense of time has become seriously impaired. I often can't remember what I did the day before, and sometimes, if I manage to take an afternoon nap, I can't immediately recall what I even did the previous morning. Everything merges into one long vigil, with the only real difference day to day being being how I feel emotionally before bed.
In other words, I've come to rely heavily on my watch to keep me somewhat aware of time's passing. Not having it on my wrist these last couple days has driven me to an anxious distraction. I look at my base wrist, and then I frantically scan my surrounding looking for a clock.
For the first time since this experience started, I've found myself questioning what day it is. Weekends are basically exactly the same as any other day of the week, so I don't really have a point of reference for the start or end of the week.
I spent most of today thinking it was Tuesday, and it's a good thing I realized it was Wednesday, because it's trash night tonight, and the Diaper Genie simply HAS to be emptied.
Zoey suddenly decided Sunday morning that she was no longer in need of the oscillating respirator, so she was put back on the regular respirator shortly before we arrived to visit her before noon.
By 9 p.m. that night, doctors had taken her off the respirator entirely and placed her back on a continuous positive airway pressure (CPAP) machine, which is basically a nasal dual prong system that pushes air into her nose, while she provides the actual breathing reflex. She was briefly on a CPAP machine over a week ago, but she had so many apnea spells she became exhausted after a day and had to be placed back on a respirator.
This time, however, she's been doing remarkably well.
It seems so weird a mere 48 hours could witness such a drastic turnaround, but as I said and heard numerous times, these steps forward and back are entirely expected.
One night a few evenings ago, the night shift nurses placed a tiny red ribbon on Zoey's head and took some pictures. The crazy thing about the pictures is they're 3" x 5" photos, and we were given the actual ribbon which, if you place the ribbon over the ribbon in the picture, it's the same size. So, the Zoey in the picture is the same size as the Zoey in a 3" x 5" photo, which drove home for me once again how entirely small she is.
My home office desk is littered with hospital visitation stickers, and the garage is littered with parking ramp passes. . . and it's not even the end of January yet.
It feels like all this started eons ago. And yesterday.
"Life is like a box of chocolates; you never know what you're going to get."
True enough, but you can reasonably expect, with a box of chocolates, you're not going to bite into one and have it filled with. . . well. . . with what the last month has entailed.
Yeah, I had a bad day. Zoey's fine. I'm just exasperated.
Zoey had to have an alternative line run up through her femoral artery and into her heart last night. It's one of those procedures that's practically hum-drum routine when conducted in adults, but with preemie babies it's like trying to thread a needle with barn rope.
The alternative line was necessary because the lines through her navel increasingly become infection hazards the longer they're left in, so it was one of those procedures we knew was inevitable.
And it was also one of those procedures I just could not bring myself to watch. It's the damndest thing. I can stuff gauze into my wife's gaping c-section wound. I can ram a sewing needle into my own ear cartilage to relieve cauliflower ear. I can peel dead skin off my foot and slap it against my own face, as per "The Phantom of the Opera." But, I can't watch professional doctors make an incision in my preemie daughter and thread a line up her leg. It's a mental roadblock I just can't get past.
For her part, Zoey didn't care for the procedure, so the doctor kept upping her sedation medications to calm her down. Try as he might, however, Zoey just kept fidgeting and fighting, until the doctor had to resort to some serious knock out juice.
As he said later, after a successful procedure: "All that medicine could have put a bear to sleep."
I learned tonight that redheads make for tricky anesthesia. Although Zoey currently has no discernible hair color, my wife is a redhead, so Zoey may have tipped her hand, so to speak.
Zoey's doing well tonight, although she's back to fidgeting, and her fidgets always make me uncomfortable, because her fidgets make her look very uncomfortable.
This girl is going to have me so wrapped around her littlest finger.
Even though I've only graced this planet for 35 years, I have nevertheless, in that short time, experienced a perpetual onslaught of news and other reports calling attention to the impending doom of our world and its inhabitants.
Unfortunately, I only caught the tail end of the nuclear arms race, which I've always regretted somewhat. I mean, that world-ending scenario must have at least felt real and tangible. The idea of stepping outside one morning to grab the newspaper and seeing a mushroom cloud in the distance has always struck me as something I really missed out on. I mean, can you imagine? Grabbing a "newspaper?"
In comparison to a nuclear holocaust, the world-ending predictions I've been exposed to over my lifetime seem almost tame by comparison. Whereas a nuclear holocaust must have had an air of immediacy to it, most planet changing events I've been told to worry about all seem to have time lines that extend out 20, 50 or even 100 years or more. Who has time to worry about things like that?
Of course, the hot button planet-changing phenomenon that's had everyone taking to the fainting couch over the past decade or so has been "global warming," which of course has morphed into "global climate change," which is a far more encompassing term that better takes into account cold snaps and record-setting snowfalls, which scientists just got plain old tired of trying to explain because it involved imaginary numbers and long division.
