T-Day

Speed posting to get to the good stuff!

Jane, loaded up on the baby warmer and ready to roll.

Rolling...

And here she is!

Holy cats, those cheeks! Could you just die? Who knew so much chunky goodness was lurking under all the tape and plastic?

Jane's surgery went swimmingly. No issues at all -- her oxygen was fine, her heart was great, her trachea was unremarkable. They return babies directly to the ICN instead of going to an intermediate recovery room, and as soon as she got back she started to wake up. Surprised everyone, frankly. They got her sedated right up, and they'll keep her that way for a while. It'll be a week before she's allowed to move around much so that the stoma (oh, lord, a whole new vocabulary) can heal.

Enough! Look at our girl! She's so darn cute that when the tape was taken off her eyes after the surgery was completed (Awesome Nurse Angela went down to OR and got to watch the whole thing, and yes I was jealous -- don't you know me by now?) even the anesthesiologist went "Aw!"

I can't wait to see her realize that her mouth is free! That no one is going to push her hands away from her face! That a whole new world is about to open up for her.

FINALLY. Also, T-Day Minus 1

Hallelujah! I made it back to the hospital! Sarah got in some serious Daddy time today, and I got to snoogle with Jane for the first time in TEN DAYS. That's just all kinds of wrong. Ten days. Never again, invisible readers. Heck, no.

But look who was waiting for me, freshly laundered and bearing a bizarre resemblance to the Big Boy mascot.

As cute as our girl is, what really made me squee today was her footwear:

Come ON. Those are just too much. And check out the knee dimple!

She spent, what, two and a half hours in my lap? And was asleep for maybe 30 minutes. Not in a row, naturally. Why, you ask? It wasn't the tubes, or hunger, or other normal baby stuff. It was because every time someone came into the room, Janey just had to know what was going on. She is her father. It's a little freaky.

In the interests of relieving both my bladder and numb posterior, we dumped Jane back in bed. Awesome Nurse Laura (her first time with Jane) set up one of the ICN's mobiles for her for a bit. 

As soon as the music went on -- it was coming from behind her head -- she kept trying to flip over to see what the hell was making that weird sound. The weird sound being birds chirping. It didn't seem wise to let her extubate herself less than 24 hours before the (oh boy) trach, so the mobile came down.

Speaking of the trach, 1 pm eastern, people. Prepare to get your vibes on.

Newsflash: Near Tragedy Averted!

No, no, not Jane. She's fine. She had another quiet day at the ICN, getting her snuggles and baths with the nurses.

I, on the other hand, nearly had a heart attack this morning when I discovered that our fridge is dead. D-E-A-D. Dying, actually, but it won't be long before it gives out altogether.

"Oh," I can hear you thinking. "Bummer. Um, not exactly a tragedy."

Not a tragedy? Look at what I nearly lost!

Two months' worth of milk. TWO MONTHS. When I discovered the thawed milk on the door I completely lost my... mind. I ran upstairs and basically threw Tom into the car and shrieked, "FREEZER. NOW." And bless him, he came through (with some help from our excellent friend Jennifer and her wonder truck). We already had a half-size freezer chest -- long since filled, I hasten to add -- but now we've got the Mac Daddy, holds half a steer, deep freeze of the gods. Thanks to the sheer volume of what I'd stuffed the fridge freezer with, the majority of the milk stayed frozen, so the transfer was made without incident and I almost passed out from relief. I even mapped out the contents of the new freezer, complete with a list of which months are in which compartments. There's nothing like a near miss to get me motivated. (Why is the expression "near miss"? I mean, I did miss. Shouldn't it be "near hit"?)

To help you understand my emotional trauma, a brief photo essay for your consideration.

The pump room at the hospital. Two months' worth of milk represents approximately 100 hours strapped to one of those machines.

My lovely assistant will now demonstrate:

(Yes, she really does do that when she goes to the pumping room with me. I did NOT set up that shot. And yes, she will hate me when she's thirteen and learns I put that photo online for all the world [well, for all forty-two of you] to see.)

