Monday, July 11, 2011

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?

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.
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


Mrs. Higrens said...

Ainsley will be making an appearance outside of the hospital next week? At your home? My Little One would like you to know I just about died with the awesomeness of it all.

And then I died again at the conversation with Olivia.

BrandiH said...

Yay for Ainsley!!! So exciting, praying all goes as planned for you!

And totally adorable to complete brat is the scene at my house too!

PJ said...

Ohmygosh, your GRADUATION day was 3 years ago! Wow!

Excited about the vent thingie and the prospect of her coming home!

Not douchy in the slightest! Wish I could come.

PJ said...

Also, I totally get Olivia's preference for cake, cookies, and popcicles over chicken! :)

areyoukiddingme said...

If you think two is hard on your ears, wait for 4. Or better yet, wait for 5, when you have two of them trying to out-talk each other!

Glad to hear Ainsley is thinking about unleashing herself on the outside world...

Trish said...

I have been reading your blog for sometime now and I LOVE it. Your ability to make others laugh is fantastic. I'm sorry it has to be over the crap going on in your life but you are one funny lady. I wish your family health and happiness with the baby coming home.

starcrossedmommy said...

nope, not douchy at all to give the link to being able to find the tix for your fundraiser.

And the girls are ADORABLE! as always.

A New Beginning said...

You have the cutest babies! Age two gets even better with time.

I am so happy for you all to bring Ainsley home.

(Also, don't fell douchey, how can we send money and help and love and support if we don't know where to send it???)

I hope you have a great party!

Robin said...

Yay for Ainsley!!!

5 seconds from ZOMG ADORABLE to ZOMG LITTLE BITCH...perfect way to describe it. PERFECTO.

alison said...

I SO wish I could come. Maybe if we could just get rid of Iowa, Illinois, and Indiana, then Nebraska and Ohio would be neighbors and we could party! :) (No offense to Iowans, Illini, and Indianans reading this.) Hoping miss A is home soooo very soon! xo

alison said...

OH and we're so there with you in the 2yo mood swings. SO THERE WITH YOU.

Nic said...

Yay Ainsley might becoming home!! So exciting, fingers crossed!!

Laurel said...

Oh wow. I am so glad for your good news. Beyond glad. Keep it coming, Miss Ainsley. Her smile is adorable. I keep on thinking about a couple years ahead, imagining a post that says, "Wow, that NICU time and the surgeries and health issues sucked, but look how great she's doing now." I've seen and heard a lot of those posts and stories; I hope you get to yours very soon.

Also--not douchey. With all you guys have been through, I think most people would be delighted to hear about it. I'm glad you updated us, as I was wondering about that event. I am far away, so it's voyeuristic only, but have a great time!

Also, my gosh, Miss Olivia is seriously beautiful. Ainsley looks a look a lot like her. And they both have your smile for sure.

Kristin said...

YAY! Congrats! I'm cheering before it happens because it WILL HAPPEN.

Enjoy the party! You guys deserve funds and funds and fun. Ha.

Leila said...

I can feel your excitement and am thrilled for you all. Home is where she will thrive and you will heal. Congrats!

clearness said...

Have you filled out the financial aid paperwork through the financial aid office at the hospital? Once when Joey spent some time in the hospital and racked up a huge amount of medical debt (after all insurance payments were paid it was still huge) I filled out the paper work and received a letter about a week or two later saying that based on our income we would be forgiven of 100% of the debt. When we filled out the paper work we were told that just for applying we'd get a 20% discount.

Also, in that letter, we were informed that the forgiveness program would be extended for 12 months so if we returned to the hospital for any reason, we wouldn't have to worry about money.

HereWeGoAJen said...

I do live too far away to come to the fundraiser. Let's all start working on the technology we need to have those transporters that they have in Star Trek.

Blahnik to Birkis said...

my mom worked for a family whose little boy was on a vent (and a whole host of other goodies) for about a year and a half. she started with them when he was about 5 or 6 months? it was tough work but she really loved it. and he is doing SOOOOOOO well now!!! i can't remember the name of his condition, but it basically is one where his body doesn't tell itself to breathe whenever he's asleep. eeek!

the point, i suppose, is that the home health aides are a lifesaver and they will help you out and take good care of your sweet little vented baybeeeee!

good luck, fingers crossed the 18th pans out. holy cow, that's SOON!

