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!

Patent Ductus Arteriosis

Ainsley has this. Every baby has this, actually, but it usually heals shortly after they are born. But since she is a drama queen was early, hers isn't healing.  Everyone is pretty sure that's why she really isn't making any progress.  She breathes way too fast and doesn't get enough oxygen without help from vapotherm.

So, she's going to have surgery.

I'm really nervous for her.  She's so little.  But I'm so glad that we are finally, finally doing something to help her progress.  She started out kicking so much ass, and things have just stayed status quo for a few weeks now.  You can tell it is work for her to breathe.  They say it will be a terrible few days, and then it will be better for her.  I think about them cutting her to get at her tiny little heart and...ugh.  It just has to be OK, ya know?

I don't mean to sell her short.  Ainsley is really an impressive tiny human.  She's nearly doubled her birth weight.   They've increased her feeds several times, and she tolerates them all perfectly.  She is so NOMable, it's borderline insanity. 

She's gone from this:

2 pounds, 3 ounces.
That's Mark's hand.
Her future's so bright, she's gotta wear shades.

To this:

Must stretch, in preparation of hefting around those adorable chins.

No, mom!  This is my bad side!

Stop trying to put that giant ass paci in my  mouth.
I'm looking at you, Nurse.

Oh, you know.  Just chillin before my surgery tomorrow.

--

One Year Ago:  Shucky Darn?
Two Years Ago:  36 Weeks: Just the Tip
Three Years Ago:Fun With Drug Paraphernalia

Pump, pump, grump.

Oh hey!  I'm not sure you knew that I was moonlighting as a dairy cow.  Did you?  Well, I was.   As in: Not Anymore The End.

I should rename this post Titty Quitter 2.0.

I tried.  Oh...did I try.  Pumpity pump pump; pumpity pump pump.  Up through the night to make the milk.  Moo.  Etc.  I have a freezer full of milk to prove it.  I have a $70/month bill for a hospital grade titty sucker to prove it.  I have all kinds of other proof, too, as follows:

Mastitis
Thrush
Cracked Nipples
Raynaud's of the Nipple (Seriously.)
Explodey Head

So basically?  I quit.  I can treat all of this and it may or may not come back.  But you know what?  Chicken Butt.  HA!  Also, fuck pumping.  I am clearly lactionally inept.  Neosure it is!

I'm off to stick my breasts into the freezer and then once they are numb I am going to find a drug dealer who can give me lots and lots of drugs because OH MY GOD MILK, I GET IT, YOU'RE THERE, STOP PLZ.  (Kthxbai.)

I can't wait to see what ridiculous thing happens next.  Maybe I'll lose an eye and have to wear a pirate patch?  Seems plausible, what, with my desire to poke my eye out and my lack of self control exhibited most recently by eating an entire container of Nutella in two days.

--

One Year Ago: She Walks!
Two Years Ago:  Next Pregnancy Will Be Jimmy Dean's Love Child
Three Years Ago: Oh Miranda, I Relate

My insurance needs to cover retail therapy.

That, and Spanx.

This NICU Business is exhausting.

Bah.

I got all smug with my good little itty bitty baybee updates - which you pretty much know nothing about since I suck at blogging - but it turns out that the smallest bump in the road is like a giant crater when I'm constantly operating at the brink of Mah Shit: About to be Lost.

Today I lost my damned mind (again) while visiting Ainsley and so I've felt like crap all day and have been completely unable to rally from the horror that is Mah Ugly Cryface.  Ainsley had to go back on oxygen, and then back on vapotherm (which is like CPAP, for people who know about such things).  And the realization that she was on vapotherm shook me up.  I saw the machine and recognized it from her first few days in the NICU.  Then they came to round on her about 10 minutes later, and AS ALWAYS they dodged all my questions and gave me their canned answers of "she's just little, we'll have to wait and see," and "you can't take her home until her due date."

