Thursday, July 21, 2011

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.


Monday, July 18, 2011

Spamming you yet again.

The ladies in charge have asked me to share this on my'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!

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