Sunday, October 30, 2011

Happy Halloween!

From me, my ridiculous cleavage, Ainsley, Mark, and Olivia.

Sunday, October 9, 2011

When you say you mean the "of luck" kind?

So much time has passed since I gave an actual, real update.  Ainsley is so great right now.  She's doing so many impressive things developmentally that it's hard to believe that at some point she suffered a stroke. 

Strokes are funny.

A few weeks/months/years (who knows, I have no concept of time) ago, Ainsley was being put on a home vent portable vent.*  The doctor decided that all loose ends should be tied up  in case this was the time that she tolerated the vent change.  When Ainsley was very tiny and new, she had a brain bleed that needed follow-up at some point in the distant future.  (Hello distant future!  All 9.5 months of you!**)  It was just a routine thing and we really expected things to look fine in that little ball of brain.

It's always hilarious when we think something will not be a big deal, because then it always ends up being a big deal.  Turns out that at some point, Ainsley suffered a stroke and nobody knows when or why and it's kind of a mystery because she seems fine.

She's delayed for sure.  I think the "official" delay is 3 months, which isn't bad considering all she's been through, and that her age is adjusted 2 months anyway.  I can list the things she doesn't do but that seems unfair.  She smiles and laughs (silently, considering the giant hole in her throat and the airway device that's shoved down through it), she plays with toys, she tracks people, she makes eye contact, she knows her mommy and daddy and regular nurses and acts like a snob to people she doesn't know.  She can sit up for up to a minute and then she usually gets excited over something and then flings herself backward.  She rolls side to side to reach for toys and look at things, she sticks out her tongue and even though I told her she would be grounded for life if she got big enough to get a tooth in the NICU?  I think she is working on a tooth.  She is a TV junkie and will fit in the Knepper house perfectly***.  Plus she's cute.

Over fifteen pounds now.
Everyone denies putting fudge through her g-tube
but I'm still suspicious.

The hope is that the stroke was a one-time thing and that the surrounding parts of her brain will take over and it will all be just goddamned fine.   Only time will tell - so just add that to our list of waiting.  

But yeah, the portable vent was a failure anyway.  She did well the first day, OK the second day, and on the third day she refused to move or look at anyone because she was using all her energy to breathe.  Mark and I do not get excited about the portable vent trials because we've been there before a million times since December - she appears to do well and maaaaaybe she will come home soon and then BOOM!  Pending doom/drama/despair!  Yet the disappointment is soul-crushing anyway, so we may as well jump around and get excited like idiots because what's the difference, really?

Here we are now, with this baby who appears to be thriving but can't breathe unless it's on a hospital vent.  And all we can do is be happy that she's OK, ya know?  Things have been relatively drama free with the exception of a little pneumonia (for mommy and for Ainsley) which cleared up quickly with antibiotics (for Ainsley, not mommy.  Mommy is still freaking sick with no time to go to the doctor). 

People keep asking us how we do it.  How does one answer that?  I mean, you can do anything if you have no choice.  We could sit around feeling sorry for ourselves all the time, but that won't change anything.  Except that it would ruin all the good stuff that's happening, like this:

Ainsley's first trip outside!
It was a playdate with another trach-vent baby, but
I'm not going to post another baby on my blog.
Not everyone is an attention whore like me.
Just in case you were fooled by the apparent ease of  that last picture,
look at this whole ordeal!
These are just a couple of our favorite people who love our baby
and keep her drama at bay while we live a glamorous lifestyle and
make millions of dollars at our super important jobs****.

But still.  Things are moving along.  We've had home inspections and appointments with people from the state and lots of practice doing all of the things that trained medical professionals do that will be our responsibility when Ainsley comes home OH MY GOD YOU GUYS.  Every scenario ends in, "and if that doesn't work, call 911."

I won't make any empty promises for blog posts because I'm super busy and super tired and super uninteresting and every time I try to use my computer Olivia is all LETS WATCH A MOTHERFUCKING MOVIE MAHM!  Plus I'm using all my free computer time on Pinterest.

*At some point, there was a change in reference when discussing the vent change.  For a while, everyone was calling it a home vent.  And one day I was asking, "Do we know when she will try the home vent again?"  And they were all, "try not to think of it as a home vent - try to think of it as a portable vent," and I was all, "really?  Whatever, when?."  And now I make it a point to correct anyone who calls it a home vent.  It's not a home vent it's a portable vent, ya know.

**Oh yes, we've reached the "other whores are having dirty dirty sex (or dirty dirty IVF?) and getting pregnant and bringing home babies all before Ainsley comes home from the hospital" point.  Good times.

***Unless she doesn't like Mickey Mouse Clubhouse, Dora, or Tangled.  Then she'll have to live at Akron Children's forever.

****Some statements made on this blog may be slightly exaggerated.

One Year Ago:  Let Me Clear A Few Things Up
Two Years Ago: Eight Months.  And by eight I mean Ate.
Three Years Ago: Please nominate me for What Not to Wear.

HEY!  My blog is old enough for a "Four Years Ago" holy crap!!! 

Four Years Ago:  Trying to Conceive: A month by month guide