Here's another taste of what I go through five or six times a day. (At least my brother-in-law will find that hilarious. The rest of you are starting to question my taste level.)

Near tragedy, my friends. Near tragedy indeed.

Another Special Guest Star (Or Two)

I was able to run into the ICN this afternoon on our way home from Thanksgiving, and walked in on Jane getting some love from Awesome Nurse Kristy.

They adore each other! They're adorable! Seeing that makes me feel pretty good about the world. Kristy ranks high among the reasons that I don't worry about Jane when I can't be there. 

I'm not going to lie. Having had a total of maybe twenty minutes with Jane in the last week (while Tom and Sarah had to wait in the idling car) has been hard. Sarah's pink eye is almost better, but she's sick again (or still, hard to say) with a hacking cough and mild fever, so I'm not certain of being able to spend much time down at the hospital this weekend. Plus, um, SNOWSTORM tonight. Oh, honestly.

But thanks to my ridiculously thoughtful sister I was at least able to make up for showing up shamefully empty-handed yesterday (except for Jane's laundry -- I'm not entirely without domestic skillz). Treats for the day AND night shifts, courtesy of the South Shore's finest first grade teacher, and one of the best moms I know. That's right, everyone, I'm saying it publicly: I look up to my little sister and hope that someday I can be even half the person she is. She's the center to our wacky family, and we are damned lucky to have her.

(Oh, she's going to hate that. But it could have been SO much worse, Jenny. SO much worse.)

Thankful

All right, invisible readers. Time to get my grateful on.

Things I'm thankful for, the short list:

This building and everyone in it.


This table and everyone around it.


This kid and every day she's given us.


And you. Yes, YOU, specifically. You've been a huge support to me and Tom and Sarah and Jane. We may never have spoken in real life, we may never have met in the intertubes, but you are a meaningful part of my life and I'm grateful to you.

Darn family gatherings have gotten me all mushy. I need to go watch Die Hard or something.

Peace out, peeps. Thanks.

While We Wait

Another Tom day at the ICN. The trach's been scheduled for Monday. Awesome Nurse Donna told Tom that the former Dr. Brusque said that Jane's out of the woods with the ROP. Apparently her eyes have matured enough that the damage won't get any worse. I have no idea if it can/will get better, but for now I'll happily take not getting worse.

Oh, oh, and get this! Dr. Brusque missed me! What is going on in this wacky ICN world? Turns out that I'm the rare parent who sticks around to watch every exam. Okay, maybe that's not such a surprise. Anyway, I think it's a sign we've been there too long: the curt opthalmologist is asking after me. Curt! That could totally be his new name. Except he isn't anymore. Any thoughts, invisible readers? Speak up!

You know, if Dr. Brusque can recognize me after ten or so visits, you'd think the security guard who has seen me most mornings for FOUR MONTHS would stop asking me the nature of my visit. Not that I find it annoying or anything.

Anyway. While we wait for Monday, here are a few more of the many faces of Jane.

We're still able to get some adorable photos:

But then we start to head in a grumpier direction:

Quickly followed by full-on crankypants:

I can't wait for her to get that thing out of her mouth. The awesome developmental specialist has been trying to see Jane awake for weeks now. She finally got to see her in action today, and was pleased to see how well Jane tracks visually, but thought she was unhappy. "Big tube," Donna was quick to point out.

Monday can't come too soon.

Waiting Game

Jane's stable. I'm stuck here. Tom couldn't go down today. Aaaaand, that's about it.

Let's see what I can eke out for you. Jane's rate on the vent is back down to 20 -- where it was when they got her off the oscillator way back in the middle of October. Her oxygen has been in the low 40s and high 30s even with these vent weans and the reduced steroids. She's just really doing well these days. Fussy, but strong.

Oh, and she had another eye exam and it SEEMS that there's possibly been some improvement there. I supposed at some point it won't be unreasonable to start asking how her eyesight's being affected by all this, but as with everything we have to wait to see how her eyes are when they finally get stable. WAIT WAIT WAIT.

