Monday, March 31, 2014

Obsessing About Numbers



Dear Ellie,

You may not realize this, but as much as I love numbers and statistics, I have no natural aptitude for mathematics.  Still, it fascinates me nonetheless and when it comes to all things you, numbers have always brought me great comfort, even when the numbers weren't in our favor.  Back when your mother and I were trying to have you, I spent many late nights going over the numbers.  At every juncture, I calculated the odds of a successful pregnancy over some period of time or through some procedure.  Those odds became especially tense when we started our high tech in-vitro fertilization cycles.  Each cycle cost around $25,000 and gave us one shot at a 40 percent chance of pregnancy.  The first cycle was a success, and once your mother was pregnant, I recalculated the odds that we'd have a baby: 67 percent chance of successful birth without a miscarriage.  Unfortunately, a few weeks later, that other 33 percent chance reared its ugly head and we lost the pregnancy.  

Each setback on our journey made me cannier with numbers, and I searched for them everywhere.  I sat in the university library and dug up research documents.  I was pretty much the only man on fertility forums, patrolling for references to knowledge that might give us an advantage.  I wondered occasionally if I had some kind of unhealthy obsession.  Whether I would be better off just giving up and accepting life without you.  Some part of me felt deeply... pathetic... for wanting you so much.  

I started analyzing the various factors that would increase our odds.  Weight loss and exercise would up our chance of a successful IVF cycle and reduce the chance of miscarriage by 5 percent for our age group.  A high protein diet, an extra 5 percent.  Expensive medications and vitamins and extra high doses of folate would eek us out a few more points on the margins...  and so a year before the we embarked on the IVF cycle that gave you life, your mother and I transformed our lives to seize every advantage we could get.  

However, when we tried to extract eggs from your mother's ovaries, everything went wrong and all of those extra percentages that we fought so hard for came crashing down.  Her ovaries weren't stimulating.  We maxed out on every medication in the book and even resorted to human growth hormone that blistered your mother's skin upon injection.  We were supposed to get around 20 eggs.  We only acquired 3.  Suddenly, our odds of pregnancy collapsed to some tiny fraction of what it was before.  I felt like we'd wasted years of our life.  Usually, a successful IVF cycle requires numerous fertilized eggs because most of the eggs will never become an embryo and many embryos are of a quality that are too low to survive.  We fertilized all 3 eggs, not knowing whether any would last.  After a few days of maturing in a "petri dish," there was just one left.  There you were, one tiny gem, ready to beat the odds.  You were put back into your mother and the diagnostic numbers came back so low two weeks later that we weren't sure whether your mother would stay pregnant or not.  But she did.

I felt like the clock was reset.  We had advanced back to 67 percent, possibly higher due to all of our lifestyle changes.  Then there was the blood a few weeks later, on the day that Oliver the Friendly Eel died.  This was the first time we thought you were gone.  I remember sitting in the shower before our trip to the doctors office, going over the number in my head.  It was probably a miscarriage, but it could be something benign.  Was there, perhaps, a 10 percent chance that you were still alive?  When we arrived at the doctors office for the ultrasound, your mother's eyes popped open when the doctor said, "Well, its still there."  And indeed, there you were, alive and well, a little black spot on the ultrasound monitor.

When we at last heard your heartbeat for the first time, our odds of success went up to 90 percent.  When we reached halfway through the pregnancy, we kicked our feet back.  And why shouldn't we?  Now, there was a 98 percent chance that you would be born alive and healthy.  Our odds had never been better.  However, our strange relationship with statistics wasn't over, yet. 

Again, the blood came and your mother was in the hospital at 22 weeks of pregnancy.  Not only did we fall into that perilous 2 percent, you were born in that ghastly gray zone between viability and futility: born as a micro-preemie.  What is the likelihood of being born a micro-preemie?  About 1 in a 1000.

Suddenly, a whole new world of numbers emerged that we'd never expected.  On the surface, it appeared as though you had a 50/50 chance of survival.  I didn't like those odds, so I determined that you weren't a median 24 weeker.  You were a girl, after all, and that made you stronger.  Back to the university library I went.  Apparently, girls survived far, far better at your age group.  83 percent.  But there had to be more factors that gave you better odds.  Did all of our careful planning make a difference?  And you were so active.  Wasn't that a good sign?

But there was an even bigger number that concerned me.  The specter of disabilities.  The average 24 weeker had an 80 percent chance of mental disabilities of one kind or another.  Ouch.  But again, if look closer at the variables, you can determine where a micro-preemie sits on the bellcurve.  Risk factors that you may or may not accumulate.  Again, you were a girl.  This was good.  Boys were 3 times more likely to have neurodevelopmental impairment than girls so that moved you along the bellcurve in the right direction.  But this was just one variable among many.  When you were first born, there was a virtual minefield of potential risk factors that would substantially increase your risk of mental disabilities.  Any one of these mines you might step on.  Sepsis in your blood increased your chance of mental disability by about 2.5 times.  Severe brain bleeds, 3-4 times.  Necrotizing intestines, 3 times.  And there were many more factors: hypoxic episodes, low weight, small head circumference, and the list goes on and on.

As the weeks went by, you dodged one risk factor after another.  No brain bleeds.  No necrotizing intestines.  No sepsis.  No brain lesions.  So much could have, and should have, gone wrong.  But it didn't.

So now, where we sit now, looking at the stats,  I would say that your odds of having a "normal life" have never been higher.  The numbers have never given me more confidence that you'll be able to read these letters, one day.  

Still, after all that we've been through, I feel like its only a matter of time before some absurd and improbable thing swoops in and takes you away from us.  When you were born a micro-preemie, even though I was aware of the obscure odds that such a thing could happen, I wasn't surprised or in disbelief when it did.  I'd been expecting it, all along.  Hadn't it happened so many other times before?  

Your mother and I are ruthless empiricists.  There is nothing in our principles or beliefs that makes any room for superstitious thinking.  Still, with all that's happened, I feel like your mother and I are two people that have managed to spin fate when its comes to our struggle to start a family.  Or perhaps, that there is only so much happiness and harmony that can exist in any two lives before one's supply of good fortune is exhausted.  I wonder though, during these uncharacteristically superstitious moments of mine, whether the polarity of your good fortune was reversed upon your birth.  That somehow, you have changed the equation of our family's fate.  That you won't be a victim of the numbers any longer.       

Low Hanging Fruit

Dear Ellie,

I think the low hanging fruit has been plucked when it comes to your lung progress.  We're back to the long slog.  No more giant leaps.  Your mother and I were a little depressed when you backslid over the weekend, but you seem to accept sleeping on your back now so I suppose it was worth it.  You are beginning to regain your ground, one or two points at a time.  The good news is that its unlikely you'll face as many "catastrophic setbacks" due to infection now that you are bigger and the endotracheal tube is out.  I'm fine with a long journey from here on out, so long as it is a pleasant one.        

Sunday, March 30, 2014

Finding Your Voice

video


Dear Ellie,

You found your voice a lot sooner than I thought you would.  The endotracheal tube came out just a little over a week ago and already, you're letting us know what's up.  I remember your two older neighbors had stunted voices for quite some time after their ET tubes came out.  Their cries sounded more like sighs or whines.  Granted, you can't belt it out like a newborn, you still sound a lot louder than I expected you would at this juncture.

For months, I was looking forward to hearing you cry.  I'm not sure why, exactly.  I think a baby's cries are meant to evoke certain emotions in parents--- to spur them to action--- and I was curious what that would feel like.  Well, now I do.  And while hearing you cry does in fact make me want to comfort you, there's not really anything I can do.  In a way, being in the NICU is a strange perversion of parental instinct.  Outside of the NICU, hearing you cry would be something to listen closely for.  A cue to take action.  In here, its something to ignore.

