Monday, April 28, 2014

Off the O's for Good



Dear Ellie,

This time, it really is official...  no more oxygen!  For about a week, you bounced on and off the canula but as of 3 days ago, you came off and haven't looked back!  So with eating and breathing out of the way, nothing remains between you and home!  The date is set: this coming Friday.  Unfortunately, as if on cue, I got sick this past Saturday before the baby shower.  It's been 3 days since I've seen you and it may be longer.  Your mother has kept her distance too just in case she catches it from me.  It's hard being away from you and your mother, but pretty soon we'll have all the time in the world together!                  

Sunday, April 27, 2014

Baby Downpour


Dear Ellie,

Yesterday was your baby shower.  I think its called a baby shower because gifts are basically precipitating everywhere.  As you can see from the picture above, we were nearly drowned in the affection of friends and family.  Had you been there, only one little footie would be sticking out from all of the boxes and gift wrap.  A more accurate description of the occasion would have been a "baby downpour" or a "baby landslide."  So to summarize, baby showers are dangerous, Ellie.  If you ever have a baby that a lot of people care about, wear a rain coat and head for high ground!

In all seriousness though, it was a very pleasant time.  We all went to faux Grandma and Grandpa Hightower's place and faux Aunt Danielle and REAL Aunt Danielle prepared a Hawaiian/Peacock themed event.  There were around 60 guests or so by my count, which meant lots and lots of free stuff for you!  Instead of cards for you, all of our guests brought their favorite childhood books instead and wrote you a message for when you are older.  In other words, we've already built an Ellie library!

Friday, April 25, 2014

The Ellie Itch


Dear Ellie,

It's official.  Your mother and I are beginning to go crazy.  If we were told that you had 3 more months to go in the hospital, we might not feel this way.  However, you've stalled inches from the finish line.  Every day is the day we might take you home, but upon the setting of the sun, the finish line is pushed back by another 24 hours.  A week ago, you were likely a week from going home.  Now, a week later... you are again a "week from going home."  You are clinging to a tiny, tiny bit of oxygen.  Technically, you could come home with us now since you've passed your car seat test, hearing test, and just about every other diagnostic.  However, it's just that tiny bit of oxygen...  Ironically, if your respiratory support were greater, they'd probably just send you home on respiratory support, but your oxygen support is so tiny right now that it doesn't make sense to send you home with thousands of dollars worth of instruments if you are just going to wean off of it a few days later.  The idea is that its probably just better to wait a few more days in the NICU, wean off here, and go home "low tech."  

I'm inclined to agree with this perspective, but the "itch" to take you home is grating on us.  I find myself running little thought experiments in my head...  For instance, if you mother was waiting in a getaway vehicle at the hospital front entrance, could I snatch you out of your crib and make a go for the exit before security took me down?

Thursday, April 24, 2014

Bye bye, Ellie-phant ears

Dear Ellie,

This letter is all about your ears.  The first important bit of news involves your hearing.  Since you were given antibiotics for your infections on a number of occasions, there was an acute chance that your hearing could be damaged or even gone all together.  Your mother and I wrung our hands for awhile because you didn't seem to respond much to the wailing babies and ear piercing alarms around you.  Just recently though, you had your hearing test and it appears that your hearing is just fine!

Oddly, I hadn't looked at your ears for months until just yesterday.  I still remember in the days after you were born, your ears were like elephant ears.  They had almost no form or structure of their own and when you laid on one side for too long, your ears would roll up into little burritos.  The nurses had to unroll them in order for them to grow in properly!  Somewhere along the way, however, your little elephant ears became real ears!


Seeing them appear on you like that, fully formed, made me look at the rest of you in relation to what you once were.  Now, at 5 pounds, I'm amazed by how much you've changed.  I remember your eyes used to be fused shut.  Your body was a featureless, translucent, veiny mass.  Your butt was completely flat.  Your arms and legs were twigs.  You didn't have a single bit of fat on your body.  Ten weeks ago, I couldn't possibly imagine you as you are now.

Tuesday, April 22, 2014

The One Puzzle Piece


Dear Ellie,

Every day when your mother and I come to stay with you, the path to the NICU leads us through the waiting room of labor and delivery and past the full term nursery.  Being in and out of the NICU numerous times a day has exposed us to the story of childbirth for many months now.  Every time we come in and out, we see little snapshots of that story.  A baby slowly making its way toward postpartum in a wheeled bassinet.  A pregnant woman pacing the hallway.  Family members camped out in the waiting room, their faces some mix of suspense and boredom.

It's as though the story of childbirth has been chopped up into tiny little puzzle pieces.  Stick around long enough, and you see that story reassembled scores of times from a thousand different lives.        
Sadly, we won't ever experience that story for ourselves because there is only one piece we share in common with it: when at last we will take you home  And even that one piece seems like something that belongs in some other life, not ours.

I've lost count of the number of families I've seen disembarking the hospital, baby carrier in arm.  For the first 2 months after you were born, I'd just look at them blankly as they left, unable to imagine that we'd one day be doing the same.  The evidence of our first two months in the hospital shouts otherwise.  Pregnant women come in every day and leave the next with a baby.  For the longest time, whenever I walked by the full term nursery, I glance across the cribs filled with those full term behemoths.  Creatures that appear as though they belong to some entirely different species of life form.  Then I'd move on to the NICU to hold your tiny little body.  How could we possibly have an ending like all the other parents, I wondered, having come from such a different place?  To me, it seemed far more appropriate that the three of us would board a rocket ship upon your discharge and blast away for some life in deep space, as though your NICU stay was just the beginning of our high tech journey.

