Skunkoween!

Here's the little stinker, getting ready to go on the amazing neighborhood scavenger hunt this afternoon.

And here's the rear view, heading out for trick or treating earlier tonight.

All night Sarah kept saying, "We're wild animals that eat CANDY!" and whenever people would joke about her spraying she'd tell them, "Well, I'm not a real skunk." It was pretty cute.

At the hospital, the nurses dressed Jane in her costume. Apparently they took pictures, so next time I'm down I'll take pictures of the pictures.

In awesome news, my mom was able to come up and visit and got to hold Jane for the first time! She was nervous, and Jane was pretty twitchy, but she said it was still wonderful. I'm so bummed I wasn't there for it.

Let's see. In technical news, Jane's oxygen was reasonably good today, but her CO2 went back up to 70% which kinda sucks. They dropped her rate on the vent to 16 -- RT Richard seems to be winning the argument about how to treat her, his logic being that when the vent breathes for Jane it's actually making more work for her since her body will naturally fight against the artificial effort. We'll see where this strategy gets us.

Tom's calling the hospital right now. Report: 53% and sleeping. This evening's nurse thinks she's working a little hard, but isn't sure since she hasn't had Jane since she was really little. But she's resting well after being awake quite a lot this afternoon. Hmm. Guess she's tolerating the wean; a little challenge is good. But don't you be pulling any baby tricks tonight, kiddo. Or no treats for you!

Hovercraft

Tom took the hospital shift while I spent the ENTIRE DAY making Sarah's costume. I just finished fifteen minutes ago. Granted, we did go out to dinner while S was at friends' (thank you Bill and Cathi!), but otherwise, I spent the day pricking my fingers and inhaling stray strands of faux fur. Intrigued? Don't you worry, I'll post a photo tomorrow of the finished masterpiece.

Anyway. Baby news. So, she didn't have a great day today. Breathing really hard, super fidgety all morning, oxygen up pretty high (68% or so) and rotten blood gas (CO2 at 75%, which is sucky indeed). You know how you can tell it's a good day at the ICN when you're pretty much ignored by everyone? Well, Janey was the subject of lots of conversations and the medical types spent a good bit of time at her bedside, trying to figure out what was up.

Awesome RT Richard, the ICN's Man in Black, convinced the attending (who, by the way, was very decent about acknowledging his mistake in pushing for the nitric wean earlier in the week) to leave Jane's rate alone and bump the pressure setting back up to 11, where it was a few days ago. They did another blood gas in the afternoon, and her CO2 shot right down to 50-something. (Tom, Richard and Awesome Nurse Donna exchanged high fives when they read the numbers. Hee.) When we called in tonight at 9, Jane was resting well and her oxygen had gone down to 54%.

Oh, and they did a chest x-ray (which she did NOT enjoy -- Richard described keeping her still as being like "wrestling a bobcat"), which showed an overinflated lobe that's being a pain. It is actually working really well, so well that the rest of the lung is underperforming. Another thing to keep an eye on. Add it to the list.

Oh, and Dr. Brusque stopped by to do another eye exam (because he was around? for the hell of it? because he thinks Jane's too cute to ignore? the reason wasn't clear), and he saw no change again.

My mom's coming up to visit Jane tomorrow and Sarah's totally wrecking everything by having a decidedly inconvenient cough. The missed photo op! Tragedy! Now I'm going to have to set up a totally fake Halloween when Sarah's better just to satisfy you people and your need for cute kid pictures. The things I do for you invisible readers. I tell you.

Water Baby

All right, let's make this quick, people. I've got a Halloween costume to make and a day and a half to do it. I gotta knock this post out and get back to handstitching in front of Project Runway pronto.

ANYWAY. Cute baby in the bath. Photos by Angela. Ready? GO.

Ahhhh.