The primary culprit driving global climate change, according to scientists, is carbon. In the scientific community, carbon is considered such an evil pollutant, they refer to it as "Satan's Feces." Supposedly, the science says, burning carbon creates a noxious and dangerous layer of airborne pollution that has all sorts of harmful effects for planet earth. In response to this dire calamity, scientists, politicians and activists worldwide have been attempting to curb humanity's insatiable thirst for all things carbon.
However, I saw a television commercial the other day that made me seriously doubt carbon's perceived detrimental planetary effect. The commercial was advertising a new type of cat litter, so I took special interest, because I've always held to a strong philosophical belief that "as goes cat litter, so goes humanity."
Anyway, the cat litter being advertised was "Fresh Step Scoopable Litter with Odor-Eliminating Carbon." That's right, folks. . . ODOR-ELIMINATING CARBON. Here scientists have been beating people over the heads, insisting carbon is to blame for all our global climate change woes, and yet they failed to mention even once that burning carbon is the equivalent of spraying Glade to combat bathroom odor.
So, after all the "carbon is evil" propaganda of the last dozen or more years, we discover cat litter manufacturers have been using the supposedly evil element to develop feline odor elimination litter granules.
Now, as we all know, if there are animals on the planet that take environmental causes seriously, it's cats. Therefore, if cats are perfectly okay using carbon to mask their more sour feline odors, then maybe human beings shouldn't feel quite so guilty about using carbon to better our every day lives.
If you doubt my logic, try a little experiment. The next time a climate change scientist claims burning carbon could lead to higher global temperatures and rising sea levels over the next 50 years, you should stand up and shout "Oh yeah?! What about the cat litter, smart guy?!!!
I can practically guarantee he won't have an answer for you.
Today, in addition to trying to slog through a 1,500 word freelance article--due tomorrow afternoon--I also put the finishing touches on my newspaper humor column and sent it for publication next week.
Writing a humor column can be a challenge in the best of mental states; writing my most recent column with the haze of all the current drama playing out in my mind required flipping a mental switch I didn't realize I even had. Granted, it wasn't the funniest thing I've ever written, but considering everything, it wasn't that bad.
Freelance writing and editing is another beast entirely. Toggling between home responsibilities and then trying to focus on technical material is downright painful; it's like having the worst case of writer's block imaginable while simultaneously being slapped in the face by invisible hands. It has to be done, though, because it pays the bills.
Or, at least it pays the bills as I've known them up to this point. Eventually the medical bills will start flowing in, ushering in a new financial reality that will have me sustaining myself on ramen noodles and government cheese. I'm not sure what my wife plans on eating. Maybe we can get our 16-month-old son interested in breast milk again. It's all about keeping options open.
Gradually, it's starting to feel as though I live in hospitals and, as clean and orderly as they are, I can't help but get incredibly tired of the hallways and wheelchairs and omnipresent beeps, dings and other ambient noises.
Today, my wife went in to the O.R. to have her c-section incision sewn back together.
Finally.
A less exasperated writer could no doubt ascribe some great metaphorical importance to this development; perhaps noting the closure of the wound from which all this drama emerged denotes a possible end to the constant string of unfortunate events of the past month.
Whatever. I'm just glad I no longer have to stuff that damned wound with gauze every morning and evening. If my wife will be able to pick up our 16-month-old son and drive a car in the next few days, well that's all the better.
Our little daughter continues to defy the ridiculous odds set against her, although her lungs remain very sick and fragile, requiring a delicate balance of steroids, O2 and respirator pressure to carry her from day to day. Other than that, her numbers are strong and she regularly opens her eyes when she feels someone touch her hand or shoulder.
As much as I like seeing her open her eyes, I can't help but notice how exhausted she seems when she looks around her incubator environment. It's hard to explain exactly what I see, but it's almost as if she's thinking "Oh, not this shit again."
And really, if that is what she's thinking, I can't say I blame her, because it looks like a pretty monotonous existence with Herculean hopes and expectations being placed on her miniscule body and mind.
When we eventually bring her home, she's going to totally rule her mother and me and get pretty much whatever she wants whenever she wants, because holy crap she'll have earned it.
If there's one thing that invades my dreams more than anything else these days, it's the constant beeping and dinging sounds of the neonatal intensive care unit (NICU).
There are always alarms going off somewhere for some baby. Most of the alarms are minor notices indicating O2 levels are too high or too low, and those alarms usually ebb and flow without much excitement on the part of the nurses and doctors; it's just the everyday harmony they've grown to expect in the NICU. For me, on the other hand, each bleep, ding or buzz is cause to swallow my heart back down my throat.
I'll admit I've gotten more used to the alarms, and I'm starting to discern which are common and which are less so, but they all leave me slightly stricken because they are, after all, alarms, and alarms by and large have been a source of concern throughout my life.
