Popcorn and Discharge

Mature NICU Parent: Oh! What a great reason to gather together and watch the videos we must watch prior to going home.

Me: EW! I do not want to watch a video about popcorn and discharge.

And I swear, there is a Popcorn and Discharge Video Watch Party like every 3 weeks.  I have about 4 pictures of this sign with various backgrounds and dates.  This patriotic Popcorn and Discharge sign is my favorite.

Redbook Magazine: The Truth About Trying

The second I sent the email in which I agreed to tape a video of myself talking about sperm, I immediately wanted to punch myself in the face.  Not because I'm embarrassed to talk about sperm or my reproductive debacles or whatever, but because the sound of my own voice is simply horrifying. 

Redbook Magazine has  a whole Truth About Trying campaign on their website now, and there are all kinds of videos up there.  Including mine. 

I'm not begging for compliments when I say that I hope you don't hate me after watching it.  I broke up with a few blogs after watching "vlogs" of the author. 

I was going to try to link up to the blogs I wrote for Infertility Diaries but I can't because there are no longer any tags that lead to them. But hey!  Go there and read anyway, because there's good stuff over there from some seriously good bloggers.

Cheating tonight.

I'm feeling a bit under the weather today so I'm going to cheat and picture post tonight.

Ainsley is on day 3 of a portable vent. Maybe I'll talk more about it later, but the point is: YAYSKEEEE!

Olivia is almost three and has figured out that she can earn things she wants. Namely, candy or chocolate dipped granola bars. Last night she was doing the dishes so I would give her candy.

Also, I keep slippers at the hospital because I like to make myself obnoxiously comfortable.


I'm going to put on loose pants and crash with my blanket and some juice. For your viewing pleasure...

What's wrong with Ainsley?

Someone, who apologized for being nosy, asked me to talk about what is actually wrong with Ainsley.  Which, LOLsies!  I talk about my vagina on the Internet and so talking about what is wrong with my kid is like singing the alphabet or reciting the Pledge of Allegiance.  Why yes!  It would be my pleasure to impress you with the magnitude of my attention whoring!

In short: Ainsley's lungs are fucked.    They should get better someday but right now?  Fucked.  So if you'd like to skip the rest of this post so that you can avoid reading information from a business-y person trying to talk medical-y, you can stop now. 

Ad nauseam: I will do my best to explain it all and make Ainsley's respiratory therapists proud.

Ainsley was an identical twin.  Unfortunately, her sister Evelyn was stillborn and Ainsley was a tiny 2 pounds 3 ounces when born at 32 weeks.  Ainsley was a constant worry for us for most of my pregnancy because she wasn't growing well at all. 

Ainsley's main issue is Bronchopulmonary Dysplasia (BPD).  It is caused by ongoing mechanical ventilation.  The breathing assistance she needed/needs to keep her alive is also causing inflammation and scarring in her lungs, which make it impossible to breathe on her own.  I read somewhere that BPD is a new disease that has developed from the technologies that keep these premature babies with underdeveloped lungs alive.  Not too along ago, Ainsley would have died.

So Ainsley's first five months of life were spent trying to get her off of mechanical ventilation.  She would be on vapotherm (which is like CPAP, kind of), she would get off that and do fine for a few days, then she would struggle and go back on vapotherm, and then she would really struggle and have to be intubated so that she could be on a ventilator. 

Miserable, much?

In May, the recommendation was a tracheostomy, so that she could be on the ventilator full-time without being intubated.  This was a big life changer for Ainsley!!!  With a tube constantly in her mouth, she was not able to move around or really develop normally.  The trach would allow her to use her hands and move around and not constantly gag on the tube in her throat. 

This trach is bananas.
b-a-n-a-n-a-s

Ainsley has pretty bad BPD, from what I gather.  The good thing about kids is that they grow new lung tissue until age 7 or 8...or something.  A while.  So Ainsley is getting the best nutrition possible through her g-tube so that she can grow enough new and healthy lung tissue to make up for all of the damaged lung tissue caused by the machine that she needs to keep her tiny ass alive.

See how fun this is?

Ainsley has a g-tube because, when she was smaller, she had to use all of her energy just to breathe.  Sucking on a bottle for a BPD baby can just be too much work, and Ainsley has the added issue of a cleft (soft) palate.  That made it even harder for her to try to suck on a bottle.  She is 10 (!!!!!) months old and has taken virtually nothing by mouth.  All of her food is run through the g-tube which goes directly to her stomach.  Another thing for her to overcome - an oral aversion!

Hello, kitty!
Found cute g-tube covers.
Critical illness is not an excuse to be unfabulous.

But really, when my kid can't breathe?  Eating by mouth falls kind of low on my List of Worries.  We will figure that out for her someday.  And, also, Ainsley's trach goes into her trachea.  Not her esophagus.  She could eat if she was so inclined.  However, she wants none of that  bullshit.

Ainsley also has Pulmonary Hypertension.  Which I don't understand as well as the BPD.  It's high blood pressure in her lungs, and it makes it harder for her lungs to move oxygen, and if it got out of control would cause damage to her heart because of the added work of pumping blood through her body.  That's the extent of my understanding.  (Not true: it's bad news.  I understand that, too.)  The hope is that, as her lungs get better, this will improve, too. 

Other weird things have happened - Ainsley had a stroke at some point, which was discovered by accident on an unrelated follow-up.  Right now, she seems to be developing normally and hopefully that will continue.  She had some seizures a while back, and she is on medication to keep it from happening again.  So there will be lots of neurology visits in her future. 

So, that's pretty much it.  That is "what's wrong" with Ainsley.  I'd like to say that I think the things that are right with Ainsley greatly outweigh the things that are wrong, and without sounding like a cheeseball: we are so happy every day that she is doing as well as she is after everything she has gone through.

