Rambling Rhodes

1/4 a Year

I simply haven't had time to post about the ongoing NICU experience lately. On the one obvious hand, there really is no NICU schedule cut in stone day-to-day; we throw it all together at the last minute, much like a "Family Guy" episode is created. So, finding time to blog is like asking Paris Hilton to expound on nuclear physics.

On the less obvious hand, I'm working on another freelance article when I do find free time, which is when Aiden is taking his nap, usually, and it's hard to work on a freelance article when I know the boy is upstairs sleeping peacefully without a worry in the world--that enviously oblivious little turd. *shakes fist*

On the third hand--which grows between my shoulder blades--there hasn't been a ton of NICU news to report over the last few days. Zoey is doing very well, with the exception of not being able to quite figure out the whole breast feeding thing, which we're told is very common for preemies.

I'm so tired of being told things are "common for preemies." I mean, I realize in the NICU such things are as common as changing diapers, but it's all uncommon as hell for us. Shit, it's all new. I try to read up on what to expect next, but it's different for every preemie, so I may as well be trying to read up on how much Justin Bieber blood would be required to keep Charlie Sheen alive. I only wrote that last sentence to see how many visits I get from people searching on Justin Bieber blood and Charlie Sheen. That sentence too. I'm all about pop culture search engine optimization (SEO) on this blog.

Anyway, tomorrow marks the beginning of April, the month we're supposed to bring Zoey home. There was a time, back in early January, when I harbored doubts we'd even see the happy day. Or any happy day, for that matter. I read back through those early posts, and I honestly don't know how we've made it from there to here. Yet, here we are, including a remarkably resilient Zoey.

Three months ago. . .

Wow.

Genius

Casting Spells

Zoey hadn't had any deep apnea spells for the last four days, although occasional "dips" still occurred, which makes it sound like she quickly jumps into a swimming pool once in awhile.

Of course, today she started having apnea spells again, which were attributed to her being off caffeine, so she's now back on caffeine to compensate.

It's funny what you can get used to. I remember when Zoey had her first big apnea spell while I was also in the room. Her breathing, O2 saturation and heart rate numbers just dropped in an incredibly short span of time. It was all I could do from having a heart attack right there in her NICU room. I expected a team of doctors to come pouring into the room with resuscitation equipment and screaming instructions. Instead, a sole nurse casually entered the room and tickled Zoey's feet and likewise stimulated her to remind her to breathe. Within 20 seconds or so, Zoey's numbers came back up and I managed to fight back the urge to vomit in successive relieved waves.

After awhile, however, the apnea spells--including spells much more severe than the first one I witnessed--became oddly routine. In fact, I became attuned to the point where I could see an apnea spell coming on and I could take the initiative to tickle her feet preemptively so her numbers wouldn't fall so drastically.

Those apnea spells seemed like they were so far in the rearview mirror, even though it had only been shy of a week since she had her last big spells. And then suddenly today they're back again. We're never far from the next roller coaster drop, it seems.

She "dipped" a couple times as I held her in my arms tonight, but thankfully I'm to a point where I just encourage her with soft language and gentle rocking, rather than freaking, screaming for a nurse and losing control of my bowels.

Mostly.

The home stretch

Zoey has cleared almost every hurdle now, with the remaining one being figuring out how to breastfeed.

We've come so far, but it's come with a price deducted from our sanity and vitality. My wife and I are both extremely exhausted and endlessly irritable. It's all we can do to keep our emotions in check around our 18-month-old son, who has taken the last few months remarkably well, all things considered. Plus, he's discovered he absolutely loves riding the hospital elevators. So, there's that.

Once Zoey's home, I'm sure there will be a whole new slew of concerns and stresses, but right now the thought of not having to keep doing the whole hospital tango seems like a little slice of Heaven.

I'm Ryan. I'm annoying.

And this is annoying.

But it's just still so amazingly awful, in an amazingly awesome way.

Did you hear about the four pounder?

Zoey surpassed the four pound mark last night. She's leaping over milestones like an Olympic hurdler.

And breathe, Part Deux

My question

When did Elizabeth Taylor have a kissing scene with Will Ferrell?

Interesting, but not definitive

As a freelance writer/editor who also keeps a toe dipped in the pool of potential full-time employment opportunities, I found this piece interesting, but somewhat flawed.