New plan in the works. In brief, they're going to keep turning down her rate (the number of breaths the vent makes her take) until the rate is off and she's breathing on her own except for pressure support. They brought it down from 20 to 18 today, and will probably give her a day to get used to it before they mess with it again. And they're going to get her nitric back to 1 (it's at 2 today) and then leave it alone for like a week. THANK YOU.

I had a long, interesting conversation with Awesome RT Richard today who explained all about all this crazy respiratory stuff. I wish I'd recorded it. The takeaway? Her underlying lung disease isn't really the main thing anymore. The machines themselves are now the issue, and what the team is doing is training her to get over the crutch they've provided for so long.

There! Now I'm going to dig my thimble out from the couch cushions and get back to work. Talk amongst yourselves...

A View Of A Room With A View

Here's a slightly better shot of the new pad. We have a bookcase! In fact, and totally unsurprisingly, the first thing I did when I was helping move Jane yesterday was arrange our books in their shiny new home.

The view. Not stunning, but a lot better than the facade of the building we stared at for three months. And I can keep an eye on the car! Bonus!

Ironically, after they spending all kinds of time getting Jane used to being out of her greenhouse, keeping the roof up, etc, they immediately constructed a tent for her to camp out in. It's a baby fort!

Snuggly-wuggly in her pup tent.

Jane's gotten to the full-on puppy-adorable stage. She finally has that wonderful, solid baby heft to her when she's curled up like a comma on my chest. That warm weightiness that seeps into your core and leaves you drowsy and content just from holding her for a little while. There are a lot of cranky bastards out there who could benefit from a little baby-snoogling. If I could only figure out how to bottle the sense of peace Jane radiates I'd be the next Nobel laureate.

Movin' On Up

Bring on the U-Haul! It's moving day!

I actually got a little nostalgic saying goodbye to bedspace 28. I blame the post-partum hormones.

The Jane train. Awesome Nurse Jane helmed the crib, Awesome Baby Jane supervised, Awesome RT Kim was in charge of the nitric machine, and that's St. Joel at the back, cracking jokes and steering the vent around the flotsam of the nursery. I was in charge of taking crappy pictures and moving non-essential stuff out of the way.

Check out the digs!

"Compact loft. All mod cons. Mtn vu. Prvt."

Before all the moving excitement, Jane had her four hundred and thirty-seventh head ultrasound. All seems well, just a teensy bit of swelling left over from the hydrocephalus (remember? her brain? how it all got bleedy and then swelly? yeah, that again. only, not so much anymore). Awesome Nurse Jane thought they'd probably schedule another ultrasound in, like, six months. Seriously. That's how not a big deal it is anymore.

Oh, and her eye exam yesterday went really well. Dr. Brusque (who nearly re-earned his name -- no thank yous, no pet names for Jane, nada) thought the Stage 3 had gone back down to Stage 2, so we're off the bi-weekly exam schedule and back to weekly. Excellent!

Except for that whole nitric wean debacle, things are looking pretty good. Her oxygen needs went up slightly today (she was in the 50s all day, and they boosted her pressure support back up again), and Tom's understandably worried that it could be the beginning of another tough time, but I'm tossing salt over my shoulder and hoping otherwise.

Cheese

Jane had her first professional photo session yesterday. A volunteer professional photographer came to the ICN to take pictures of the babies. Miss J was awake but would NOT open her eyes. Still, they got some cute shots. Here are a few of my favorites:

Today was the big nitric wean! And it went... not so well. She went from 48% oxygen to (you can guess right? You know what's coming, just like I did, and I even mentioned it during rounds, which I just barely made it to, and they brushed off my concerns a little, but I wasn't going to ask them not to do it anyway) 100% in about two minutes. Where she hung out for an hour before they gave up and turned the nitric back on. Within ten minutes she was back at 48%. Kid does NOT like having her drugs taken away. Remember the morphine experiment? She did come off the morphine eventually, but that first try was not what you'd call a success. Why would it be any different this time? Still, worth the attempt, and I suspect the second go will have a different flavor.