A baby cries because its needs must be met.  To cry is the only way it can communicate with the world.  It can mean "feed me," or "warm me," or "something is hurting me, make it stop!" but in here, there is nothing we can do to end the source of your discomfort or distress.  You are fed through a tube at designated times, so your cries of hunger are ignored.  Your temperature is taken at regular intervals and you are moved based on a similar schedule, so cries of discomfort are unimportant as well.  And if we prick your foot to gather blood for a blood gas test, you'll wail in such a way as to say: "Help me!  Something is stabbing me!" but your cries of pain are only met with more sticks and more pain, causing you to shriek ever louder.  It brings me nearly to tears.  Whenever I hear you cry, I'm left with this piercing feeling of hopelessness, knowing that something in your little baby brain thinks that we can't hear you or that we've abandoned you.  Each time you cry I hear: "Please come back!  Don't leave me!  Something is still stabbing me!"

In a way, you are in the same situation that we are.  Your cries may be irrelevant, but the things that parents can normally do to quell them are irrelevant as well.  In the same way that the deeds spurned by our parental instincts are replaced by technology and expertise, so too are your cries.  We don't listen for your voice, but instead listen for the alarms that tell us whether you are too hot or failing to breath.  In away, the technology that sustains you knows you better than you know yourself.

      

Saturday, March 29, 2014

Set Backs Happen

Dear Ellie,

Today your breathing was somewhat concerning.  At times, it was rapid fire.  Your little chest was pounding in and out so fast that you were almost at 3 breathes a second for a short period of time.  Your mouth was agape, tongue hanging out, eyes wide open and staring.

There was some mention of the fact that your nose was irritated during a suction while we were out eating dinner (remember, oxygen is delivered through nose prongs) and when we noticed the suction disposal bin a minute ago, it had a disturbing amount of dried blood inside.

As a result, your respiratory needs were cranked up considerably.  They aren't as bad as when we took you off the endotracheal tube 9 days ago, so we have something to show for the past week, but set backs happen I suppose.  Damn you, weekend curse.    

The Quantum House and Mario Cart


Dear Ellie,

I don't think these letters would ever be complete if we didn't mention where we've been staying for these past few months.  After we were discharged from the hospital, we were taken in at The Quantum House: a charity residence next to St. Mary's.  Its doors are open to parents who don't live nearby and have children in the hospital.  Since our own house is a little over an hour away from the hospital, we were eligible to hang our hats at Quantum.
 
NICU parents only compose a fraction of the residents.  There is a doctor with quite a bit of notoriety at St. Mary's hospital who is a pioneer in the new medical field of bone lengthening, so most of the parents at The Quantum House have children with bone issues, usually with one limb being considerably shorter than the other.  From my understanding, their bones are broken during surgery and large pins inserted through their skin and tissue and into the bones.  As the bone attempts to heal, the pins are used to pull the bones further and further apart, thus causing the bone to continue to grow and lengthen.  Many of the children have come from as far away as California, Washington state, and Russia to undergo this procedure, and they typically return throughout their childhood.  I'm embarrassed to say that, after 2 plus months here, I still don't know the names of most of the parents.  I only know them in relation to their children: Lidia's Mom, Jackson's Mom, Stephanie's Mom, Ethan's Mom...

Early on, the kids here helped me keep my sanity.  There is a game room at Quantum and whenever the NICU was closed, I honed my Mario Cart skills.  Unfortunately, the kids had way more practice than I did at first which lead to a number of humiliating defeats.  One of the nine year old boys learned that he could lure me back to the game room whenever he wanted by referencing my defeats over and over again.  Having not been called a "loser" by a petulant child in at least 20 years hardened my resolve.  I used the advantages of being an adult (like not having a bedtime) to refine my skills.  It wasn't long before I had enough victories under my belt to throw those same accusations back at him (out of earshot of his mother, of course).  What's more, I made a bet with him that if I could beat him 10 consecutive times at the Pokemon Card game, he must stop calling me names.  He was no match for my superior grown-up intellect, and I haven't allowed him to forget it!  If ever he ever acts up, I just cite the fact that his mother cuts up his food for him, too.

So far, I can consistently beat every kid at Quantum in Mario Cart except for one.  She's a little freckly girl who can barely play the theme from Harry Potter on the piano but somehow is able to glide around every corner of even the hardest race tracks effortlessly.  I know I'm not supposed to have favorites, but she's my favorite kid there because she reminds me a little bit of your mother and also how I thought you might be, one day.  Sweet and gracious upon victory.  Seething and stormy upon defeat.  Whenever I beat her, I see the gears in her head turning, analyzing where things went wrong.  "I like losing," she says grudgingly.  "Because that means it was a challenge and I had to try my hardest."  To hedge against future defeats, I see her sneaking off into the game room at odd hours of the day to practice.  Fortunately for me, all of the Quantum parents have confused my dedication to smiting their kids at video games with "being good with children" or something to that effect.

"It's so great that you spend time with the kids to make them happy," they'll say, to which I reply: "Eat dust, Lidia!  Oh, I mean... Hi Lidia's Mom.  I do what I can for them in these difficult times..."

Sadly, we'll have to leave Sunday because parents who have come from further distances than your mother and I need a room to stay in.  I'll miss the Quantum House.

Bad Habits and Angelfish-Head-Syndrome

Can you see the resemblance??


Dear Ellie Angelfish,

I'm afraid we've spoiled you a little bit.  You've always preferred sleeping on your belly, hence the budding nickname, "Ellie Belly."  Whenever the nurses put you on your side or back, you don't breath as often, your heart rate goes up, and everything in general becomes just a little bit worse.  Before your lungs had improved, we used to butt heads with some of the nurses because they would insist that you needed to be on your back and sides more often because your legs would become bowed and your head would look a little funny if left on your belly for too long.  Personally, we were a little bit more worried about, you know, oxygen getting to your brain and all that.  We relented whenever it looked like you were doing better, but before long, your blood oxygen and breathing got so erratic that you invariably were back on your belly in no time.

Unfortunately, we can't let you stay on your belly for too much longer anyway.  Aside from getting bowed legs and "Angelfish-Head-Syndrome," belly sleeping becomes a major risk factor for Sudden Infant Death Syndrome when you get older.  Now is the time to break bad habits, given that your lungs look considerably better than before.

Personally, I wouldn't mind if you contracted Angelfish-Head-Syndrome.  "Ellie Angelfish" has a certain ring to it and it would be fun to tease you whenever we go snorkeling.  "Look Ellie, it's your cousin!  A queen angelfish!"  Sudden Infant Death Syndrome, on the other hand, is kind of scary, so I guess its time to break the belly sleeping habit.

Friday, March 28, 2014

The Way We See Things

Dear Ellie,

Throughout the NICU, there are illustrated ceiling tiles, painted by middle school art students.  I've glanced up at them often but only really begun noticing them recently.  In a way, they felt kind of like the landscape on my commute to work.  Every day you passively notice them but rarely meditate on any individual object.

Whenever something dramatic happened to you in the NICU, I would walk away to give the nurses and doctors their space, take a deep breath, and arc my neck so that my eyes were facing toward the ceiling.  For each traumatic event, depending on where I was standing, a specific tile would imprint itself in my memory.  Now, whenever I see those tiles, I remember the corresponding event with unsettling clarity.

The first time I saw you turn blue from lack of oxygen, I walked into the hallway between PODs and, coincidentally, noticed this tile:

 It was an unsettling thing to see.  Almost sinister and unnatural.  I know it wasn't the artist's intention, but that deathly blue, grinning girl with gangly limbs still gives me the creeps to this day.

And then there was your mechanical failure, when you went blue for minutes.  I remember walking to a corner while it was all happening.  When I wasn't watching from afar, I stared at the ceiling and saw a haunting black lotus:


There are many more tiles here and I don't associate all of them with bad feelings.  I noticed them only idly for the first month or two and my brain assumed that they were something very different than what they were meant to be.  For instance, the tile below is meant to be flowers and green leaves, but I saw instead a green anemone in the ocean and the tentacles of a squid.


This next one was clearly meant to be a sunflower, but whenever my eyes glance over it, I see instead a solar flare or helium flash bursting from a Red Giant star.


This last one, I suppose, is a ship but my first impression was that it was a birthday cake factory!


