Watching Helicopters

My little daisy bug is eating so well!

She's gobbling her full feeding amount most every time every three hours now;

That's extremely encouraging to us, 

because that's exactly the goal she had to meet before they let our little birdy fly outta here.

Still, we're left with no answer as to how long she has to prove herself in order to earn her freedom....

So we find our happiness not in daydreams of home,

but in the moments suspended between checkups and stolen naps.

We wiggle and sing old Judy Garland songs.

We play dress-up and charm the nurses.

We paint imaginary pictures in the air as her Baby Einstein music machine serenades us.

I consider the babies down the hall in the NICU pods where we graduated from and I think of all the babies who can't play....who are too small to wear clothes....who can't even be touched.

Some babies never even have a mommy or daddy who visits them.

I press my daughter's chubby cheek to my chest and watch another hospital helicopter touch down.

The Labyrinth

"Remember you Hippopotamus oath!"

- Homer Simpson

You know, we've been treated really well here.

Even when I've lost my sanity or patience, the staff at Children's has shown me tremendous amounts of grace.

They've been reassuring, attentive, protective, and downright caring.

When I was worried about our daughter, they were reassuring AND straightforward 

(I appreciate this.... I don't like to have smoke blown up my skirt).

When I needed friendship, they stuck around to expound on everything from child-rearing stories to theology.

Heck, they even tracked down the most inane items on my behalf, just for the sake of making my life easier.

I don't doubt there are a handful of people here whom I would gladly bring Ava to visit, just so they could hold her and enjoy her company apart from her inpatient time.  I have no doubt she will have her chubby arms around many necks here one day.

To the staff here at Arkansas Children's Hospital,

I will be forever grateful for your reassuring presence and expertise

as we travelled the labyrinth of our daughter's first few weeks of life.

Namaste.

Tiny Dancer

"First thing I remember, I was lying in my bed

Couldn't have been no more than one or two

And I remember there's a radio coming from the room next door

And my mother laughed the way some ladies do

Well, it's late in the evening

And the music's seeping through..."

- "Late In the Evening"

Paul Simon

After all the unannounced consultations that interrupted what few precious scraps of mommy naptime I had budgeted for this afternoon,  

when I feared that my rapidly fraying patience with appointments and malfunctioning monitors was coming to an end and tears were stinging my eyes,

my little cathead began to dance.

I had turned on her Baby Einstein music aquarium for Ava to watch as I changed her, 

and as it cycled through its program of Chopin, Bach, and other various composers' pieces,

I wondered if it was my imagination when I noticed that she seemed to dance in accordance to the tempo of the music.

When I was pregnant with her, I constantly dreamed that she would dance.

Never would I have thought you would have fulfilled that dream so soon, miracle girl.

Continue to astound me, daughter.  It heals me.

Warning

Our nurse came into Ava's room about ten minutes ago and told us that the hospital had called Code Tango -- for those who don't speak Hospital, that's window-shattering weather.  Violent winds.  Tornadoes.

She had just finished telling us that it had only been called twice in her thirty three years here.

I've learned never to say the unlikely won't happen to us.  That's the whole reason we're here with our little squishy.

So here we are, hunkered down in our bathroom, awaiting God knows what with a flimsy shield of pillows and blankets, ready to shield our child with our bodies if necessary.

Some idiot parent nearby remains on her couch texting next to her huge room window while a nurse shelters her baby.  Did I say idiot?  I meant neglectful idiot.  No apologies.

Jason snoozes against the shower wall with Ava sleeping soundly in her daddy's arms.  I will never forget this. Out of all the danger we were prepared to be on guard for during this time, this is one event we never foresaw....

Happy Birthday Baby Sneezes

This cycle of baby sneezes is brought to you by the letter A.

HAPPY TWO WEEK BIRTHDAY, OUR LITTLE KUMQUAT!

We rejoyce over your safe arrival each and every day.  

Ok, bring on the unbearable cuteness.

Gift

Dear Ava,

Apparently I'm not as strong as I thought.

Nearly two weeks after your arrival, after the carnival of diagnoses and surgery has torn down and left town,  you and I and Daddy are left in relative peace to regroup and rearm ourselves for the next battle at hand: feeding.  I can't imagine what it would be like to be denied the pleasure of food for the first week and a half of your life (and I'm sure your Daddy especially couldn't conceive of it - he's a HUGE fan of nourishment in whatever shape, form, or fashion it's presented).  Now begins the slow ascent toward healing, toward the comfort of routine that will illuminate our homeward path.

I'm thankful that these events are unfolding during the bleak month of January - out of all of the months in the year to be sequestered, I'm almost relieved to be removed from the contagion and cutting temperatures typical of this time.  I'm grateful to have a window out onto the world in your private room - in stark contrast to the pod where you spent your first days - and a little space of our own to arrange as I see fit.  When you reside in a small, confined space, seemingly insignificant tasks like changing blankets and putting together new baby outfit combinations take on surprising significance.  You struggle not to depend upon the television as your main source of stimulation.  Day to day living both crawls and flies by.  Sleep is elusive.  One consultation leads to an adjustment which leads to another consultation...  And so it goes.

