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April? Maybe?

It's been an eventful weekend and so I'll give you a quickie update.

Ainsley went back on Oxygen on the 21st, Vapotherm on the 23rd, and the ventilator on Thursday night, the 24th.

It was a constant struggle to breathe for her, and she wasn't even breathing properly on the vent. SO...she went to surgery on Friday, the 25th, to be intubated with a larger tube. It seems to have helped. That, and they found some nasty infection in her lungs that is now being treated.

The cultures are still growing, but we think she is aspirating her reflux. Which isn't really all that shocking and while a lung infection is a really big fucking deal for a preemie, at least we know now why her lungs are getting so much worse instead of so much better.

Today she has a GI consult. They are going to try to decide for sure if she is aspirating reflux, and if she is she will have ANOTHER surgical procedure called a nissen to help prevent reflux altogether and at that time she will have a g-tube placed.

They have her sedated, because she's an Old Hag in NICU terms and knows that the vent shouldn't be there and it stresses her out. Sometimes? She starts gagging on the tube then refuses to breathe and turns blue.

This kid cannot catch a break!

What?  Anna Wintour swears that blue is "in" for spring.
You people have no fashion sense.

In which I try to use you for your smarts.

Yesterday?  We got our first whiff of homespeak.  Ainsley is off of vapotherm.  See?

HAI!  I'm learning to breathe and eat, and I'm wide awake at 6 a.m.
Shouldn't you be doing something more productive than reading blogs?
Lazy whores.  All of you.

So here is where she is at with the whole going home checklist:

1. Off Vapotherm/Normal Breathing  : Donesky-ish!
2. Maintain Temperature in Open Air Crib : Donesky!
3. Eat From Bottle : Shitsky!
Eating is intimidating to me for several reasons, the biggest of them being her cleft palate.  She has a cleft soft palate, so there is essentially nothing between her mouth and her nasal cavity.  Add to that the whole Preemie Never Had A Bottle Yet thing just sounds like disaster to me.

And apparently, it sounds like a disaster to the doctor, too.  Because they were throwing out the idea of a g-tube.  Not yet, mind you.  It was more of a Just The Tip, Just To See What It Feels Like conversation.  Except, about a g-tube and not about penises and sex in case you weren't clear on that.  But, ya know...

Doctor: She can go home with an ng tube, but the g tube might be better, and she's an old lady now and we need to start thinking of ways to get her home.

Jennepper: ** shits pants yet tries to act cool**  Right...right...uh huh...right

So here's what I need (because I'm needy): I need to hear about your experiences with teaching an old hag NICU baby - she's been here 11.5 weeks - to eat from a bottle.  Bonus if your baby had a cleft palate...because you have to take a win where you can get one, right?  (Charlie Sheen?)  Or, even if it wasn't in the NICU, tell me about your experience with a cleft.

Don't blow smoke up my ass here.  I need to have a realistic idea of what we are in for.  I want tips and tricks and whatever.  I'm not against a g-tube, but I want to make sure that we are giving her a fair shot at bottle feeds before we get there.

Here's a picture of Olivia, who is a giant huge monstrous toddler who now says YOGURT instead of YOGIE and who will be attending Harvard in the fall to pursue her studies in everything Disney, with a minor in Tantrum Throwing.

BYE BYES!  BYE BYES!
BYE BYES GODDAMNITNOW!

--

One Year Ago:  Help Me Settle A Dispute
Two Years Ago:  I Think Someone Stole My Baby!
Three Years Ago:  Dear Tylenol

What's Ainsley doing? Winning! Duh!

Little girl in a big crib.
Like fat guy in a little coat, only smaller and less funny.

Day of Life: 71

My first full week of work went by in a total blur.  And the only thing that I know for sure is that I'm doing a million things right but I'm not doing any of them well.  Work...mom...wife...citizen...life in general...suck at them all.

(Unless you have anything to do with my employment status or the amount of my paycheck, in which case I am, in fact, doing a million things and I am totally rocking all of them.)

You know how sometimes?  There's a bunch of shit going on?  And you're all, fine.  I can handle this, but this is all.  I can't handle one more thing.  If one more thing happens?   I'm going to jump out the window/poke out my eye/pull out my hair/drink ten kegs of Christmas Ale.

It seems that I have added that One More Thing by going back to work and now I pretty much feel like I'm in a tailspin.  Get up, get ready, get Olivia ready, get to work, go to the hospital, go back to work, go home, go back to the hospital, go to bed.  It's been a week and I'm staring down the tunnel at next week and wondering where is the light?  Ya know? 