Maybe I'll take pictures of all of the ceiling tiles in here so that one day, you can look through them and come to know the landscape of your first few months of life.  

Thursday, March 27, 2014

Ellie With Glasses?

Dear Ellie,

A few days ago, a doctor came and examined your eyes for Retinopathy.  Apparently, when he pries open the eyes of babies, its such an unpleasant thing to watch that parents are requested to wait elsewhere while the procedure takes place.  We heard you crying from down the hall, a considerable feat on your part given that your vocal cords are still stunted by your time on the endotracheal tube.  The doctor was basically examining arterial growth in your eyes.  If there is too much growth, it causes damage.  The process took only a moment.

After he was done, he was able to diagnose right away: Stage 1 Retinopathy.  Because 24 weekers have a 75 percent chance of some kind of Retinopathy, this isn't unexpected.  In a way, it's even good news.  Stage 5 Retinopathy is the worst.  Complete blindness.  Stage 3-4 Retinopathy result in visual difficulties.  Stage 1-2 is not an imminent concern.  The doctor has to return a few times to check on your eyes because Retinopathy between stages 1 and 4 can progress to more severe stages, at which point we'd need to treat you.  For now, though, we're not very concerned.  Stage 1 Retinopathy will probably resolve on its own and if it doesn't there are many ways to treat it.  And besides, lazy eyes might not be such a bad thing.  I always imagined you wearing glasses.

Survivor's Guilt


Dear Ellie,

Today is a good day.  Again, over night, you made huge leaps.  By respirator metrics, your lungs have made more progress in the last two days than they have in the prior two months.  I remember just a month ago, I'd be amazed if you improved by two mandatory breathes in a day or five in a week.  But in the last two days?  You went down by 20.

It seems like years ago, but I can remember the day you were born so clearly.  The things that I thought and things that I feared are as clear in my head as they were then.  A 50/50 chance of survival and, if you survived, a profoundly high chance of being afflicted with SOME kind of problem.  I remember reading through the medical literature on Pubmed.  There were pages and pages of problems.  More than likely, at 24 weeks, you'd get some tragic combination of them.  Yet we dodged brain bleeds and decomposing intestines and brain lesions and holes in organs and septic blood and severe Retinopathy and many, many others.  When your lungs failed to improved, we thought "okay, so here is your problem."  We felt lucky that it was ONLY chronic lung disease.  But now, even that may be milder than we anticipated.  From the beginning, by my calculations, you only had somewhere around a 5 percent chance of escaping all of the things I listed above.  It seemed like such a tiny percentage, at the time.  "Your mother and I don't dwell within that 5 percentage point margin of error," I thought.  "Not on the good side, at least."

There are still potential problems ahead of you, but they are less likely and less severe.  You might have feeding problems.  You might still have partial deafness from all of the antibiotics you were on.  Even with those problems, though, it would still feel like we dodged those 100, tiny baby sized revolvers I mentioned in earlier letters.  Those baby sized revolvers pointed at your isolette.

In a way, being surrounded by scores and scores of babies of your gestational age that weren't so lucky makes me feel guilty.  Did you deserve this good fortune?  Did we?  It's easy to believe in "miracles" when you ignore the vast number of other babies that weren't so lucky.  Those babies that the hand of good fortune didn't tap on the forehead.  A miracle wouldn't be a miracle if EVERY baby were so fortunate, would it?  For one baby to be considered a miracle, many more must not.  Still, we'll take whatever good luck happens to come your way. 

Wednesday, March 26, 2014

All of the Time in the World



Dear Ellie,

It's hard to believe where you were just a week ago: back on the Endotracheal tube with worse respiratory stats than ever before.  As of this morning, a little less than a week after being extubated, you are almost at atmospheric levels of oxygen.  The "assisted breathes" given to you went down by 1/4th in one day.

As weeks and weeks went by with you still stuck on the endotracheal tube, I was resigned to the fact that you'd be on supplemental oxygen by 36 weeks and, thus, be diagnosed with chronic lung disease.  But now?  You have four full weeks to improve.  Suddenly, it feels like we have all the time in the world.  You may not have chronic lung disease, afterall.

When Dreams Invade Reality

Dear Ellie,

I'm glad that you are a girl, and not a boy.  Because of that, you will probably never inherit my sleep condition.  You've probably woken up often during your childhood at the sound of Dad bumping around the house or shouting.  During the day, I'll just be your calm, disciplined, fearless father.  But at night, I might be something else.  Frantic.  Wild eyed and possessed by a fear beyond fear.

It's a disease of old men who's brains are rapidly deteriorating.  For unknown reasons, a very few young men get it too, like me.  In case I haven't told you about the cause, the neurochemical responsible for paralyzing my body while I dream becomes exhausted.  If I wake up during REM sleep, my dreams persist.  Inhabit my reality.  Invade my reality.  I've woken up and seen monkeys dangling from my ceiling fan.  Or shrieking, flaming skulls bursting through my window to chase me through my house.  In college, my episodes often resulted in amusing antics.  Like when  I ran through the dorm hallway in the middle of the night in my underwear because I was convinced that giant leeches were chasing me and attacking my feet.  In every case, inevitably, reality begins to shunt away my dreams once a tiny voice in my head insists: "Dana, you are dreaming."

However, the worst part about having my dreams invade the waking world is that it leaves a residue.  Some part of my memories are infused with those dreams as though they had happened in reality because, in a way, they did.  Most people can remember a dream and know it was a dream, but for me, its not always clear.  Sometimes, I'll dream something and it will stick in my memory so strongly that, some time later, I'll be unsure of whether it really happened or not.

I think my constant fear that I'll lose you is partially due to this reason because every night since the day you were born, I dream that you die.  It's painfully visceral.  In fact, this letter began last night around midnight, not long after I had such a dream.  Half awake and half asleep, I thought that the little red light on the television was something other than what it was.  I squinted at that red light and my brain turned it into little red numbers.  Your oxygen saturation numbers.  But it was only a single digit, which meant that you were suffocating.  I ran to the television to look at the number more closely.  On the way I saw a pile of laundry.  But it wasn't a pile of laundry to me at that moment, it was you beneath the blankets in your isolette.  I grabbed my belt and a water bottle, believing that they were hand held respirators.  I tried to revive you.  I didn't succeed.  I couldn't find you anywhere in the laundry.  You were already gone.

It took me a few minutes of sitting in the darkness to finally convince myself that it had all been a dream.  Even then, there was some holdout in my consciousness so I went out the door and headed to the hospital.  I arrived at the NICU and sat next to your isolette, dozing off.  If you died again in my dreams, I wouldn't have to sit in the darkness and wonder whether you were still with me.  I could wake up and see you sleeping, right in front of me.

Before you were born, for my entire adult life, I used to dream that you were alive but then I'd wake up and face the bitter reality that you didn't exist.  But now, I dream every night that you die but awake to discover you alive.  These terrible dreams, I think, will always be a part of my life.  A parent's fears may diminish over time, but they will never disappear completely.        


Tuesday, March 25, 2014

A Dangerous Feeling


Dear Ellie,

The first four days after you were taken off of the endotracheal tube, we were nervous.  If your ventilator stats started ticking up, it would mean you were slowly losing altitude, at which point you would probably be reintubated.  If your ventilator stats started ticking down, it meant you were breathing more and more on your own and would probably be off of the tube for good.  For four days, you went neither up nor down.  But then, this morning, they went down.  And then later today, down again.  Strides that were once made over a week you've made in just hours.  Your lungs don't crackle perilously like they used to.  Your blood oxygen level doesn't swing wildly, anymore.  

We were resigned to the fact that you would be coming home with us on oxygen.  That you'd spend the first two years of your life with a canula in your nose, tapped into an oxygen canister.  But now?... maybe not.  When you first arrived in the NICU, you had two tiny neighbors, both of whom were about your age now.  They were both clearly worse off than you were, yet neither them went home on oxygen.

