The Learning Hour

Duo!

Like the blossoming trumpet vines that creep through our Sassafras trees here on the farm, our kid has suddenly grown a full-blown personality -- much to the bemusement of her parents, and the bewilderment of those who haven't seen her apart from the hospital for a month.

It's as if Ava woke up one morning and decided to do away with all this helpless baby business.  Now, she has preferences.   There are some toys she definitely favors over others (Glow Worm really lights up her world these days, with Rickroll the Rattle Dog coming in a close second).  If she's eaten her fill and I'm not astute enough to catch the hint, she smacks her bottle and bellows, "Meh!".  She laughs ALL the time -- while playing independently in her carseat, during particularly messy moments on the changing table, even as she's drifting through the early stages of sleep -- and the sound of her cackle sounds to me like something between the throaty chuckle of Angelina Jolie and the dry cough of old men who hang out in small town gas stations and gossip.  It's the sweetest, oddest sound.  And when we're out of her line of vision, she hollers an utterance that sounds like, "YIPES!  YIPES!  YIPES!"  We respond here she has the chance to get carried away, and apparently that shoos the wooly boogers away.

She's had the opportunity to hang out with her newborn cousin Juliana twice this week.  Both times, she's stretched her hand as far as her chubby arm would carry it and tried to squeeze whatever limb of Ana's was closest.  The second time, she didn't quite make it to her prize, but the first time she gripped baby cuz's hand and squeezed it until her knuckles turned white and Baby A let out a "YEEP!" of displeasure.  It's hard to wrap my mind around the fact that Ava Leigh was just as wee and fragile merely six months ago.  Now she's a steamroller of adorableness with her glad wide eyes and ever multiplying rolls of baby fat.  Time marches on, leaving its size 13 bootprints on my heart.

Behold, the nearly unbearable cuteness of them!:

Blackout.

My apologies for the prolonged blackout in postings.  Since Ava was discharged from Children's a week and a half ago, life has been slower to return to normal in comparison to previous episodes.  Also, I left our iPad charger in my sister's hospital delivery room and this thing ran out of juice faster than Anthony Weiner's political career.

To clarify, the transition has just been particularly slow for me.  But maybe it's because I'm that drummer who's chronically half a beat behind the band.  

And speaking of beats, Ava Leigh hasn't skipped a one since we got home -- she's gradually regaining the ground that she lost prior to surgery, and with the constant drip of formula being pumped into her stomach via G-tube, the gears of her digestive system seem to be slowly resuming their regular functions.  Between that and the stanky Amino Acid-based formula she now drinks with the assistance of a Japanese bottle designed for babies born with a cleft palate, we manage to get enough nourishment into her, even if she chooses to nibble and gnaw instead of get down to the business.

(Amusing side note: after a live comparison, Mommy and Daddy have confirmed that the odd scent of Ava's Alimentum formula is redolent of a freshly-opened box of Cheez-Its.  I'll show you sometime.  It's royally funky.)

While our smushbutton is gracefully adjusting to all of these changes and continues to grow in awareness and strength, I admit with a degree of shame that it's been more difficult for me to make the transition back home and work her current limitations into the old groove.  

Not that I'm complaining that life is different because Ava's needs have changed.  I'm just one of those people who bends like a telephone pole instead of a willow in the wind when it comes to change, especially in regard to home-related comfort.  Adjusting to toting a pump around wherever we go is like discovering your child has spontaneously grown a tail.  It isn't dreadful at all; it's just something that dictates our schedule and complicates the closing of doors behind us.

Letting my guard down has proven the major struggle.  Over the course of a month and two hospitalizations, fighting became a way of life for us.  Ava fought to let us know that having any substantial volume in her tummy was causing her agonizing pain.  Mommy and Daddy fought to have our reasonable theories considered and tested.  We fought to bring the right physician into the mix after we were repeatedly told that sometimes "most Downs babies aren't good eaters", "she looks like we're not starving her", or the most popular refrain, "all of this can be explained by reflux."  

My fury toward those dismissive individuals who wanted to hand down an easily treatable diagnosis were also the ones who never seemed to have the time to take in her full medical history and our description of her symptoms.   I would marvel at how 

quickly they would sew the matter up in their minds with so little pertinent information in mind.  That attitude in practice was harmful not only to our morale, but to our 

communication with other healthcare professionals as well, given that their own 

treatments were heavily influenced by the head of the totem pole rather than by the 

history we related to them. 

