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.

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.