To make matters better, it turns out that we may have misplaced 100 grams of your weight last week.  All through the week, your weight mysteriously dipped and then you stopped gaining weight entirely.  Odd.  We assumed that your episode a week ago might have caused you to burn some calories.  When I examined your growth chart two days ago, I was dismayed.  Your weight was near the 10th percentile, meaning that 90 percent of babies at your gestational age of 32 weeks were heavier than you.  Granted micro-preemies always weigh less than babies still "baking" in utero, it was still low.

But then we did your weekly isolette switch (along with switching the inbuilt scale).  Incredibly, you were suddenly 100 grams heavier!  That's when we realized that you may have been gaining weight all week long, but because the scale was faulty, we simply didn't notice.  According to the growth chart, you are now in the 35th percentile instead of 10th.

For the first time in two and a half months I actually feel... safe.  Like we might have some semblance of a normal life in our future.  Like we might sail through the rest of our stay here with fewer and fewer problems.  What a dangerous feeling.

An Epic Journey and an Important Life Lesson

Dear Ellie,

Every day before the NICU opens, I stop by a little hospital coffee shop to grab a cup of coffee.  Now, I don't know if you drink coffee yet, but in case you don't you should know that it has a tendency to make your intestines do the Mamba.  And trust me, there is no worse place to have your intestines do the Mamba than in a hospital because the only place to go is the public hospital bathroom.  If you are faint of heart, avert your eyes because the following descriptions may give you PTSD (indeed, using a hospital bathroom every day is uncannily similar to the unrelenting stresses of war).

Yes, public hospital bathrooms.  In no other place on Earth will a higher density of people experience sneezing, coughing, vomiting, explosive diarrhea, and "poor aim" induced by dizziness and nausea.  Every time you walk in, its like a kind of russian roulette but with human excretions.  Sure, maybe you get lucky from time to time and the cleaning ladies just came a second ago, but not often.

Will you encounter mucus soiled tissues, tossed on the ground near the garbage can?  Will it be urine in places other than the toilet?  Will it be poo blasted on the toilet seat and flush-handle, shotgun style?  Some of the bathrooms are unisex too which means women have the unusual experience of encountering toilet seat urine and men get to witness, uhm, unflushed feminine hygiene products.  After leaving, I always have the urge to peel off the first three layers of my skin and toss them into an incinerator.

So dearest Ellie, if you ever find yourself in a hospital with poopy cramps so bad that you resort to using a public hospital restroom, remember this: don't look into the toilet bowl.  It's like staring into the Eye of the Devil.  Stare long enough into it, and it also stares into you.  Once you have finished what you came for and flushed, a part of your soul flushes away, too.

So as you can imagine, after a few days of these unpleasant experiences (and the fear of facing months and months more!) I decided that something had to change.  I set out on an epic journey through the sterile labyrinth of Saint Mary's Hospital in search of an oasis in the desert.  A green valley between harsh mountains.  A myth.

The Secret Bathroom.      

What is The Secret Bathroom, you wonder?  Well first off, it's a secret so don't go blabbing about it to everyone on a blog or anything.  The Legend of the Secret Bathroom is a family secret, passed down from generation to generation (it just happens to be that this is the first generation its been passed down).  I learned very early on that in every major complex--- in every large and maze-like building--- there is always a secret bathroom in some distant recesses.  No exceptions.  The Secret Bathroom, simply put, is a public bathroom that experiences low traffic and is, therefore, clean.  Over the years, due to my immense anxiety of pooping in public places and my irrational urge to wash my hands after touching any object that might conceivably have germs on it, I have become an expert at ferreting out the secret bathrooms.  In middle school, that bathroom was behind the dean's office.  In high school, that secret bathroom was in the journalism room.  And in Saint Mary's?  It was there. Somewhere.  It had to be.  But finding it wouldn't be easy.  It would take guile, dexterity, and the kind of determination that can only be induced by someone that desperately needs to use the potty.        

I began my search in the hallways that were open to patients and their family, but even the bathrooms at the back of the hospital were all trashed.  I should have known better.  Tragedy of the Commons (Google it).  So I turned my efforts in a more... elicit direction.  Only a fraction of the hospital was open to idle wanderers so soon, I had "an aunt in radiology," a brother "getting a CT scan," and a child "undergoing surgery."  When, still, the secret bathroom eluded me, I began searching further and deeper.  Places that no hospital guest was supposed to visit.  Maintenance corridors.  Supply rooms.  At one point, late at night, I even discovered a secret, unused floor at the very top of the children's hospital.  It was like some post-apocalyptic landscape: devoid of life, ransacked, and gutted.  There were even faded murals on the wall.  For a second, I thought I could even hear the distant, ethereal laughter of children.  Creepy.  Unfortunately, while the plumbing up there was indeed working, there was no toilet paper what so ever.

I tapped every last one of my unique skills during my mission.  Every last line of defense.  My most useful skill was my "air of confidence."  Rather than glance about nervously, I instead peeled off my hospital badge and marched through the hospital back corridors like I knew exactly where I was going.  "No need to stop me!" my strides exuded, "As you can see, I'm familiar enough with the surroundings to indicate that I'm supposed to be here!"  That worked most of the time, but on occasion, it wasn't enough.

Thus, at times, I was forced to deploy a second line of defense so that I may either continue on my way or at the very least, evade getting into trouble: "the benign lie."  

"Uhh, are you looking for something, sir?" employees often asked to which I had an arsenal of replies at the ready.

"Yes, I am.  I'm looking for Labor and Delivery/ The Children's Hospital/ the vending machines/ Dr. Patel/ Dr. Seuss."  And of course, if ever the person scrutinizing my presence looked especially austere, I'd put on a innocent, pleading expression and say simply, "I seem to have somehow stumbled through three security doors by accident and now appear to be lost."

A few times, if all other excuses seemed to escape me, I'd even tell the truth.  I'd plant my hands on my hips, hold up my head high, and puff out my chest heroicly before declaring: "I'm on a quest to find The Secret Bathroom."  One person laughed.  Another took a wary step backward and perked an eyebrow.  As it turns out, if you can either make people laugh or scare them, they will let you go on your way.  However, on one occasion, there was a young technician that thought about it for a moment, then gave me an expression that seemed to say, "I've been looking for The Secret Bathroom all my life, too..."  At that moment, we were like two soldiers in a trench.  Two soldiers who had never met, but wordlessly exchanged nods of camaraderie as mortar shells burst overhead.  "Let me know if you find it," he said with a grin, then we went our separate ways.

Eventually, after plunging the far corners of the hospital, I finally came to the very heart.  The old hospital, built nearly a century ago before all of the modern buildings were built around it.  It was here that Hospital Administration dwelled.  If anyone was holding out with a secret bathroom, it would be the bureaucrats.  And sure enough, at the very end of the hallway next to a lavish boardroom, there it was.  I slid through the door unseen and what I witnessed was a bathroom utterly pristine.  Unused.  It was like the toilet that time forgot.  The noonday sun spilled in through the window and cast a heavenly glow upon the seat.  There was even a sign over the toilet: "Please keep the bathroom clean for our special guests!"  The Holy Grail indeed exists, and it is made of porcelain.

It was there that my journey finally ended.  Victory was mine.

          
So this might all seem quite banal to you.  You might be wondering: "Why are you making such a big deal about bathrooms?"

Well, you see Ellie, for every good thing in life--- for every "in"--- there has to be an "out."  Every late night of fun has a bleary morning.  Every day of leisure has a day of work.  Every delicious, two-pound-refried-bean-burrito at Chipotle has... the thing that comes a few hours later.

 Yes, we must cherish all of the in's--- all of those delicious morning cups of coffee in the hospital--- but if we can also make all of the out's bearable or even enjoyable, then life can be a wonderful, pleasant place.  So go forth, Ellie.  Find all of life's secret bathrooms.

Monday, March 24, 2014

Variability


Dear Ellie,

I may not have mentioned this before, but in the NICU, the goods and bads don't always come in tidal waves of fear or relief.  Every day there are dozens of tiny ups and downs and its rare to go 15 minutes without experiencing one of these upsets.  Your oxygen might get adjusted in one direction or the other by a point or two.  Your respiration might spike dangerously high for one second, then go back to normal.  Your heart rate might suddenly collapse to one third for five second.  And of course, your blood oxygen might be too low or conversely, trending high.  Most of the time, these little "hiccups" are just temporary flukes that correct themselves.  Expected variability.  Still, every time they happen, we wonder whether each new tick toward improvement or deterioration is the tip of something disastrous.  Afterall, every catastrophe started with some small incident, like these.

