Blessings enumerated.

Took a few blanket-and-chai moments after Ava's bedtime to reminisce through some of my favorite images of our little kittenhead.

As Uncle Paul sang to baby me through Pawpaw's cassette player back in the 80's:

"These are the days of miracles and wonder

So don't cry, baby, don't cry, don't cry..."

This is our testament to God's grace....

I have a strong feeling we're being released from the hospital tomorrow.  

Honey Boo Boo Dog, we're a-comin'!

Bacon for EVERYONE!

If You're a Sad, I'm a Sad!

The sweetest, funniest, most heart-wrenching thing happened with Ava yesterday.

Her speech therapist and I had been in the throes of trying to find the perfect combination of formula thickness and delivery to allow her to bottle feed while minimizing her risk of aspiration.  She had already yarfed once that morning, and was doing her best to refuse any more than two ounces at a time.  I was beginning to wonder if my little fat fat's nummy leg rolls were going to disappear forever.

(The storyteller in me will put it that way, but I want to acknowledge that it is acutely terrifying and discouraging when your infant refuses to eat.)

I could feel a lump in my throat begin to form, a terribly irritating pearl of emotion that swelled and swelled until the therapist left the room and I was assured of privacy by click of the door handle behind us.  Then I finally did what I end up doing at least once every time we've come to this hospital.  I broke down, hard.  Only this time was different, as I couldn't sneak off to a private corner to do it.  The overwhelming wave of frustration smashed into me, carrying away with it the hope I had for a timely resolution to this frightening episode.

(Know that in revealing this vulnerable moment, it's not my intention to elicit sympathy by describing my brokenness.  As a matter of fact, don't even worry about offering words of encouragement.  These moments just happen in parenthood, and I'm capable of accepting that.

Crying was a physically and emotionally warranted cleansing process that just needed to take place, and sometimes it takes me weeks, months, even years to cry about things that deserve my tears.

I'm simply writing about this to frame the beauty of what happened next.)

As I sat in our nursing rocker pressing Ava to my chest with one rigid hand and covering my face from betraying my grief with the other, I could feel my baby melt to my side, seemingly unaware of how much her struggles were frightening me.  I sobbed and shook, gripping her tighter and tighter.  Realizing how physical this emotional storm was threatening to become, I went to pull her away from me and lay her in her crib.  Then she looked up at me with concerned eyes and stuck her bottom lip out.  Her eyebrows hit her hairline, and then she burst into enormous crocodile tears!

I was flabbergasted.  Maybe I'd accidentally pulled on her feeding tube or pinched her fingers against the chair, I reasoned.  I cleaned my act up just long enough to get her to calm down, then the unbearable weight of frustrstion hit me a second time and I went bananas all over again.

My gaze fell back upon her sweet face, and as soon as our eyes met, she did it again!

She first made this face:

..which graduated to this one:

...and with that, I was certain: Her heart was completely broken because she recognized that mine was.

I straightened up pretty quickly after that.  As soon as I could manage a phony smile, she instantly 

calmed down and broke into her trademark grin.  You know the one -- her cherub cheeks round out 

while her mouth gasps wide with uncontainable joy.  I'd sell everything I've ever owned if I could 

guarantee she would smile at me just that way for the rest of my life.

Before that moment, I didn't think that she was aware enough to react to much of anything other than what happened directly to her.  Boy howdy, was I wrong.

Although I wouldn't want her as my child to bear the burden of my emotional heaviness, a part of me is glad she was able to see me for where I was at that moment.  When she responded as she did, it drove home the fact that it's not only my job to teach her right from wrong.  I have a responsibility to model what it is to handle strong emotions in a healthy manner.  Even if that means crying and not looking like a grow up for a moment.  Or allowing the warmth of unconditinal love to lift you out of a looming depression by allowing yourself to smile through your tears.

God was so merciful to me when he gave us this child, exactly the way she is.  Everything about her answers my shortfalls with grace.  

I love you, monkey-moo.

