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


HereWeGoAJen said...

I adore the last picture, I can't even tell you why. Do you think the hospital will eventually decide that you should just take a hospital vent and a nurse or two home with you?

It just makes me so happy to see Ainsley out in a stroller.

sprogblogger said...

She is one cute baby. And yes, I love seeing her out in her stroller. Here's hoping that stroller walks become more the norm and less the event VERY VERY soon. I rarely comment, but you should know that you've got one more person out there in the world pulling for little A (and for your whole family, of course.) Thinking of you & your family.

Liz said...

Lookin' good Ainsley!

Ms. J said...

Here smile is as giant as her chubby legs :o)

Love reading your updates, whether up or down, because the sarcasm and exaggeration is always satisfying.

Your family is in my thoughts, every single day. I know that doesn't amount to anything, but I still feel like telling you.

YAY for a fieldtrip! And lots of glamorous personal assistants - she is soooo in training for her eventual celebrity status!!!

Stacey Iofredo said...

I love your updates and am thankful that there are little hurdles being crossed. I still think about you every day and pray for you guys a lot. Someone sent this to me recently and I thought of you...

You've probably already read it...but it's helping me get through things and think it might help you too!

Sue said...

Ainsley looks great and I'm thrilled to hear about all the things she can do. Sorry about all the vent drama. My soul is crushed right along with yours.

lifefamilysanity said...

Dear Ainsley:

Sweetie, you will always be the center of everyone's attention (except, maybe Olivia's, because, well, she's kind of the Queen Knepper). You really don't HAVE keep the dramatics going. I know your Mommy is quite the attention whore, but I promise she will gladly concede the spotlight to you for good things like breathing and eating and not having any more strokes. K?

A New Beginning said...

I think it is SO AWESOME that your hospital is willing to do so much to take Ainsley outside. What great pictures.

areyoukiddingme said...

That's the good part about babies' brains, I suppose. There's nothing really there to relearn, so they can just adjust. I hope that she's reached the end of her medical repetoire, and can only grow and breathe and eat.

Will you get to take some helpers home with you? That sounds like an excellent plan.

Milla said...

You are all extremely awesome, Ainsley is a delight, totally delicious and cute and it is something amazing to just see the pics of her out for a stroll. Thanks for all the posts that you manage, I don't know how you are still the funniest writer that I've read (with the tired and the busy and the other stuff that requires your energy) but you are. So there.

Crazy Sister said...

How cruddy that all your home scenarios end in "if that doesn't work call 911"! So reassuring.

In spite of the drama, she looks like a really happy baby! Love the pink bow on her head!

Krystle said...

I despise the "I don't know how you do it comments," as well. It's not like we really have a choice, except ya know, adoption.


I just wanted to say that you are supermom and I hope things stay drama free, atleast for a little while, i'm sure you could use a little break.

Peyton had a stroke before she was born, and she had a huge amount of right sided weakness from birth.

If she's not showing any sided preferences, that are that noticeable then, that's great. It took a year of PT for Peyton to start using her right side, and she still prefers her left.

The whole, baby brains will 'heal' themselves, is really true. I know another little girl who had a stroke too, and we met her when she turned 3 and she had no lasting effects either, her last MRI like Peyton's was practically clear. The new areas of the brain cover up the bad/damaged areas, and wallah! fully functional brain.


Wendy said...

Hi Jen :) It was good to read an update about you and Ainsley. She's just an amazingly strong little girl, isn't she? I love the pictures you posted. I hope that her health continues to get better with each day. I'm sorry to hear that she had a stroke at one point...hopefully with all of the help she's getting from the hospital staff, things will get better quickly.

Thinking of you. I'll have to look for you on Pinterest. I am a tad obsessed with it myself. Okay, obsessed might not be strong enough of a word, haha!

Shawn and Aimee said...

That is one impressive little girl! The outside pic is so sweet. She has a Super Mommy...that's how you do it. And she's lucky she does.

Cavinder Family said...

I love your blog, so I've awarded you with The Versatile Blogger Award! Check it out at

Losh said...

Ainsley is a poppet and she looks happy to be in the fresh air.

Hoping, hoping, hoping that she stays well and gets to come home soon,

Carol said...

Love, love, love seeing the two of you outside and enjoy reading the comic relief showing that things are most likely getting better and better. Since you're back to writing like yourself!

Carol said...

Write when you can and only if you want. You both look great in the outdoor shot and I love the next shot that shows the truth of what a PITA it is....but you did it anyway, which makes you a super mom.

Rebecca said...

Jen, I found your blog while I was pregnant with my little one some time in 2010. Not in a looser/stalker sort of way, I was intrigued by the struggle you had in historically trying to conceive and enjoyed your writing style as I read through your archives at that time.

I regret that I've since been wrapped up in my own personal life since my little guy was born on Oct. 19th 2010, and am taken aback by what you've had going on in your life since the last post I read some time in 2010.

I've gone through and read everything to date to get up to speed and am so happy you've had a wonderful first baby and have had the opportunity to conceive again.

There's not a whole lot I can say as a stranger in your life to make you feel a sort of peacefulness that I wish upon you, however, I pray that you (and it seems as though you have gotten there) find a way to enjoy the "new normal" that is your existence with this new love in your life. There will be ups and downs as you are well aware, but your love will get you through it.

Fully appreciating your day to day challenges
- Rebecca

Superstar said...

When they ask how you do it, you just say, "we wake up and go". Because really, that's how every single day goes.
While I live in BFE KY, I'll be driving past Akron on the way to Cleveland next weekend. I've been tossing good vibes/thoughts/prayers your way since the beginning. I'll have a hell of a shot from the interstate as I pass by. Hopefully some of them make it to you.

Cheryl said...

I love you, Jen! I can't believe that you're still so fucking funny with everything that you're dealing with. You are the miracle, baby.

Also, I burst into tears when I saw the picture of Ainsley outside. Outside!! What I think I love most about it is that, unlike stupid newborns, her big-girl brain was able to appreciate the outsideness on a much more sophisticated level and thus, made the experience that much more awesome for her.

Cheryl from Staaaaaaaaar

clearness said...

I agree with the how do you do it questions. You do it because you have no other choice. You're doing a great job too. She's getting so big and she's a doll~

Chris and Annalisa said...

My heart aches for you & your sweet babe. (I second HereWeGoAJen -- just take a stinking giant vent & a nurse or two home with you!) You are super mom!

lifewithladies said...

I've been keeping up on your journey from afar and I just had to pop on and say how much I admire you.
It really is quite awe inspiring to live a life like yours and I while it may look like "everyday" to looks like incredible triumph from here.

seadrift said...

You are amazing.
Your baby is amazing, amazing.
The two of you together are an inspiration, to me.
Your attitude - and your humor - are infectious.
Yay you. (-:

From Ado @ The Momalog