Today, for instance, your oxygen needs grew steadily larger.  From 32 to 34 to 37 percent.  Your breath rate grew faster, an indication that perhaps you were beginning to grow tired and might need to be reintubated with the endotracheal tube.  Then your heart rate collapsed for a few seconds.  The symptoms didn't look encouraging.  

"Is she finally losing steam?" your mother asked while I was off at work.  I tried to comfort her, though I wonder if I was trying to comfort myself, too.  

"A thousand little things will happen that she'll easily recover from," I told her, not fully believing my own words.  "It's just variability."

Sure enough, by the time I got back to the hospital from work you were back to where you were this morning, as though nothing had happened.  So what caused the upset?  Who knows.  Maybe your nasal canula wasn't on properly.  Maybe you needed your nose suctioned.  Maybe you needed your head adjusted.  Maybe you just needed to take a nice, big dump.

I suppose the take away message should be "don't sweat the small stuff," but as always, advice like that is easier to give than to take yourself.  In truth, there are few moments in here where we aren't tense.  If there are, they are tragically short.

The Golden Oak

Illustration commissioned from Tze-Chiang Lim

When Azri was seven years old, his family came to the plains of Anatolia on the fringe of the Sar’pan Emirate to start a farm.  His father brought with him a single golden oak seed and handed it to Azri.

“This will be your tree, Azri,” he said, pressing the seed into his hand.  “Each new limb that grows from its trunk will mark a year of your life.  It will be a monument to our memories here, long after we have passed.”

So with great seriousness, Azri planted the tree in the fresh, fertile soil of Anatolia.  As the hot summer bore on, he watched as a tiny shoot pushed up through the soil.  Sprouted tiny, delicate leaves.  Azri hauled water from the river every day to keep its roots moist.  He guarded the tree carefully and on more occasions than one, chased away hares or herds of bison that threatened to devour or trample the sapling.  As the years went by, the farm flourished into broad rows of golden wheat.  The tree flourished too, climbing above the fields, an auric mentor to the crops around it.  Azri returned to the tree every day when he needed a moment of contemplation.  And when he needed a confidant.

It was lonely on the plains of Anatolia at first, but not for long.  Soon, news of the farm spread and many more families came.  The farmstead and the tree grew with every season.  When Azri was 16, he met a young girl, Tamaya, and they spent their evenings in the limbs of the golden oak, now tall enough to climb, and they swayed together in the fragrant boughs until the sun went down.  When the two were married, Azri made a crown of its golden, autumn leaves and placed it atop the head of his betrothed.     

A generation passed, and soon Azri and Tamaya had a family of their own.  Despite the fertility of Anatolia’s plains, there weren’t many landmarks around which to gather, so the golden oak became the center of the community.  Many a Fall Festival and Rite of Spring were celebrated in the shade of the golden oak.  There were dozens of families now, and the place where Azri’s father first built their farmhouse--- the place where the golden oak now stood--- soon became the hub of a budding town.  In the early days, when migrants set off in search of Anatolia, they were told to search for the golden oak that reached toward the clouds.

In time, another generation came to be, and the children of Azri and Tamaya had children as well.  They built stores to supply the sprawling farmsteads and inns to house weary travelers.  It was a happy time for the people of Anatolia, and during long winter nights, Azri’s children and grandchildren, cousins and siblings would all gather around him to listen to the story of the golden oak around which their community was founded. 

Azri and Tamaya died happy lovers and were buried amid the roots of the tree so that they may remain a part of the place they loved, forever.  Azri’s great granddaughter, Tahire, watched from the boughs of the oak as they were lowered into the earth.  This was the place she was meant to be, she felt, and one day she would meet a boy beneath the limbs of the golden oak just as her great grandmother had, live a full life, and be buried by its roots, as well.    

But then the drought came.

The water dried up all through the Sar’pan Emirate.  The fertile soil of Anatolia turned to dust.  The golden oak began to shed its leaves.  Many of the farmers simply left, but the descendants of Azri and Tamaya clung faithfully to the land upon which their family had flourished.  But when grain throughout the Sar’pan Emirate became scarce, a terrible war savaged the land.  Wicked men scoured the countryside.  The town was burned.  The fields were ransacked.  The descendants of Azri and Tamaya fled in the night and scattered to the wind.  Tahire, still a child, looked back at the golden oak as she fled, its silhouette cast against the stars.  All she had in her hand was a firm walking stick which was shed from the golden oak, a season ago.     

For decades, as her family lived in many rugged places amid the mountains, Tahire regretted having never taken a seed of the golden oak with her.  To plant it in some pleasant land where she might meet a kind boy and start her family.  Tahire did eventually meet such a man and with him she had a single son, Sener, but their troublesome alpine life took her husband from her long before his years were spent.  She raised her son as best she could, telling him of the place far away that was once her home.  Telling him of a place where she sat amid the limbs of a golden oak, beneath which she was meant to be buried, one day.  

There were glimmers of happiness in Tahire’s life.  Like when Sener met a girl and was married.  And when she had a grandson and Sener gave her the right to name him, to which Tahire said immediately, “Azri.”  She always clenched tightly to her walking stick, as tightly as she clenched to those moments of happiness and to her memories of Anatolia.  That is, until the day, late in winter, when Tahire took her final breath.  When Sener looked upon his mother, the worm worn piece of the golden oak still lay beneath her hand.

When spring came, Sener, his wife, and Azri set out with Tahire’s ashes in search of Anatolia.  They didn’t know exactly where to find it.  They spent five seasons searching through vacant prairies and sparse scrublands, having only one clue to guide their way; to let them know the way back to home.  One day in early summer, they at last saw from a distance a golden oak that reached toward the clouds. 

They walked through the plains of Anatolia, now emptied.  When they came to the golden oak, they buried Tahire’s ashes amid its roots so that she may become a part of the place that she loved, forever.

Sener and his family began work on a farm and when his son was old enough to understand, he took him to the tree.  Remembering the stories of his mother, Sener took from it a single seed.

“This will be your tree, Azri,” he said, pressing the seed into his hand.  “Each new limb that grows from its trunk will mark a year of your life.  It will be a monument to our memories here, long after we have passed.”

In time, a second golden oak began to grow far into the sky, an auric mentor to swaying fields of golden wheat and generations to come.

The Curse is Broken!

Dear Ellie,

The bell tolls at midnight.  The weekend curse is broken!  The long evening jacked up on energy drinks afforded me the opportunity to finish a story for you: The Golden Oak.  Mommy and Daddy are off to sleep...  

Sunday, March 23, 2014

The Curse Must be Broken



Dear Ellie,

The weekend curse will be broken, even if I have to stay up all night.  I was tired by 5 o'clock today, but I'm prepared to do battle with all manner of fatigue and delirium.  To this purpose, I've armed myself with an energy drink so dangerously caffeinated that your mother and I have only ever reserved it for the midnight release of highly anticipated video games.  Someday, I hope my body will forgive me.

Little Rocking Chair


Dear Ellie,

This morning, a tiny little baby arrived and the staff kicked us out of the NICU.  It was almost lunchtime anyway, thus an opportune moment to take a trip to Cracker Barrel.  We sat down on the two nearest rocking chairs while we waited for the Sunday crowd to thin out, not noticing at first that there was a little child's rocking chair between us.  When we saw it, it was impossible not to imagine you sitting in it, one day, along with us.  

Still Flying




Dear Ellie,

It's been 3 days now off of the ventilator, and so far there is no major sign that you are wearing out.  No heart rate crashes, no big desaturations, no fast breathing, no backpedaling on your oxygen needs...   I'd say you are just about where you were when you started on CPAP three days ago which, for the first time, is actually a good thing.  The more you challenge your lungs, the more they'll grow stronger.  Still, Sunday isn't over and the weekend curse still prowls.  I'm watching the clock, celebrating as each minute ticks by.