I've become so attuned to some NICU alarms, I can actually tell which are emanating from Zoey's room, even when I'm down a hallway some 50 feet away; the automatic doors to the NICU swing open and right away I can hear the chorus of beeps and dings and my ears know just which are trumpeting forth from Zoey's room. It's almost uncanny.
I imagine, if Finn were still alive in the room next to his sister's, I would also have developed an ear for his unique rhythm. As it is, I only have the memory of his nearly constant orchestra of foreboding alarms. The theme for "Jaws" had nothing on the sound of Finn's vital alarms going off almost in perpetuity. By comparison, Zoey's vital alarm score could be the theme to "Brian's Song."
It's surprising just how those beeps and dings have worked their way into my subconscious. I can fall asleep in front of the TV, and a certain note in a certain song or background noise will wake me bolt upright.
I'm like Pavlov's dog, without the eventual treat.
Today was a good day. No drama either way. So, I think I'll just take a break tonight.
Lest you start thinking my life is a constant din of grim resolution and sadness, I must point out there are little glimmers of happiness, such as today when Aiden donned a toy stethoscope and crawled into his toy box, for no apparent reason beyond the fact it seemed like a fun thing to do.
We received a call from the NICU at 5 a.m., which by itself is enough to make my brain go into over-imaginative hyper-drive. I've grown to dread NICU calls, but calls coming in at 5 a.m. are almost guaranteed bad news. Somehow, I just don't think a 5 a.m. call will be to inform us our daughter has developed the capability to poop solid gold nuggets, thus drastically helping pay for her medical bills.
No, this morning's call was to inform us Zoey had to be placed back on the respirator, since her sleep apnea spells were occurring too often and the little girl was, frankly, becoming exhausted.
This kind of news always seems to come with the proviso that steps back like this shouldn't be seen purely as a negative. Nurses and doctors routinely remind us each preemie baby situation is different, and no one care template works for any two babies. It's all just a great, grand balancing act with expected steps forward and back.
But it's all annoying and frustrating, regardless. I could reassure myself 100 times each day that Zoey going back on the respirator isn't necessarily a bad thing, but it just underscores how insanely precarious her situation is day-to-day, or even hour-to-hour.
We sat down with a social worker today who started us down the additional seemingly impossible path of paying for all this medical miracle work. At the end of the meeting she asked how we were coping, and then she suggested we try to work out a schedule to help us better sleep and recuperate.
It's good advice, at least as far as the words go, but putting together such a schedule seems laughable on its face. In the first place, my wife can't drive until her c-section incision heals and, speaking as the guy who dresses that gaping wound every morning and evening, I don't think she'll be driving any time within the next month. Therefore, getting to the hospital is basically an impromptu family affair, unless we manage to secure a babysitter, which is itself a rather murky undertaking. Each day has so far been a remarkable exercise in improvisational logistics.
Sheer exhaustion is another major player in all this. I managed, at most, about 45 minutes of sleep last night, and what sleep there was was haunted by incubator dreams and Finn's passing, to say nothing of the financial calculations ringing in my head in a seemingly endless stream. Focusing on actual freelance writing work when I can steal away even for an hour is almost an exercise in futility.
We have to remind ourselves daily that the last couple weeks and the upcoming three or four weeks have been and will be the hardest of this whole ordeal. Gradually, things simply have to get better. When I think back to the first three days, it's almost downright shocking we managed to pull ourselves through that inky blackness. I'd likely remember it all only as a blur of activity and emotion if I hadn't written it all down while it was still fresh in my mind.
Hopefully, tomorrow will begin with good news. If not, it's not like we haven't had a lot of practice dealing with the alternative lately.
I managed to take a nap for about an hour today. I should have been writing a freelance article, but in exhaustion-heavy days such as those of the past couple weeks, you take sleep whenever your body allows or demands.
I had a very, very vivid dream. It was so vivid, in fact, I was somewhat surprised to wake up and realize it actually was a dream.
In the dream, I was in the neonatal intensive care unit (NICU) hospital wing, and every room, corner, desk and doorway was exactly where they actually are, but there was no equipment of any kind, anywhere. Every hallway, room and open space was completely empty. Only the walls, windows and doors remained. And there were no people to be found, either.
I just roamed from empty room to empty room, vaguely curious where they moved my daughter, but mostly I was sort of enjoying the open, uncluttered quietness of it all, with only my footsteps echoing in the caverness spaces.
As with most dreams I can actually remember, I've spent time on and off today trying to make sense of the dream, but mostly I think it was just my subconscious trying to strip away all the NICU noise and activity and exist in that place in open solitude, if only for a short while. It must have been some sort of mental coping mechanism, because I did feel a bit less stressed following the dream.
It's one of those things: I know I dress my wife's C-section incision better, more thorough and with more care, but my wife still prefers having a strange woman with a drawl come in and do it for $$ because she's considered a nurse and who says reassuring things. For some reason, saying "of course it hurts, it's a wound like Goldie Hawn's in "Death Becomes Her" doesn't reassure her. Women.