(also, my son, who will be 2 on the 21st, just told me, "mama, take it a wittew easy" aka: mama, take it a little easy. really, son?)

Carolyn said...

Oh, those cheeks are adorable!
Good luck on the 18th...I'll be thinking of you and wishing you guys the best!

Emily said...

It is decidedly not douchey.

I'm there in spirit, okay?

Erin said...

So. Effing . Happy! Ainsley comeing home to play?! Awesome. Any description of Olivia?! Amazing. That is all I have. Words and the abilit yto make them into sentences are escaping my me to fully express the total and complete RADNESS that is this post.

See? No words. Happiness for you has broken my brain.

Except to say this:
#1 - The fundraiser plug? Totally legit.
#2 - Diarrhea is really hard to spell.


The Zoo said...

Thanks for the update Jen. What amazing news about Ainsley coming home! Don't tell her about your plans or she might pull a diva episode (on the 18th). Thinking of you, Ainsley, Evelyn and the gang.

Heather said...

Wow! Exciting that Ainsley might be able to come home!!! And I know what you mean about 2 year olds. They recognize cake, beans and hot dogs.

Carli said...

First off - congrats on Ainsley finally coming home. I know you have waited ages for this and you are super excited and terrified all at the same time.

Secondly - after our brief stint in the NICU, I have to say that I have the utmost respect for you. I don't know how you have managed to mother a toddler, work, and still work in visits to the NICU and haven't gone insane yet. You are the bomb (just in case you didn't already know this)

Thirdly - I can't spell the d-word worth shit. (hahahahaha). I just say the runs. And I have had plenty of occassions to spell it lately too. Hope that clears up for you.

YAY again for the homecoming!

eggsinarow said...

Is there an idea for a virtual party? Like where those of us who live a far can give in another way? Just curious.

Also: your girls are adorable!

The Diniwilks said...

First, yay for the home vent! I am so happy for you and your family.

Second, ZOMG ADORABLE to ZOMG LITTLE BITCH cracked my shit up. I have a 21 month old and truer words were never spoken. I think they have some sort of built in defense mechanism to know when to flip the switch back to ADORABLE right before being put up on craigslist.

nyanarose said...

Yay for trialing home equipment! We're not trached but we are home with non-invasive ventilation and it's a lot of work and it feels limiting to be tied to a vent but the AT HOME part of it makes it totally worth it. And home nurses aren't so bad. We have 6-8 hours most days. They're great to let you catch up on your other life.

Go Ainsley! Your mumma and your sister are ready for this chapter to end soon. Enjoy your party, Jenn. You deserve it.

Unknown said...

Home?! ZOMG, HOME!

Trying not to get too excited as to jinx things, but HOME! She's still a sick little girl, but I'm so happy to hear that home is in sight! Yay! Congratulations!

(Hopefully blogger will let me post w/out creating a blog of my own this time. Last several responses didn't make it because of this.)

s said...

my birthday is the 18th, and i am giving my birthday wish to your family... i wish for ainsley to rock the home vent so that she can go home and stay home <3

Milla said...

Can't believe she's coming home, hurrah! It will be amazing. I love the fatness, she looks gorgeous. Fingers crossed for a drama-free week.

I am taking notes on the gorgeous Olivia for when my girl becomes like this.

Hope the fundraiser is an outrageous success and I look forward to whatever us online folks end up doing.x

Kayleikins said...

I have decided that Ainsley must go home on the eighteenth, because it is my birthday and I am supposed to get whatever I want on my birthday. :)

fertilityfreak said...

your blog and your brilliant way with words make me happy, jen.
that is all.
bless you and your wonderful family~

elderbug said...

Jen- I have been one of the lurker followers of your blog for close to a year now. I loved hearing about your pregnancy and felt broken when I read about your loss. I couldn't comprehend how anyone could go through losing their baby. I had a little girl who just died on 5-29-11. She was almost 19 months old. Ryann Serena. You were one of the things that kept me going. I knew there were others who had gone through this and somehow kept going. Thank you so much for being an unknowing support. -Damie