Breathing clearly=seeing clearly

Happy, happy, happy.  No ducks necessary.

As you can judge for yourself, little monkey moo is feeling significantly better.  She's grinning, she's frolicking her blankets into a wad, she's laughing at Sleeping Beauty.  (I don't blame her.  It's a pretty goofy.  Was that really what passed for plot back in '59?)

Mommy and Daddy are undeniably thankful that she seems moreso her squiggly self as days progress, but I freely admit that I'm still on edge, expecting another shoe to drop.  Babies never keep their shoes on, anyway.

I suppose the question we should ask ourselves at this point is: are we willing to accept progress without definate answers?  We may have to.  If she has clear lungs and is feeding well without sicking it up, no doubt we'll be out of here faster than Ricky Bobby.  If Ava  is well and showing no signs of repeating her previous symptoms, I couldn't blame her medical team for making that decision.  Still, mommy does not sleep soundly on a pillow stuffed with theories and suppositions.

Considering her progress and what she has been responsive to, these are our best guesses as to how we ended up in the hospital for a week:

-  We know that her bacteria colony count was enough to indicate the onset of a UTI, and even if that number was insufficient for a full-blown diagnosis, it might've still been enough to make her feel crappy.  Hence, her positive response to a round of antibiotics.

-  Feeling crummy might've been enough to make her vomit.  It's possible that a digestive bug might have contributed, too -- I can think of a couple that have gone around in the past month.  Specifically lower GI bugs.

-  I may have been pushing our luck to try to feed her in a vertical position.  I truly didn't believe that she would be so prone to aspiration -- or perhaps I believed I would be able to tell that something was amiss healthwise if she couldn't handle it.  I should have listened to others who called the practice into question when she would cough and sputter before she assumed a good breathing/swallowing/sucking rhythm.  This factor in particular makes me feel horribly guilty, because it would mean her low O2 levels would be completely my fault.  I was so encouraged by the developmental ground she had gained, it spurred me to push her too hard at the price of her safety.

While it's also possible that the junk in her lungs might also have come from sucking in while trying not to toss her cookies, I believe there were more oppurtunities for silent aspiration while feeding than while I was leaning her forward as the poor dear puked down my shirt.

This hospitalization has driven me to seek information on what health complications Ava might be prone to as a child with Down Syndrome.  What I've read during this time has really forced me to put some things in perspective in view of doing all we can to keep her healthy.

Aside from simply making sure she receives medical attention on a regular basis (as you would with any infant), we need to be extra careful with her respiratory system.  This means we have to protect her lungs from secondhand smoke and other potential irritants.  I'm sure that mentioning this might upset some folks, but I'm laying this on the table because I know there are a lot of people who care about my daughter, and their choices affect her.  Please read this article on the effects of secondhand smoke upon children in general. Then keep in mind that children with Downs are even more susceptible to contagious infections and respiratory complications, especially pneumonia.  Ear infections and sleep apnea are also some things we'll have to guard against.  Here is another brief read on what we're looking our for.

I'm sure it seems that we are stingy about allowing others to keep our daughter in favor of having grown-up time, and I'll own that.  We don't mean to upset anyone, but events like this have demonstrated to us how easy it is for someone with the best intentions to bruise her health by mistake, whether it's through incorrect feeding or a relaxed attitude toward irritant exposure and contagious illness.  I don't want to be one of those people.  If something ever happened to her as a result of my ignorance or unwillingness to stand up for her health, I would count myself unfit to be this precious girl's mommy.  We do get to spend time together, even if it is at home.  Olive Garden will just have to wait.

Sometimes random things happen when you're raising kids, sure.  But living in this age of information as a literate individual, there is no reason for me to deny the presence of avoidable risks in Ava's life.  If that means we can't be as socially mobile as we'd like, then so be it.  I'm gonna have a hard time trusting others with her health when I hardly trust myself.

Never gonna give it up....

We took advantage of Ava's newfound energy today and drove her bananas making her smile and wiggle and dance with us!  I'm sure the round of antibiotics coupled with the O2 and breathing treatments are helping her return to her to the squirrely sweet thing we know her to be.

