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

The Gestation Accusation

Nothing says, "you look nice today" like someone assuming that your pregnant when you're not.

I've been accused of gestation twice in the past month.

The first time I was meeting with a client and he asked me when my baby was due. Luckily I didn't really follow what he was saying - I thought he was asking when I had my baby because I was pretty sure that he knew I was out on maternity leave.  But then when I said December he looked confused and got quiet and I realized that he was throwing out an accusation.

The second time was a couple weeks ago.  I was waddling walking to my car with my friend to go eat lunch at  Olive Garden.  Some lady who works in our building was sitting in her car and talking on her phone - I don't know her but I already hated her because she walks around the atrium of our building like it's her track and field and gives dirty looks should you dare need to access the elevator and interrupt her imaginary atrium half-marathon. 

So anyway, that apparent mutual disdain being the extent of our relationship, she felt it appropriate to hang her head out her car window, point her finger, and yell, "You're having another Bayyyyy-beeeee!!!" 

And then I ate 10 bowls of pasta and delivered a 9 pound pasta baby who doesn't like milk but only eats lard like her mother and we all lived fat and happily ever after the end kthxbai. 

No, really, I ignored the shit out of her and then ate soup and salad and had a great lunch with my BFF.  I'd love to say that I made her feel like a real asshole by spouting out some really clever bitchy comment.  I'd love that so much.  But really I just forced myself to not care and move on because there isn't any scenario that makes me feel better about how I look or about how I know other people think I look.  I have lost 9 pounds and I'll lose more but for right now this is as good as it gets and I'm not going to deny that I do, in fact, look pretty adorably pregnant for a nonpregnant person.

I was going to try to film a reenactment of the parking lot incident but it didn't work out.  Sorry about that.   I really think it could've been magical but some things just aren't meant to be and life is unfair, etc.

At least Olivia wasn't sick?

Tuesday night, we got a call at 1:30 from Ainsley's doctor because they felt that she was not stable. We think she aspirated at some point and her right lung was almost completely collapsed (or something...I may be off on the terminology) plus her pneumonia was still there. Her oxygen saturations were low and she was struggling even on 100% oxygen. She is normally at room air, which is 21%.

After a rough night (or two), she is stable. She is on antibiotics and we are waiting on lung cultures. She is a little more alert now.  Wednesday she was heavily sedated and on morphine but her respirations and heart rate are high so we knew she was in pain or stressed. Or both. Her vent settings are very high to give her as much support as possible. 

Yesterday she was a bit more alert and calm, and was only sedated before her trach tie change.  When she gets really upset she quits breathing and has a really hard time recovering.

Once she is pneumonia-free she will have a nissen so that the whole aspiration business will never happen again.  Probably the week after the 4th of July.

I don't even know what to say except OMG.  And that this is all really awful to watch, and stressful, and lonely. 

You're going to think I'm making this up.

I started this post last week and never had a chance to publish.  So, here you go - a week later and I still feel like I have a stress hangover...

Tuesday night I was up sick all night.  Barfy sick.  I woke up just long enough to call off work and hand Olivia over to gramma and papa before I slept until 4 p.m.

Oh, yes.  And also?  I called and found out that Ainsley had pneumonia.

Thursday I felt decent enough to go back to work.  So I did.  And then after work I went to visit Ainsley.  While I was at the hospital, I got a text from Mark:

"Liv is having a seizure."

So then Olivia had a big ass febrile seizure and Mark called 911.  And instead of taking her to Children's, they insisted on taking her to the closest shit ass no idea how to deal with children ER despite our protests.

By the time I drove the 30 minutes from Children's to the ER to see Olivia, they were already arranging to have her transported.  To Children's.

AND THEN we spent two nights at the hospital for...a virus.  Olivia came home Saturday night happy and demanding to watch Toy Story.

BUT WAIT!  THERE'S MORE!  So then Mark went to visit Ainsley early this morning and while he was holding her he noticed that she was acting strange.  Her hand kept twitching and her thumb was clamped down and he couldn't move it.

Because...She was having a motherfucking seizure!

OH MY GOD YOU GUYS.  I'd love to write more but I am way busy hanging padding on every wall in my house so that I can commence necessary insane behavior.  I'd say send cookies, but I have 30 pounds to lose so send spanx I guess.

NICU: Now I Can Use-my-outside-voice!!!!!!!!!!!!!!!!

I am thoroughly amused by people who are loud in the NICU.  And by thoroughly amused I mean that I hate them.

I'm not sure if you knew this but in the NICU?  The Neonatal Intensive Care Unit?  The IC stands for Intensive Care.  As in, these babies are sick and shit so, ya know, be quiet you giant freaking idiot.

We get new neighbors all.the.time.  We've been NICU residents for 160 (!!!!) days which probably makes me the old crotchety librarian-type mom who gives you the evil eye over the frame of her horn rimmed glasses - or maybe I just wear a monocle, I don't know I haven't really thought it through.  It is also possible that I smell like mothballs.  AND, I used a new Essie nail polish that turned my nails yellow.  I'm not really sure if it helps this whole old/crotchety image but it can't hurt, right?

So anyway, as per usual, I am annoyed by the general public.

I sat and listened to the dad of a 1 pound preemie for a solid half an hour a few weeks ago.  "Open your eyes for daddy!  Come on, now, be a good girl and open your eyes!  You want to open your eyes for daddy, don't you?  Don't you?  Open em!  Come on!  Open your eyes pretty girl!  Hey!  Hey!  Open em!  Open those eyes for daddy!"  Etcetera for a million years until the baby is old enough to pierce her tongue and make out with a bad boy in rebellion and to properly tell her daddy to go fuck himself.