We've had to learn the hard way that hospitals are run by human beings, and are 

therefore imperfect and cannot be completely relied upon as decision making entities 

when it comes to the well-being of our child.  Doctors are people too (albeit well-studied ones), and their practicing styles run the gamut from the intuitively gifted and logic-

minded to the lazy clock-punchers who adore nothing more than the drone of their own 

voice.

If I were to rub my two cents together on the subject to benefit the parents of other health-challenged Minis, it would sound like this:

Whether you feel like it's difficult or unfair that you should have to be your child's record keeper, secretary, and healthcare advocate, it's better for you both that you embrace 

those jobs from the beginning.  I'm not saying that there aren't perfectly capable 

professionals who are able to keep their own balls in the air, but once you realize that communication within the healthcare system is just a glorified game of telephone, you'll figure out one way or another that the only source you can depend upon is yourself.  

Get educated.  Learn medical terms so you can speak their language as it pertains to 

your child's treatment.  Enlist social workers to help you fill in the gaps in your 

understanding.  Figure out how the hierarchy of power in the hospital.  Know your right 

to choose who treats your child.

And most importantly, do your best to be straightforward and reasonably diplomatic, 

especially with those who you have to work with for twelve hours at a time (that is, 

unless you believe your kid is in imminent danger and you can't seem to get anyone to 

listen.  Then by all means, get crunk.).  I can honestly admit that there were many days 

when I snapped at everyone who dared set foot in scooter pie's room because I was in battle mode and I couldn't turn it off.  I pray that those long-suffering nurses understood what kind of mental state I was operating from when I was bitin' heads like Ozzy.  I think I might owe a few of ya a mall cookie cake.

I think that we three Clenneys are soooo eager to be done with this last chapter in Ava Leigh's tummy struggles.  We've been in the trenches so long -- sometimes with forewarning, and other times falling in unsuspecting -- that once we emerge, we're disoriented by the patterns and pleasures of everyday life.  It feels like the exception now to go grocery shopping, to play without being entangled in a wad of wires, even to go outside and sit on the porch.  So now we're all relearning how. 

Because we're blessed beyond measure, whether we're in or out of the hospital.  Because there's more to life than the fight, and a clear mind and healthy lungs full of fresh air are better equipped for the battles ahead.

Pacing.

Smile.

 Sleep.

 Eat.

Repeat.

I wish I could make peace within myself regarding Ava's feeding situation.

Lying awake on this plastic-covered brick of a hospital fold-a-bed, I feel like I've been forced to watch 24 hours of Sarah Maclaughlin's ASPCA commercial, Clockwork Orange-style.  My heart is a raisin.

I have to keep reminding myself that the amount of milk I am giving her is being well supplemented by the continuous trickle she's receiving through her G-button via pump.  It's hard to watch her take only an ounce or less by mouth and be sated.  It's a constant internal struggle to embrace the sound logic of how her doctor has laid out a plan to "prime the pump" and get her digestion running like a well-tuned engine again by keeping it constantly stimulated.  

I was so convinced she would take off like a bottle rocket (boo, bad pun!) after her surgery because of the way she bounced back from her hernia repair in March.  At second consideration, we're playing a different ball game this time. 

Her food now requires thickener (to keep her aspiration-proof) AND a higher concentration of formula, which seems to go down with all the grace and ease of a wet towel.  I know that I would gag and yarf a little if the first thing to hit my dry throat in the morning was the consistency of melted marshmallows.

We're going to see if backing off from the thickener and carefully pacing her feeding speed might make this more tolerable.  I'm hoping that lowering the amount of ThickIt will also stem the green river that high-tides multiple times a day.  (My apologies to John Fogerty.)  This has borne disastrous consequences to her bedding and back end -- apparently one of ThickIt's trademark moves.

All said, the numbers argue that sweetfeet is doing well on paper, and that she is making progress at a pace normal for a wee one who's recovering from low volume feeding AND abdominal surgery.  The emotional, reactive side of me still fights the urge to rend my Target tee shirt and cover my head with the ashes of all the cigarettes smoked on the hospital property line when I see my helpless baby gag and cry.  But I won't throw an Old Testament-style fit.  Patience, Dennis Hopper.