Today, while playing with my 15-month-old boy, Aiden, Finn's hospital birth bracelet tore and fell off my wrist.
It's one of those things some people would ascribe great meaning or symbolism to, but I'm not necessarily one of those people. Of COURSE the bracelet tore; it's been on my wrist for 11 days for crying out loud, including showers and clothes changes. If anything, it's surprising it lasted as long as it did.
That said, seeing it off my wrist for the first time brought a lot of the pain and sadness back, if only very briefly, because I had come to rely on the bracelet almost as a sort of talisman when visiting Finn's sister, Zoey, in the NICU following Finn's death.
The last several days have been the most emotional, difficult and unexpected of my entire life, so I tend to cling to things that represent some sort of familiarity and order, as well as items that tether me to things lost. Finn's bracelet provided all of that, so going into the NICU wearing it almost gave me the feeling I was somehow still visiting Finn, too.
And yet, I was able to visit Zoey this evening and still imagine Finn being there as well, so some crutches really aren't necessary forever, even if they help get me through some of the toughest times.
Today marked a milestone for my daughter, Zoey, as she made the transition off the standard respirator, and she seems to be responding well. This could change within the hour, of course, since all progress should be acknowledged with the understanding things can occur requiring a rollback. Just as Zoey had to briefly be put back on an oscillating respirator earlier this week so, too, can she again require the regular ventilator.
For now, at least, there's a brief window of time to sit back, sigh, and just enjoy this bit of good fortune floating in the sea of bad luck sewage that has been the hallmark of the last week and-a-half. The way things have gone, I wouldn't be surprised to learn her NICU room is constructed entirely of asbestos, thus increasing her risk of mesothelioma or something.
Unfortunately, the tragic turn of events that greeted us at the end of December, as well as the gaping hole left in our lives by Finn's passing, has numbed my wife and me considerably when it comes to the sheer medical miracle that Zoey is still with us and fighting strong. We've been so mired in grief and sorrow, the everyday fact of Zoey's continued existence almost seems like it's the least fate could give us. Nay, owes us.
But, she is alive. And, it is rather miraculous.
She was delivered via C-section at a paltry 1 lb. 4.5 oz. I like to use the analogy of her being the size of a TV remote control, but that doesn't really convey the reality. Her tiny size didn't register for me until I saw her footprints alongside the footprints of my first son, Aiden, when he was born at 8 lb. 15 oz. The difference is truly staggering, like Andre the Giant next to Vern Troyer. And I remember thinking, 15 months ago, how the hell we were going to keep AIDEN ALIVE.
The delicate balance of drugs, medications, fluids, oxygen and general environment required to keep a 24-week old preemie alive is ridiculously complex. Each time I visit Zoey, I have to practically squint past the banks of machines and monitors to see the little wriggling putty of flesh that is my daughter.
The first five or six times I visited the twins in their incubators, I wept uncontrollably, because it honestly didn't seem possible anything could keep them clinging to life for the next four days, to say nothing of the next four months. This pessimism was not helped in the least when Finn died within two days. If anything, Finn put an exclamation point on the seeming impossibility of it all.
And yet Zoey is now breathing on her own, and I can't help but root for the little spitfire. I mean, she was obviously frazzled by the transition, but in a completely inadvertent flail of her arms today, it almost looked as if she was flipping something off. Possibly the odds.
Preemie babies are obviously dealt a supremely shitty hand, and the earlier they arrive, you're practically praying they're holding onto at least a pair of twos.
And yet, something remarkable happens. The lungs, which are about the most undeveloped organs in their whole bodies, can somehow be persuaded to kick things into developmental gear. It's not an exact science, but the organs that are normally one of the last ones asked to perform can be coaxed from the bench and perform a game-saving series of plays that can make even the most die-hard pessimist hope, optimistically, for a victory. Preemie lungs are the Detroit Lions or the Cincinnati Bengals, or an expansion team.
Today was a good day. A much-needed good day. For all of us.
Tomorrow? Who the fuck knows?
But, you know what? I'm hopeful, and that's huge. At least until I'm informed about the NICU asbestos and mesothelioma thing. I kid, I kid.
Ugh.
If I may switch gears just for a bit here. May I? Please? Oh thank you so very much.
I've only just recently become aware of the latest government attempt to push a dollar coin on an American public that has steadfastly refused such coercion since, roughly, 1928.
The Susan B. Anthony dollars of 1979 were a mistake, admittedly. They looked too much like a quarter and, even one experience paying $1 for something that only costs 25 cents is one time too many.
So, the government borrowed an idea from our neighbors to the North--Canada, for the slow kids on this blog--and released gold-colored Sacajawea dollars, which were largely used as a creative way to make a $5 graduation donation seem somehow flashy.