But now?  We come to the hospital every day knowing that, perhaps, we might be leaving with a baby the next.  When I walk by the full term nursery and then come to visit you, those babies don't look very different than you, anymore.  I'm beginning to feel as though that one little puzzle piece might snap into our lives, after all.

Monday, April 21, 2014

Filling an Ellie Shaped Hole in Our Hearts

Dear Ellie,

For the longest time, there was an Ellie shaped hole in our hearts.  An Ellie shaped hole that we tried to fill with cats.  There were three of them in all, which was two more than required to meet the "crazy-cat-people" threshold.  Before we started accumulating cats, we used to make fun of people like ourselves.  How far we have fallen.  We only ever wanted just one cat, but whenever there was some wretched animal in need, our hearts melted and we added another liter box to the corner of our house.

Lucky looking all fluffy and 'sploded

The first unintended cat was Lucky.  We met Lucky when your Uncle Zack told us about a poor cat that was neglected during kitten hood and was now living at the vet.  When we went to see her, she looked up at us with her big, dumb eyes and began rubbing us furiously with her massive fangs (which we surmised meant that she either loved us or wanted to eat us).  When we took her home, though, our original cat, Chicken-the-Unrepentant-Bastard-Cat, attacked her.  Poor Lucky was miserable, so we decided to return her back to the vet.  Lucky snuggled me all the way to the vet in order to make me feel like a horrible human being.  I left her in the car when I went inside and the receptionist at the vet greeted me and said, "How are things doing with your cute little kitty!  I think its so wonderful that you found the goodness in your heart to take in an animal in need!  Now what were you here for?"

I skulked around a bit, and having no other viable excuse for why I was there other than to give Lucky back, I left a $50 donation instead.  I departed after that, cat still in tow.  Lucky has been our extremely fluffy, loyal animal companion ever since.

Missy chilling on my lap, watching Walking Dead with me      

Our second unintentional cat was Miss Fortune, or "Missy" as we call her now.  When Missy showed up at our door, she had chewed up ears, arthritis, a gaping wound on her leg, and was utterly covered with scars.  One such scar was on her neck from some prior, grave wound which made what would have otherwise been a cute "meow" sound more like a "smoker's meow."  Apparently, our neighbors had her declawed and then tossed her to the curb to be chewed up by neighborhood dogs.  She had a few "trust" issues initially given her history, but we fixed Missy up and despite the abuse and she turned into quite the loveable lap cat.  Now, she follows me wherever I go.  It's amazing what love and kindness will do.

Unfortunately, due to your chronic lung disease, our nice, fluffy kitties can't stay with us any longer.  Too many allergens could cause some pretty severe issues with your breathing, not to mention both of your parents are already asthmatics!

So why have I mentioned the cats here in your letters?  Well, a lot of people are following your journey, it turns out.  Perhaps, if Lucky and Miss Fortune are lucky and fortunate enough, some gentle soul that is reading your letters might come and rescue them!...  otherwise, its off to a shelter for the both of them!  It'll be sad seeing them both sitting in cages underneath a leaky roof.  Shivering.  Dejected.  Hair matted and skinny from starvation.  An expression of betrayal in their eyes.  People generally don't like black cats even if they are nice, so I'm sure that Lucky and Miss Fortune will be whisked off to the chopping block or shipped away to the kitty cat glue factory...  Unless someone were to take pity on them and takes them in, of course!

Like You'd Been There All Along







Dear Ellie,

This weekend, we neglected you so that we wouldn't neglect your nursery.  We went to the Smith House and began work on the walls.  We wanted to paint something that was beautiful and a little bit abstract.  Something that would stick in your mind as one of your earliest memories.  We settled on butterflies that migrate around the room to, and from, a whimsical tree, tossled about by the wind.  The fact that we had 0 manual dexterity when it comes to artwork made this tricky though...  so we conscripted Grandpa and told him what we had in mind.  He sketched the tree from ceiling to floor and then your mother and I did our very, very best to color between the lines.  I'm sure you'll know the tree very, very well by the time you read these letters.

The whole thing was quite nostalgic, actually.  Half my lifetime ago, I was in the same room around the same time of year doing something very similar.  I was 15 years old then, and your mother and I were dating.  Because she'd gone out of town and I missed her, I decided to stick thousands of tiny glow in the dark stars on the ceiling.  I replicated the major constellations, added a dense Milky Way, and then surprised her when she was back in town.  Fifteen years later, most of the stars are still there.  It'll be an odd feeling when you finally leave the hospital and take up residence in that room.  It will feel as though you are nestling in next to our memories, too.  Like you'd somehow been there all along.

Sunday, April 20, 2014

Climbing Milk Mountain



Dear Ellie,

In the photos above, that's about 2/3rds the breast milk your mother has banked for you.  Overall, its filled 3 big freezers top to bottom.  Apparently, this is what it takes to feed a baby your size for about 3 months.  The reason we have so many reserves?  To put it simply, your mother is a one woman dairy.  A mammal that would inspire envy in any cow, if they knew such an emotion.

Early on she set quotas for herself and then pumped extra if she didn't meet them.  About a month ago, her milk makers even started producing so fast that she didn't know how to stop them.  We thought they might start shaking or vibrating or explode or something.  It sort of reminded me of Scotty from the old Star Trek series: "Captain!  We canna go on much longer like this!  It'll tear the ship apart!"

Your mother pretends to be modest about her boobs in the "lactation station" (where all of the women pump) here at the NICU.  As waterfalls of white mana pour from her mammaries, other women look on teary eyed at their own measly 10 milliliters.  She'll give them advice and try to comfort them.  "Don't feel bad, you'll get there," she says, but in her mind, I knows she's also thinking: "Forsooth, I hath vanquished thee, knave!"        