No shit I can't take her home.  She's smaller than a kitten and can't breathe and is so skinny she has no butt cheeks.  But thanks for treating me like an idiot when I try to ask you questions!  Good thing the nurse is here to be awesome and comforting after you leave!  I'm sure my crying spell makes you think I'm not just an idiot, but also a crazy asshole idiot.  I mean it could be worse...I could be a crazy asshole white trash idiot, which seems to be pretty common around here if we're being quite honest.

Hey! Here's a picture!



Ainsley to Me: What's the big deal, drama queen?  I'll breathe when I damn well feel like it.
Me to Ainsley: You should just be glad that I don't use double negatives.  You'll appreciate that some day.

 Generally, the NICU isn't as awful as I anticipated.  Mostly because Ainsley usually does so well that it just seems like a waiting game.  Which I can handle.   But today?  Today I feel like I just...can't.  I left after two hours because I just couldn't get myself together. 

The 40 minute drive (one way!); the lack of sleep; the ridiculous guilt I feel over leaving Olivia every day;  the entire life that somehow keeps demanding my attention even though I have a baby in the NICU; the baby that we lost...all of it.  All this worry.  It's just exhausting to me today.

Tomorrow has to be better.

--

One Year Ago:  Formula Question
Two Years Ago:  How Should My Tombstone Read?
Three Years Ago:  Babies Bawl at Benihana

Anklerexia.

I was at the doctor right before I was admitted to the hospital due to my Uterus of Doom and Other Unforseen Tragedy, Etc. So I had to weigh myself. And I weighed...a lot. I gained a solid 50 pounds and officially outweighed my husband at 31 weeks and while I had no stretch marks*, all signs were pointing to Very Puffy Up In Here, Word to Your Mother.

My legs and ankles were the worst.  The were YOUGE, you guys.  I mean, really.  Even my slippers were tight, and socks?  Psh.  Socks left marks around my ankles that made me look like I was kidnapped and bound.  My toes had fat rolls.  I'm not even kidding.

Left ( taken in the hospital): Thankle!  Thankle!  Thankle!  Also?  Need Pedicure!  Need Pedicure!  Need pedicure!
Right: 3 Weeks postpartum...practically anklerexic.  So sexually excited by my own normal sized ankles that I can't resist taking a picture of my ankle while looking at a picture of my ankle online.  It's like postpartum porn.

I'd like to say that the rest of me looked totally normal, but I actually looked quite a bit like a blowfish.  Especially after the steroid shots.  Even my lips were swollen, Angelina Jolie-style.  Except that I looked disgusting and not at all like Angelina Jolie.  As solid proof that I have no boundaries, here's photographic evidence of said swelling:

Left: After first steroid shot.
Right: After second steroid shot.
Pride: None, apparently.

I am Picasa Inept, so I couldn't get the collage to work with three pictures, but here was my face when I was 20-ish weeks pregnant.  So you can see the comparison, and so you know that I don't always look like the white female Fat Albert/Angelina Jolie hybrid:

Sweet, innocent Jen and Mark.  Pre, preeclampsia/Hey Hey Hey Chins

At this point, I've lost 20 pounds.  All from my chins and ankles.  However, I've gained another 20 IN MY BEWBS OH MY HELL. 





Five days after baybee eviction.
Missing at least 7 chins.
Please excuse the cry face.  I was having problems controlling mah emotions.

 Oh, by the way, did you notice that baybee?  I know, you have to look close or you could miss her. That is miss Ainsley, getting some serious Kangaroo Care.

I've got lots of requests for an Ainsley update and I SWEARZ I am going to update on her (and on the NICU experience in general) soon.  I've got lots to tell you about her.  All good.  She's pretty Badass in the NICU.  Seriously...she's great and beautiful and has all kinds of attitude and opinions about what should be happening in her isolette. She's breathing on her own and gaining weight and just generally being an impressive tiny human.

*That is, until my stomach started to deflate. And now there are stretch marks on my hips and a few little fuckers on my lower stomach. And I won't even get started on my bewbs and the damage done by ALL THIS MILK OH MY GOD.