As low as the government set the dollar coin bar, you'd think they would have made at least some attempt to surpass their previous failures but, no, the current dollar coin iteration makes one pause and consider the artistic mastery of Monopoly money by comparison.
How serious am I? Several months ago, my wife and I stopped by a automobile sales event that proclaimed they were giving out "GOLD COINS," so we thought we'd see what the scam was. The dealership gave us both two "GOLD COINS," and I honestly thought they were some sort of cheesy fake promotion, so I just tossed them in a drawer when I got home and thought nothing else of them. I mean, jeezum crow, I've seen arcade tokens with better design.
Then, last week, I received three similar dollar coins in vending machine change and I thought "Huh. Maybe these things are legit," so I looked at them a little closer, and the closer I looked the more annoyed I got.
Understand, I used to collect coins, so there are certain things I look for any time an unusual coin lands in my hand. One of the first things you look for is the year it was minted, followed by locating the mint mark indicating the city in which it was struck. I searched my first new dollar coin for these telltale clues and simply could not find them, and it wasn't until I inspected the next dollar coin that I understood why.
Apparently, the geniuses behind the new coin design decided to put the year, mint mark and the phrase "e pluribus unum" on the EDGE of the coin, in impossibly thin and shallow lettering. The reason I couldn't find the year and mint mark on the first coin was because. . . they had been worn off!!! That's right, two of the most important coin designations--at least for coin collectors--are located on the part of the coin that undergoes the most wear. This is like putting a license plate on the wheel of a car.
I also noticed the word "LIBERTY" was nowhere to be found, which is a staple on any coin you normally carry in your pocket. I learned, after a little research, the world LIBERTY was deemed unnecessary because the Statue of Liberty appears prominently on the coin, so the LIBERTY is "understood." This struck me as a strange bit of logic, considering "UNITED STATES OF AMERICA" is splashed quite visibly as a banner over Lady Liberty. I mean, using the previous logic, UNITED STATES OF AMERICA should just be understood, because there's a previous American president on the front and the Statue of Liberty on the back. It's all just so OBVIOUS.
Anyway, I find the new dollar coins annoying for these obvious reasons, but also at a more asthetic level. Consider:
Seriously, which one would you be more proud to carry in your pocket?
As I mentioned previously, I recieved a call just before 5 a.m. Friday morning informing me my wife's c-section was infected and had ruptured, so right away I knew our stellar run of luck over the past couple weeks continued to bless us in myriad ways. If I get a call informing me a meteor struck our garage and killed a cat, I'd actually consider that sort of good news/luck because, you know, one less cat.
Thankfully, my father-in-law had been informed of the situation and he arrived at the house just as I finished showering and preparing for the day. While the gout wasn't quite as debilitating as it had been the previous day, I was still opting to hop on one foot rather than put any weight on the swollen club at all. The slightest bump against my toe hurt so bad I could see through time and yell expletives so loud the International Space Station had to filter it all out.
My wife had been in the ER, but they were informed professionals from obstetrics wanted to look at her, so she was being transferred across town to the very same building all this drama began almost exactly one week earlier. I travelled downtown, parked in a nearby ramp, and then did my best foot-dragging Quasimodo impression from the ramp to the hospital building. Once in the hospital, I said "screw it" and commandeered a wheelchair.
I actually arrived at the hospital room before my wife was transported, and she arrived about 10 minutes later sprawled out on an ambulance gurney. A nurse asked to see her ruptured incision and. . .
I consider myself somewhat of an expert when it comes to smells. I can create smells some people consider vile beyond comprehension but, I have to say, an infected and ruptured c-section incision carries with it an odor so pungent with rot, I would rather have been taking in deep snootfuls of a pile of dead puppies.
Doctors quickly concluded they had to open up my wife's incision entirely and drain any infected abscesses, which really helped dispel some of the glamour I may have held regarding being a doctor. Sure, the money is probably excellent, but locating and draining horrid-smelling abcesses probably isn't high on their "can't wait to do this one" list.
On the plus side, my wife required considerable sedation, which meant she would be getting some much-needed sleep. Her maternal instincts have been in overdrive since the twins arrived--and particularly since Finn passed--so telling her to look after herself and get some rest is like telling a chipmunk to fix an atomic clock. So, as the doctors prepped my wife for abscess-cleansing surgery, I dragged myself slowly back to the parking ramp, drove home and managed to get a couple hours of sleep myself before heading back to the neonatal intensive care unit (NICU) to check up on my daughter.
One of the first things they tell you at the NICU is to expect ups and downs. They also told us to expect the first 24-hours to be a kind of honeymoon, since preemie babies typically don't show distress until after the first day. With Finn, the news was pretty much all down, even during the honeymoon period. His lung x-rays immediately showed worrisome signs, and they only got worse and worse until, well. . .