At any rate, because of your mother's innate competitiveness, you have a virtual mountain of milk to consume.  I'd say you have quite a climb ahead of you.  With any luck, if you too have the grit and determination of your mother, you shouldn't have a problem.  One bottle at a time, Ellie.  What was that Confucian saying?

"The baby who moves a milk mountain begins by carrying away small stones."

Saturday, April 19, 2014

Half Off

Dear Ellie,

You've mastered the whole eating thing but unfortunately, you can't seem to kick the oxygen habit.  You've been weaned down to the smallest bit of supplemental oxygen possible, 25 ml's, but when they take you off of oxygen altogether, you just can't stay afloat on your own for too long.  When you get down to it, 25 ml's is trivial.  It's almost like a placebo.

Anyway, throughout the day, you'll go on and off, on and off.  I was hoping you'd be off oxygen entirely by your 36th week but it looks like instead you'll be... half off.  Given that everything else seems to be working properly, I guess that's a small thing to complain about.

Friday, April 18, 2014

The Car Seat



In the NICU, nurses and doctors are often reluctant to say, "Your baby will be going home, soon."  What they do say (which is roughly synonymous) is: "You'd better go out and buy a car seat."

Threads in a Tapestry



Dear Ellie,

Last night was the first time I think I've ever spent a full hour with you free of worry.  It was just the two of us.  You laid on my chest, passed out in comfort.  I tilted my head to put my cheek on your hair.  We took breathes together.  I was happy in the simplest sort of way, and I had the distinct impression that you were, too.

Some people measure their lives by how many big things they have achieved or exciting places they've gone.  They desperately search for that next brief moment of great volume that will drum out the rest of those yawning stretches that occupy the rest of their lives.  But me?  I've always measured my life quite differently.  I measure it instead in quiet, happy moments.  Like a mild breeze on a cool autumn day.  A smile or a kiss shared with your mother.  A subtle recognition of some intricacy of our world, newly discovered, but always there.  A simple moment with my daughter.

I don't want our lives together to be defined by a few, resounding things.  I want them to be defined by an uncountable number of wonderful, tiny ones.  So many and thorough that they all blend together, like threads in a tapestry.  I promise that this moment we've shared together will be one of millions.

Thursday, April 17, 2014

Two Months Later


Dear Ellie,

When I saw a new picture of you and your mother, I couldn't get over how big your head was.  Granted, I think you are just a little bit closer to the camera than your are to mom, but still...  The first photo was of you a few weeks after you were born.  The next photo is from yesterday, just two months after the previous photo was taken.

Beneath the Stairs

Dear Ellie,

Since we're moving into the house that I grew up in with Grandma and Grandpa, it got me thinking about little stories I could write you about that place, some fact, some fiction, and some... both.  Your mother has been telling me not to ever read you this one, since its another "ghost" story like the Bicycle in the Tree.  And like the Bicycle in the Tree, part of it is fiction and part of it is fact.

------------------------------------------------------------

When I was growing up, there were five people in my family and we all lived in one big house.  Sometimes late at night, though, I became convinced that we were not the only ones living there. 

There were many dark recesses in that home, some of which I continue to discover to this very day.  Plenty of places for some thing to sleep by day and emerge at night to live a parallel life beside our own.  There were the “caves” beneath the deck.  The hut at the back of the attic.  The cavernous air ducts that are accessible from the grate near the front door.  And as you will learn, other places too. 

Throughout my childhood, I woke up to the sound of things going bump in the night.  A crash in the kitchen.  Thuds on the staircase.  Creaking in the attic above where I slept.  Sometimes in the morning I’d notice objects slightly out of place from where they were the evening before.  There might be a picture frame turned down or cereal missing from the pantry or some of my clothes had vanished, never to be found again.  One night, I even awoke to find that my stuffed alligator “Al” was missing, as though snatched from my hands as I slept.   

I never volunteered to investigate the strange sounds during the night, for it would have taken more than just the courage of a child.  But sometimes, I didn’t have a choice. 

When I was nine years old, I began to sleep walk.  I’d often wake up late at night when all the lights were out and find myself downstairs, alone on the couch or sitting upright at the dining room table.  At some of those times, I’d even stir from my slumber, glance around in the darkness, and hear the quiet sound of feet tip toeing across the tile floor in the kitchen.  On one such occasion, I came awake while still standing.  I was confused, unaware of what had woken me from my sleep walking episode… until I saw a dark figure.  Or at least, the dark space that it left as it blotted out the moonlight that reflected from the kitchen tiles.  It was still for just a moment, then it vanished in a sudden blur.  All I heard was scampering and the creak of a closet door.  The door to the closet beneath the stairs.  
The Closet Beneath the Stairs

In the morning, I thought perhaps that it was all a dream.  So I forgot about it for awhile until a few months later when I was rifling through the closet beneath the stairs.  It was then that I discovered yet another one of those dark spaces.  One of those unexplored recesses in our home.  At the very back of the closet, where the ceiling gets so low that not even a child can stand, there was a dark, cramped passage.  It frightened me just to look at it.  That wall of darkness.  I grabbed a flashlight from the shelf.  Turned it on.  Kneeled down and flashed it through the passage.  The darkness seemed to swallow the beam of light, but it gave me just enough illumination to see a secret room, dusty, but not empty.  There was a bowl and a spoon inside, some old paper towels, and my stuffed alligator Al, who went missing long ago.        