How to Be a Freelancer (and How Not to Be a Freelancer)

Since getting downsized, I’ve been freelancing. That includes part-time work as a digital copywriter, blogging (at Forbes), and various writing gigs. I’ve been freelancing for over a decade. Now, it seems, the rules have changed.

This is partially true. I've found some rules have changed, but others remain fairly solid.

TIP #1: Be Young or Be Stupid.

It’s easiest to be a freelance writer when you’re in your twenties. Your overhead is low, and your responsibilities are few. If you’re not young, you should be inappropriately egotistical about your talents as a writer.

This is one of those rules that hasn't actually changed. As such, I'm not sure why she included this in the list. I would only add young and stupid writers tend to care more about building their name recognition than actually making any money, or sense, or logical arguments. They're just waiting for the world to recognize their own perceived brilliance, and the money will subsequently flow from there.

TIP #2: Don’t Start a Blog.

According to the paper of record, blogs are dead. Instead of blogging, start tweeting. Follow Andy Carvin, who is reinventing journalism one tweet at a time. Social media helps you network. Blogging helps you reenact scenes from “Cast Away.”

I don't agree with this at all. I've been blogging for just shy of a decade, and it's been an invaluable writing exercise, to say nothing of the excellent therapy it's provided over the past few months. I couldn't have possibly conveyed my family's ongoing preemie experience via Twitter. Twitter is the ADD of journalism. Blogging is a labor of love.

TIP #3: Write for Free.

Lately, it’s become fashionable to debate whether or not writers should write for free. On the one hand, your work finds an audience. On the other hand, “free” doesn’t pay the “bills.” The bottom line: If the market dictates you chose between “writing for free” and “going insane,” you should choose “writing for free.”

This is one of those paradigm shifts I've been having a hard time coming to terms with, but generally it's true, at least for some mediums. While I basically blog for free, my freelance writing can pay fairly decent.

TIP #4: Grow a Penis.

More men get published in magazines than women. Occasionally, I have wondered what would happen if I sent my pitches out under a man’s name. If you are a woman, you may want to consider growing a penis. I have no advice on how a woman would go about doing that. I am a writer, not a scientist.

Alternatively, grow a uterus. I can't tell you how many parenting and baby magazines arrive at our doorstep and almost all article contributors and editors are female. I guess it depends on your audience. Like the writer, I have no advice on how a man should go about growing a uterus.

TIP #5: Journalism School Is a Waste of Time (and Money).

The internet has been publishing’s tsunami. Advertising budgets are not what they once were. Circulation rates are on the downslide. Publishers remain unsure how to resolve these issues. (Example: The New York Times‘ deeply confusing, seemingly problematic, and internet-hating paywall.) For most, j-school requires accumulating significant debt. There is no payoff.

I don't disagree that journalism is increasingly a dying field, but unless you're willing to research AP Style and mass media law and all the other arcane areas of news and feature writing, I still think there's a place for at least a few journalism classes.

TIP #6: Stop Writing for Print.

Young journalists no longer dream of writing for print magazines like the New Yorker or Esquire. Print publications are the new phones nobody wants to answer. They are your old washing machine that desperately needs replacing, grinding through one last cycle before it breaks. They are your stalwart grandfather whose body is wracked with cancer, refusing to admit that the Grim Reaper is knocking on his bedroom door. Write for digital, or don’t bother.

Print is in trouble. No question about it. But it's still out there, or the racks and racks of magazines and newspapers I see in stores are just an illusion. That, and I still write predominantly for hardcopy trade magazines, so I'm hardwired to defend it, although almost all my freelance articles for magazines are also published online.

TIP #7: Marry Rich.

“All writers are whores,” bestselling author Harold Robbins once said. In the 21st century, the successful freelancer is fully realized as a prostitute. Given the current economy, the writer who marries for money is the savviest freelancer of them all.

I married an interior designer, so I missed this boat entirely.

The Forgotten

It's somewhat astonishing how much of the last three months I don't really remember. When I go back to some of my earliest blog posts detailing the first days and weeks of our preemie drama, I'm stuck by how many times I think "Oh, yeah, I'd forgotten about that."

So, I'm definitely happy I was able to find it within me to sit down and write as much as I have. As painful as it all can be to read and remember, it would be worse to not remember at all.

Despite how much I've written, there were certain details I neglected to write down, because they seemed somehow inconsequential at a time when all the big developments just commanded more attention. Still, the lack of a complete record bothers me sometimes, because I remember small snippets that flash through my mind like dream fragments.