Zoey, on the other hand, has been remarkably stable, although her x-rays have shown cloudiness and, on a couple occasions, a collapse of the upper lobe of her right lung. These things fluctuate considerably, and my wife and I have to remind ourselves the doctors will definitely tell us if there's anything truly warranting concern, as they did when informing us of Finn's condition. We have to take it on faith they're not shielding us from truly bad news.
After checking on Zoey and being assuaged by her condition updates, I went back to the obstetrics hospital to check on my wife. She was still groggy from the medications, but otherwise she felt okay. I was informed I'd have to stay to watch the nurses change her incision dressings because--and this part is key--I'll be expected to change the dressings at least once a day for the next several days. Mind you, this isn't just plopping a band-aid over a boo-boo. This will entail reaching into an open incision and stuffing gauze and other absorbant medical wonders into the wound as if I'm preparing a Thanksgiving turkey. I'll do it, of course. Willingly even. But damn it, I sure as hell don't have to like it.
I returned home, but not before stopping by a grocery store to pick up milk and cranberry juice. My father-in-law used our car last week a few times, so he placed his handicapped placard under the passenger-side visor. Now, I would never have used that placard if I could have walked normally, but I saw the placard, looked at my swollen foot and said "You know what? Screw it!" I'm hoping that small act of moral failing won't doom us to an extension of our current string of bad luck.
Thrown unfairly into all this drama, of course, is our 15-month-old son, Aiden, who up until last week lived a life consisting largely of structure and schedule. All that's been thrown into the toilet for the time being as we rely on a rotating cast of family members to watch and care for him during the day. In the early days of our ordeal, he seemed genuinely confused by the turmoil, but now I suspect he's learning how to play the various characters against each other to obtain what he wants. He's been eating foods and has had access to juice and other drinks my wife and I would never have given him before the Dark Times. . . Before the Empire.
Obviously, the financial questions regarding all of this are many and varied. My wife has excellent health insurance, so she's largely covered, and Zoey should be covered by a tangled Web of government programs and charitable organizations. Because Finn didn't live very long, he didn't qualify for the same assistance as Zoey. It's all very confusing and daunting. I have to sit down with a social worker to hammer out all the details, but that's something we'll do when things settle down a bit and I'm actually able to walk again. Until then, my thinking has basically consisted of "screw it!" Another ambulance ride from the obstetrics hospital to the NICU? Screw it! Whatever! Milk pumping equipment? Screw it! Add it to the tab!
I imagine this is how the government has basically gotten into the deficit and debt mess it's been roiling in. At some point, they got so far behind, actually doing something about it was just plain impossible so politicians just collectively threw up their arms and yelled "SCREW IT! ADD IT TO THE BILL! WHATEVER! IT'S NOT LIKE WE CAN ACTUALLY DO ANYTHING ABOUT IT!"
So, yeah, things continue to unfold in strange and unexpected ways, in an ongoing drama I never remotely thought I'd personally experience. I try to keep a sense of humor when I can, although there are times, particularly at night, when I think of the family of five we'd been making plans for for the last several months, and I just break down, because they were pretty great plans, and it was a pretty great family. Now we exist in a kind of world where we try to make plans day-to-day, assuring ourselves Zoey will come home with us in four months, although in the back of my mind there's a small voice reminding me she might not. I do my best to shoo that voice away, but it's persistant, particularly when I see her tiny self in her incubator.
But then she grips my finger, and I can't imagine her being gone.
The funeral for my son, Finn, was held Wednesday, Jan. 5. I can't say it was some sort of overly emotional experience because--as my wife pointed out--it's hard to get much more emotional than actually holding your child as he dies. So, the funeral was just a small, brief service, much like his body and life. He was later buried at the foot of his great-grandfather's grave.
I had never before had to request the services of a funeral home and, quite frankly, I found the whole experience rather daunting at first. Shortly after Finn died, we were handed a list of local funeral homes and, while the names were familiar to me, I had no direct dealing with any of them, except joking they all "put the FUN back in funeral."
I did, however, remember writing a news article more than ten years ago when I worked at a weekly newspaper in a nearby town of about 5,000 people. In the article, I wrote about how the elder patriarch of the local funeral home was officially handing the family business over to his son. It was a tenuous connection, at best, but it did provide some semblance of familiarity, so I called and asked for their services.
My funeral home choice turned out to be a good decision. They recognized my name, and they remembered the article, so we at least had that level of commonality to work with, which was a relief.
My wife held Finn during the service, and I was struck how different he looked from the wriggling mass I saw removed from wife's abdomen and, later, hooked up to more wires than a switchboard. In those instances though, he was alive, clinging to whatever fine fibers he could find to keep him anchored to this world. His skin had movement and purpose, and his veins were pulsating and alive.
In my wife's lap that morning of the funeral, he looked somehow sculpted or molded, as if someone switched out my son for a wax model of what a 23-week-old fetus is supposed to look like. Indeed, Finn looked, down to almost every detail, like a picture right out of the "A Child is Born" book I thumbed through so much as a child. Except, even days later, I could still see my son peeking out from behind it all. Still, it was as if you could plug him right back into a womb, sync up the umbilical cord and say "okay, we'll see you again in four months."