So anyway, I have my back to this guy and I'm just plotting his demise the entire time I'm holding my trying to sleep three month old (adjusted!) and then I finally turn around because I have got to see this guy.  I mean, I need a place to focus my aggression.  And all I see is four inches of boxer shorts bending down to talk to his one pound baby WHO IS WEARING GOGGLES.   Like this:

Ainsley, the day after she was born.
2lb 3oz.
You think she's opening her eyes under there?
You think she's rolling them in complete annoyance?



And for good measure...
Ainsley, 151 days after she was born.
8 pounds, 2 ounces.
Do you think she's plotting that guy's demise?  I bet she is.

 

I took pity on that guy, because I think that the NICU is very confusing.  As you're walking in the door, it just says NICU really big on the ceiling and so I guess you could get confused about what NICU means in relation to your sick ass baby who couldn't stay at a normal hospital and had to be transferred somewhere else...more...fun?  Yes.  Fun.  Everyone knows that tiny premature babies grow so much better when surrounded by noise and fun!  Plus also I'm just a really nice person which is why you all should aspire to be just like me. 

So we're still in the NICU which is so!much!fun! and we're going to be there...for a while.  There's lots of talk of home lately because Ainsley is doing pretty well on her vent.  The problem is that she is way too small for a home vent.  Like, 12 pounds is the minimum and "they are usually much bigger."  The guesstimate is another 2-3 months until she is big enough to switch over to a home vent.

Or.  Or. Or.  Maybe, in the time she is taking to get big enough for a home vent, her lungs will be strong enough to be supported by something other than a vent.  Or maybe not? We tried a trach collar the other day, which just blew moisturized air into her trach, and it was a big failure.  It's hard to see her struggle on a lower setting, because it's a reminder of just how very sick she is...that a ventilator is keeping her alive.
Oh, but this baby.  She smiles all the time, and grabs at toys, and loves to be held and talked to.   She gets down on the floor and does itty bitty baby pinup modeling physical therapy:

8 pounds, 6 ounces of NOMable NOMNOMNOMness.

Ainsley finally has a primary nurse, Marianne, and she is so sweet and loves Ainsley to pieces.  Please see the following as proof of the spoiling received from Marianne:

A crown for the throne of Miss Diva Lungs Knepper, Duchess of Tracheotomy
Bow in respect, but also: Purell Thoroughly.

I'm exhausted.  We're exhausted.  This is all very exhausting.  Looking down the way at another 3+ months of this feels impossible but I also can't believe that it's been 5 months already and here we are - we're doing it.   It's all going to be fiiiiiine.

You think you've got it rough?
At least you can breathe!
It's not all about you, mom.

Mostly, I just need to get Ainsley home so that we can turn her into a total weirdo.
Like her daddy.

--
One Year Ago:  Feeling the FET Funk
Two Years Ago: This Post Is Brought To You By Obligation
Three Years Ago:  I'm Embryoated

Just Relax

"Don't say no - I'm already in planning mode."

That's what my friend Andrea said when she first told me about the fundraiser event that she is helping to organize for us. Because she knew I'd say no.

I've been lucky enough to find myself surrounded with people who are very kind. We've received meals and gifts and messages and just so much support and sometimes I wonder what we did to earn such wonderful friends and how I can ever possibly thank them properly.

So I have been ordered to accept help and not feel douche-y and basically just, ya know, relax and shit. And I'm trying but I blame you guys if I end up pregnant from all this relaxing. HA!

Andrea has asked to post something about The Event on my blog. Here's what she has to say:

When you consider someone a friend - and something unimaginable happens to them - as friends we want to help.
We want to do SOMETHING.
And that is just what we are doing.
If you are interested in what you might be able to do for Jen, Mark, Olivia & Ainsley - come on over and see what we are up to.

Wakey Wakey, Brand New Trachey

Picture post.  Because that's all I have time for.  I'm busy right now watching Yo Gabba Gabba with Ms. Olivia "Never Stops Chatting" Knepper.

Last picture without a trach.

First picture with a trach.
The scratches on her cheek are from the tape that had to be removed and reapplied
to hold the cannula to her face.
No wonder she was completely pissed off.

Rough night the following day.  Laying on her left side to help open up her right lung.
Part of it was sticking together.
Up crying all night because she couldn't breathe even with a ventilator.

The next day.  A  much better day.
The little yellow earmuffs help keep sounds out.
Ms. Ainsley "My Way or I Refuse to Breathe" Knepper likes it quiet.

The lowdown right now is: REST AND GROW DAMMIT!  Ainsley has been mostly on room air - it is great that she doesn't require additional oxygen!  Her vent settings are okayish - they've been able to lower her respiratory rate, but the pressure going into her lungs (which is called PEEP if you care) is at 9, which is rather high.  I guess 5 is the PEEP equivalent of room air - it's the normal pressure when you just breathe and don't act like a premature drama queen.  She's been spitting up quite a bit lately so it's possible that she'll need the Nissen surgery afterall but we're waiting that out for now.  The big problem she's having is morphine withdrawals and hopefully that will pass in a day or two. 

I got to hold her for about 40 minutes last night, which was pretty much amazing.

Tonight is a rare Date Night, and so I'll get to talk to Mark for more than 5 minutes and maybe we will possibly discuss something other than what's for dinner, how Ainsley is, or how Olivia is.  Plus there will be beer so that's also exciting.