There was renewed talk of a move today, too. There's a space opening up on the tile side in a quieter area. It has a window, and a VIEW. Yes! Sounds like they may do that until she comes off the nitric and we can sneak over to the carpet before anyone realizes what we're up to.

Why I Let My Three Year Old Play With My iPhone

It's a Very Special Guest Photographer Blog!

Our resident bohochic baby stepped behind the lens today. Well, behind the phone. (I haven't been able to dress this kid in over a year; this outfit is all her. Her fashionista gene came from the same place my sister's did -- god knows it skipped me entirely.) 

Not bad, eh? Believe it or not, I had a few good ones to choose from. Sarah's been snatching the camera out of my hands since she was two. She always comes up with something interesting, and sometimes, as above, something beautiful.

And last night Super Stealth Nurse Angela snapped a pic for us: PROOF that Jane got down to 35 on the oxygen! She didn't stay down there for long, but would you look at that? Would you have even believed it possible two months ago?

Apples From The Family Tree

We were hanging out with our girl this afternoon when I realized another piece of the puzzle that is Jane had fallen into place: she sleeps exactly the way I do.

I wake up most mornings with my head on the mattress and my arms on the pillow. Sarah does it, too. What other traits are going to emerge in these two? Will they have Tom's hand-eye coordination, my magpie tendency to pick up shiny bits of trivia? Will they have silver tongues like their dad? Or dirt under their fingernails like their mom?

It's interesting how perspective so entirely colors perception. People who only know Tom and me mostly see Tom in Jane (and my frowns). I see my dad. Will she have his sense of fairness? His weakness for cute European cars that spend more time in the shop than on the road?

And what will be uniquely her? What will appear in these girls that defines their essences?

I can't wait to find out.

In the meantime, Jane continues to kick ICN ass. They're starting to wean her pressure settings, and her nitric is down to TWO. And moving day is coming. The moment she's off the nitric -- and I mean that literally -- they're whisking her off to her glamorous new carpeted digs. If it weren't for that machine they'd have moved her today. The train of Jane's gear was a little too long for the RT's comfort, and I can't blame her. Too many turns, too many tubes, too many opportunities for things to go dreadfully wrong. But it's coming, invisible readers. It's coming soon.

Diva, Part Two

Jane spent some quality time chilling in her new furniture today.

She was a little skeptical at first.

But the simultaneous attentions of Awesome Nurses Donna (milk tube), Kristy (belly rub) and Meg (head massage by the future doppelganger of my three-year-old niece Molly) changed her mind pretty quickly. Apparently a team of three nurses will just suffice to meet the demands of a three month old prima donna.

BEAR ATTACK!

Aaaaand she's out.

It was a great day medically, too. Jane is now, officially down to TWENTY on the rate on her vent and THREE on the nitric. Sing it! She's doing so well with all this weaning that Donna may have said something about (ahem) THANKSGIVING. Not going to say anything beyond that, god knows something'll come along to screw it up if I do, but there's a chance the timeline may be revised thanks to kiddo's awesome efforts.

No More Mr. Not-Nice Guy

In all the excitement around Jane's zero day, I forgot to tell you that yesterday she had another eye exam and Dr. Brusque was... personable. He said hello to me. He called Jane "sugar bear". He said thank you to everyone. He ANSWERED MY QUESTIONS. I was so flustered I forgot half of what I wanted to know.

Anyway, Jane's right eye has, ahem, "extra retinal neovascularization or vessels that are growing into the vitreous toward the examiner" in less than half of one clock-hour in Zone 2 (if you picture a clock face, the funky blood vessels are growing right around where the 11 would be, but not on the outside perimeter of the eye -- they're a little further in, but not in the iris). There was no progression between Monday and yesterday, which is good news, so he's going to continue the twice-weekly exams until things either resolve on their own or get worse.