I may occasionally sneak off to lose my marbles in private, but I'm gonna get right back on the horse and continue to be attentive and observant.  I'm gonna take my gummy vitamins, eat real food, take frequent showers, and  get twenty minutes of sunshine a day, because my brain works best when my body is well (and by this I mean I aim to maintain, not to pamper.  My job is mommying.  Not heathering.) And as I see more of the joyful child I know beginning to resurface, I will throw increasing amounts of time into playing and singing and snuggling, all for the sake of insuring her that she IS going to be all right. 

Even if all right seems like a pinprick of light at the end of a tunnel.

It's small, but it's still a light.  

The Road to Recovery is Paved With Cartoons

Mommy, Daddy & Ava Leigh appreciate your continued prayers and spontaneous acts of generosity while we take time to concentrate upn the business of healing.

Thank you for the real food, naughty food, and offers of assistance and companionship.

We are humbled by the love we're shown yet again.

Thank you for not forgetting about us.

Hospital time has the potential to be isolating,

but we are heartened by the few moments a day that we are able to interact with you.

Please be patient, as we are currently in a holding pattern of fitful naps, 

post-op pain management capers and ten replayings per day of the Curious George movie.

Ava still has quite a bit of recovery to accomplish,

and quite often attempts to play double Dutch with the many wires affixed to various points of her anatomy.

Portions of exasperation for all, with hers being the greatest helping.

On the bright side, 

the gastroenterologist who we wrangled into becoming 

her primary care physician during this stay

has arrived upon the scene

and has taken the reigns of  Ava's care

 into her capable hands.

I am currently resisting the urge to make 

an allusion toward Gamdalf the White HERE.

In short, she has already begun to prove herself

as the doctor she is reputed to be.

Being listened to and reasoned with in a non-patronizing manner

by a straight-shooting and capable doctor

is like falling into a bathtub

filled with declawed kittens.

Yes, it's just that refreshing.

Ahhhhhhhhh.

Mini-squoosh is in good paws, er, hands.

The Night Shift

While I sit by Ava's bedside with a cup of cocoa-flavored lava (momma likes it toasty!) and await her next dose of painkiller, the wormhole at the center of Facebook sucks me in and feeds me images of the things I used to be caught up in before Ava arrived and staked her rightful claim on planet Clenney.

There's some pageant fashion.  Some New Jersey prog rock acts.  Reminders of the upcoming Twin Peaks Fan Festival in Squalomie, Washington (if I'm gonna geek, I'm gonna geek whole-hog).  And look, kids!  A well-written and timely article on the important political topic of the day.  Keen!

It's amazing how finely distilled your life becomes when most all of your pleasure is derived from insuring the comfort and wellness of another (tiny) human being.

Because I can't sleep, here are a list of things that slap a smile on my face tonight:

1.  The peculiar squeaking that occurs only during deep baby sleep.
2.  Real food.  The kind with vegetables and no mayonnaise or high fructose-based dipping sauce.
3.  Timely and attentive nurses.  They don't have to be overly friendly or even social at two in the morning.  Just competent.
4.  Riffing on the subject of the Golden Girls with a youthie from church.
5.  High oxygen saturation levels during Ava's sleep time. This means no nasal cannula, no alarms, no panic.
6.  The fuzzy blanket sweet Daddy brought me from home, because this sheet of toilet paper they call a hospital blanket just doesn't cut it.
7.  All of the funny, insightful things my loved ones have posted throughout the course of their day.  It does my heart good to be reminded there is a world outside hospital walls.

*~*~*~*~*

After Ava was wheeled into surgical recovery this afternoon (and all the color came back into my face, I was told), it took awhile for me to adjust to the look of her tummy.  She now has what's referred to commonly as a "button" -- a tube that allows us to deposit food directly into her stomach if necessary.  This serves a twofold purpose: to secure that part of her floppy little stomach muscle with minimal scarring at her abdominal wall (which will better preserve her odds of keeping any possible future surgeries from being done in a more invasive manner than laparoscopically), and to offer us a way to feed her if she continues to refuse complete oral feedings (which we will begin to attempt tomorrow).  She has a few new little scars that look very similar to the ones she had from her first surgery, and her bellybutton's been remodeled, giving it more of an inny look.  She might appreciate that during future bikini seasons.