She spent a bit of quality time with daddy this afternoon... At one point, I think I walked in on him teaching her how to dance like This Guy.  Maybe a little more with the uncoordinated shoulder waggle, Moon Pie...

And speaking of happy dances, you should have seen her celebrate the moment she figured out that she cold have a pacifier AND a thumb.  All I can say is that I hope she gets one or both of them out of her system eventually, else we're gonna owe her dentist an odd explanation later....

Looking forward to some answers from a test involving her upper G.I. tomorrow.  Until then, keep winging your prayers ever upward, Ava's Angels!

I thank you god for most this amazing day.

Ava showed us today that something we're trying is working. She was as bright-eyed as a ray of sunshine when she awoke this morning, and has been handing out her trademark squinty/kicky grinning fits all day.  Now THAT'S good medicine.

She had an echocardiogram this morning -- a lot of her symptoms suggested a possible heart defect, although we'd thought by now we've turned that stone over, around, and inside out since her birth -- and the only abnormality was a little fluid related to the cloudiness in her lungs.  It's not causing her
any complications.  It just sounds spooky.  It was enough to tie my guts in a knot when they ordered
the test, but now that it's done, I'm relieved that we've checked that box.

They're weaning her off the O2 as the hours tick by, and she seems none the weaker.  She's maintaining her own levels well, and her breathing has slowed from a shallow pant to a deeper, more productive pattern.

Since she started watching Curious George on her bedside television, she's had a few mischevious monkey moments of her own.  She'll pull her oxygen tube out of her nostrils and pop it in her mouth, getting the rush of her life, no doubt.  She's had a couple of grand bombing diaper blowouts, too (likely a product of the antibiotics), and she gleefully wallows and flings the contents all over the bed and herself while the rest of us try to contain the fountain of feces.  Monkey see, monkey doo!

To sum up today's events, we feel like she's making progress in clearing her first hurdle -- the respitory quandary.  Even if we don't yet have a clear answer to its cause, we've made a few educated
 guesses as to how we might be able to prevent it in the future.  Once her medical team feels like her oxygenation is in the clear, we'll be on to the next challenge.  We're hoping that by Thursday, we'll be able to take a look at her upper GI and observe the mechanics of a feeding session, then get those
results in the hands of her doctors and surgery team.

...

It is a thoroughly surreal experience to be back in the hospital with our sweet baby.  Time feels frozen here, like we never left the first time.  It's like living in an alternate reality in a universe parallel to the peaceful life we have at home.  Your lives together change so much -  the setting, the cast, the tempo of each day....

It's midnight thirty now and I should be sawing logs, but instead I'm writing with one eye on the iPad
screen and the other on the waning moon shining over the cityscape.  The moseying tempo of Glenn
Miller's "Moonlight Seranade" softens the nerves.  The steadiness of Ava Leigh's breathing assures me that her slumber is a refuge and a relief.  I can be grateful for this very moment.  I really can.  Stretch that thankfulness muscle 'til it's back in shape.  If you don't use it, you lose it.

And since I've had this fellow's music on my mind a lot since our precious daughter's birth, I'll share the song of his that's carried me all day.  The text is by e.e. Cummings, and it's artfully set by an incredibly gifted composer I used to cross paths with once upon a time.

Back to War.

Rough.

There's a word for ya.

That should sum up the past two days quite nicely.

After another suspicious escalation of vomiting episodes and a steady decrease in successful feedings, we have returned with Ava to Arkansas Children's Hospital.  We brought her to the emergency room after her the last voiding left her seeming too helplessly lethargic to second guess the seriousness of the situation.  It shocked us terribly to see her anterior fontanelle (that is, the soft spot on the top of an infant's head) had begun to sink in -- a frightening sign of dehydration we recognized from Ava's previous hospitalization.  In an instant, our discussion turned from making an appointment with her pediatrician in the morning to how many changes of clothes to pack.