My impulse was to reach out to rescue Al, but then it occurred to me that he couldn’t have gotten there all on his own.  As I reached out to grab him, my skin began to crawl.  For each inch I moved toward the shadows, it felt as though a second hand was reaching out from the darkness to grab me, as well.  I wondered whether my encounter a few months before was not a dream at all.  I wondered whether we WERE in fact sharing this house with others, all along.  Could it be a malevolent thing, even though it hadn’t hurt us yet?  And if not, would it be better if I left Al where he lay?  Would I be breaking some unspoken pact between us and the thing by entering this distant, darkened space?

“Please let me have Al back,” I said to the darkness, pointing at my plush little pet.  There was no response.  So I abandoned Al and slowly crept away, making sure not to turn my back to that dark space.  I tried to sleep that night, but I couldn’t shake the feeling of being watched from beneath the crack of my closet door.  For just a moment, though, I closed my eyes and succumbed to sleep.  When I awoke, I found Al tucked safely next to my pillow.      

I can’t honestly say whether there are “others” that slumber by day in the darken corners of that house.  I can’t know for sure whether or not your Uncle Zack was just playing tricks on me, taking my things at night and then returning them later.  But Ellie, just in case, if you ever find that important things go missing in the night, don’t be afraid.  Just go alone to the very back of the closet beneath the stairs.  Tell whoever is there that you miss those things.  Be polite.  And hopefully, with any luck, you’ll find those things in the morning.

  The passage to the secret room, in the lower left

The Training Wheels Came Off



Dear Ellie,

Yesterday was a very eventful day!  You came off of oxygen AND went to full feeds by mouth, which means that your face is finally clear of junk for the first time since the day you were born.  As of now, you are just a regular baby with no support what so ever.  No humidity, no supplementary oxygen, no feeding directly to your stomach, no caffeine to prevent apnea, etc. etc.  In other words, the training wheels came off.

Consider, though, that the whole training wheels analogy goes both ways.  Riding a bike for the first time like a big kid generally results in some skinned up extremities or a date with a wall/tree/trashcan... and much of the time, the training wheels might also end up going right back on.  As for your performance?  You managed to stay on the street for awhile, but as of last night when we left, you were running over the feet of innocent pedestrians and I thought I heard a few shrieks from innocent neighborhood cats.  After a good 6 hours or so off of oxygen, you began losing altitude.  We popped the canula on and off your nose to give you a few breaks.  You began to slow down with your feedings too.  You used to suck a bottle dry in 10 minutes.  Now, after about 15 minutes, you've only eaten half.  We might have to back pedal a little bit, but either way, today's results were encouraging.      

Also, all of the results came back from your tests and nothing was abnormal, so its not entirely known why your heart rate is so fast, but at least it hasn't revealed anything terrible.  We'll just have to wait a bit longer, I suppose.  An X-ray on your lungs was also ordered and it appears that your lungs are in surprisingly good condition.  They are scarred of course, but if you do in fact have chronic lung disease like we originally anticipated, then it is miraculously mild.  In a few more hours, we'll pop you right back on to that bike.

Tuesday, April 15, 2014

There IS Such a Thing as Too Much Heart

Dear Ellie,

Your heart rate is beginning to concern us.  It's always been a good bit faster than other babies, even when you were in the uterus.  Lately, though, you're heart rate has been especially high.  Sometimes its nice and low around 150 per minute, but for prolonged periods of time, you'll rise to 190 or 200.  Whenever we handle you, it spikes even higher to 220 or 230.  To give you some perspective, 200 is considered concerning for any prolonged period of time.  You have a whole set of tests scheduled for tomorrow morning to investigate the issue: an H&H and X-ray and EKG.

We'll just have to wait and see.

Your Dad the Sea Turtle


Dear Ellie,

Your dad is a sea turtle.  That might not sound like something someone would want to be, but it has its advantages.  We sea turtles live a really long time and we've got a pretty good run of the ocean currents.  So how do I know that I'm a sea turtle?  Well, aside from the fact that people are always telling me that I need to "come out of my shell," I've also returned to reproduce at the same beach where I was born, as sea turtles are known to do.  Except in this case, substitute the term "beach" for "hospital."  I was born at St. Mary's hospital, too, even though your mother and I don't live near the hospital like your grandmother and grandfather did.  Beyond that, when you are finally discharged, your mother and I are selling our house and moving back to the place where I grew up.  So that is double evidence for the sea turtle hypothesis.

When you get old enough to hold your breath, I'll toss you into grandma and grandpa's pool so that the natural sea turtle in you can emerge as well.

No One Even Noticed


Dear Ellie,

You are almost on 100 percent feeds by mouth.  Once you get there, we'll be able to pitch the feeding tube for good!  It's currently in your nose causing airway obstruction, so once we get it out, it should improve your lung function, too.  But you know, I'm not even sure if that really matters.  Your lungs have been coming along quite nicely since the last letter.  You went from 175 cc's of oxygen to 50 cc's as of this morning and your blood is still quite saturated, which means they'll wean you down further.  It's a rather funny/terrifying detail, but at one point, you were accidentally disconnected from your oxygen... for 45 minutes.  No one noticed because you didn't struggle very hard.  That can only be a good sign.

I'm amazed at how little respiratory support you need compared to just 3 weeks ago.  For comparison, here is a picture of just a fraction of your support 3 weeks ago, and then another picture of your support today.

Before...

After...

Monday, April 14, 2014

Seven Day Deadline



Dear Ellie,

You've been moving along rather quickly with feedings.  You're like a sucking machine, slurping down an entire bottle in about ten to fifteen minutes.  I have little doubt that you'll be off the feeding tube entirely in a few days.  You do seem to be preferential to bottle feeding over breastfeeding, though.  Perhaps you have just grown accustomed to the cold caress of technology and plastic nipples.  Either way, once again, your iron gut is proving to be your greatest advantage.  On the other hand, your lungs once again have proven to be the opposite.

