Happy Halloween!

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

When you say stroke...do 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

Our Daily Chaos

Our friend Felicia came to take photos of us in the NICU to put on display at the Just Relax benefit.  Hard to believe this was already over 2 months ago!

We decided right away to not really change anything in the room. Because why try to pretend we are somewhere else? This is our life right now, and it won't be this way forever. It's hard sometimes but that doesn't mean I don't want to remember.



2 year Old + iPhone + NICU + Netflix Streaming = Winning.



Hello, I refuse to stand still so I think I'll carry around my illegal snacks, kthxbai.

I love how we are all trying to convince Olivia to chill out.
Even Ainsley.

Love this one.
They had just started rounds and Ainsley was being totally nosy about it.

Olivia finds the NICU to be exhausting, dahling.
As does her mother.

The estrogen that will rule Mark for the rest of his life.
Start getting comfortable with tampon purchasing, Mark!

Ainsley, getting a taste of what she's in for when she comes home.

I think instead of smiling for these pictures,
Ainsley was going for "fat and intrigued."
Nailed it!

I love daddy because he lets me lay down and be lazy.

Could I interest you in a raspberry?  Or a nibble of wrist chub?

We have a giant canvas of this one.

A post for my husband, the (former) writer.

Mark: Are you going to write a blog post again, ever.

Jen: Ohmahgah I know, I really need to. Every time I think about it I get a brain block.

Mark: Yeah, I'm sure you're not feeling very creative. With everything going on...

Jen: Exactly! I'm so tired...

Mark: Write a blog about that!

Jen: About being tired?

Mark: That, and not feeling very creative.

Jen: it could go something like this: Hello! I am tired and not feeling creative but I haven't posted in a long time so here is some random crap for you to read. Ur welcome.

Mark: ....

Jen: You are full of really good ideas. Thanks for your help!

Mark: Well, I'm not sure if you remember but I used to be a writer so I'm naturally full of good ideas.

Jen: You are a bevy of useful information.

--

Oh, friends. So many updates to give, but so little energy to do so. Soon-ish? I'd promise an actual post soon but I'm afraid my eardrums would burst from the volume of the collective yelling of "BULLSHIT!" that would no doubt ensue.

May I offer you a photo instead?

I'm trying to perfect the art of making people uncomfortable.

I really hate small talk and avoid it at all costs.  I've been known to head dive directly into a poison ivy patch or a pile of used hypodermic needles just to avoid an awkward conversation with someone I barely know or haven't seen for years. 

It's all, oh hello, I swear I care very deeply about your life, let's engage in small talk for an amount of time that we will both find painfully long but we don't know how to end it without seeming rude and so we talk and talk about stupid shit that neither of us cares about until one of us pretends to get a phone call or hears our moms calling us for dinner or (ideally) one of our kids starts acting like an asshole and we can blame it all on them.

Hate small talk.  And interaction with the general public.

I thought that my hate of small talk could not be stronger than it's previous level of: FIRE: THOUSAND BURNING SUNS (which is the level of hate directly above FIRE: BURNING PEE).  But then I had twins (one not alive, one critically ill) which made me fat and I don't have time to work out and also I love shoving pie/chex mix/nutella into my pie hole* and basically I am fat so people have been asking me the most idiotic things, like, "when will your blog be funny again**" and/or "when are you due?"

I know what you're thinking.  You're thinking we've been over this, ad nauseam, enough already.  (You may also be thinking that a sensible diet and a moderate amount of exercise would keep my ass from expanding to the size of 275 Cinnabons arranged in large circles.)  But I like to drive a point so far into the ground that people just start to agree with me to get me to shut up so here we are.  Talking about how fat I am.  Again.

I've got a point (ish) and that point is that I'm practicing my response to people.   Instead of my normal, "I'm not...it's OK" response, I'm thinking of saying whatever pops into my feeble wittle mind and it goes a little something like this:

Could you be more specific? I mean, don't take that as an unwillingness to share. I love sharing. For example?  I was due for highlights three months ago, so...May 20?  And actually I just dyed my hair because my regrowth was 4 inches long and no matter how many times I sang "I'm bringing regrowth back (yeah) you other boys don't know how to act" it just didn't catch on.

Oh.  That's not what you meant.  Gotcha.  My period is due on September 29.  I've been couponing lately which is awesome because I am, like, soooo stocked up on tampons and I seriously just dare my period to come early or late or whatever because I've got pantyliners to burn and I will wear one every day for 10 days before and after I'm due BECAUSE I GOT A REALLY GOOD DEAL ON  TAMPONS AND  PANTYLINERS AND I DON'T CARE WHO KNOWS IT!  TAKE THAT MENSTRUATION!