I've seen a lot of graphic images of the human body (some in pictures, and some in person) and even though this is a tidily-accomplished surgery, seeing what Ava would have to recover from this time made my stomach wrench.  That'a part of the reason I've been awake all night, mentally measuring the inflection and speed of her breathing and keeping a close eye on her monitor.  Such an intrusion into one's abdomen has the certain risk of becoming extremely hurtful if her pain management is not monitored mindfully.  Being as she is my flesh and blood and her cries are hard-wired to send off a rush of panic in my Mommy brain, it's best if I miss some sleep tonight to insure that kitten's pea-green boat to dreamland is not rocked, and that her comfort is maintained.

So sleep tight, Sweet Cheeks, and start practicing your sleep smiles for when Daddy arrives in the morning.  The Healer holds you, and Mommy is happy to have an angel like you to look after in the night.

Twist & Shout

I'd like to believe that Jason and I are not those people who insist upon the superiority of our own opinions.  Sometimes we hate to be in the right, because our glass isn't half-full of kittens, lollipops and sunshine.  It's full of facts and evidence as we perceive them.  Our drive to protect our fragile daughter has tippled the cup past the overflow point. 

Today was a confirmation that refusing to rest on a flimsy, unproven diagnosis was the right thing to do.  As a result of being insistent on taking a further look at her GI, we now have a confirmation that she has been experiencing symptoms that presented much like her previous intermittent blockage because she, ahem, IS SHOWING SIGNS OF A CURRENT INTERMITTENT BLOCKAGE!!!!

This time it's her stomach.  During the process of x-raying her progress during the follow-through barium contrasted study, something called a gastric volvulus was observed.  For those of us who dropped out of college to pursue a career in the, ahem, worldly arts, this roughly translates to literally having a turned stomach.  You can find a much better description of the condition and all manner of enlightening diagrams HERE.  The particular kind of peculiar-looking twist she has is of the Organoaxial variety. (Okay, go back to the link and look at the picture.  I'll wait.)

While this condition can prove quite dangerous to life and health, it seems that she has not begun to show typical signs of long-term aggravation -- no major infection, no abdominal swelling, etc -- which buys us some time to discuss treatment options with her surgical team tomorrow.  And let me reiterate how grateful we are to finally have them on board again.  We have never, ever had an issue with their listening skills.  Mad props to the scalpel jocks of ACH.  All we have ever asked is an open ear, and that's bought Ava a lot of good developmental time between surgeries because of parental concerns and preferences that they allowed to be brought into account.  Allowing us to feed her orally instead of pressing on with a routine placement of a G-tube has been a big part of her success thus far.  Oral feeding has given us a good indicator of whether Ava was well or ill and in need of medical attention.  I can't say we would've been as observant without this indicator to trace out these patterns for us.

So I've already written a bit more than I intended here.... guess it's a justifiable excuse to squeeze the last few minutes of my thirty-first birthday from the clock by doing something productive, instead of laying on the hospital chair/bed hybrid and watching closed-captioned Bette Davis movies with a nervous heart tumbling 'round my chest and a Coke float chasing my butterflies.  I have to tell you, the very real potential of another impending surgery for our daughter has me drowning in nervous energy.  So many people have reached out to us in kindness and love, and yet I find it very difficult to even begin to reply to each individual who voices their heartfelt concern for sweet Ava and her parents.  We spend our entire day consumed with pursuing her health and worrying over how quickly she might be losing ground, every spare bit of mental and emotional energy I have is spent on making sure that Ava is so occupied with happy things, she doesn't realize she's in the hospital again.  Maybe I need to pretend that very thing more than she does.  In any case, I'm terribly sorry if I'm being neglectful of anyone's concerns.  Please know that as time allows, I will return to this space in the wee hours as she sleeps and post about her most recent progress in this space.  Thank you for all your love and kindness, truly.  Again, I beg patience of anyone who might want to come in for a visit -- we need most every hour to concentrate on the matter at hand, with our few spare minutes spent on long-distance household maintenance or simply eating and sleeping.  Prayers for our mushmallow are on the top of our family's list of requirements right now, although I know those never cease. 