--

I had been trying to get up the nerve to talk to the charge nurse in the NICU about getting a primary nurse for Ainsley.  It's getting a bit old to hear, over and over, "well, she's doing * this * but I don't know her so I'm not sure if that's typical."  Which...OK.  I'm sure it's in the novel of notes in the computer but damn if it wouldn't be nice to have someone with her consistently who would just know.  Because I'm at work, being all worky (and kicking ass at everything in life, in general) and I'm not here. 

And nobody is here with her all the time who knows her.  Which is annoying but not really anyone's fault, either.  She's pretty much another baby in another isolette that needs fed and changed and can't really breathe.  Blah blah blah she's just little and needs to grow and basically we really just need to wait and see.

So I finally asked to talk to the charge nurse and apparently it's voluntary.  Being a primary, I mean.   The nurse has to want to do it, which makes sense.  And guess what else?  You need to ask.  I need to ask someone, "hey, wanna take care of my baby?  Since, you know, I can't and everything."

Here's what I'm getting at: I'm afraid of rejection.  Because if I ask someone to care for Ainsley, maybe a bit beyond the requirement of Don't Let Her Die, and they say no?  I don't know if my delicate psyche can take it.  I'm like one comment about my ass being fat away from confining myself to the house surrounded by Twix Bars and beer.  Lots of beer.

--

When they do rounds, they start off by saying the baby's day of life.  Today is Ainsley's 71st day of life.

Ainsley...is a bit of a grouch.  We've been trying to bring up Olivia's intolerance to milk and soy protein to the nurses, because Ainsley has had the same irritability and terrible diaper rash that plagued Olivia's first few months. 

(Oh, yes, and reflux.  Of course reflux.)

And everyone is all YAY FOR BREASTMILK!  But I think the breastmilk is making her ill because it is my frozen milk and I ate dairy.  So I'm all YAY FOR NEOCATE!  And finally finally!  We got someone to listen to us, and she will be on Neocate after my milk runs out in a few days.

4 pounds, 10 ounces: I'm little and wee! 
My lungs are for crying, not breathing.  Get over it.

Don't get me wrong: the cute greatly outweighs the grouchy.  I'm always shocked at how fast 4 or 5 hours can pass.  Time flies when you're holding an adorable baybee.

Due Date

At the end of January, the thing that kept me going was thinking, "surely, by the end of February, Ainsley will be home."  Because the canned answer around here about going home is, "right around their due date."  Not that I've ever asked.  I'm afraid to hear their answer.

Now I don't really know what to fool myself with to get through March.  Because I have no idea when this little drama nugget is going to come  home, but it sure doesn't feel like it's going to be any time soon.



Breathe normally?
No, thanks.  But I appreciate the offer.

 February 24 was my due date for Ainsley and Evelyn.  Actually, it was Olivia's due date, too, except two years earlier.  We all knew that I would never carry the girls to their due date.  We knew they'd be early, and we knew that we'd be in the NICU for some time. 

You expect me to come home in this crap weather?
Winter blows a fatty.  I think I'll wait for spring.

We are past our due date, now.  We've been here longer than I ever imagined if I'm being quite honest.  It seems like we're in a constant holding pattern.  First, it was waiting and watching the PDA.  And then the PDA was repaired and things seemed to look up.  She was breathing fast but not as fast as before, and her sats were great.*

But now, we are in this cul-de-sac of breathing drama that just seems endless.  The past few days, her sats are still OK, but she's working harder to get them there by breathing super fast.  I'm sitting in the NICU right now, watching her head bob up and down as she works for every breath.

I just told the nurses this morning: if she's here in June, they are going to have to get me an adult-sized isolette.




You'd breathe fast too if your mom was asking nurses for adult-sized isolettes.
Or if someone shaved random spots on your head in order to poke you with needles.
Get off my tiny back.

 I went back to work on Thursday.  My eight weeks of paid disability is up, and I could either burn my vacation days and then take unpaid time when Ainsley comes home, or I could go back to work and save my precious month of vacation for when Ainsley comes home.  So, back to work.  It's strange.  It's almost like nothing ever happened. 

If you didn't know what happened, you'd think that I was sitting at home for the past three months stuffing my face full of Taco Bell and getting fat and slovenly while watching sophisticated television.  (Keeping Up With The Kardashians?)  Which, honestly, isn't far off, sadly, and also I don't really care if the meat in a beef supreme chalupa isn't really beef because that shit tastes good.  I may not get to bring two babies home, but I do look like I'm having two food babies. **

Sometimes I like to cover my food babies with my real baby.
I wonder if I could cover my awful hairdo with a baby, too?
Or maybe one of those hats with the crocheted ball on top.
"Hello, volunteer lady.  Do you have a free hat that would cover an adult head?  No?
Well, you're useless."