What's that?  You're pointing...at my vagina?  Oh, yes!  You're right! I am due for a pap smear...oh shit! I was due in July! But, you know, I am trying to decide which gynecologist I want to see since my old one told me that one of my twins had a huge brain and that I should go in the waiting room and wait until he had time to explain what that meant. Because I waited 40 minutes for my appointment because he is behind and now he is REALLY behind and if you would just stop crying, asshole, and go wait so that all these other eager vaginas can be checked out then that.would.be.super.

And then my other doctor was the one who delivered my stillborn baby and my really sick baby and I don't know, something about going there to take my clothes off and show my 'beave just feels awkward, ya know?  You don't want to whip our your beave and feel awkward.  I prefer to feel awesome when I whip out my beave....and I almost always do, I mean, it's not like I have some problem of feeling awkward or whatever when I whip out my 'beave....

Oh, you mean, am I expecting a baby?  Why yes!  Yes I am!  I am expecting my baby to come home any time now.  Or, you know, on or after today*** because she's been in the hospital since she was born eight months ago and she's got to come home sometime, right?!  BWAHAHAHAHAHA!  You are hilar.  We should really talk like this more often.  I have to go, someone in this room is acting like an asshole and it isn't my kid so it's either you or me.  Can you say toss-up?  TOSS UP!  HA!


*I am conflicted over the use of Pie Hole.  I rarely eat pie.  I can't decide if I should say, for example, "I was shoving nutella into my pie hole" or if I should say, "I was shoving nutella into my nutella hole."  The latter makes more sense to me.  But everyone else just uses Pie Hole without abandon and I am a follower, not a leader.  The internal termoil is almost too much to bear.

**My favorite question, by far.  Probably never is the answer but keep reading just to see!  And keep me updated on my non-funny-ness because that really helps me bring the comedy.  Nothing makes you feel amusing like a backhanded compliment!

***Not entirely true.  It will not be today.  But it will definitely be AFTER today so hopefully that provides the information you so desperately ask for every.single.day.

--

One Year Ago:  I Seem To Have Gotten My Apetite Back
Two Years Ago:  And So Now I Call Her Stinkfinger
Three Years Ago: 14 Weeks Plus Bonus Freakout

We relaxed.

I bet you read this title and thought, oh great.  She's pregnant.  HA!  You are wrong.  Let me just start by saying that I won't end this post with the picture of a positive pregnancy test.  We weren't relaxing THAT much.

Anyway.

The morning of the Just Relax party, we saw a teaser photo posted on Facebook by one of the people responsible for all of this wonderful madness.  You guys?  This party?  It was legit.  This was the photo:




It was too legit.
Too legit to quit.
Hey, hey.

You would not even believe this fundraiser.  Unless you were there, which...were you there? Ohmahgah it felt like everyone was there.  I kept saying that it was like our wedding all over again - how every time we turned around, another familiar face was greeting us with a smile.  And also how we had to divide an conquer because it was impossible to talk to everyone.  There were 200 tickets available and it was a sold out event - friends, family, family and friends of family and friends.  Strangers New friends.

Decorations, made by people from all over the place and mailed to Ohio
for our party.

My friend Andrea has a recap here, with lots of pictures.  I took a few pictures that night, mostly to document the existence of this ridiculous shirt:

RAWR

The prizes for raffle and auction were INSANE.  I don't know how many there were, but I walked around the table a few times and was still surprised when I saw the things people won.

Is that tiger shirt up for raffle?  No?
Damnit.

The temperature was in the mid-90's on the day of the party and the venue did not have air conditioning.  So basically it was hot as a motherfucker.  I think we were all a bit worried about it, but it ended up being fine and I don't think anyone let the heat get in the way of the fun.  Plus, I learned a new term: swussy.  It's like swamp ass,  only more classy.

L-R:
Andrea - the one mostly responsible for making Just Relax happen.
Jen - the one with all the drama that makes people feel bad enough to throw a 200 person fund raiser.
Lynn - the one who taught me about swussy. 
(And by taught I meant told.  It's not like she showed me or anything.)

Sometimes I say something that I find to be so hilarious that I keep saying it over and over to people and I know that it's pretty obnoxious but I can't stop.  The night of the party, someone brought me my own special beer (Sam Adams Summer Ale OMGYUM).  And any time someone told me they love Summer Ale, I'd say, "It would be nice of me to share, but I'm not nice, so I won't." 

Me with my beer, which I refused to share
 with people who were giving me money because
they are nice feel bad about my ridiculous life situation.
Not sure exactly what I'm up to.  Looks like maybe I'm minding the stepchildren?

The food was delicious and the music was fab - there was live entertainment and some DJ action.  We got to see all of our friends and family that we haven't had time to see since December.  We ate and drank and laughed and we really did relax, which I think was the point.