--

One Year Ago:  Dirty Thirty
Two Years Ago: And I shall call him: Dr. Handlebar Mustache
Three Years Ago:  Are We Planning to Have Kids?

Evelyn Cecille

Evelyn Cecille Knepper

December 29, 2010

8:07 p.m.

3 Pounds, 2 Ounces

15 Inches

Evelyn was the baby that nobody worried about.  She was always bigger, she was always stronger, she always looked perfectly healthy.  It breaks my heart a little that we spent all our time worrying about her sister when maybe she was the one who needed help all along. 

At our nonstress test, the day before we lost Evelyn, she was very active and she was kicking like crazy.  Everyone thought it was a good thing, but now I wonder if it was the beginning of the very bad thing.  I hate that thought but it's there, bothering me at night.  Bothering me all the time. 

It's been just over a week since she was born, and I have cried for her every day.  Always when I'm alone.  The grief catches me when I'm alone without distraction...in the shower, right after I wake up or right before I fall asleep, in the car, when I walk past the nursery and the door is open.  It's not the good kind of cry that gives relief.  It's the kind of cry that makes me feel like I'm wound too tight and coming undone at the same time.

There aren't many things that give me comfort about Evelyn's birth or situation (or whatever you call it when a baby is born asleep).  There aren't any things that really give me comfort when it comes to Evelyn; that's probably the wrong word.  I sometimes like to cling to the fact that I knew her best.  She was (is!) so, so loved by so many people.  But I'm the only one that knew her.  I loved her and I felt her move and I laughed as she kicked like crazy and then her sister started to kick like crazy.  Like she was teasing her already.  So many people love her but besides Ainsley?  I knew her best. 

We don't know what happened to Evelyn.  I don't even know if it would help to have "answers."  It is so weird to use the word Autopsy in relation to our lives...but there will be one.  To help Ainsley.  We need to know what happened to Evelyn so that we can make sure it doesn't happen to Ainsley, too, since they are identical twins and shared so much.  Maybe Evelyn will save Ainsley's life again.  I wish we could have saved hers, too.

A group of my friends got together and made a donation to Now I Lay Me Down to Sleep, in Evelyn's name.  We got a donation card in the mail, with this quote:

"There is no foot too small that it cannot leave an imprint on this world."

That couldn't be more true.

In which I almost get someone kicked out of the NICU.

It's been a week since Evelyn and Ainsley were born. There have been a few bad days, a few good days, and a few good days with bad moments. Overall, I think we are doing well. Or as well as we can, which, what else can you do?
Actually, I know what else you can do. You can watch this video and then look me in the eye and tell me you didn't smile.



Tuesday was a bad day.

We waited until the afternoon to go see Ainsley.  We got there at around 1 and got to see her for a few minutes.  It was great because a couple friends stopped by to see her and also gave us delicious cupcakes and a whole bunch of beer.

About a half hour later, a tech showed up to take a head ultrasound.  Which was fine.   I had no desire to stay for that, because my itty bitty doesn't like anyone touching her unless they intend to hold her.  And I don't like to see her cry.

So I went to pump, and Mark came with me.  This is when the horror started.  The horror being: First Postpartum Poop.  I know this is out of character for me?  But I'm going to totally spare you the details, except to say that IT DID NOT GO WELL.

About an hour later (because Postpartum Poop: SERIOUSLY, IT DID NOT GO WELL), we went back to the NICU to see Ainsley again.  Mark took the cupcakes and beer to the car and so I was alone.  I asked the nurse for the daily update, and I can't remember what else she said, but the update included, "she's really pale."

Now...this was just an unfortunate choice of words.  Evelyn was really pale.  That was actually the thing that my OB pointed out about her when we talked about what possibly went wrong.  He said he didn't see anything unusual when he examined her, except that she looked really pale.

Just as I was getting this update, alone in the NICU, ANOTHER tech with another machine came in to do another test on Ainsley.  And I had been there over and hour and had barely seen her, and we only had a babysitter for another hour. 

So I did the sensible thing: I lost my shit.