Saturday, March 22, 2014

The POD 1 Elder



Dear Ellie,

Today, I noticed that you had become the POD 1 elder.  The upper classman.  In the NICU, there are numerous PODs: little subsections where groups of babies are kept.  Typically, the PODs that are closest to the front door house the babies that have the fewest problems and need the least care.  The PODs closest to the surgical doors on the far end of the NICU typically house the babies with the most severe problems.  This makes sense since you can generally expect the sickest babies will need to go to and from surgery the quickest.  As a baby gets better, they "POD-hop" closer and closer to the front door until, eventually, they slide ride on out those double doors and head for home.

As of now, it's nearly been two months since you were born.  You are still in POD 1, closest to surgery.  You haven't moved.  POD 1 is part of the NICU 3, where all of the "sickest" babies start their journey.  Right now, there are about 7-8 other babies here in POD 1.  Every few days, a few will come in and a few will go out.  From the beginning, we've seen dozens of babies pass through this POD, but you have always remained.

I've seen babies appear here in the morning that were incredibly tiny like you.  I'll think that you have some new, long term neighbors, but a day later, they are gone.  Were they moved to a new POD?  Or are they gone forever?  None of the staff talk about these things so its hard to say.  Occasionally we'll see a mother or a father--- who we've noticed in the NICU for awhile--- crying.  The next day, we don't see them anymore.

Most of the babies that pass through POD 1 aren't even micro-preemies like you.  There are plenty of 28 weekers and above along with full term behemoths who have pressing, but temporary problems.  Sometimes, we'll get to know the parents a little bit.  More often than not, a week or two after they arrive they are on their way home with their babies.  "This has been the hardest week of my life," they'll say, and I'll think behind us to the months you've suffered already and the many more to come.  I would smile through my envy and congratulate them, but I don't envy them anymore.  A few days ago, I heard about another 24 weeker that was still on the oscillator ventilator after 2 months.  It only took you 3 days to move off of the oscillator, so I know that poor child will probably be here a lot longer than you will.      

When you were born, there were two other babies here in POD 1 long enough to get to know.  One was a girl, who's twin had died.  The other was a boy, who had severe respiratory problems.  A month ago, the girl moved on to another POD.  A few days ago, the boy did as well.  Now its just you.

I feel as though you are a permanent fixture of this community.  When I walk in and see your isolette in the same place that its always been, its almost like seeing an old lighthouse or an ancient, venerable tree growing in a town square.  You watch as generations march by you, love one another, have children, grow old, and move on to the nether.  The landscape shifts around you.  Buildings are assembled and torn down during disasters.  And through it all, the only thing that remains is you.

Friday, March 21, 2014

The Weekend Curse

Dear Ellie,

Today, you are flying high.  You've done far better off of the endo-tracheal tube than we ever thought you could, but your mother and I are wary of saying so.  Even the doctors and nurses are impressed with your trajectory, but whenever they tell us so, they lean in and whisper: "But don't tell Ellie!"  Your blood oxygen levels are high, you are breathing steadily, your blood gases are improving, and your heart rate is better than it has been in a long, long time...

But... we're coming up on the weekend.  The dreaded weekend.  It's been roughly seven weeks since you were born, and every weekend, without exception, something goes wrong and all of your progress is snuffed out.  Last Sunday we thought we were going to break the apparent curse but 30 minutes before the stroke of midnight, you nearly suffocated.  

Maybe, this time, you'll beat the curse for good.

The Most Terrifying Micro-Preemie Condition Of All...


video

Dear Ellie,

Today was a scary day.  Just moments ago, you began exhibiting symptoms of the most frightening micro-preemie condition of all: Metamorphesis PrairieDogpathy.  It's a rare condition, but one in a thousand micro-preemies are known to inexplicably turn into prairie dogs.  Your mother first noticed evidence of this tragic condition when she heard a peculiar "barking" sound coming from your isolette.  Now, we're more on edge than ever before.

The nurse insisted that the sound we heard was, in fact, not actually barking but instead, "hiccups."  I replied: "Psssssch, sorry ma'am, I've done my research (on Wikipedia.)  I think I know my daughter.  And she's turning into a prairie dog."

I suppose I need to accept the outcome, whatever it may be.  Prairie dogs are pretty adorable and they are definitely a step above cats in my book.  Perhaps we can come to accept, and find peace, in whatever the outcome might be.      

Keeping Eyes Open for Retinopathy

Dear Ellie,

In a few days we'll be testing you for Retinopathy.  One of the common conditions of prematurity is abnormal blood vessel growth in the eyes, which can cause the retina to detach.  The early stage of the disease is common and treatable, but if left untreated, may lead to blindness.  Even just a few years ago, blindness due to extreme prematurity was extremely common.  Now a days, not so much.

You have roughly a 75 percent chance of getting some stage of Retinopathy, but its unlikely you'll advance to any of the further stages, especially with treatment.  If you'd been born full term and I was told that you might become blind, it would have worried me sick.  But now?  Just one small hill of a worry dwarfed by mountains.

Thursday, March 20, 2014

Sliver of Sun


Dear Ellie,

Tonight is a good night.  The ET tube has been out for 15 hours now and you are doing far better than we anticipated.  Your oxygen level is about half what it was the first time you were extubated.  They started you high, but throughout the day your O2 needs tumbled down and down and down.  I've never seen you so relaxed.  You aren't constantly flailing in pain like you were before and your blood oxygen level is very stable.  Once again, there is a high chance that you will slowly wear out from breathing on your own.  At first, it seems so strange that breathing should be such a chore, but then I remind myself that you should be floating around in amniotic fluid right now and it makes such simple sense.

As of now, the specter of reintubation is never far off, but for now, I'm as relaxed as you are.  In the isolette, your arms are thrown back and legs stretched outward, like a house cat lounging in a sliver of sun on the windowsill.

I Will Make Worlds For You

Dear Ellie,

There are bigger things behind the stories that I've been writing you.  Most of them aren't just meant for diversion or amusement.  To some extent, I want them to be part of the emotional and intellectual landscape of your mind when you are young, and even as you grow older.  I want them to infuse you with the idea that its never bad to think or ask questions.  And beyond that, I want them to teach you that the journeys that we take in our minds can be just as exciting and meaningful as the ones that we experience in life.  This is an important lesson I would want to impart to any child, but doubly so for you.

I don't know what difficulties you will have in your future.  They may be few or many.  Mild or Profound.  Regardless of what they are, though, I want to make those troubles seem small with the stories that I invent for you.  I will make you a part of them, as well, so that you'll never feel as though there are things in life that you are missing.  We'll play games, nested in grand narratives, and you will be a character.

Maybe you'll grow older and have a hard time understanding numbers, but why will that matter when you are the proud daughter of an affluent merchant dynasty, counting your wealth?

Maybe you'll have problems with your speech, or trouble communicating with others, but that will seem like a small problem if you can strum in the voice of a Soul Kind.

Maybe you'll have trouble walking, running, or swimming, but you'll never envy others for these things, because you will be a Martian colonist, hopping along the surface of the Red Planet in low gravity.

Maybe your condition will keep you from traveling and seeing the world, but why would you need to?  You'll float through the clouds inside of an invisible sphere.  You'll swim through the oceans of an exotic moon with Oliver the Eel as its tides are hauled across the surface by a gas giant.  You'll take a journey to the edge of the world and discover that to live, itself, can be purpose enough in life.  

Some people might frown on these flights of fantasy.  They might tell you that they aren't real and aren't meaningful, but I would say otherwise.  All that we experience in our lives is painted on the canvas of the mind, so how real we want an experience to be, corporeal or imagined, is up to us.  Live in these places with your mother and I, and we will always live happily.