All of her tests are normal.  We are back to the ever-frustrating, "well, she's just got to get bigger."  I suggested beef supreme chalupas, because they seem to work for me, but apparently they are not healthy for preemies and also cannot fit down an NG tube.  She weighs just under 4 pounds, 8 ounces.  Maybe when she hits 5 pounds we can revisit the chalupa suggestion.

I brought her some of her own clothes.
Looking fah-bulous, dahling.

The NICU, obviously, is the Neonatal Intensive Care Unit.  But some babies don't need as much care as others, so as your baby "gets better" it is moved to rooms with other babies who don't require as intensive care.  We've been down the hall for a while now - with a week revisit up the hall after the PDA ligation. 

But last week, we were moved to the intensive side for staffing reasons.  And also for a much-appreciated reminder of just how far Ainsley has come.  I almost forget sometimes. 

While I was there, a mom fresh from the delivery room came in to see her baby.  You're technically not supposed to know things about the other babies, but it's impossible since you're sardined in the room together.  As soon as her husband wheeled her in she started sobbing.  I'm not a hugger, but I've never wanted to hug someone so much in my whole life.  Because GOD if it isn't fucking hard having a baby in the NICU.  Unless it's happened to you, you just don't understand at all.



Well, she's the least dramatic baby in the intensive rooms.  So there's that!

Today, the nurse asked me about my baby B.  "How's she doing?" I've been waiting for Evelyn's autopsy for a long time.  (Captain Obvious, reporting for duty!)  First, the preliminary report was in...but it was lost.  But hey!  Buck up!  The full report will be done any day now!  Which, I guess any day now = in 3-4 weeks, because I haven't heard anything since the very beginning of February.  I asked about it today, but the doctor who is supposed to get it is out of town, and so I have to wait for her to get back...Tuesday.   So there's that to look forward to?  Or whatever. 

It would be nice (or whatever) to have some information about what happened so that we can stop wondering.


* Sats...Oxygen saturation level.  Should be mid-90's.  If it drops below mid-80's-ish, it's called a desat.  And desat = asshat.  Sats tell us if she is getting enough oxygen/breathing effectively.

**You can really go thoroughly fuck yourself if you want to leave me a rude comment over me complaining about being fat.  That's all I'm going to say about that.
--

One Year Ago:  Panera's Wi-Fi Loss Prevention Owes Olivia
Two Years Ago:  That's A Real Thing
Three Years Ago:  Hey, It's Cheaper Than Therapy

Two.

Two has had some pretty major significance in our lives this past year.  Two embryos.  Two babies in my belly.  Two girls.  Two days of steroid shots.  Thirty two weeks.  Now, just two daughters instead of three. 

And now?  I have a TWO YEAR OLD!



Yay!  I'm two and got two thousand presents!

We had a pretty huge birthday party for Olivia last weekend.  There were 20 kids and 20+ adults, and we ran out of food but had plenty of fun. 

The Invitations

The Cake of My Wet Dreams

It tasted as good as it looked!

The Decorations

Yeah...I didn't really decorate.

The Birthday Girl



Party at the Step2 Store.
KID HEAVEN!
(Yep, that's me, bottom right.  Pretending to be the birthday girl, since she couldn't be bothered to stop and open gifts.)



Some of the guests!



Everyone was running around and having so much fun!
There were a bunch of kids who were blurs in every photograph, including Olivia!



At Age Two, Olivia is soooooo cute and funny.  She talks all.the.time. and definitely has some strong opinions about how things should go.  Today, she went to the pantry to get a snack and said, "Open now, pweeze."  And sometimes, when she wants something really bad, her please is so intense that she makes fists and her little face turns red while she says please. 

Also?  When she says juice?  It sounds like she's saying douche.  "Douche, Pweeze."

When she needs a diaper change, she makes a nasty face and says "poopy stinky."  And then when you're done changing her diaper, she says, "all done poopies." 

She knows the entire alphabet, and I'm not positive but I think she can count to 10. 

When we pull into the garage, she throws both hands in the air and screams "HOME!"  When you ask her if she wants something, instead of saying yes, she says sure.  But it sounds like shore.  Shoooore!

We've gone to so many parties lately that she has started to ask for cake on a regular basis.  When we had her cake on the counter the night before her birthday party, she kept pointing at it and saying, "party time now!"

Cupcakes are acceptable in lieu of actual cake.

Any words ending in "ing" are said ending in "in."  Stackin, dancin, comin, runnin.

She talks about her plans or what happened during the day.  I told her we were going to my friend Michelle's house, and she said to me, "Aidan, Addison, bounce house."  I'm like, OK then.  You've got your evening planned!

Pretty nice little Monday with her BFF Addison and her boyfriend Aidan.

Loves:

Stacking

The Alphabet

Mickey Mouse/Minnie Mouse

Special Agent OSO

Word World

Olivia Books

Baths

Tickles

Hates:
Sharing
Diaper Changes
Food that isn't carbs

Our new couch does this to her hair.