None of this is your fault, dear daughter.  Although you're the one who bears the brunt of the hardship in this situation, all I truly know is my own thoughts.... and I constantly fight the urge to disconnect you from all these tubes and wires, strap you to my chest, run home, and lock the door behind us.  I have to give up this fantasy.  I know we're doing the very best thing for you by being here.  The medical staff here has been nothing short of nurturing and supportive.  If not for Daddy's rock-steadiness and the understanding of some very special nurses with whom I've had intimate conversations, I think I would be struggling in this purgatory so much more.

Every time you look at me trustingly with my own denim-hued eyes, you assure me that every moment spent here in this hospital is an investment in the future of your health. Every scrap of information issued from the medical staff is an opportunity to gain insight into your condition.  Every potential diagnosis-related obstacle that I read about as I rock you further arms me to fight for your development.  I look at you see a puzzle that will ever fascinate me, a Rubik's Cube who I will learn the motions of by muscle memory.  There is no single 'solution' to you, or a lone path to your ability to successfully eat.  This is our first journey together toward a common goal.  This is our first class in learning to follow your lead, to listen to your body as it tells us when it's ready for progress.  This is your first gift of patience.

Profile of a Diaper Filler

 Name: Ava Leigh Clenney

Aliases:  Baby Bird, Moon Pie, Pretty Girl, Fatty Fat Fat

    

Height: 19 1/2 inches long

Weight: ahem...A lady never tells!  But if you must know, 7 pounds.

                 Hair : Strawberry Blonde                                Eyes:  (currently) Bennett blue 

     

        

Likes:  Accessorizing, holding hands, dining by dim NICU light, and the warmth of a rich baritone voice.


 





Dislikes:  Unwarmed baby wipes, the shock of a cold thermometer to the armpit, gun control lobbyists ( you're welcome, PawPaw).

Current location:
NICU south, Room 19
(That's right - we've fled Pod 5 and are currently enjoying the metropolitan view from our new
private room window!  We're overjoyed that we'll have our own patch of sunlight to bask in
tomorrow morning, and peaceful aural space to fill with soft music when we're feeling artsy-fartsy.)



 




Future plans:  Guzzle eight 60 milliliter bottles in a day as quickly as a frat pledge during rush week, create abstract diaper art that would rival any Jackson Pollock painting, and hurry up and get home so I can  charm and/or terrorize Honey Boo Boo Dog and the pugs.

Recipe For a Cozy Mini

Begin with one seven pound baby, preferably freshly fed, changed, and fashionably accessorized...

....and swaddle until arms no longer flail...

...and pacify with binky or pinky finger until cheeks turn a golden-rose.

Serve warm, with lots of snuggles.

The little pickle cupcake had a lovely day today, which included a conga line of adoring visitors, a new big girl bed (no more baby bird toaster!), and an increase in her feeding amount.  And with that increase came the inevitable poovalanche that signaled that at least some of that milk that Mommy's dribbling down the front of her onesie is making the full trek through her digestive system.  Ava's so much better at doing baby things than Mommy is at doing a lot of Mommy things.

No matter how experienced you are at baby care, fumbles are still inevitable.  For instance, when I returned from scarfing down my cafeteria Ruben sandwich (mad props to the ACH sandwich wizard, btw!), Daddy and Pawpaw and the nice day nurse had just finished turning Ava's bedclothes and general area upside down in a frantic search for a missing pooball that was believed to have rolled away.  Much to the relief of all involved, it was found concealed in the fold of her discarded diaper.  Phew.  

And speaking yet AGAIN of poo, I think we're going to tuck in a beat earlier than usual so we don't feel like it tomorrow.  We're getting so little sunlight on our skin, I think that we're growing pale and sparkly.  

I'll leave you with this snippet of wisdom from the lactation room bulletin board:

....AND one more bonus picture of Ava's new crib, which I am gleefully turning into her own gypsy wagon:

Daddy's Quarterback Hold & The Chow Wagon Approacheth!

Why is it that when I see a man hold a baby with confidence and ease,

he looks like a quarterback running a football?

And behold!  Witness our baby bird's first feeding!  

Stomach content report: 

It's six thirty, and all's well!

In between feedings, she sleeps glued to me with her chubby arms and thighs wrapped around my side like a spider monkey.

Time

"And it's time, time, time that you love,

And it's time, time, time..."

- Tom Waits

During the twenty minutes I managed to organize my thoughts into complete sentences before I fell asleep last night, Jason and I discussed the timing of our daughter's birth.  It certainly wasn't my preference to have our first child at thirty years of age, but now I can look back at the past decade and see God's fingerprints all over the face of my biological clock.