Let's see. Today, Day 1 of Jane's forward-aging, they dropped the rate on her vent from 30 to 25 and dropped her nitric to 4, which kinda rocks given the whole extubating when she gets to 20 on the rate and is off the nitric thing.

Umm, what else? Awesome Nurse Donna said she was going to put Jane in a bouncy chair today! Like ya do with babies! And they're only going to weigh her every other day instead of daily because they're so afraid of another accidental extubation. Which reminds me, last night Awesome Nurse Allie caught Jane with her hand, still with mitt on, IN HER MOUTH GRABBING THE TUBE. For real.

So, while Sarah and I spent a glamorous day at home cleaning out the pantry cupboard and grocery shopping, Jane was scaring the bejeezus out of every last person at the ICN. Our girl's got skillz!

Adjusted Age ZERO

DUE DATE, invisible readers!

Jane is zero today! Have I explained the term "adjusted age"? Pretty simple really. You just subtract the number of weeks Jane was premature from her chronological age. Today Jane is 13 weeks old, and she was 13 weeks premature, so today is her zero day. Before that she was however many gestational weeks she would have been; yesterday she was 39 weeks 6 days. Get it?

Let's take a quick look back, shall we?

Look at that tube.  It was twice the size of her arm.

From one pound, fourteen and a half ounces of tiny fragility to six pounds, twelve ounces of adorable chub and outrageous strength in thirteen unforgettable weeks.

The Real Diva

Okay, so this is hiLARious. Are you ready? Jane, our funny little tiny preemie Jane, decided to go ahead and extubate herself today. HAHAHAHA. Good lord.

Here's what happened. Jane was a little twitchy this morning lying on her stomach. Gassy, couldn't get comfortable. So she was wiggling around a lot during rounds. About five minutes after everyone finished doing rounds on her, just after she was flipped on her back to try to get her comfy again, her nurse looked down and was all, "Oh, I think Jane just extubated herself." One of the other nurses popped around the corner to grab everyone (there were like 16 people present during rounds today -- it's quite the traveling circus) while I flagged down an RT, and before you could blink she was bagged and back on oxygen. The cool thing (seriously, not being snarky here) was that during the whole time that they were placing the IV to administer the paralytic to reintubate JANE WAS BREATHING ON HER OWN. For like fifteen minutes! Granted, she was on 100% oxygen, but she was doing all the physical breathing her ownself. It was hard work, but she did it. I was pretty proud. Reintubating her was completely unremarkable and she was plugged back in.  The whole thing took maybe twenty minutes.

And then I went to the pumping room for a nice quiet heart attack.

The attending stopped by later in the afternoon, and agreed that it was great that she'd been able to do all that breathing, and mentioned that he'd been kind of wanting to see how she'd do if she were extubated. Not exactly the scenario he'd envisioned, but it got him the info. She can breathe, it's hard work, but she oxygenated nicely and her heart never faltered. Okay, then.

Hey, Jane. How 'bout we leave the extubations to the pros next time, mkay?

Other Scary Words

It started out to be such a nice day, too. We discovered that my new-to-us car has satellite radio which WORKS. And I discovered that in addition to the awesome 80s station that lets me imagine I'm driving in a John Hughes movie, there is a BOOK channel. Audio books on the radio! Brilliant! Even better? The HARLEQUIN ROMANCE SHOW was on. No, really! To quote the great Patton Oswalt (if you don't know him, get yourself to YouTube NOW), what god did I please? Oh man, was that just the best thing ever to stumble across. I could recite along with the actor, that's how perfectly hilariously predictable the writing was. ("He crushed her to him, and brought his lips down on hers. His mouth was like a wild animal..." Ew!) AND it was sunny out, AND I got a great parking spot. Should have been such a good day.

But no. Jane had her umpteenth eye exam this afternoon and we learned she has progressed in her ROP. (Remember that boring post not too long ago about retinopathy of prematurity? No? Get out your notes.)