You have seven more days until week 36 and it looks a bit more dubious now that you'll be off of oxygen before that point.  You've been on the low flow canula now for a few days and you seem to have stalled a bit...  but of course, before I could finish the prior sentence, the respiratory therapist came and switched you to the last phase of your oxygen weaning: 100 percent oxygen with neutral flow.  He's done hooking it up, now, and it seems like you enjoy it.  After asking a million questions, I think I've discerned that you are now being given tiny pulses of 100 percent oxygen which is then mixed with the atmosphere each time you breath.  In effect, there is no more positive air pressure buffering your lungs open.  As of now, you are at 175 ml's of additional oxygen.  Hopefully, you'll be down to 0 before the 7 day mark.          

The Button


Dear Ellie,

There is a button on your body that makes you cry.  Where exactly is that secret button?  That button is everywhere on your body!  No matter where we touch you, it makes you cry.  And not just a fussy cry.  A gyrating, thrashing, bellowing cry.  The kind of crying that requires quite a bit of huffing and puffing beforehand in order to muster enough air.  Because your vocal cords are still a bit stunted, you sound like a neighing horse or a rapid fire machine gun.  "W-a-a-a---a-a-a-a---a-a-a-a---a-a-a-a."

Strangely, you sleep fairly well and when you get hungry, you fuss politely as if to say, "Ehhhhm, excuse me, isn't there a meal coming soon?"

But when someone presses the button?  Or if we stroke the belly?  Oh man, that's when the pandemonium begins.  I remember in the days after you were born I could see you trying to cry, but failing.  It was the saddest thing I've ever seen.  I watched and imagined what your voice would sound like.  Wondered if I'd ever get to hear it.  For that reason, hearing you shriek now doesn't bother me one bit.  It makes me smile.

Sunday, April 13, 2014

Parenthood is More Than Writing Letters, Apparently



Dear Ellie,

I haven't had as much time to write letters, lately.  In the first month or two after you were born, there wasn't quite as many things that your mother and I could do for you so that left me with plenty of fallow hours to tap away at my laptop while sitting next to your isolette.  Now that you are stable and on a consistent upward trajectory, we give you most of your care when we are here (which is basically every disposable moment).

Somehow, I imagined that when you did go home with us, it'd be sudden and terrifying.  We'd be fish out of water, unaware of what to do.  In an unusual twist though we've been eased into parenthood in a way that most parents aren't.  Granted, there is a lot more to stand vigil for when raising a micro-preemie, its nice that we were afforded the opportunity to don "training wheels" before hopping on the bike.  

Also, Uncle Atul came by yesterday to visit.  Your mother and I had a lot of fun with him when he was little.  We did our best to make his middle school years suck just a little bit less (as they so often do for us all!)  We look forward to when he can do the same for you!

Saturday, April 12, 2014

Oliver and Ellie


Dear Ellie,

Oliver swam a very long way to hang out with you in your crib.

Low Flow Canula and Retinopathy



Dear Ellie.

Yesterday morning you exchanged your high flow canula for a low flow canula.  What does that mean?  It means you are one step away to being off of oxygen all together.  As of now, you are getting just a tiny bit more O2 than what is in the atmosphere itself.  It's remarkable to think that just 3 weeks ago you nearly suffocated when the ventilator malfunctioned.  At the time, your lungs weren't functioning much better than the days after you were born.  But now, just a short time later, you can practically breath on your own.  

The only hang up, I suppose, is your eyes.  Your Retinopathy has progressed from stage 1 to stage 2.  We're a bit more nervous about it, but if it gets any worse there are plenty of treatment options.  Again, bad eyes are the least of our worries.  You'll be in good company.  As a matter of fact, you have a bright and talented friend out in the world named Winona.  She was a micro-preemie like you but she was born before there were very good treatments for Retinopathy, so her Retinopathy was a lot worse than yours.  She hasn't let it slow her down one bit.

Friday, April 11, 2014

The Little Baby Black Hole

Dear Ellie,

One of the last big unknowns was whether or not you could nurse or eat from a bottle.  Many, many micro-preemies get stuck in the NICU because it takes them a long time to figure it out.  It seems like a thing that nature should infuse in the instinct of every baby, and in fact, it does.  However, micro-preemies often spend weeks or months with tubes jammed into their mouths and down their throats and this can often create oral aversions.  What's more, they are used to being fed directly to their stomach and this, of course, doesn't take any work on their part.  It's very common for babies born as early as you to refuse bottles or breasts, suffer from severe reflux, or even suffocate themselves by breathing and drinking at the same time.

Whenever your mother and I were with you during "feeding time," we gave you a pacifier soaked in breast milk while you were fed through the tube, hoping that you'd associate a progressively filling stomach with the sucking motion.

On the upside, when we first gave you the opportunity to nurse a few days ago, we were confident that you wouldn't have any trouble latching or sucking.  Since the day you were born, you sucked on virtually everything you could get your lips on: your endotracheal tube, your feeding tube, your fingers, your blankets, your clothing... so we weren't so much concerned about whether you could get the milk into your mouth.  In fact, we were worried that you'd suck like a wild girl and forget that you shouldn't breath and swallow at the same time.

As it turns out, you surpassed our expectations.  With just a few days experience, you're pounding down more than half of your feeding from breast and bottle without any problems.  Even after you've sucked the bottle clean, you "root around" with your little head, looking for the next nipple to conquer.  You're like a little baby black hole.

In a few days, we might even remove the feeding tube all together.