But, we won't. He's in the cold, hard winter ground now. At least his body is, although I suspect his soul is still sticking around for spring, at least so Finn can be assuaged that my wife and I hadn't planned on raising him in a frozen assland.
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The next morning, the relatively mild case of gout I had been feeling the previous day had blossomed into Audrey II from "Little Shop of Horrors." Every step felt like I was trying to drag my left big toe through the house with a pick-axe embedded into the toe and the floor. Oh, and the pick-axe was dipped in acid and Alien blood, just to round out the mental image.
Considering all the stress I'd been under, coupled with a diet that could only be categorized as "borderline suicidal," I wasn't particularly surprised to develop physical manifestations of the emotions and wear I'd been experiencing over the previous week.
Generally speaking, Thursday, Jan. 6 was a non-day for me, as I spent the time sleeping, drinking copious amounts of water, and dragging myself around the house on my buttocks. Back in college, that would have been considered a fairly successful Sunday afternoon.
My wife, on the other hand, managed to pull herself together and go to the hospital to visit our daughter, Zoey, before the afternoon arrived. She spent the day at the hospital, and then called around 5 p.m. to tell me she would be staying there because Zoey had a tough night ahead of her, ventilator-wise.
Come 5 a.m. the next morning, I received a call informing me my wife's C-section incision was infected and had ruptured. And so began the day that will live in . . . limp-famy. Or something like that.
My father was a sex ed teacher, which meant I had somewhat of a leg up, so to speak, when it came to my understanding of the birds and the bees.
For example, in fifth grade, when my father came to my class to give a one-day sex ed class, I wasn't entirely surprised when he drew a huge phallus on the chalkboard and announced to all in attendance "This. Is the Jolly Green Giant's penis." I'm sure it was one of those lines he used countless times with scores of fifth grade classes before and after mine, but it was probably one of the best ways to capture and hold the attention of thirty otherwise rowdy elementary school students.
Back on the home front, in my father's library, there were several volumes dedicated to the human reproductive system, and no one book consumed my curiosity quite like "A Child is Born." That book amazed me, and not just because it featured pictures of female nipples and a woman in stirrups pushing a human head out of, what I thought at the time was her butthole.
As I grew older I started to understand the images and gestation process much better, although I must admit I was slightly disappointed to learn babies don't get pushed out of buttholes. Growing up is chock full of disappointments like that, I suppose.
Flash forward to college, where I took a handful of entirely useless philosophy classes, but which nevertheless introduced me to the philosophical concept of the "slippery slope," as opposed to those "sticky slopes" I suppose. The slippery slope was particularly applied to the concept of human fertilization and reproduction, and in particular at what point a human becomes a human. The slippery slope was always factored in to keep the philosophical argument going further and further.
In other words, if fertilization was decreed to be "when the egg and the sperm" meet, the slippery slope argument would say "well, what about half a second before that? And, if half a second before that applies, why not a half second before that?" And so on and so on until you found yourself basically arguing masturbating into a sock could theoretically be considered fertilization, philosophically speaking.
In retrospect, I wasted a lot of time and money in those philosophy classes.
Anyway, as bad as those philosophy classes were, they did engender within me a certain crude moral framework when it came to my concept of human fertilization and abortion. I mostly considered abortion to be an acceptable option provided it occurred within the first trimester, and that rough idea held fairly firm for over a decade.
Flash forward to Thursday last week, when my wife went into premature labor at only 23 weeks into gestation. A doctor informed us, medically speaking, 23 weeks is considered sort of a gray area when it comes to the concept of fetus "viability."
If, for example, my wife had been 1,000 miles away from any medical facility and had given birth in the desert, with no hope of medical care, it would have been considered a miscarriage. If, on the other hand, the babies had undergone a C-section but neonatal intensive care hadn't been available, it could have been considered an abortion. However, because neonatal intensive medical care was available, the babies were considered "viable."
I'm not sure, philosophically, what all this potentially meant, but I've been thinking about it off and on over the past week, and I can't honestly say I know what to make of it all.
Certainly, both my son and daughter had access to exactly the same neonatal intensive care, yet my son succumbed after two days while my daughter is still defying the odds. Was she somehow more viable, even though she was born three ounces lighter? What if all of this had happened one day sooner, or one day later? How would the viability have been affected then?
I can't say I know the answer to any of these questions, but it does call into question my somewhat arbitrary rule that abortion is acceptable during the first trimester, because it simply begs for a more thorough explanation and, given the events of a week ago, I honestly don't think I could adequately supply one.
Keeping vigil over a premature baby's ongoing fight for the right to stake a claim to life in our world is a curious exercise, and it's one that's completely different for men and women, or at least that's been my observation in these few days of waiting, hoping and praying.