From her first exam, Jane had Stage 1 (that is to say, very mild) ROP. A few weeks later, we hit Stage 2 (still not so bad). Two weeks ago it seemed to go back to Stage 1 (yay!). Then last week it was Stage 2 again (oh), and now today we've got mild Stage 3 in one eye. Crap.

Dr. Brusque, without looking up from Jane's eyes at the end of the exam, announced to the room at large: "Looks like mild Stage 3 in one eye, no plus disease, non-threshold.  I'll be back Wednesday or Thursday." Wha? In American, that more or less means (any opthalmologists should stop reading here to avoid apoplexy) Jane's eyes are getting worse, but don't yet require surgical intervention and there's still a chance they could get better without it. And that he'll be back Wednesday or Thursday. ROP can progress quite rapidly, but they can halt it with LASER SURGERY. Which is amazing, but yikes. I wonder, if Jane does need it, do you think they could do a quick zip zip on my eyes, too? I'll save my glasses for Jane. She's gonna need 'em.

To add insult to freakout, Dr. Brusque was over two hours late for the exam so I didn't even get a chance to hold her today. I would say something very frank now about how I felt about that, but I have nieces and nephews reading this and I don't want to get in trouble with their parents.

Moving along. In non-scary news, the ventilator settings keep scooting down, and Jane's been putting up with it quite nicely. There's a whole new vocabulary to go with the nice new vent that I will NOT burden you with at the moment (you're welcome). For now, all you need to know is that one of the settings is the rate (the number of breaths the vent takes for Jane), which was at 40 when she started this new phase, and needs to get down to 20 to be extubated. She's at 34 today -- they're pretty much bumping her down by two points a day. A little quick math here... She could hit their numbers in seven days. Could. Hear that, Fates? C-O-U-L-D.

So, yeah. Not my favorite day lately, but far from the worst. I'm just going to hold Jane all day tomorrow and say disparaging things about Dr. Brusque to the nurses. Pththt!

Something New

See Jane.

See Jane play!

While Sarah and I spent some quality time with the FIERCE DINOSAURS at the nearby science museum, Jane got her Boppy on.

Oh, what is that?  Don't make me...

I'm serious... I don't wanna...

Ooh, cute baby!

Hands!

This was Tom's favorite.  "Babies of the ICN!  Follow me to freedom!"

Obligatory adorable close-up.

She was similarly cute and active and flirtatious during rounds this morning, watching everyone and generally charming the pants off the docs.  So much so that when the attending stopped by to chat this afternoon, she said something about Jane trending toward... EXTUBATION, possibly within the next four weeks. Now, take this with a big old grain of salt (and then throw it over your shoulder while knocking wood, etc) because this particular doctor is always saying very encouraging things.  At the very least, she seems to think Jane will not be coming home on a vent (please god), and said during rounds that if it weren't for the tube, Jane looks like a baby who should be on her way home.

Oh, these words.  These exciting, scary words!

How Cookies Crumble

Oh, people.  I am just not cut out to be a diva.  I don't think I was alone with Awesome Nurse Karen for more than two minutes today when she said something like, "So, I heard you said no to Jane being moved."  I protested, and explained, and, yes, apologized.  And that's when she played the trump card to beat all cards: "You know, developmentally it'll be best for Jane back there."

I crumbled like dry feta cheese.  I put up exactly no fight.  It was a pathetic showing for a diva.

But I did get to see the space (Tom was solo at the hospital yesterday when he got the quick tour), and it isn't horrible.  A little close, but at least there are windows, and I do have an ICN friend back in there somewhere.  Oh, fine.