The Mouse that Roared


video

Dear Ellie,

Today, with the endo-tracheal tube no longer blocking your airways, you cried like a real baby for the first time.  Or at least tried.  I was surprised.  The last time you were extubated, you gurgled a little bit but that's about it.  This time it was a nice, sustained expression of despair and distress.  You had trouble getting the decibels up there, though,  so it sounded a little bit more like one of those half-drowned cats I was talking about in one of the earlier letters.  Sadly, I wasn't there to witness it but your mother recorded it for me.  Apparently, she was in ZOMG-MOM-MODE the whole time, desperate to make whatever ill that was bothering you go away.  Having never seen you cry after 2 months of ceaselessly watching over you, I'm sure she had lot's of pent up mommy instincts just bursting to get out.    

Sometimes, There is no Right Decisions

Dear Ellie,

This morning, you were extubated again.  Not by accident like the last two times, but on purpose.  Your mother and I had to make a decision: give you a dose of steroids or extubate without them.  We chose to go without them and give you one fair chance off of the endo-tracheal tube.  It was a difficult decision and we didn't jump to any conclusions.  Difficult, because there is a chance that tiny doses of the steroid Dexamethasone would actually have no measurable influence on your brain development what so ever.  If that's the case, then we've thrown away a useful instrument for your recovery.  The truth, however, is that no one knows the true effect of the protocol in question, yet.

The medical literature on Dexamethasone at HIGH doses is clear.  It unambiguously scrambles the brain.  There has been about 4-5 periods of Dexamethasone over the course of 30 years.  Each time, doctors thought that it was perfectly safe after dosage levels were reduced.  Each time, they eventually discovered that they were wrong.  So the newest protocol recommends an even lower dosage and again, THIS time its supposed to be safe.  Indeed, when you look at the abstract for the study in question, the treatment looks promising.  However, when I examined the actual raw data, not so much.  The study only met 5 percent of its target sample size, and as I've probably told you now about science, meager replication frequently yields meager results.  What's more, the p-values are marginally significant and the apparent positive effects are questionable.  The raw data shows that the treatment group WAS worse off when it came to brain development, and because the sample size was so small its hard to tell whether there would have been a statistically significant result with more replication.  When I brought these concerns up with one of the doctors, well, he didn't seem to have read the study--- upon which your steroid treatment would be based--- much beyond the abstract.  So anyway... I don't want to bog you down in the muck of statistics.

To summarize, the effects at that dosage are still poorly understood for a micro-preemie of your age.  Maybe it can stifle brain development.  Maybe not.  Maybe it can improve long term long outcomes.  Maybe not.  So really, what we're doing with either decision is exchanging a maybe for a maybe.  We've chosen to temporarily forgo a treatment that might help your lungs so that it might not hurt your brain.

A parents always wants to do whats best for their children, to carry whatever weight they can on their own shoulders so that their children do not.  But for us, there is no such choice.  All we can do is grapple with uncertainties.  I wish I could say that we made the right decision, but sometimes there isn't an obvious right decision.

Wednesday, March 19, 2014

First Family Photo


Last night, we took our first family photo together.

You Look Ridiculous...ly cute.




Dear Ellie,

Last night, you tried out that whole clothing-wearing-thing.  I'm not sure why people do it, but I just go along with it to be polite.  For you, it's a rather important development because once preemies graduate to clothing, it means they are mature enough to regulate their own temperature.  Unfortunately, unless we were to raid the toy store and purchase doll clothing, nothing could fit you.  So we just had to go with "big kid clothes" (aka, regular preemie clothes).  I know this picture doesn't really show the extent of the ridiculousness, but the footies were big enough to fit your entire calf.  I suppose the glass-half-full perspective would be that there is plenty of room for you to grow into.  Now, getting you into the outfit was another story.  It took me about 3 minutes to slip your arm in because you kept clutching the inside of the sleeve every time I tried to pull your hand through.  It was like trying to force a cat into the shower.  Once I finally succeeded, you immediately blew out your diaper and soiled the entire onesie... so we started all over again with a new one.    

I think you'll get used to the whole clothes thing eventually.  While I don't get why its so important, Mark Twain pretty much summarized why clothes are necessary: "Clothes make the man.  Naked people have little to no influence in today's society."

Tuesday, March 18, 2014

Taking a Break From Breathing

Dear Ellie,

The infection in your lungs appears to have cleared up, so you seem to be wiggling in the right direction.  We've been discussing with the doctors what to do next, and it looks like we might give you one more chance to fly without the steroids.  I'm convinced that you didn't have a fair shake, last time.  But it depends on your behavior these next few days.  If your respirator needs go up, we'll probably have to juice you up with "performance enhancing drugs."  If they go down, then we'll kick you out of the nest and see how far you make it before you smack into a tree or get snatched up by a hawk.  Nature is cruel sometimes, dearest.  Survival of the fittest.

I feel a lot more confident than the doctors that you can do well off of the endo-tracheal tube.  On the tube, you tend to slack off; fail to live up to your true respiratory potential.  When your blood oxygen level is low, you breath like crazy until you get to 100 percent.  Because the ventilator is taking extra breaths FOR you, something in your baby brain tells suggests that you should take a breather from... uh... breathing.  At that point, you let the ventilator do all of the work for you and the oxygen in your blood promptly declines.  At this point, the cycle continues and you start breathing again like crazy until you are back at 100.  This seemed to bewilder the respiratory technicians, at first.  All of them were utterly convinced that you had a heart condition and that all of your blood was being shunted to one side of your body, then the other.  Apparently, a heart defect and laziness look very similar.

On the CPAP, you didn't get any "freebie breaths."  You had to take them all on your own, so at no point could you just take a break and let the ventilator do all the work for you.  As a consequence, your blood oxygen levels remained more consistent.  There was no room for laziness.  I've taken note of this detail for parenthood, later.  You'll be doing your own science fair projects.  I'm afraid that if I help you, I'll end up doing them all for you.    

Perspective

Dear Ellie,

It's amazing how a catastrophe can make all of your other problems look tiny.  How it puts them into perspective.  Yesterday, after it appeared that you had weathered the episode without any lasting damage, we couldn't feel anything but relief.  It didn't matter to us that you were back on the ET tube and ventilator or that your trachea might be scarred or that you had fallen back, yet again, to the place you were a week ago.  You are alive, which is an infinitely better outcome than what we thought a few hours before.

But now that you are back to your old self again, those "smaller" problems that we'd forgotten about are now back in focus.  You've almost reached the two month mark, and that's the point that you really, really need to be off of the ventilator.  Your respirator support is still quite high, so the idea of moving you off onto CPAP again is unlikely to happen unless there is some kind of steroid dose.  Then again, you could always yank the endotracheal tube out again, which would give you your second chance.  Everyone seems to think that you wouldn't have lasted much longer on CPAP anyway.  I wonder whether that's true...      

Monday, March 17, 2014

Assessing the Damage

You look like your old self again.  I reached into your isolette to move your hand.  It was clutching your ET tube and was afraid you might pull it out again.  It wasn't easy to remove your grip.  "Nooooo," your stubborn determination seemed to say.  It was a kind of stubborn determination that few parents would ever wish to deal with, but in this case, it was such an incredible relief to see.

I had a talk with Dr. Brutal Honesty, this afternoon.  I'm not being sarcastic when I say that he's my favorite doctor because he has no qualms mentioning all of the horrible things that could happen to you in here.  "Why would this make him your favorite doctors?" you might wonder.  Well, because I can trust what he says.  I can take his words at face value.  Most of the other doctors try to shield us from the truth.  While this might relieve the parent of a patient momentarily, it creates an atmosphere where you can never entirely trust what they are telling you.  But Dr. Brutally Honest?  Were you to ever be in deep, irreparable trouble, Dr. Brutally Honesty would casually acknowledge it.  As a result, when things are going well, we can rest easy because we know we've been told the whole truth.  While every other doctor in here has a habit of saying, "Everything will probably be fine!" when things obviously won't be, Dr. Brutal Honesty instead will grin and say things like, "It's better to set your expectations low so that you won't be disappointed if things don't work out."  