I'm whiling away the hours not conferring with the flowers but making a mobile for Jane's crib. I've got a couple more critters to make, and need to clean these up a bit, but it's not going to keep me occupied for long.

I don't really know what to do with myself -- I've managed to wash just about everything in the house over the last three days, I can't dump Sarah at school (bad mama for even thinking it), and we only have one car at the moment (totes my fault) so my errand-running is limited to what I can manage within walking distance. Jane's not the only fidgety one in the family these days.

Pulling The Trigger

Deed's done, peeps. Tom went down today and told the doc to go ahead and schedule the trach.

Just in time, too. Jane nearly rolled over today. For real! Our girl's adjusted age is just a month old and she's already trying to roll over. Am I worried she's going to be climbing the bookcases once she's home? You betcha.

I showed this picture to Miss Goopy Eyes. "Janey's so cute in her heart jammies! I think she misses me." Twang! That would be my heartstrings being yanked.

Awesome Nurse Karen having a little conversation with Janey. She's totally listening, too. I love that.

Daddyroo!

I suppose we'll hear tomorrow about when the surgery's going to happen. Hoo boy.

We're not feeling anxious about the decision, though. Jane's so obviously ready for this. She's trying to move freely, she's gagging on the tube, she's sucking constantly. Yeah, it's time.

Whammied

You're just not going to believe this, invisible readers. It's just too... perfect. We couldn't go down to the hospital today for a big ol' family visit because SOMEONE HAS PINK EYE. That's right, my adorable little darling daughter, the one who has been begging to see her sister and assuring me that her cough is TOTALLY ALL BETTER MOM, woke up this morning with two eyes so crusty and gross I may have gagged a little while mopping them up.

I mean, honestly. Pink eye? It had to be pink eye? That is just some nasty stuff right there.

So instead of spending the day cooing over sibling bonding, I chased Sarah with warm wash cloths and hand sanitizer in between scalding loads of laundry.

But, um, it was sunny out! So that was good. And Tom made some very tasty ribs and corn bread for dinner. And, er...

Oh, well.

Here. A little taste of what I was hoping for today, from a month ago. Just swap out Sarah's black eye then for pink eye now and it's perfect!

Awesome Nurse Tanya reported that Jane had a very nice day without us. Another good blood gas, oxygen in the high 30s and low 40s when she was sleeping, and she was planning on some play time after her afternoon nap.

Oh, and by the way: FOUR MONTHS OLD, YO!

Oh, Yeah. The Baby

It was a Tom day with our girl. Let's see. She had a good blood gas this morning, which is always a nice thing to see. She was doing really well with her oxygen, too -- in the mid 30s -- until Tom realized that no one had told Awesome Nurse Tanya about the new parameters for the saturation levels Jane needs to maintain. So, her Os wound up in the mid-40s instead. Not bad, considering it's her first day on the decreased levels of steroids as well as a couple vent adjustments.

She's pretty fidgety these days, even before the decreased steroids. I think she just needs to move around more, do more. She's got to be bored, wouldn't you think? I mean, the binky's great and all (Tom spent an hour doing nothing but keeping her pacifier in place in the vain hope it would settle her down enough to nap), but there's more to life.

Look at that face. I defy you to look at that face and not feel your ovaries twinge. Even the three guys reading this felt it.

All right, peeps. Cross those fingers that Sarah's not carrying any plague or hamthrax or other nasty critters in her system. She hasn't been able to visit her sister in ages thanks to a lingering cough, but it seems better. Ish. Intermittent, anyway, which I was told is acceptable if she's wearing a mask. So we're hoping for a full family visit tomorrow. No whammies, no whammies, no whammies...

A Shout Out To The Hood

Not everyone who reads this thing is invisible. It's about damn time I took a minute to thank all of our outstanding neighbors and friends who've been so wonderful to us through this whole thing. 