For example, I remember riding in a car with my parents, who had flown back from their trip to Arizona when they learned of the twins' preemie delivery. However, while I remember riding in the car, I can't remember where I was sitting, or even what car I was in--my wife's car, or my parents' rental? I remember we were driving downtown, but I can't remember why. It's just this odd little memory that exists but it doesn't.

Shifting gears. . .

Zoey's finally starting to fight back from the effects of the ROP eye procedure and anesthesia, and she could make the transition from CPAP back to high flow air cannula late tonight or early tomorrow morning. She obviously hates the CPAP with the white hot intensity of a hyper-nova star explosion. She pulls the CPAP nasal prongs out of her nose all the time and it drives the nurses to distraction, so Zoey's not the only one eager to see her off the CPAP.

She's also back on feedings, so hopefully she'll start putting the weight back on in the leaps and bounds she was prior to the ROP treatment. The nurse told me the next big hurdle will be getting Zoey to breast feed, which can be quite a challenge for some preemies to grasp. I try to be optimistic that, in this area, Zoey will take on her father's enthusiasm for breasts.

This interminable winter is finally losing its grasp, and I saw my first robin of the season yesterday, so the onset of spring should help break some of the emotional and physical bleakness that's ruled our lives for these many weeks now.

And two steps back

As I mentioned previously, Zoey underwent an alternative ROP treatment Wednesday morning, during which her eyes were injected with an antibody called Avastin (it has a medical name, but damned if I can pronounce it), which basically inhibits the growth of capillaries in the eyes to prevent them from growing out of control and causing damage such as detached retinas.

The procedure went well enough, but Zoey has been slow to recover from anethesia, so she's been back on a ventilator the last couple days and she's been resistant to attempts to bring her back up entirely--including using Tylenol, oddly enough. Until she's recovered enough to remember to breathe on her own, she'll remain on the vent, which really sucks because it feels like we're back to square one all over again when I see her. That ventilator does not bring back pleasant memories.

Also, feedings have been suspended until she recovers, so obviously that inhibits her ability to continue putting on ounces. It's all just another in a long list of setbacks we were warned about but hate to experience nevertheless.

Zoey was only the second preemie to undergo this innovative treatment at this particular medical establishment, which is both weirdly unnerving but hopeful.

One more month, and she'll be home.

Hopefully.

Perspective

Let me get this straight: in the 1950s, people visiting Las Vegas could go outside and see actual mushroom clouds from atomic bomb testing taking place less than 70 miles away, yet today we're supposed to get the fainting vapors about possible radiation wafting in from hobbled nuclear reactors thousands of miles away in Japan? I'm. . . skeptical.

On the lighter side

Reading up on the ROP injection treatment performed on Zoey today, I saw "intravitreal injection of Avastin (bevacizumab)." "Bevacizumab" would have been the best Dungeons & Dragons fighter character name EVAR. "Avastin" would have been Bevacizumab's sexually ambiguous minstrel side-kick.

Dear Twitter

It is not part of a healthy business model to have a wildly popular Internet communications tool that experiences downtime and hiccups for nearly a full day. It would be like Microsoft unveiling an operating system so chock full of usability and security holes that. . . never mind, that's a bad analogy.

Regardless, Twitter, I look forward to your eventual return to full functionality and availability. Until then, I'll continue to use "Ole' Reliable," here at mu.nu to produce my random musings and updates.

Experimental

About a half hour prior to Zoey's eye surgery, a doctor asked if we'd be interested in pursuing a trial ROP alternative that calls for an injection rather than laser surgery.

With only a half hour to decide, and no Web access to research the procedure, we deferred to the doctor, who assured us it was the latest ROP advancement that features less risk than laser surgery.

We'll know if the procedure worked within a week or so, although studies haven't yet determined the longer term risks or complications.

At some point, you just get the feeling everyone is winging it.

Nothing Routine About It

As expected, today's ROP eye exam indicated laser surgery is necessary. Zoey goes under the laser early tomorrow morning. Doctors and nurses assure us it's a routine procedure, but we live under the mantra "There's nothing routine about the preemie routine when it's your child."

Neglected Milestone

Lost amid all the preemie drama of the unfolding year, I completely forgot: February marked my ninth year of blogging.

Nine freakin' years. I was 26 when I started blogging, which is hard to wrap my head around.