I lost my shit so badly that I went running from the NICU with snot running down to my chin (for I am an ugly, ugly cryer) and locked myself in the restroom while I had a real chest-heaving woe-is-me type cry, complete with groaning and awful faces.  It was an award winning performance.

I left the restroom when I thought I had it together.  But then some serious white trash asked me when my baby was due as soon as I opened the restroom door, and I started crying again.  I just kept walking toward the NICU and pretended not to hear. 

Wouldn't you know it?  The lady and her daughter (?) followed me right into the NICU. 

She: Oh!  You already had a baby! 
Me: * sob * Yep
She: What did you have?
Me: * sob sob sob* a girl
She: What did you name her?
Me: I'm sorry, I just don't feel like talking right now. * sob wipe snot off boob sob *
She: Wow, you're a real bitch!

IN THE NICU!!!  As in, they have a baby IN THE NICU AND CALLED ME A BITCH!  They followed me all the way back, and kept going after I went to Ainsley's room.

You guys?  I admit it.  I'm a bitch.  Like, a really big one.  I'm not an overly nice person and I am bitchy pretty much all the time.  But this time?  This day?  Not at all.  I was bawling, no exaggeration.  I have no fight left in me right now.  I was totally nice.  And...who sees someone bawling their eyes out and thinks that's an appropriate time to ask me when I'm due and then drill me with questions about my NICU baby?  You'd think of anyone, someone else with a baby in the NICU would understand.

Then the nurses heard me telling Mark what happened and went to find them and then asked if I wanted to call security.  No, I did not.  I wanted to go home and take my percocet and drink beer.  And if I'm being quite honest, a cupcake.  Percocet, cupcake, beer, the end.

And I seriously could not get my shit together.  I cried for about three hours that night.  It was very serious.  Mark almost drowned in the mucous from my nose because I ran out of tissues but not snot.  How does that happen?  Where does all this snot come from? 

Asshole snot. 

(Well...not asshole snot.  I'm calling snot an asshole.)

(Never mind.)

Anyway.  That was my first bad NICU day.  I'm sure it won't be my last. 

But then today?   Today was a good day.

Ainsley is a little NICU trooper.  She's breathing on her own.  She's slowly gaining weight.  They've increased her feedings every day and is digesting them with no problem.  She will be off the bilirubin lights on Friday or Saturday.  She will have her PICC line removed Friday or Saturday.

Every doctor and nurse says she's feisty.  That, or that she has attitude.  But she does love to be held.  You wouldn't believe how much we love her.

--

One Year Ago:  Ghosts of New Years Past
Two Years Ago:  Jennepper's New Year's Rockin Eve
Three Years Ago:  Goodbye 2007

Everything was fine. Until it wasn't.

I don't even know where to begin to tell this story. The ending sucks, and who likes to read a story when you know that the ending sucks? But I feel like it should be written, because it's Evelyn's story, and it's Ainsley's story, and so I'm going to get it out there and someday hope that I can come back and read it without feeling like my insides are being torn apart.  I'm literally going to word vomit it all over.  It won't be funny and if you don't want to read it then I don't really blame you.

Tuesday, we had an ultrasound. Hog Baybee - Evelyn - was looking perfect, as usual. Itty Bitty Baybee - Ainsley - hadn't grown in two weeks. That, combined with my ridiculous blood pressure and protein-filled urine bought us a C-Section. 

I got my first steroid shot Monday night, and it is best to wait 48 hours from the first shot to deliver the babies.  So we were scheduled for our C-Section Thursday morning at 9.

We were constantly monitored.  The babies heart rates were perfect and my blood pressure was high but under control.  It was just a waiting game at that point - rest, relax, and be sliced from hip to hip.  No biggie.

Mark settled into the hospital with me Wednesday so we could spend the night hanging out before the babies came.  It felt like a little adventure.  We had the laptop and we watched movies.  We were actually watching Step Brothers when Everything Went Terribly Wrong.