The Longest Trip You've Ever Taken

Dear Ellie,

For the past 10 weeks, POD 1 has been your home.  Being part of the NICU 3, it meant you were still in a "critical" state and needed intensive care.  Yesterday, that finally changed.  You were unplugged from the wall and your crib was wheeled away from the space that's been your residence since the day you were born.

You took a 20 meter, 30 second journey over to the NICU 2.  It's the furthest you've ever traveled.

    
You arrived at POD 6, which doesn't look all that different than the POD that you just came from.


In all reality, the move itself didn't change anything.  For you, it was symbolic.  The NICU 3 is for babies that are unstable.  Babies that can have bad things happen to them at almost any time.  The NICU 2, on the other hand, is for babies that are on easy street.  The "feeders and growers" as they are called.  Bad things can still happen to babies in the NICU 2.  They can backslide or get sick or remain there for some time, but being in the NICU 2 tends to suggest a big, important thing about babies that arrive there: they are on their way home, soon.

Wednesday, April 9, 2014

A Borrowed Week


Dear Ellie,

Every month we've spent in the NICU feels like an eon.  Thinking back to the beginning is like looking back at some prior life.  But sometimes I'll see some object near labor and delivery and I'll remember the first night we came to the hospital, back when you were only 22 weeks in utero.  At those moments, I'm in disbelief that you are here at all.

I read a blog today about a mother and father who weren't as lucky as us.  The mother arrived at the hospital in January like we did and her twins were the same gestation as you were: 22 weeks.  She and your mother were both told that their pregnancies probably wouldn't last much longer.  Her twins were born at 22.5 weeks.  You were born at 24.  I'm not sure if their blog will still be live when you read this, but its a frightening illustration of what could have, or perhaps should have, happened to you.  I think about that week and a half between your birth and their's and it seems like a miniscule span of time.  All those twins needed were nine more days and they'd have had a chance to live, like you.    

It's bizarre to consider how valuable nine days can be when I think back on how many cheap weeks of my life I can't even remember.  I wonder why I can't offer each of those little twins at least one of them.  It was, after all, just a few stolen days that buoyed you to viability.  How arbitrary it all seems.  It makes me recognize how flimsy the barrier between life and death really is.

You seem so tiny and vulnerable when I think of it this way, and again feel like like some phantom in my arms.  That if I don't hold you close enough, if I were to even blink, some tiny thing in the past could shift out of place--- some borrowed week will be returned--- and then you'll disappear.

Cleanliness is Next to Godliness.


video


Dear Ellie,

Two nights ago you had your first real bath.  With water.  This created logistical issues I hadn't thought of before.  Like what we'd do if you took a giant dump in the basin.  In the photo up above, you can probably see that your arms appear blurry.  That's because you are either flailing them in outrage or bouncing them about happily.  I'm not sure which.  I'm still a neophyte when it comes to baby mannerisms.

Tuesday, April 8, 2014

Ellie, Meet Your New Breast Friend


Dear Ellie,

You've been out in the world for 10 weeks but until very, very recently you haven't been able to swallow.  Up until now, drool has pooled in your mouth and has generally remained there until it gets suctioned out (or dries on your lips into little worm like pieces of gunk referred to affectionately as "mouth boogies.")  As it turns out, this inability to swallow has also prevented you from nursing, which means you don't know who Boob is.  Today we introduced you to Boob.  Upon meeting, you shook hands, and awkward moment passed, and then you produced an expression on your face that said: "So... what do you expect me to do now?"

Fortunately, this reaction is normal.  As a matter of fact, you actually did better than we expected you to.  With some encouragement, you even managed to suck, swallow, and NOT drown yourself in milk. This is a huge step.  I know it probably sounds like I'm being sarcastic, but I'm not!  Easing you into the idea of eating by mouth instead of via a tube that goes directly to your stomach is the last major thing between you and graduation from the NICU.  Get chompin'.

Changing Diapers


Dear Ellie,

I might as well come clean.  I like changing your diapers.  Yeah, that sounds weird to me, too.  I always saw changing diapers as one of the chores of parenthood, not one of the joys.  Whenever the nurses ask me if I want to change your diaper, I shrug as if to say, "if I must" and then move with a skip in my step that betrays how I really feel.

It first occurred to me that I liked changing your diapers yesterday morning.  As I was walking toward your crib, I could smell something ripe from halfway down the POD.  It couldn't have been coming from a baby, I surmised.  It was just to pungent.  I followed my nose to the source and there you were, right at ground zero.  When I unclipped the diaper, your entire bottom half was covered and you wasted no time in adding to the deluge.  I cracked my knuckles, brandished a plus sized box of baby wipes, and set to work.

Now, let me be clear.  Dealing with extra poop in a diaper doesn't make it any more enjoyable on my part, but the fact that I came out of the apparent horror show smiling and unphased said something.  There are probably numerous factors involved with the fact that I get enjoyment from changing diapers.  First, I happen to enjoy tedious, repetitive tasks.  Second, I've dealt with considerable diversity of animal poop in the past so baby poop isn't exactly something unusual.  But most of all, I've waited so many years to experience even the most mundane of interactions with a child I could call daughter that even changing diapers is a treat that will never get old.

Monday, April 7, 2014

Data!

Dear Ellie,

Today, your mother and I had the pleasant opportunity of being lab rats.  Digital lab rats.  Okay, let me explain.  The hospital was making a new database for patient medical records and they were looking for youngish, computerish people to test it out.  Boy was I glad we volunteered.  At first, I thought the extent of the records might involve immunizations, major tests, etc.  Instead, the database gave us access to the results of pretty much EVERY test that they've conducted on you since the day you were born.  Your daily respiratory settings, CO2 blood levels, glucose levels, and on and on and on.  I knew that the doctors were monitoring numerous parameters, but to see the sheer extent was staggering.  By my estimate, since the two and a half months since you were born, you have been subject to upwards of a thousand tests.  This is, by the way, no exaggeration.  No wonder you're the million dollar baby.