Finally!  Someone else who enjoys making ridic faces in photos!

At the end of the night, the total was announced and it made me cry.  Which, doesn't happen a lot as my heart is essentially a blackened little piece of scrap metal.  I have no idea who donated what, so I can't do formal thank you cards.  But I know that a lot of people were involved who read this blog and don't even know us (well, know us in real life - you know pretty much everything because I overshare, which, you are welcome, HA!) but donated money and prizes and wrote us nice cards and letters.  The gross cash donation total was over $15,000.  I have no idea what the prizes were worth, but there were a ton of prize donations.

Don't we look relaxed?
Not for long, as per usual.

At the end of the night, we packaged up a bunch of leftover dinner and desserts and took them to the NICU.  Ainsley was having a rough night, and two days later, her right lung collapsed again and she had to come off of the home vent.  Who didn't see that coming?  Really, she has a two week routine of: OK, good, great, not-so-great, hmmmm wonder what's wrong, crappy.

Dis mah trach.

Lately I've come to realize that we've been thinking of going home as this big relief when it actually isn't. I mean...to a point it is a relief - we live 40 minutes away from Akron Children's, and it will be so nice to not have to drive there and back all the time. But it's not going to decrease the level of stress because we will have to care for a very sick little girl and keep life as normal as possible for a very active big girl. 

It's all very terrifying, if I'm being quite honest.  And knowing that we have so many people out there supporting us doesn't make it any less terrifying, but it does make it a lot less lonely.  So, thank you so much.  Really.  From the bottom of my blackened little heart.

---

One Year Ago:  The Morning Sickness: It Continues
Two Years Ago:  How to make your own baby food, you tree-hugging hippie freak.
Three Years Ago: Lucky 13

Books for Daniel

I am so.far.behind. on blogging and promise a recap of the Just Relax event very soon.

But first, I am passing along some information about Books for Daniel. I didn't know Daniel or his parents, but I heard his story from a friend of mine who is a friend of theirs.  Daniel's mom was lucky enough to be involved with a mom's group who organized this initiative to honor the memory of Daniel Metz.  While I've suffered a very different loss than the Metz family, I can relate to the comfort of knowing that there are so many people out there sending love and support.  If you are willing and can afford a donation, please send a book in memory of Daniel.

I was given the following information to share with you:


In Memory of Daniel R. Metz – Sharing one little boy’s love of reading with his community.

Daniel Metz was a three-year-old who always had a book in hand. Although an accident claimed his life in July 2011, his passion for learning continues on through those who knew and loved him.

Books for Daniel was created as a way to share Daniel’s love of books with children in his community of Maryland Heights, Mo. We’re asking anyone interested to purchase a new copy of your favorite children’s book and donate it to our Books for Daniel drive now through September 30, 2011. Each book will receive a Books for Daniel label before it is distributed to Rose Acres Elementary School, the preschool Daniel would have attended. In addition, books will be provided to the Pattonville School District to expand its school libraries and to Pattonville Parents as Teachers so that children in need can receive the gift of reading from a special little boy.

Show us how Daniel is impacting your life! Snap a photo of you or your children reading the book before you turn it in and let us know why it’s your favorite. It’s not only a great way to honor Daniel, it introduces your fellow readers to some incredible books they might not know about!

Every time a child opens a Book for Daniel, we know Daniel is guiding him or her on that incredible adventure found only in books.

--

If you are interested in making a book donation:

- The mailing address can be found on the Books for Daniel Site, click here.
- Books should be suited for children in Kindergarten through Sixth Grade.
- You can follow the progress of Books for Daniel on the Facebook Page, click here. 

h-o-m-e vent.

This baybee?  Trying a home vent.  Not minding it too much, either.  Not minding it at all so far actually. 

Oh, hai.
Bad lungs are hilarious.

Let's hope there isn't soul-crushing disappointment right around the corner.  That's kind of her M.O.



 

Spamming you yet again.

The ladies in charge have asked me to share this on my blog...it's the online silent auction portion of the truly amazing party that is happening on Saturday.

Click here for Just Relax, Online!

Tickets for the party are almost sold out - last I heard there were only eight left. Pretty unbelievable!

As for updates, things are beautifully status quo. Ainsley is bouncing back from the nissen and we couldn't be more happy. She is sleeping through the night and is happy and smiling all day. First home vent trial is Wednesday and while we are probably looking at another month or two, we are making progress and YAY FOR PROGRESS! Olivia is adorable and funny as per usual. Mark and I have remained happily married and our biggest problem is juggling our television shows during our limited tv-watching time.

Giddy up!

Catching up before my blog is hijacked.