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One Year Ago:  Shocking new information about twin pregnancies!
Two Years Ago: Jennepper's must have baybee gifts for 2009
Three Years Ago:  Another reason to marry Target
Four Years Ago: Jabba's still in da hawse
 

Tired doesn't describe it.

I'm exhausted.

Not like, tired but should feel better after a good night's rest, tired. Like, so tired that I can't imagine staying awake for the next half hour, tired.

My brain is running slow and my eyes are squinty. Part of the squint eye is caused by my staggering 40 pound weight gain in the past year and a glad, but a solid 25 percent can be blamed on The Tired.

Coffee doesn't help which sucks because coffee always helps and if I can't rely on coffee then what can I rely on in this world? What, I ask you?

I was just sitting here thinking about how I should write something about something but I couldn't think of anything. And I am too tired to walk downstairs to get my computer so I'm writing this on my phone, which is usually annoying but I'm too tired to be annoyed and plus I don't really have to move any part of my body except my sausage-like index finger.

The good news is that I'm watching Dexter and there are no commercials that require me to lift a sausagey finger to fast forward. The bad news is that my feet are cold and I'm too tired to get socks.

At the very least, I need to convince Mark to give me a piggy back ride up to bed because I definitely don't have the energy to walk up the stairs. And even if I do I still have to adjust my pillows and pull up my covers and OH MY GOD it just all sounds like so much work.

Anyway, I'm exhausted.

Monday Perspective

Ainsley, A couple days old.   One of her leads takes up the entire left side of her chest.

And Ainsley, back in September at about 9 months old.  One lead can't even contain a portion of her side-boob. 

Ainsley, yesterday.  And for the record: No, you may not nibble on this baby.  Because I am a baby nibble hog and am not willing to share the NOMs.

Filling Cavities on the Reg.

At the beginning of October, we had an audit at work. Which was awesome and fun and at the end of the week we all went out to lunch to celebrate its end.  The restaurant was across the street from a Famous-Around-Akron sign that caused the following conversation to happen:

Auditor: Wow, that dentist is torturing that patient!

Me: No, he's totally doin' her!

Your teeth will be clean,
But everything else will be dirty.

There are just so many possibilities here involving tools in mouths and filling of cavities and opening up...it is enough to drive an immature person insane.  Plus it is just so pretentious of that doctor to leave his coat on?  Prick (novocaine?). 
 
I had to have my wisdom teeth removed when I was in high school. Since I'm a huge giant baby I had general anesthetic. My mom was with me in the recovery room where I was apparently letting giant loud farts while still asleep.  I don't really know what that has to do with this sign but it's my most important dentist story to date.  Don't you love that we can share things like this?  I do.

I went to a new dentist who calls himself Matt (oh, aren't we casual!) and who basically told me that my teeth are totally jacked.  Jacked up jaw, I call it.  I have severe grinding damage and I had to get a $300 night guard.  Which is fine, except I wake up gagging on it in the middle of the night like some kind of freak.  And I know that Mark is not excited for me to add another odd behavior to me sleep repertoire which also includes odd conversations, full body movement, and sometimes hitting. 

I have this really amazing bug radar - if there is a spider within a 10 mile radius?  I will find it and promptly freak the fuck out.  The last time I went to see Dr. Matt (I called him that and he said, no, Just Matt.  OK, Just Matt) I immediately spotted a bug on the equipment at the end of the chair and asked him to kill the motherfucker.  He was all, sure!  Let me just fit this dorky mouth guard for you and then I will kill that little bug.  And then he proceeded to shove this thing in my mouth while my legs hung off of the side of the chair because HI, I'M AFRAID OF WEETLE TEENY BUGS, DR. JUST MATT! 

He found it to be funny.  Most people usually laugh at me when I try to be serious probably because I'm an idiot.

So anyway, I can't decide if I'd rather see Dr. Just Matt the spider enthusiast, or Dr. Do You While I Drill You at Valley Dental.  I'm guessing that my history of farting would hurt my chances for leaving with clean teeth and dirty everything else.

Just a sample of the difficult choices I am facing every day.

NaBloPoMo

I just signed up for the November National Blog Posting Month - to write a blog post every day for the month of November.  This is hilarious, as I wrote one post in October.  Unless you count a picture post with a caption as a post, in which case I posted twice.

I'm under a lot of stress (captain obvious reporting for duty, sans cape) but it's really kind of covert stress.  Like, I'm OK if all I have to do is get Liv with a sitter, go to work, go to the NICU (or come home and be with Olivia), make dinner, sleep, and repeat.  I appear to be totally normal but in my mind I am totally crazypants.

8 p.m. on my way home from the NICU after working all day, via text:

Mark: We will need milk for tomorrow morning.

Jen: OK

Jen's Brain: WTF I CANNOT HANDLE ALL OF THIS MILK RESPONSIBILITY OMG!!!!!!!!!!!!

Usually I try to handle my stress by shoving obsene amounts of food into my face.  Or, diarrhea, if I am just super lucky.  Or even avoidance (hello Pinterest!).  And then all of a sudden out of nowhere comes the Incredible Hulk-like Crazypants response to something totally insignificant.

In my brain:  NO I ABSOLUTELY CANNOT BE BOTHERED TO FAST FORWARD THROUGH THIS COMMERCIAL THE GODDAMNED DVR SHOULD BE ABLE TO DO IT WTF IS WRONG WITH TECHNOLOGY???????!!!!!!!!!!!

In reality:  Sits with blank stare on face; contemplates the next carb to shove in mouth; continues to watch commercials due to pure laziness. 

So anyway, I'm thinking that a commitment to a daily blog post is a really fantastic idea.  I'm glad you agree.

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.
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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