People have been fantastic about just checking in, letting us know that they're thinking about us and following along with Jane's latest hijinks. And some folks in particular have jumped right in and helped us with things like taking care of the yard (thank you, Rebecca and Linda) and taking care of the dogs (thank you, Erica and Brynn) and taking care of the nurses' need for sweets (thank you, Julie) and taking care of Sarah (thank you, MiHae, and Bill and Cathi) and taking care of us (thank you, Maggie G., and Allison, and, well, everyone). Whether it's dropping by with a little something to brighten our day (thank you, Sarah) or brighten Jane's bedside (thank you, Jen), it's just wonderful how many people have been happy to help. 

I suppose it's possible that we could do it without you, but I don't want to contemplate having to. Thanks, everyone.

Floored

What's this, you ask? Did someone have a little bit of a move last night? Did someone perhaps find herself a new room? With a CARPET?

Why, yes. Yes she did.

Ta-da!

Jane's latest digs!

It was the weirdest feeling this morning, washing my hands and then turning to the right to go to the carpet side of the ICN after four months on the tiles. I'm just happy that Jane's in a quiet spot with a window. If the kid can't be outside, she should at least get the chance to see it.

After we got ourselves oriented, it was time for the big meeting. Got a rundown from Dr. Congenial and Dr. D (who is on this weekend, and then is attending for the next rotation) on Jane's current status and their plans for weaning her on the steroids and making some headway in weaning some of the vent settings, but it really it was TRACH TRACH TRACH.

As Tom just this second put it, the struggle is with what the trach represents and not so much the reality of the trach itself. That we could be looking at a year (or, god forbid, longer) of Jane being on the vent.  That Jane's lungs are so bad that this is what it's going to take for her to keep going.

So now (OF COURSE) I'm worried that we're waiting too long and causing Jane distress -- poor thing is gagging on the new tube (it's bigger and less flexible) -- and that she's going to develop an oral aversion and that the window of her ability to learn to eat is closing and and and...

This sucks.

My angst aside, it was in fact a good day. Nice snuggle, punctuated by a fairly spectacular projectile vomit. And then? And then? Donna set a NEW DAYTIME OXYGEN RECORD, and tied the all-around record of...

TWENTY-EIGHT PERCENT.

Bring it, Angela.

Another Day, Another Wildly Expensive Exam

Bronchoscopy day!

The bronch was scheduled for around 8:45, maybe 9 am, so I busted my, er, tail to get there in time for it. I may have driven just slightly faster than the posted speed limit during portions of the drive.

Ahem. I walked in the door of the ICN at 9:05, cursing myself for wasting time hugging Sarah goodbye at school (kidding, people, just a joke), and approached Jane's bedside to find... hey! Everyone was just standing around. Are you kidding me?

What with one thing and another, including dragging Awesome Respiratory Therapist Tim away from the cute new nurse, it was 10:02 before the show got started. 10:02! I could have slept in! I could have driven slightly more safely than I may have done this morning!

That's the excellent pulmonologist on the right with the scope (she's my height, and standing on a stool). The skinny black cord you can just make out between her two hands is the camera (!) which was slipped into Jane's spanking new, bigger tube.

They rolled this whole set-up to Jane's bed. I got to watch the whole thing, and it was extremely cool. I wish I'd taken a picture for you, but was too wrapped up in watching the screen and Jane to think of you guys. So inconsiderate. I hope you can all see fit to forgive my lapse, invisible readers. It won't happen again.

Anyway, the bronch was completely normal. I mean, totally normal. The lung tissue was pink and healthy and smooth and the architecture of her lungs was just as it should have been. No one really expected to find anything weird, but I think the pulmonologist was surprised that the lungs looked so healthy. So yay for healthy-looking lungs! Boo for another potential quick-ish fix being taken off the table. Also, there was no evidence of vascular problems, so my bet is they're not going to do the CT angiogram they'd been considering. We're having another family meeting tomorrow to discuss where we go from here.

After all the excitement (which Jane dealt with beautifully), our girl took a nice long fentanyl-assisted nap on my lap.

I put her back in bed and when I came back from the pump room Jane was wide awake and playing in the Boppy. She has this violently-colored bird toy that she just adores. She really plays with it. One of the things that's been uniformly great about Jane has been her developmental progress. Awesome Developmental Therapist Thea is always enthusiastic about how Jane's doing, and says that she's doing everything a baby her (adjusted) age should be doing. She does the slo-mo baby grab, and kicks, and tracks with her eyes and is incredibly attuned to her surroundings. It's very cool.