So, in Jane news, she had a pretty rough night last night.  I'm pretty sure I told you all that she's been on morphine for quite a while (they have to sedate babies on oscillators because if they're too active it's EXTREMELY problematic for the tubing).  Well, they've been slooooowly weaning her by letting her outgrow her dosage, and Tuesday they started the wean in earnest, and yesterday they took her off altogether.  And yesterday evening she went into withdrawal. Fidgety, uncomfortable, diarrhea, inability to sleep... pretty much the infant version of the beginning of Trainspotting. So she's back on her drugs, but at a super-low dosage so they can wean a little more slowly. When will the docs finally learn?  They get all excited about her good progress and just push their luck.  NOT COOL.

Poor kid was so pooped from being up for so long last night (until 3 am!) that she slept through pretty much the entire day.  But, amazingly, she did great otherwise.  Her oxygen stayed pretty good (between 45-55% today, and no higher than 60% last night), and that includes dealing with a couple weans on the vent and nitric.  She's a toughie, our little morphine addict.

Divalicious

Someone is digging the new accommodations.

And Donna's Devious Plan is totally working.  In fact, Jane might very well have moved over to the carpet side tonight except, well, I sort of balked.  There was a bedspace they were talking about moving her to, but it's in an semi-separate section of the nursery and I couldn't stomach the thought of being so isolated.  If nothing else comes up in the next couple of days we'll take it for sure, but I'm really hoping we can find a spot in one of the other rooms.  To be honest, having other people around (nurses and parents both) has been a major reason why I haven't lost my mind these last three months.

So, I got my diva on.  All those people who we'd tricked into liking us now know how demanding we are.  Just wait, I'm going to start complaining about the lighting next.  Maybe I'll insist Jane's outfits match the bedding.

Ugh.  I'm going to feel like such a jackass at the hospital tomorrow.  I'll be apologizing to people left and right for being so ridiculous.  If I weren't so lazy, I'd bring cookies.  This is how lame I am -- the only treats the staff at the ICN has gotten from my family came from my SISTER, who lives two and a half hours away and has two kids and a job and plenty of her own crap to deal with. Obviously she needs to make another visit soon, so I can stay in the nurses' good graces.

Cribbage

Invisible readers, two consecutive awesome days!  In a row!

I showed up, and Jane's Awesome Primary Nurse Donna was back from a two-week vacation and was she psyched to see our girl.  Jane was wide awake and being super cute and practicing smiles and happy faces.

I got some pumping out of the way and we snoogled for a couple hours.

While Jane caught some z's, Donna got ready some fun new stuff.  First, her very first tub bath!

It took two changes of water to get her clean (someone was so relaxed she pooped copiously. Twice.), but we got rid of the funky neck cheese at last!  And then (oh, man, you're just not even going to believe it), she got dried off and bundled up in her Brand! New! Crib!

Peeps, she has TOYS in there.  And her tunes.  And, like, baby stuff.  Because all of a sudden she's a great big baby girl.  She even has a mirror in there, which she kept checking out just like someone else we know, but I won't name names (Tom).  

Now, here's the most awesome part of the move to the crib.  Ready?  It's too big for the bed space.  Yes!  You're all out there thinking, "In what way could this possibly be good news?" Welp, I'm going to tell you in what way.  The nursery has two main divisions: the tile side (where everyone starts out, and where the critical kids and most of the kids still on ventilators have to stay) and the carpet side (where the older and more stable kids get to be).  The carpet side has night!  They dim the lights so the babies can develop their circadian rhythms.  And there's, like, carpet!  And bureaus for stuff!  And, I don't know, there may be a spa in there somewhere, too.  Anyway, I've been dying to get Jane over there, but she couldn't go on the oscillator, but now...  Oh, invisible friends, now it's a whole new ball game.  Donna's excellently devious plan is to make Jane's bed space completely awkward to work with so that the Powers That Be are FORCED to move her over to the carpet.  Brilliant!

Oh, oh, AND she now weighs THREE KILOS (6 lbs, 11 oz), AND she's out of the newborn diapers and into size 1s.  She doesn't fit into preemie clothes anymore!

It was totally a good day.