From Space to a Tall Mountain


Dear Ellie,

It's official, you've been upgraded to a crib.  It's odd, not seeing you inside of that airtight acrylic dome.  The crib looks so... low tech.  I remember in my first few letters I compared you inside of the isolette to a person in a space suite.  How you couldn't survive long outside of it.  But now, in your crib, you look autonomous.  Able to survive on your own.  Now that I think about it, that's very close to being true.  If we took you off of the oxygen, its not impossible that you could still manage to breath entirely on your own.  You might suck in air like crazy and struggle a bit, but you would surely last for a few minutes or even hours without turning blue.  Instead of being out in space, you'd be on top of a tall mountain, instead.  

Sunday, April 6, 2014

The NICU Ranch

Dear Ellie,

Your uncle and aunt and I grew up next to a cow pasture and there was this sort of unending sound of "mooing" in the distance.  In a similar sense, being in the NICU reminds me a little bit of being on a farm or ranch, too.  You see, every second of every day there is ALWAYS a baby crying somewhere, if not many at the same time. On the upside, I've been here long enough that I think the sound of wailing babies will never phase me ever again.  

Climate Control





Dear Ellie,

For the past few months, you've been unable to regulate your own temperature.  This is a universal problem for tiny preemies.  As a result, the isolette has maintained your temperature for you.  Every three hours since the day you were born, we've taken your temperature to make sure that you aren't getting too cold or too hot.  Any deviation from a narrow window caused problems.  That's beginning to change now.  With any luck, we'll be moving you out into an open crib like a proper baby.  As of now, the top on your isolette has been "popped," leaving you exposed to the atmosphere  This is rather nice because it means I don't have to reach through two cramped portholes to stroke your forehead, anymore.

It's amazing how my perception of you has changed.  You used to be this fragile, untouchable thing.  Now I have no qualms with touching you or holding you close.  You were nearly featureless before and looked almost exactly like all of the other 24 weekers that came into the NICU.  Now I'm seeing nuance in your face: tiny dimples and little rogue hairs and small splotches of dry skin.  Like before, though, you seem to never stop moving.  

Saturday, April 5, 2014

The Four Pound Club


Dear Ellie,

Today you joined the four pound club.  But that's only half of the good news.  You made another great stride on your respiratory support.  Now, you are on high flow canula, but even now, your oxygen requirements are only a few points above the oxygen percentage in the atmosphere so the high flow isn't even really doing much for you.  The next step is low flow and then you're off oxygen for good!  That means you'll be able to finally start learning to eat from a boob and a bottle instead of a tube to your stomach.  We still don't know how you'll react when you get your first gulp of milk, but we're inclined to think that you'll do well... you just need to remember that you can't breath and eat at the same time!

A Love Story

Dear Ellie,

I've been working on a letter for you that is a little bit complicated.  It's about your mother and I.  I want to say that it is about romantic love, but that would be an oversimplification.  Before you read it, though, I thought I'd show you a story I wrote a few years back on the subject.  Maybe it could be a good primer.  As it happens, I don't think real love is the kind of thing we see in stories or movies.  Real love, the best kind of love, is a little bit weird.  And sometimes misunderstood by those outside of it.

-------------------------------------

I was ten when Mom died.  Dad didn't go to the funeral.  He never explained why.  Not to me or my sister or my grandparents or anyone.  He organized the memorial and the reception and then waited at a nearby coffee shop while it all took place. 

It remained a mystery in our family why he did what he did, but there was no shortage of resentment-driven hypotheses as to why.  At least, on my mother's side, which was basically everyone.  My extended family tree was pruned to a nub on my father's half but thick and tangled on my mother's: a scraggly mass, crudely trimmed by divorce with second and third marriages grafted on haphazardly.  In that mire there was a festering nest of distaste for Dad.  His absence from the funeral only made opinions worse.

"Does the guy have any grief?!" slurred my Uncle Ian, understandably tipsy, unaware that myself and my sister could hear.  "Did he ever even care about her at all?!"

No one at the funeral defended Dad.  Still, despite the low toned mutters of agreement, everyone knew the accusation was false.  After all, disapproval aside, my Mom and Dad had a marriage that every other couple in the family lacked.  They were the happy ones.  Best friends.  The one's that never quarreled or hissed at each other at family gatherings or complained to friends about one another's shortcomings.  Fifteen years into their marriage, they’d still held hands and passionately kissed, privately and in public.

Mom and Dad had fallen in love and never fell out.   

This simple fact only deepened the mystery of his absence at the funeral, but gave me faith that maybe my Dad's decision was the right one: to sit at a coffee shop and sip on a latte while every other person that loved my mother was saying goodbye.                 

It took me awhile after Mom's death to realize that my parents had been a little bit odd in the eyes of most people, especially my aunts and uncles.  For instance, it was common for my mother to stand up in the middle of a restaurant, mid meal, to invite Dad to dance amidst the tables.  Or they would leave a spontaneous poem about their meal on a napkin, right next to the tip.

This oddness between them had been around long before I was born.

When they first met in college, Dad would bring Mom obtuse gifts: a half empty bottle of rare vintage wine; an antique typewriter ribbon; an obsolete map of the USA with only 44 states in the Union.  Basically, he gave her the kinds of things that took a great amount of effort to get one's hands on, but were otherwise completely worthless.  Whatever the appeal, it worked.  Immediately after meeting, they were inseparable.