Things sort of turned around last week.  Ainsley was still feeling a bit shitty and spitting up a lot, and we ended up getting the Nissen (fundoplication because I like to sound brilliant and fancy). 

(And when I like to sound brilliant and fancy I make sure that I use a reference link from Wikipedia.)

(Because nothing says "I have smarts" like Wikipedia.)

The Nissen was Friday and Ainsley is still in the ouchy-recovery-addicted-to-morphine period.  BUT, we hope that she will feel so much better now that she doesn't have massive amounts of mucous and formula shooting out of her mouth and nose.  And, you know, maybe not breathing it in will help.  That's my Google MD opinion on the matter.

Also?  ALSO!  There is a new ventilator that can do teeny tiny Ainsley-sized tidal volumes (I am not smart enough to explain this, so here's a link that does a better job than I could).

(OK, well maybe we don't blow farts into Ainsley's lungs.  But really, do you all care about the  mechanics?)

(If you do, too bad.  I'm not smart enough to explain it to you.)

(For all I know, they do blow farts into Ainsley's lungs.)

(Maybe I'll ask during rounds.  They have nothing else to do but answer stupid questions, right?)

So that means we are trying a home vent on the 18th as long as she's feeling better.  And by home vent I mean a vent we can use at home.  (Pause for you to try to understand this complex terminology.)  Like, home at our house.  Not home at Ainsley's house which is Akron Children's Hospital NICU where thirsty parents run amuk. 

(Seriously, no drinks in that place.  Even if your lips are so dry you have a pile of lip skin around your feet.)

The new home vent can do all the same settings that she's doing well with now, but her fart-holding capacity tidal volumes are at 35 and need to be at 40.  So this week we are working up to 40 so we can try the home vent nextmotherfuckingweekGAH!

Your hope of coming home brings me much hilarity.
Prepare to ride the NICU roller coaster, bitches!

Now, I have been warned that the home vent can be frustrating.  And also?  ALSO?  This whole NICU/work/home song and dance has become routine and while I am so stressed out that I have actually learned to spell diarrhea* so that I can properly text everyone and simultaneously complain about my bowels and ruin their lunch?  I'm used to it.  I'm nervous about the next big change - me being in charge of this little drama queen with no nurses or doctors or respiratory therapists having to laugh at my jokes and translate my sarcasm while they care for the FATTEST BABY IN THE WORLD.  <----Ainsley.

*I misspelled it and found out when I did spell check.  Colossal FAIL much?

That's not totally true, though.  We will have a nurse at our house 12-16 hours a day, because babies on vents need 24 hour care and mama needs to sleep.

So that's what's up with Ainsley.

Olivia is two and has many opinions about what should be happening at all times and also?  ALSO?  She will cut you if you don't comply. 

I demand 57, $2 carousel rides.
You work, you can afford it.

Age two is interesting.  It is, by far, the most hilarious adorable time.  Olivia says the funniest things and likes to help and learn and talk talk talk.  She asks to eat birthday cake every day. 

Me: Do you want some chicken?
Olivia: Birthday cake?
Me: Chicken?
Olivia: Cookies?
Me: Chicken?
Olivia: POPSICLE!

The only thing is, a two year old can go from ZOMG ADORABLE to ZOMG LITTLE BITCH in 5 seconds.  And the tantrums?  Oh.  Yes.  They are epic.  And then just when you are about to pull your hair out, she says, "Lub Mom!" and runs away to find a bucket to put on her head while she says bucket head over and over.

Things are never boring with a 2 year old.
Ever.

Swift change of topic:  My friends are throwing us a party!  Here is the link to the Facebook event:  Just Relax: A Night of Relaxation for a Lifetime of Hope.  It is July 23 and is a ticketed event - it seems like people are having a hard time finding the link to buy tickets, so I'm posting it riiiiiiiight here:  Event Tickets.  If you don't have a ticket, you can't get in, and tickets are only being sold in advance.  So if you're planning to come, my friends would like you to know that the tickets are close to being sold out.  And that if you don't have a ticket your ass will be politely kicked to the proverbial curb.

(Do you think I'm douchey for posting about a fundraiser for myself?  I hope not.  I originally tried not to say anything to anyone and hope that everyone would find out, but then people weren't finding out and were thinking me rude for not telling them.  Plus, it wouldn't be the first time someone thought me douchey.)

ANYWAY.  Since a lot of my blog friends live far away, my friends are also planning something for you!!!!  In the next few days, my friend Andrea will give more details.  I would tell you my damned self but I don't know the details so we shall find out together!  Maybe it will involve farts!  Or poop!  Or candy!

--

One Year Ago: I wonder if one of them will look like Danny DeVito...
Two Years Ago:  Olivia Jones and the Milestone of Doom
Three Years Ago: Graduation Day