 If I had gotten my way, things would have been much more difficult because of my impatience to start a family once we were married five years ago.  Granted, I've had more than a handful of parents advise us that there is no so-called perfect or convenient time to have children, but as we wade through the days after Ava's birth in the isolation and uncertainty of the NICU, I'm thankful to have a spouse who was insistent upon establishing a comforting level of security before Ava made her wide-eyed appearance into the world.  We've HAD to wait upon the Father's providence of a sturdy house, better established financial resources, cars that wouldn't leave us on the shoulder of the interstate, and the unfailing support of more "family" than we ever before dreamed of.  I even consider my gestational diabetes a blessing for teaching me how to budget my dietary intake so much differently - it's given me so much more stamina and mental clarity.

I consider the life I lived - which I lived for myself and therefore made a disaster of - in the years before I met Jason and reconsidered my need for faith in something greater than my own determination.  I think of the ways that I embarrassed myself with the reckless, self-centered decisions that I made.  I'm often tempted to blame them on my long term struggle with depression instead of recognizing that my selfish refusal to see past the tip of my own nose just might've been the gravity pulsing at the center of that black hole.  Now, two years after emerging from a weeklong hospitalization with the tools to help tune into contentment, I've learned the importance of being satisfied with my circumstances and to gently move ever toward the goals that I believe my Heavenly Father has placed in my heart.

I've always been a slave to accomplishment, even if all my spirit craved was to fulfill seemingly humble dreams - aspirations which might seem merely peripheral to a modern, have-it-all kind of woman.  I would push myself to attain a status...a title...recognition...even beyond what was due my true abilities.  I can be honest with myself now and pinpoint the cause of that strain and strife: I thought my worth to my loved ones was primarily founded upon those definitives.  

I felt guilty for wanting nothing more complicated than to spend my life building up a home for a family. I think I even went as far as to build relationships based on superficial projections instead of honesty about who I truly am.  I'm a nester.  A bit of a recluse.  I love establishing routine centered around my home and family, and then I love shaking up that routine and doing something unusual.  I love physical affection, and I'm happiest when I'm within arm's reach of my husband or child.  I could entertain myself without the television or radio all day long.  I like being a stranger in a crowd.  I don't tend to communicate exactly the way I intend to without writing what I mean.  And I don't intend on making apologies for these attributes anymore.  

What I can or can't do well doesn't change my value as a human being.  I spent so long trying to be recognized and applauded, but now that I'm holding someone who doesn't define me that way, I can see how much of a tail-chasing mongrel that mindset has made of me.  It truly helps to also have the understanding of a husband who's always been vocally proud of however I choose to define myself.

In light of all this, I wasn't the least bit surprised that we would be blessed with a daughter who was diagnosed at birth with Down's Syndrome.  I understand that it's usually a shock to most parents when they receive such a diagnosis - truly a What's-the-chances, How-could-this-happen moment.  
To me, there is divine logic in her arrival here, now, with us.  I know that she will allow me to fulfill the calling to motherhood that I've longed to answer for what seemed like achingly too long.  I know that she will need all of the skills of perception, domesticity, and creative teaching that I've acquired on the path to her, as well as she will need our marriage to support those pursuits.  She will need me to be willing to shadow my maddening ambitions in favor of supporting her. 

I think she was sent to rescue me.

Snug As A Bug In a Burrito...

...and forget the pacifier.  We're tenderizing Mommy's pinky now. Hopefully, we can consider this a rehearsal for our first bottle feeding tentatively scheduled for tomorrow.

Washy Washy Washy

1. 

A Better Day

"I am gonna go hold the crap outta that baby!"

Dr. Elliot Reed, Scrubs

To be completely honest, yesterday was an emotional rollercoaster.  Too many needle sticks.  Blown veins.  Lots of tears, both Ava's and mine.  Then Daddy roared as a good Daddy is apt to do when it's time to take action, and our collective frustration was alleviated as the staff scrambled to fit her with a PIC line, which won't blow like a regular IV.

After that, we needed some heart-lifting.  Some things that I witnessed were no doubt very common
sights in the NICU, but will make me reel at the memory for the rest of my life.  I thank God that because of Ava's age, she will remember none of that.

Today was the day we needed to have yesterday.  She began the day with some mild excitement - she pulled her Replogle line smooth outta her little upturned nose!  Fortunately, her timing was in sync with the surgeon's, and they decided against replacing it and opted instead to see if she would either spit up or keep her tummy contents intact, which would signal to us that she might tolerate a bottle feeding.

Well, she puked, which wasn't a shock to anyone but her.  So no milk tonight, Little Moon Pie.  We'll gladly keep holding you in a reclining-upright position in hopes that gravity is good medicine.  Dream happy boob dreams tonight, and perhaps you'll have your first bottle tomorrow, love.  It was heaven to hold you.

Keep on filling up those diapers! Daddy needs lots of practice. Heh.  It's like a Texas oil derrick down there.

Yipes!  Stripes!

Finally breathing unobstructed!  My pug-snorting days are behind me!

Instant makeover, NICU style....