I love you all,
Ava's Ma


 

The Short of It

Yes, Ava has been readmitted to Arkansas Children's Hospital.

No, it was not because of an emergency.  With her taking about 14 ounces of food per day (on average) since we were discharged a week and a half ago, we couldn't afford to sit on our blessed assurance for two more weeks awaiting our turn for an outpatient GI study.  With admission, we moved up in priority, and we'll be watching the little dye snake worm its way through her lower inside bits in the morning.  Maybe that will shed some light on why all signs seem to point toward slow digestion (to us as parents, anyway).

I just considered reiterating in writing why we continue to disagree with her initial diagnosis of reflux as the cause of all this commotion, but at this advanced hour, I'm weary of explaining, and convincing others, and pushing my case.  I've done enough of that today sufficient to convict a courtroom full of harmless kittens.  After a visit to the Ear, Nose & Throat clinic and yet more proof in hand from within ACH that Ava's reflux is not the all-encompassing evil it has been cast as, I am confident that the right doctors will reexamine her case and fill in the gaps with ALL of the pertinent information in mind.

Mommy and Daddy have their game faces on again.

Ava Leigh has her sleep face on now....she's socked out and knocked out because she had her "WHAAAAAH!!!" face on earlier.  I just told myself that every one of those alligator tears she cried during her IV placement were payment toward a healthy tummy later.

If only you were this hungry for milk....

Push Day Countdown!

It's hard to believe that anyone my age is adult enough to have a baby of their very own to squish.  To sixteen-year-old me, thirty sounded terribly serious and worthy of bearing the responsibilities of child-rearing.  Now I realize that it feels almost as clueless as sixteen, with the major difference being the migration of hair or dimples into all the wrong territories.  

Age alone doesn't adequately prepare or qualify you for parenthood.  You earn your Mommyscout badge by practicing your bottle feeding/butt-wiping skills on other people's healthy children, perhaps as a helper in the church nursery or as a babysitter when an older cousin just needs a little Olive Garden in her life (and goodness knows why, because you and I know it's just dressed-up Chef Boyardee).

All of that said, I can't think of anyone better qualified to take charge of a tiny human being than my sister, Ava's Aunt "Gigi".  She's earned a whole vest-full of said badges.  I can hardly wrap my head around the fact that my BABY sister is toeing the jumping-off point of delivery as we speak.  This is the kid I remember bouncing around her lead-painted crib in our shared bedroom twenty five years ago.  

I want you all to send your happiest thoughts and hopeful prayers her way right now as she prepares for those Braxton-Hicks to convince her it's REALLY time and oh crap, she needs an epidural, like, yesterday!

Angela, Ben, I can't wait to meet your precious Juliana Adel, and for her, Jazmin, and Ava to start destroying their grandparents' yard together!  It's so extra special to me that we will both have girls within the same year, and they'll grow up running around together, your tall baby and my short baby, lookin' every bit like the Bert and Ernie of Gourdneck, Arkansas. 

Now hurry up and have your baby on my birthday!  It would be the happiest ginger aunt in the world....

Indy Day

In honor of the recent celebration of Independence Day, Mommy is declaring herself independent from this habit of worry she seems to have developed as of late (at least for today), and is choosing to enumerate Ava Leigh's hard-fought victories.

At five and a half months, our little sweet cheeks can....:

*....pick up her Wubbanub pacifier and pop it in her mouth.  The first time I saw her do it, we were in Walmart three weeks ago and I wasn't sure if it was a happy accident and her waggling aim just managed to make contact with her wide open mouth at the right moment.  That's when she picked it up again and made like Maggie Simpson.  I swear she even looked a little smug after she did it.

*...hold her head up like a boss, which means we can carry her without supporting it.  She's even developed the core strength sufficient enough to balance herself sitting up with a little assistance.  That is, unless she has one of her "happy attacks", when she gets so tickled she fearlessly pitches herself backward like a Russian gymnast.  Then she requires a lightning hand to catch her.

*....howl....?!?   We'll be riding along in the white Avenger (which is Mommy's car, not a superhero) and the normally peep-ish pipsqueak will let rip with a glissando run that sounds something like "Ahhhh-RRRROOOOOOOOMMMM."  And I'm like, FULL MOON?  Baby Wolf?!