It's like having an old injury that lets you know there's a storm rolling in before a raindrop ever hits your windshield.  No more second guessing.  Don't wait for the watch before the warning. Just go.

So we went.  And after the all-too-familiar flurry of blood sampling and terrified crying jags, little kittenhead was admitted.

The suspects are:

PNEUMONIA.  There's some milky cloudiness in her lungs.  It could be attributed to aspiration of milk or puke, or it might be the community acquired variety.  Or a little from Column A, a little from Column B. Either way, her oxygen saturation was in the eightieth percentile when measured during triage.  She's been on O2 since she arrived, and that seems to be giving her a bit more pep in her
wiggle.

RANDOM INFECTION.  She was first suspected to have a urinary tract infection (which I know from experience can mess you up ten ways to Sunday), but when her lab cultures came in later today, we found it wasn't so.  She's currently on intravenous antibiotics intended to throw a net over quite a few possible problems. You could compare it to killing mosquitoes: best to swing wide with a tight racket and eliminate many than to nail one or two little suckers with a swift narrow bat, I guess.

FOOD ALLERGY.  An intolerance for certain formula can make a baby's body go off like a firecracker soaked in gasoline. Just ask my husband, who projectile-vomited for six months of his life  before his folks were able to locate a mix his body could tolerate.  Poor lil' feller.

THE MYSTERY OF THE BOWELS.  Like Lord of the Rings, but more with the preciousness.

Seriously, this is the one we're most acutely concerned over.  In my heart of hearts (and I use that phrase, but exactly how do anatomically locate such a thing?!?), it disturbs me to draw a correlation between her current symptoms and those she exhibited before we discovered she had a strangulated incisional hernia back in mid-March.  I knew better than to wait for the pea soupy stuff to make its inevitable entrance into this new digestive drama.  We came when it first turned neon yellow.  Maybe we're learning.

This is the most frustrating part of this diagnostic puzzle to me -- it's like having an extra piece that obviously belongs, yet doesn't fit for nothin'.  I can't shake my suspicion that something is amiss in there, even if her initial X-Ray showed that her bowel gasses looked normal, and no blockage was observed.  Just the way her stomach contents were ejected...*shudder*.  Mommy's having 'nam-style flashbacks of watching her decompensate last time....

So until we know what kind of game we're playing, and against whom, I'm going to respectfully ask that there be no well-intended visitors to her hospital room.  I promise to keep you all awash in updates and pictures.  We simply can't risk someone carrying some hitchhiking nasties in on them and causing her to fight another battle before we've come to an understanding about her initial one.  I'm sorry if I black out any other forms of communication over the next few days.  She needs me, and she owns more of my loyalty than social media does.  I'm sure you understand, Gentle Reader.

I will leave you with these Happies:

Ava Leigh could see that Mommy's had a rough day....

..so she offered me a pull on the ol' Wubbanub.  

M

And while Mommy went to make a lap and stretch her legs, the sweet nurses introduced her to the marvelous entertainment of CARTOONS!  She was captivated.

Her first one was Curious George. Then she graduated to Cinderella.

I'll consider it Princess Training.

Handicap

While I was dawdling around Walmart's baby department yesterday and picking thorough the itty bitty incontinence section, I was having a heck of a time locating those special diapers designed to keep the baby pee out of the pool.  When I couldn't find them in the logical place (ahem, with the DIAPERS), I approached a grandmotherly-looking sales associate and asked if she knew where I could find the Little Swimmers.

"Well now, I have to see who you're getting them for," she said as she shuffled around my cart to steal a peek at who was in the baby carrier.  

Ava looked up from the plastic toy she was flinging back and forth.  "Isn't she just precious!" said Walmart grandma.  I beamed, of course, perfectly willing to accept full responsibility for such a glorious child. 

"Bvvvv!  Bbbbbllurv!" Ava exclaimed through a wide grin and a spray of spit bubbles.  Just keep turning it up, sweet pea, and we'll never get out of here, I thought.