I started this blog as an experiment--prodded by my then-office mate, Jen--to hopefully improve my writing skills in general. . . and it's just kind of taken on a meandering life of its own in the ensuing years. It's definitely been an interesting ride, and it's a ride I almost abandoned a couple of times but soldiered on regardless.

And it's a good thing I kept at it, because having this blog to turn to in these dark--yet steadily improving--months has provided some of the strongest therapy imaginable.

Thanks again to all of you who have taken the time to comment, e-mail and share your own preemie experiences, well wishes and prayers. You've provided a source of strength during a seriously necessary time.

And, at this point, I see no reason why I shouldn't keep blogging, if for no other reason but to acknowledge a tenth year next February.

Spray Bottle Blues

Crib Notes

Today Zoey made the transition from her incubator to a regular crib. It's a positive development, of course, but seeing her in her crib made me feel somehow anxious.

For almost two and a half months, I'd become accustomed to seeing her in the incubator, and it had become one of those familiar things I'd just come to accept, so seeing her without it was like having a visual rug yanked out from under me. I'd come to consider the incubator a necessary reality to keep my daughter warm and safe.

Now she doesn't need it. That just strikes me as surreal somehow. I mean, it's great, but unsettlingly different for the time being.

Retinopathy of Prematurity (ROP) remains a concern, and a final eye test on Tuesday will determine whether she'll go in for laser surgery in the next day or so following the exam. As of yesterday's exam, the doctor is relatively certain surgery will be required. So, there's that additional worry to throw on the stack of other worries that now reaches halfway between Mars and Jupiter, somewhere in the asteroid belt--which is another worry entirely, because what if an asteroid strikes my worry stack? I probably shouldn't think about that.

In the odd hours when I find time to sit in front of a computer, I manage to get some freelance writing done, but it's a broken process of jagged starts and stops, so it can be a challenge to remember what the hell I was writing about at the point of my last stop.

I also have started thinking about longer term employment options once Zoey comes home in late April. Freelance writing and editing is great when I'm on the feast end of the feast and famine freelance cycle, but I don't want to rely solely on that once the daily hospital drama is finally in the rearview mirror. Not sure what I'll find locally, but Wal-Mart greeter has a certain ring to it. There's also the option of scrawling a message on a piece of cardboard and standing on a street corner all day, which has become something of a local phenomenon that might be worth looking into.

So, you know, there are options.

Things are going to start happening to her now

Zoey has been cleared for two rounds of Kangaroo Care a day, which means both my wife and I can hold her. I held her for 1.5 hours tonight. She's getting bigger by the minute; today she cleared 3.5 lbs. Tomorrow she'll be placed in a crib instead of her incubator. Things are happening fast. At this rate, she'll drive herself home come April.

Sleep Where You Can Get It

I always thought the couch in the visitor waiting room looked impossibly uncomfortable, but I'll be damned if I didn't just sleep on that thing for over two hours.

We're waiting for eye doctors to come in and determine whether Zoey needs surgery for ROP, but we've learned eye doctors are notoriously non-punctual when it comes to visiting the NICU.

Just say no

The hospital just called. Apparently, Zoey spent the whole night and morning removing her CPAP, so they're switching to a forced air cannula because they're tired of putting the damned CPAP back in her nose. The girl doesn't like crap up her nose, which is good, because it nips the whole cocaine use thing in the bud before she's even out of her incubator.

By comparison

One thing that continues to amaze me about the NICU is the number of full term babies who require care. When I first starting coming into the NICU, I just assumed most of the babies were preemies like Zoey and Finn, but it's astonishing how many actually had perfectly "normal" gestation and delivery yet still require NICU assistance.

It's just weird to hear Zoey referred to as one of the healthier babies in the room when she's still two or three pounds smaller than the next smallest infant. The NICU is an entirely different world to experience and learn about.

Bicker Basket

To say a four month preemie vigil can strain a marriage is like saying a close proximity nuclear explosion can irritate the skin. Regardless, my wife and I have managed to keep things together without resorting to the type of hand-to-hand melee that, if recorded, would typically go viral on YouTube.

Rather, our primary coping method so far has been a heavy reliance on bickering. There is no topic too mundane that's beyond our capacity to bicker endlessly about.