*....pat the bunny, grab a handful of grizzled facial hair, and catch Mommy off guard with a rib-tickling during bottle time.  Sometimes she even pats me while I'm feeding her, as if to say, "There, there, Mommy.  We'll figure out how to get my appetite back."

Just when I feel I'm at my wit's end with my incapability to get to the bottom of Ava's waning drive to eat, I feel like she looks at me with eyes wiser than time, our 

Father speaks calm to me, and I can breathe again and battle on, armed by such assurances....

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever."

Psalm 73:26

Deaf.

We're on our way to the pediatrician's office today, and even though this appointment was meant to be a checkup, something tells me we might not be headed home when we leave his office.

My guess is we'll probably end up back at Children's, or Daddy will have to bring baby downtown to bail Mommy out for throwing fish from the waiting room fish tank at the doctor's scheduling staff.  (About half of the times we've made appointments with our primary care fellow, we've ended up in front of another doc.  She's perfectly nice and seemingly competent, but I asked for MY doc for a reason.  Don't give me a muffin and tell me it's a cupcake.)

Since we returned home on Friday, Ava's progress has ground to a halt.  We're doing everything we were advised to do by her doctors -- feeding her fortified, thickened formula from a special bottle, medicating her reflux, using advised feeding positions -- and what little ground we had gained has slipped drastically.  

My baby girl rarely seems hungry.  She can hardly tolerate more than two and a half oz at a time, with the exception of her 5 pm meal, when she takes four.   She ate well last night, taking her bottle calmly and without excitation.  She nearly polished off five ounces when she tossed the whole thing.  I even tried waking her in the night for a bottle, but between the spell of the sandman and seeming full, she hardly committed to the single ounce she ate.

Didn't seem hungry this morning, even thirty minutes after she awoke.  She kinda loblollied around with three ounces for forty minutes before she outright refused the remainder.  I let her play and rest,  then offered her more two and a half hours later.... And that's when the whorking began again.

She acts as if she's full.

If a baby tells you something, believe it.

Being full is not the same as reflux, people.  

Even if her esophagus was acid-burned, wouldn't her stomach still be empty and transmitting hunger signals?  And wouldn't she have showed signs of major reflux, say, ON AN UPPER GI STUDY?

"A little reflux -- the normal amount for her age," is what they saw in the X-ray room.  Direct quote.

I'm ashamed to admit it now, but I think I grew so weary of trying to get her medical team to hear me out, I just became resigned and gave into their way of treating symptoms instead of isolating a CAUSE and then treating accordingly.  And now we're back to square one.  That's what I get for allowing them to send us home with a speculated diagnosis.  

Until I get someone to really investigate beyond what they were willing to, I suspect I'm about to bruise some egos and make some enemies our next go round.... 

Which will probably be taking place in 3, 2, 1.......

*~*~*~*

(Post-appointment update:)

I do think we have further, deeper work to do to get her eating well again.  As much as I wish the cause of Ava's eating problems were as simple as refluxing, the fact that she's relapsed into her same old patterns since we got home confirms to me that we just got a ticket to Nowheresville upon her discharge.

I'm grateful that her pediatrician took the time to sit down and validate our ongoing concerns today.  We have a couple of of pending referrals to investigate our lingering concerns regarding her digestion, and a weight check on Friday at his office.  That is, if we're not checked back in to ACH by then for dehydration.  

Going to spend the next few days taking things slowly and gently with my little monkey moo, all the while reserving my own strength and keeping the laundry running and the pointless gallivanting to a minimum.  In the history of tired moms, I know there has been much harder crosses to bear than mine.... But minimizing my own situation doesn't mean my brain doesn't feel like scrambled eggs sloshing around up there.  It just means that I'm going to have to reserve the energy I normally utilize in socializing and doing fun things in order to  make sure i am über-organized, well-informed, and clear in my communication when I most need to be effective.

So I apologize to anyone ahead of time if I fail to give special attention or detailed, minute to minute updates on what's going on with us.  I'm going to have to increasingly depend upon  you to check this space to answer those questions.  Just please be patient with me, with us.    

Ava needs my best.