Right around the Catalina Wine Mixer part of Step Brothers, Evelyn popped off the heart monitor.  Not a big deal, since both girls moved around so much, they'd have to reposition the monitors every hour or so to keep track of the heartbeats.

The nurse tried for about 20 minutes to find Evelyn before she let another nurse try.  "Fresh hands and ears."  The other nurse tried for another 20 minutes.  "Let's get a doppler, we can hear so much better and once we find her with that it will be easier to get the monitor back on."

Doppler = my heartbeat and Ainsley's heartbeat.

"Alright, let's do an ultrasound."

This is right about the point where I couldn't look at Mark.  I didn't want to be alarmist but...really?  It never took this long before.  5-10 minutes?  Sure.  My babies were movers and shakers and we'd often just get movement sounds until they settled in to rest.  But this was getting to be almost an hour at this point.

One doctor tried the ultrasound and couldn't find anything.  She called another doctor.  I couldn't breathe.  The other doctor sounded stressed, "Tell me what I'm looking at here.  Transverse and breech?  What should I be looking at?"

Our nurse started to pat my leg.  I started to cry uncontrollably.  It was quiet.  They asked for Dr. Davis.  I couldn't look at anyone and couldn't breathe.  Dr. Davis came - the same doctor who delivered my Olivia two years ago - and tried the ultrasound one last time.  "I can't find the heartbeat on Baby A.  I'm so, so sorry." 

One of the other doctors gave me a hug and was crying too.  They paged my doctor, Dr. Stewart, and I said I just needed time alone.  I felt Ainsley kick.  I'd never been so scared in my entire life.

We had a few minutes to call our families to let them know that we'd be having our C-Section right away.  Only 12 hours away from the C-Section that was planned back when everything was fine and when we were excited to meet our two girls.

I was so puffy, it took forever to get my new IV in.  I was so upset that I couldn't follow simple directions and people had to start saying things to me multiple times, even grabbing my arm and leading me around.  All I could hear was roaring in my ears and every time someone talked to me I could see their lips move but couldn't hear the words.  The medication for the spinal made me nauseated and I spent about 15 minutes groaning with my face in a barf bag.

Mark came in after my spinal was done, and they let me have my arms free so that I could hold Mark's hand.  We cried.  It was as awful as you'd imagine.

Ainsley was born first.  They held her up over the sheet and she looked totally pissed off.  And she looked just like Olivia when she was born. 

A little bit of blood dripped onto the drape and so we were distracted when they held Evelyn up.  They had to tell us to look.  She was bigger but looked just like her sister.  Except pale.  She was really pale.  She didn't look pissed off.  She looked perfectly peaceful.

Mark went to watch Ainsley be cleaned and weighed.  He took her picture.  He doesn't really remember what they said.  She cried a little.

I could see the nurse with Evelyn.  She was putting a pink polka dot gown on her.  She swaddled her and put her in a tiny carrier.

Both our parents were in recovery when we got there.  We held Evelyn.  She was perfect.  She looked like she was asleep - I'm not sure what I thought a stillborn baby would look like, but she looked alive and asleep. 

Evelyn was beautiful.  A photographer from Now I Lay Me Down To Sleep came to take photos of her.  It was the most horrible experience.  We did it because I would regret it forever if I didn't, but it was heartbreaking.  Our first and last pictures with our daughter.  The photographer was kind and respectful. 

We made arrangements.  Discussed funeral homes.  Autopsies.  We got a memory box.  Like we'd ever forget.

We saw Ainsley briefly before she was sent to Children's NICU.  She was so small. 

We were scared.

We kept Evelyn with us all night.  I couldn't hold her anymore after a certain point because the more I held her the more I worried I wouldn't be able to let her go.

Mark took our parents to see Ainsley.  I couldn't go because I was still hooked up to my catheter and my blood pressure was insanely high.  The official report: small, but doing well.  A fighter, but we already knew that.

Now, Ainsley is six days old.  She's getting stronger.  She's small and perfectly beautiful.  We love her so much.  I will write more about her later.