Not... sleepy...

And she's out again.

Oh, and the trach? Off the table until after Thanksgiving. Still time for... something to happen. I had a quick visit this afternoon with the only kid in the unit with a trach. It was meant to be reassuring. HA. HAHAHAHA. No. Please.

Second Verse, Same As The First

Another day, another onslaught of tests and exams and procedures. I walked in to be greeted by "Eye exam!" "Oh, no!" I cry. "Oh, yes!" comes the surprise reply from... Dr. No Longer Brusque. He... he joshed with us. He learned St. Joel's name! I... we... well. I've got a week to work on a new nickname.

That ended (no real change, possibly slightly better, in any case good news because it's still just the same small area) and I went off to pump. Upon my return I was happy to learn I had avoided the whole sticking for an IV. You all know I can stomach a lot, but watching my kid bleed is tough even for me.

The resident came and did the paperwork for the medication for the tube switcheroo. We all spent half an hour or so milling around, waiting for Awesome Nurse Donna to get everything prepped. Then suddenly, zip! NEW TUBE IN OLD TUBE OUT. Within seconds of the new tube being in place Jane was sucking away at it -- they give a very short-term paralytic for the procedure, and it was remarkable how quickly she started to come out of it.

Here she is immediately afterward. They taped her feeding tube to her forehead to keep it out of the way, poor kid.

I wish I'd gotten a photo of her face as soon as she was able to move it. Her little forehead wrinkled up as if to say, "What the hell just went down here?"

Twenty minutes later, snkxzzzzzz. I could have held her, but instead just left her be. Little bug clearly needed some shut eye and I wasn't about to mess with that.

Oh, and while she was sleeping? Check out the Os!

THIRTY PERCENT! Shazam! And she was hisatting when I left; she might have made it into the twenties this afternoon. Regardless, the gauntlet's been thrown -- will Angela rise to the challenge?

Tomorrow, the bronchoscopy. We could have had the trach scheduled for tomorrow afternoon, too, but we're clinging to the hope that we may happen upon something, ANYTHING, to make it unnecessary. Who knows -- maybe something as simple as this tube change could make the difference for her. Come on, Powers That Be. Cut our girl a break. She's due.

My Day, A Photo Essay

Jane had a lovely morning, showing off for everyone and practicing kicking things while enjoying a little nakey time. Sorry, Tom, but SOCCER.

She naturally immediately started acting up upon my arrival, but settled back down, and Crazy... ahem. I mean, Awesome Nurse Angela manhandled her oxygen all the way down to:

THIRTY-ONE PERCENT. I'm not sure anymore, but that may be a day-time record.

We got her into the Boppy in my lap, since she seemed to like it so much yesterday. All was peaceful, until this beast rolled into our quiet corner:

Gah. Chest x-ray. Not our girl's favorite activity. During her fussing afterward, we discovered something new. Can you see that shine in the corner of her eye there?  Do you know what that is? TEARS. Good god. She's that old, that her tear ducts work. Her little eyes were all welled up.

So we tried getting her settled again. She did not want my shoulder. She did not want to recline in the Boppy in my lap. She did not want the old school cradle-hold. In fact, she yakked on an epic level after a mere five minutes in the crook of my arm. Would Miss perhaps prefer some tummy time? Hmm.

 

After due consideration, NO.

Honestly, child! We patted, we pacified, we played womb tunes. We even got the newly-named Howard in on the act. 

At last our combined efforts soothed the savage breast. And then? RIGHT THEN? A blood-draw for genetic testing (part of the last-ditch effort to be sure not to misdiagnose Jane's situation before traching her -- they're checking to see if she has surfactant deficiency [surfactant is the stuff that keeps lung tissue pliable and allows them to expand instead of sticking together]).

I threw in the towel. And so did our girl. She passed out, I gave her a kiss and booked out of there.

On the docket for tomorrow? Reintubation with the bigger tube! Whee!