We've had bicker-fests regarding laundry, groceries, television shows, snacks, the time of day, bathroom time and countless other categories that we would otherwise never have bothered to argue about. Perpetual stress and an ongoing lack of sleep, however, has resulted in every topic under the sun being fair game for a good round of bickering.

I became acutely aware of our enhanced bickering while we had our 2010 taxes prepared recently. For a brief moment, while our tax preparer asked us several questions, I found myself sort of hovering outside my body, watching as my wife and I answered the questions through an incessent barrage of back-and-forth bickering.

Q: How much did you pay for electricity last year?

A: ME: About $1,200, I guess. WIFE: Oh, it was way more than that! ME: No, it wasn't. WIFE: It had to be about $2,000. ME: Hey, I paid the damned thing all year, so I should know. WIFE: You don't remember anything! ME: Well, I certainly don't remember why I married you! WIFE: That makes two of us!

Bear in mind, the tax preparing session lasted over an hour, so you can begin to appreciate what we put our tax preparer through. Suffice it to say, she earned her service fee that day.

For whatever reason, our bickering machine gun method seems to work, although we take care not to engage in serious bickering when our toddler is present--that's when we bicker via hand gestures and facial contortions.

At the end of the day--all bickering aside--we manage to keep the household running, while finding time each day for both of us to sit with Zoey. It's a challenging juggling act even under the best of circumstances.

Daily bickering has kept us sane, as crazy as that may seem.

Two Months

Two months ago. . .

Zoey:

Finn:

Zoey today:

It's been a long two months, and we're still only about halfway to the finish line.

It's Time to. . . PUMP. . . *CLAP* You up!

As if the daily preemie drama alone isn't enough grist to set my jaw in a perpetual worry smirk, other unexpected aspects of the daily routine, such as it is, eventually build to a crescendo--complete with clanging cymbals--that leave me completely perplexed as to how I should proceed.

Yes, I'm referring, of course, to breast milk.

Breast milk is basically staging a house takeover, and it's doing so so efficiently yet gradually that I was completely surprised to realize it had even become a problem.

What happened is this: my wife is crazy. Okay, that's not a complete explanation. Let me elaborate.

When the twins first arrived, we were obviously blindsided by all the preemie realities that showered down on us practically by the hour. As such, we weren't concerning ourselves with such mundane daily practices as showering or feeding ourselves.

Also, my wife didn't get a jump start on breastfeeding right away, so when she realized she could lose her milk supply if she didn't start pumping, she basically kicked it into overdrive and has been a pumping super athlete--if such an athlete subset exists--ever since.

Routine pumping alone is exhausting for my wife, since she has to pump every two to four hours, which means waking up in the middle of the night to tap the boob juice, and she usually can't fall back asleep for at least an hour afterwards. So, there's that obvious aspect.

The less obvious aspect is the impact of STORING all the milk. My wife pumps the milk into these cylindrical receptacles which, when full, get labeled and placed in the freezer. My wife pumps both at home and at the hospital, and she's already filled her allocated hospital freezer shelf to the point she's starting a second row. On the home front, when I open the freezer door, it's all I can do to keep an avalanche of frozen milk cylinders from cascading down upon me like a wave of calcium-rich Tribbles.

The deep freeze in the basement, likewise, is completely jam-packed with frozen milk tubes. We're literally running out of room to store all these freakin' breast milk containers.

When I suggest maybe, just maybe, my wife should consider just pumping and dumping out the milk, she points out "BUT WHAT IF I STOP PRODUCING MILK!? HOW WILL I FEED ZOEY THEN!?"

It's a maddening Catch-22 that I simply can't see a way around. She has to pump to keep her milk coming in, and she has to save the milk in case her milk stops coming in. We need to give Zoey breast milk whether my wife is producing milk or not.

So, we save. And we save. And we save. And we've saved so damned much milk, I find myself watching television shows about hoarders every once in a while and thinking "You think THAT'S BAD?! Come and take a look at our freezers, pal. I'll show you a hoarding problem."

By the way, I have no idea what a "jaw set in a perpetual worry smirk" actually looks like, but damn if that's not a most excellent turn of phrase.

70 grams

I neglected to write much of an update yesterday because I was busy observing my 36th birthday.

However, Zoey packed on an astonishing 2.47 ounces yesterday. The nurses had best prepare for a diaper change of Biblical proportions.

Yes, there are stories of colossal diaper changes in the Bible.

It's in Luke. Look it up.

Bath Time For Zoey