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.