She hasn't met her (very teeny tiny) little sister yet, but we show her pictures every day.  At night, when we go to bed and it's "Stoy time" we read her a Big Sister book, and she loves it.  I'm sure she will love Ainsley. 

I'm going back to work this week, and I can't imagine how it will be when I can't see her all the time like I do now.  I will miss her silly ass. 

I feel like I should be able to describe her better and write something better for her to celebrate the second year of her life. Something that she might read some day and know that she was the brightest part of all my days.  And I feel guilty that my mind is so scattered from trying to just function that I can't pull something together. 

But I spend all my free moments with her, running and playing and laughing and just generally being madly in love with my little Olivia.  I think that will suffice.

--

One Year Ago:  A Party Girl's First Party

Two Years Ago:  Olivia Audrey Knepper

Three Years Ago:  What's Going On With Me: In Photos

Biggest reason she needs to get off the vent.

Because every time someone asks me how Ainsley is doing, I have to say, "she's still on the vent, and they are trying to wean her off." 

It totally sounds like I'm saying, "she's still on the vent, and they are trying to wiener off."

And then I wonder...do they want to laugh because I kind of said wiener?  Should I point it out?  Or is this person not into wiener jokes...?

I can't handle this kind of stress.

Sneaky Woe Spiral

Monday was, like, one of the most ridiculous days ever.* I kept thinking over and over about this blog post on Hyperbole and a Half - The Sneaky Hate Spiral.  Naturally, I have experienced the Sneaky Hate Spiral...a lot.  I don't want to say daily, but close to that.

Anyway, on Monday I experienced a variant of The Sneaky Hate Spiral.  It was similar, but was more of a Sneaky Woe Spiral.

My boobs are hateful, angry bitches.
Mastitis + Thrush + Cracked Nipples + Reynauds = Hateful, angry bitches.

I called my OB and informed them that my boobs are hateful, angry bitches.  So they gave me an antibiotic and told me to suck it up. (Paraphrasing here, slightly.)

Monday morning, Ainsley had surgery.  Heart surgery.  A minor surgery, as far as heart surgeries go, but still.  Surgery.  So it was a stressful morning. 

Right after her PDA Ligation on Monday.
Probably having some really trippy morphine dreams.

Wednesday, two days after her surgery.
Probably having dreams about her upcoming Sumo Wrestling match.

I don't know about you, but looking at this puffy face really reminds me of something...

Hey, hey, hey!  It's Big Fat Steroid Face!

The antibiotic that I got for mastitis got rid of my fever, but did nothing to actually get rid of the infection. My boobs hurt so bad that I couldn't even stand up straight.  I called my OB to let him know that the antibiotic didn't work and to see if I could get something else.   

Oh my hell.  Apparently being allergic to penicillin and having mastitis has the potential to turn into a really big production.  Because my OB was calling and telling me that, since the one antibiotic I tried didn't work?  I needed to go get a PIC line put in to have some sort of superhuman bacteria killer shot directly toward my heart.  Or something slightly less dramatic but still.  How is it possible that there is no other antibiotic in the whole entire world that I can try before I need a PIC antibiotics?

And guess what I did?  I cried.  I bitched.  I complained.  I acted like Olivia when she wants to put her hands in the toilet and I won't let her.   I got all mixed up in the Sneaky Woe Spiral and the PICC talk was the impetus of my descent into complete and utter self-pity woe and despair.  My baby can be in the NICU for forty five days, and have heart surgery, but you want to give me a PIC line?  Well, that I just cannot handle, kind sir.

* le sigh *

So I called a different doctor.   And got a different prescription.  And got some ice cream.  And when I woke up in the morning I felt so much better, like, you know how you feel when you don't think about cutting your right boob off with a dull knife all day? 

I felt that good.

But now it's Friday night, and I'm hanging out in the NICU with one pissed off little neonate.  They tried to wean her off the vent overnight, and she did pretty well for a while.  But then she decided that, meh, breathing is stupid.  So they had to up the vent settings.  She is just miserable over this tube - gagging, writhing, trying to cry...it's pretty awful to watch. 

They are going to try to extubate in the morning.  I'm not going to count on anything.  Maybe I'll be pleasantly surprised when I come in tomorrow.  We miss being able to hold her!

*Actually, I started this post on Monday.  Then on Tuesday I crossed out Monday and wrote Yesterday.  Then I forgot about it until Thursday but was too lazy to care.  Then I finished it today.**

**FACT: I rule at blogging.

So far, so good.

Ainsley did very well in surgery. She's back in the NICU resting and enjoying her morphine.

Fingers crossed for a boring recovery!