So to get to the point, I asked Dr. Brutal Honesty about your episode last night.  It obviously wasn't a good thing, but after examining the evidence, he's not convinced that it would cause any big problems.  As it turns out, your blood after the episode didn't show signs that you ever completely ran out of oxygen.  If you had, your cells would have started making energy via anaerobic channels, thereby generating lactic acid.  This would have acidified your blood, yet when they checked, your blood was the opposite of acidic.  It was slightly alkaline.

What's more, while your heart slowed to just a few beats per minute, it never stopped beating entirely, so even though your blood was quite depleted of oxygen, the oxygen you did have left was delivered in some measure to vital organs.        

But everything isn't roses.  You've been reintubated, and as I write this, I'm watching you writhe about from the tube in your trachea.  Once again, we're back to where we started.  Somehow, it's never felt like such a relief.

How Long Was I Gone?

Dear Ellie,

For the past 18 hours since the catastrophe, I didn't cry until a moment ago.  I've had too many opportunities to say goodbye.  I thought I'd seen every species of sadness and tears so many times that they seemed dull, by now.  All through the morning, as you lay there, as you twitched with only flickers of life, I was calm.  Was I already in the acceptance phase of grief?

The nurse went into your isolette to do the "hands on."  To take your temperature.  To change your diapers.  It felt like a perverse thing.  Like we were changing the diaper on a doll or baby-shaped effigy.  It seemed like pretending.  Like denial.  That's when you arced your back and flailed your limbs.  You swatted the nurse's gloves.  "Hands off me, you bastard!" you seemed to say.  You wiggled and twitched in pain.  In pain.  Like you had before too, when the ET tube was in.  I'd never been so happy to see you in pain.  To see your forehead wrinkle and mouth open wide.  Expressing pain is a complicated mental task.  It requires numerous layers of neural activity.  Then your eyes opened up.  You looked around in bewilderment and blinked, as if saying, "Whoa.  How long was I gone?"

I didn't want the nurse to get distracted by me, so I fled to the corner of the NICU and cried.  They were a new kind of tears.  Tears of happiness contaminated by hours and hours of grief and futility.  It made me realize that there must be an infinite variety of tears.  That there will always be unexplored corners of emotion and human experience.

The nurse tuned down your respiratory support.  Having rescinded your right to slack, you started breathing again on your own, consistently.  There was no more steady, sterile breath line at mechanical intervals on the monitor, anymore.  Instead, that line was messy with life.  You wiggled and squirmed in frustration.

I know you had a hard night, but its time to get up for school, whether you like it or not.

Welcome back, Ellie.  

         

Will You Ever Understand These Letters?

Dear Ellie,

It's been 12 hours, now.  There is a certain feeling of futility in continuing to write these.  I'm not certain of whether you will ever be able to read them.  To your mother and I, the brain is the seat of humanity.  Of "self."  I'm not sure how much of yours is left.  All of it?  Some of it?

I don't know.  Some of it, surely, because you are moving.  There's still some wiggly Ellie in there.  You can still grip my hand.  Suck on your ET tube.  But it's like everything you do is half of what it was before.  There was so much strength behind those limbs.  Now they are weak.  Reluctant.  Your breathes are irregular.  You spend long spans just letting the ventilator breath for you.  When your oxygen desaturates from your blood, there is this long delay before you recover.  As though you are staring at a simple math problem but can't find the answer like you did before.  Like some important part of your brain is gone.  "How do I do this breathing thing, again?" you seem to be thinking.  I haven't seen your eyes open.  I'm afraid to see them.  I wishfully think that, perhaps, you still haven't recovered your energy from the night before.  Are you still just tired, 12 hours later?  Can it take that long to recover?  Would I be just as tired half a day later, after a marathon?

You are only ever supposed to be handled for perhaps 15 minutes at a time.  Last night, it was an hour and a half.  An hour and a half of prodding and turning and unconscionable stresses put on your lungs.  And brain.  When your mechanical oxygen support failed inexplicably, the staff struggled for about an hour with no results.  Maybe longer.  I was struggling to simply find the will to stand, so it wasn't easy keeping track of time.

They couldn't find the reason for the problem.  A machine, perhaps, was broken.  Or perhaps it was the air line.  Or maybe the air intake.  Or maybe the canula in your nose.  You were kept alive with an imprecise "hand powered" respirator during that time.  Or I should say, some of that time.  They never did discover what was wrong.  You turned blue three times during that hour.  The last time was the worst.  They tried to reintubate you, but failed again and again.  All the while you were off of any kind of support.  You turned deeper and deeper shades.  It was so obvious to me at that moment that we were watching you die.

I was astonished, a few minutes into your suffocation, when you kicked defiantly.  Or was it a seizure?  I don't know.  Your heart slowed to a crawl but never stopped beating... I think.  You never stopped breathing... I think.  If there was enough oxygen for your heart to continue beating, does that mean your brain had enough oxygen, too?  My memory is so scrambled.  I don't know how long you went without oxygen.  How long is it that a person can drown before their neurons begin to flicker out, for good?

Your mother moved your hand a moment ago.  I wanted to see you fight us like you had before.  I wanted to see that defiance and insubordination.  There was nothing there.  When I touch you now, you already feel like a memory.

I'm tired of people talking about miracles.    

The Sounds of Life Around Us

Dear Ellie,

I don't know how to describe what happened.  I feel like I could go crazy if I don't put my thoughts to some purpose.  It had to have taken more than an hour.  Each minute, we were certain that this time you were gone.

I look at you now and I wonder whether you are still in there.  Inside of that body.  How could any baby go so long without oxygen?  Without the brain being scrambled?

All around us are the sounds of life.  Babies crying.  Staff laughing in a far off pod.  But in your isolette, there is nothing, just the rise and fall of your chest as the ventilator gives you its calculated breathes through a tube down your throat.  You aren't moving.  Your mother saw your eyes open right after the things that went wrong.  They were unmoving.  Unblinking.  Just staring into space.

Did you live only long enough so that we could fall in love with you?  Before the machines failed, I was writing you a story about two children that wander into the woods and find a special place that time cannot touch.  I wish I could find that place.  Find it so that you would be with us forever.

Sunday, March 16, 2014

When the Booger Hits the Fan

Dear Ellie,

Heart stopping events happen about once a day here and sometimes the cause is something you never expect.  Just moments ago, the respiratory technician was suctioning your nostrils to make sure there was no obstructions and, well, there was an obstruction.  A big, fat, bloody booger.  A dry booger.  We laughed about it a little bit, but that burgundy and green colored ball of dried mucus was making me nervous.  For good reason.  Your blood oxygen level began to drop.  We all stood there, watching the monitor, waiting for you to come back up.  You didn't.  Something wasn't right.

I looked inside your isolette and found blood pooling around your CPAP from your nose.  Remember, your CPAP delivers oxygen through your nostrils.  The respiratory technician went in again and began suctioning your nostrils.  A long, thick gush of blood shot through the suction tube.  Then another.  Then another.  You started turning pale.  You hovered at 50 percent oxygen for some duration of time I can't seem to remember.  I just know it was too long because your mother saw you turn blue for the first time.  I remember thinking right then all of the things that I thought might do you in.  Ruptured intestines or brain bleeds or infected blood.  But boogers?  Really?

Slowly, you turned back to just pale again.  Your oxygen came up slowly, staggering here and there.  The blood on your nose and mouth was clotted.  It appeared as though, perhaps, things were fine.  So I started writing you this letter, and halfway through, something else went wrong.  The machine responsible for your respiratory support broke for some inscrutable reason.  They brought another one, unplugged the wires and reconnected you.  That one didn't work either.  Apparently, the NICU is the first phase of a vast robotic rebellion.  So why am I still writing a letter while you are being kept alive by hand powered respiratory support?  Well, its been half an hour with no solution and I might go crazy if I don't have something to do.  I feel like someone recording a terrible event on their cellphone camera, helplessly, with no power to intervene.                     

In truth, I'm scared out of my mind.  With a dysfunctional computer, I don't think they could reintubate you even if they wanted to.  If you decide that a hand held "bag" is suddenly not how you want to breath anymore...  I don't know.  This whole thing is almost comedic.  And I have no idea how much longer this could go on.