My wife is glued to the incubator from the minute we arrive in the neonatal infant care unit (NICU) to the absolute second we have to leave. Her motherhood instinct is so strong it's almost as if she's shielded by her own protective incubator that somehow fuses to the baby's and can only be uncoupled by debilitating exhaustion or incessant doctor prodding.
I'm more of a fluttering moth, to use a terribly flawed analogy. I'll come into the NICU, greet my daughter, let her grasp my finger for a few minutes, absorb the appropriate information about her current condition, but then I just can't keep staying there. It's like watching the most compelling dramatic television show you'll ever see in your life--like Twin Peaks--but because you feel you can't do anything to affect the outcome, you feel compelled to walk away and do something else, coming back later to get caught up, touch the story, and then wander off again.
I like exploring the hospital, particularly at night. There's a certain nocturnal rhythm I find deeply relaxing. There's the cleaning crews vacuuming, and the occasional late night pow-wow at a table nearby, from which I can overhear snippets of office politics or mind-numbing presentation analysis.
I also enjoy hunting for banks of soda and snack vending machines, trying to find those particular machines that offer somewhat unique confections, like ice cream bars or garlic and sea salt potato chips. I don't necessarily buy these items, but discovering them gives me an odd feeling of acccomplishment, like I've found a recently-deceased mammoth the tribe could potentially bring back to the camp for a great feast.
Obviously, I also try to hunt down unoccupied public computer stations, where I can sit down and write Facebook missives, or log on to my blog to put down some thoughts that strike me as interesting somehow. For every post I publish here, there are probably eight that remain in non-public "draft" mode, existing only for me and possible further exploration later.
Always foremost in my mind, however, is my daughter and what's transpired so recently to bring me here. She was born so much smaller than her brother, and I'm slightly ashamed to admit, when I first saw them, I thought my boy looked more likely to soldier through the months long ordeal set ahead of them. As it's been, however, my daughter has patiently endured the storm so far while my son yielded the stage to her silent and steady resolve. I don't begrudge this fate, though I certainly don't have to like it; they both deserved to share the stage and shine as bright as they dared dream.
But, that's the "should have" in my mind. Reality has dealt me something far more complex to unravel, something I never thought I'd ever have to confront, and it's something that has me wandering hospital halls while my wife sings songs to and worries over our daughter's every fidget, every machine beep and nurse action.
I'm comfortable getting the positive update, holding my daughter's little hand, calling her "sweetheart," and encouraging her progress, before leaving the room to hunt down a vending machine with bacon and sour cream Tater-Skins.
I don't think this makes me a bad father; just a father who has recently undergone something he doesn't want to experience again unless he absolutely has to.
I knew Finn Patrick Rhodes for almost 50 hours which was, ironically, about how long my wife was in labor with our first son, Aiden. Finn's labor, in comparison, was relatively short at about six hours, only 23 weeks and five days into gestation.
We were told we may only get about 20 minutes to get to know our son, but then he went and lived over two days, which we considered an amazing if nevertheless short gift from him to us.
I like to think Finn was a fighter, and in fact the record clearly shows he was just that. He went far more rounds than the experts thought possible, so I think he's earned a rest, although I still miss him horribly.
His lungs were never really up to the challenge set before him, and an eventual brain bleed probably gave him the cue he was awaiting to leave the ring.
In the end, I was the one who threw in the towel.
My wife and I were summoned from our hospital room at 7:25 p.m. on Jan. 1, and told our son was in deep respiratory and cardiac distress. When we arrived at his incubator, a team of doctors and nurses were huddled around him, trying to save his life.
Even the relatively modest chest compressions of a forefinger and middle finger may just have well have been a sledgehammer to his impossibly tiny chest. Having learned how easily premature babies can bruise, I could only imagine the trauma Finn was experiencing.
Over and over again, my wife was asking, anybody, if we should be allowing this to continue, but ultimately the only people who could answer that for little Finn was us, and after 15 minutes of chest compressions, I implored a stop to the resuscitation efforts, which will very likely go down in my mind as the most controversial call I'll ever make.
Chest compressions stopped and life support was halted; little Finn was placed gently in my wife's arms, and she rocked him as the last few reflexive gasps mimed from his resigned lips.
And then he was gone. . .
My wife and I bathed his impossibly tiny body, put lotion on his bruised and battered skin, and then I dressed him in a white one piece outfit and hat that left him looking far more peaceful and serene than I thought possible after the trauma and heartache of his last few minutes of life.
Somewhere inside, I'm a deeply changed person, although I can't tell you in exactly which ways, but I can feel it beneath my skin as though lightning itself is coursing through my blood. It's heartache and longing and grief, and even joy, love and relief all rolled into an emotion without a name of its own.
Finn Patrick Rhodes, you are loved and you are missed beyond measure; by your mother, your twin sister Zoey, your big brother Aiden, myself and everyone you've touched here and beyond.
I love you.
Dad.