After the typical round of cooing and foot tickling, Walmart G'ma finally reassumed her regular vocal pitch and asked me how old Ava was.  "She's almost five months," I replied, and noticing the concern in her eyes as they passed over my daughter's slight form, I added, "We knew she'd be smaller than most children her age -- she was diagnosed with Down's at birth.  She had surgery when she was three weeks old and was in this hospital for twenty days, but considering all she's had thrown at her, she's thriving."  

Looking back on that decision to lay my momma cards on the table and talk about her medical history and diagnosis, I don't feel like I did anything wrong by stating something that might or might not have been obvious.  I've mentioned it in conversation before, to different responses.  In most instances, the other party would usually take a second glance at her and nod or give a knowing smile, and that would be that.  There have been a couple of times when I've brought it up during the course of a discussion when it's taken someone by surprise, and I've just had to tell myself that they look fish-slapped because they didn't notice things that doctors even had to point out to me when she was born.  Still, no biggie.  I don't expect you to keep up with the minutiae of our lives.  If we don't chat it up like old chums on a regular basis, it wouldn't shock me if you didn't know my beautiful daughter has an extra chromosome. 

Maybe I've just been lucky that no one has said anything terribly tacky about it in my presence, or they've always been fortunate enough to catch me in a diplomatic mood and I could chalk up their insensitivity to sheer ignorance.  

  

Yesterday wasn't one of those days.  I wasn't in the right frame of mind for social hour.  I just wanted to grab our tiny aquatic diapers and skedaddle.  My head was throbbing to the beat of someone's blaring ringtone.  Ava needed a full-sprawl, log-sawin' nap.  I had one foot poised to scram when the woman went and let fly with this bogey:

"You wouldn't have to tell people she has Down's.  Or maybe you could tell them that it's just suspected, but it's not confirmed yet."  Then she looked at me like she'd just solved the New York Times Sunday crossword. 

Apparently it was my turn to have a trout-to-the-temple moment.  What the fool was that kind of lie intended to accomplish?  Why should I, or Ava, or ANYONE be made to feel that a disability is something worthy of a lie?

Thankfully, someone else approached us at that moment and asked her for the same thing I had been hunting for (which means, dear retailers, it must've been in a poorly chosen location!).  I politely ducked out of her company and fled to the shoe department, where I hid amongst the Dr. Scholl's until I could sort my thoughts and figure out why I was so shoe-pitchin' angry.  

She grew up in a generation who looked at these things differently, I assured myself.  

She's just talking out of her south end.  She wasn't thinking.  She was just making conversation. 

I didn't bring up Down Syndrome in order to solicit advice.  I told her so she'd understand how far our girl had come.   Then she advised me to deny it, to act as if I hoped she wouldn't be exactly the way she was.

How would she have felt if she had a granddaughter with unique red hair, and I told her, "Oh, she could always dye it."  

Or what if she had a grandson who was shorter than every one of his classmates, and I advised her to teach him to walk in stilts every day so no one would be the wiser?

How sad to be unable to look things in the eye, acknowledge them for what they are, and just roll them into the snowball of everyday life.  

I think her self-imposed handicap is the actual tragedy.

 

Film

Thank God for film.

It allows me to compose the history I was too busy to write.

Film reminds us that we were all in style at one point in our lives.

It confirms that even when we were at an awkward and painful age, we still had every reason to be happy.

It assures us that just because you start off with a dumb haircut doesn't mean you're doomed to keep it for eternity.

And if you occasionally bother to smile, good things can happen to you.

( you might get a crown... Or a cookie!)

No one will notice you're knock-kneed if you walk with purpose.

Imitate those you admire....for the right reasons.

Sometimes when you try to look like someone who should be taken seriously, you end up looking like even more of a goober.  Don't try so hard.

Once you get where you're going, remember to pause and enjoy the view.

When you come across someone special, keep them close...

...because you'll never know how much you loved them until they're no longer around.

Every silly, mundane, despairing, gleeful, spontaneous moment is precious.  

 



     

And if you recognize that, none of them is ever wasted.