They got married after 5 years of dating, but no one figured it out until my Aunt Jennifer saw a ring on Mom's finger.  The two had been wed by a hunched-back notary public at the local court house and they celebrated by buying ice cream for an assemblage of random strangers at a desert stand across the street.  All three of my aunts were outraged and blamed Dad for robbing Mom of a proper wedding.

They blamed Dad for a lot more, too.  For instance, they blamed Dad for Mom’s quirkiness, as if she had caught it from him like a bad habit.  They blamed him for making her not like them.  For taking her away from them to a psychological world of his making.  But she’d always been like him, whether they wanted to admit it or not.  And so, in a way, that world was their world.  The oddness of my mother and father was intimate and mutual, like an inside joke to which only they were privy to the meaning of the punch line.

Maybe that’s why they always laughed at social convention, not because they shunned it, but because often times it only got in the way of spontaneous moments of happiness and joy.  Moments, like the spontaneous urge to dance and be near one another.  Or to share the experience of an exquisite meal with a stranger.  Or to go on a journey to find an exotic gift of the type that has never been given before.  Or forgo a wedding--- a lavish celebration in their own honor--- so that its brightness wouldn’t drown out the luminosity of every beautiful day.

I know now that Uncle Ian was wrong.  My father most certainly grieved.  He grieved more deeply than anyone.  But to attend my mother’s funeral would have been to listen to the reinvention of my mother's memory.  To watch as her family shrouded her in the virtues they held dear.  To be forced to forgive the things they saw in her as faults, but that he adored.  To grieve like they grieved.

To attend my mother's funeral would fly in the face of what my mother and father were.  So instead, he chose to grieve in the way that they lived.  And I can think of no better way for him to honor her memory. 

Friday, April 4, 2014

It's a Boy!!



Dear Ellie,

Once again, it appears as though you are fated for others to confuse your gender!  One of the NICU staff replaced your bedding and the new sheet read: "It's a Boy!"  I suppose we should have named you "John."

Flying For the Clouds

Dear Ellie,

In three days you'll be at the equivalent of 34 weeks gestation.  When you were born and I was staring at your tiny little body, I remember thinking how impossible it seemed for you to get through your entire NICU stay without any major problems.  When you developed so many complications with your lungs, I merely thought, "Well, I guess we're just receiving what we were due."  However, with all of the progress you've made recently, you might make it through unscathed after all.  Technically by most standards, a preemie is formally diagnosed with chronic lung disease by 36 weeks if still dependent on oxygen.  That gives you 17 days to fly for the clouds!

Thursday, April 3, 2014

The Thrill of a Challenge


Dear Ellie,

I've never been a person too interested in winning at things.  What I'm interested in is a challenge.  To win without much effort makes me lazy and disinterested.  I don't train or practice quite as hard.  However, challenge me at something and suddenly I ply my full attention.  Today, you've proven once again that you are the same way.

You moved to minimal respiratory support this morning and haven't looked back.  Your oxygen percentage was nudged up in anticipation that you might struggle a bit, but they've progressively been tuned back down as you flap your little wings and fly away.  Compared to the ET tube ventilation, you are doing almost all of your breathing on your own.  It was a fairly big, unexpected leap from where I'm standing.  I was anticipating that it would come a week from now.  Paradoxically, you seem to often do better whenever we give you less.  Given a challenge, you only work harder.

Parental Rivalry

Dear Ellie,

Your mother often voices her concern to me that you'll love me more than her.  "You write her all of those pretty letters but I can't!" she says.  She's also worried that she'll become the harsh disciplinarian and I'll be Captain of Fun.  This concerns me, because its never good for a family to have this kind of rivalry between parents.  A child should never have to answer the question: "Which parent loves me most?"  With this in mind, I've decided to write you a poem that will put this uncertainty to rest.

Mommy makes you breakfast,
And Daddy makes you lunch,
Mommy gives you kisses,
And Daddy gives you hugs,
Love isn't a competition,
But just in case you're keeping score,
Just remember one small thing,
Daddy loves you more!

Who hides all the pieces,
When you break a special vase?
Who let's you bounce off all the walls,
When you're a basket case?
You never should have any doubt,
Or wonder, "Who dad adores?"
Just remember one small thing,
Daddy loves you more!

Who always gives you candy,
When Mommy takes away dessert?
Who kisses all your booboos,
When horseplay makes you hurt?
Who comes up with fun time,
When Mommy gives you chores?
Just remember one small thing,
Daddy loves you more!

Yes, your mother fought hard,
Through fever and despair,
To keep you safe inside her,
While I played solitaire,
Perhaps your mother did her part,
So alas, it must be true,
Okay, so I admit it...
Mommy loves you, too.

Wednesday, April 2, 2014

When Letters Become Conversations


Dear Ellie,

I'm happy to report that you are still steadily improving.  Your mandatory breathes came down in the night and for the first time since you came off of the ET tube, some of the pressure added to your lungs has come down as well.  Your red blood cell count is low and as a consequence your heart rate is fast but the doctors are giving you a chance to make them yourself rather than give you a blood transfusion.  You are gaining weight quite nicely.

I think the past few days have been the longest period of time that I have ever gone these past few months without a lot of worry.  You are still stuck in the NICU 3 (which is considered the highest level intensive care unit) but I don't think you will be here for very much longer.  With my mind at relative ease, I've had a chance to sit back a bit and reflect.  This morning, I noticed that I've written you about 160 letters.  It's hard to believe.  When you finally go home with us I suspect we'll be too busy with you to keep up THAT kind of momentum, but I intend to keep writing to you in your earlier years.  That thought got me thinking though: at what point will I stop writing you letters and instead simply start having conversations?