Wednesday, September 30, 2009

Top of the Christmas List

Today I met with the developmental pediatrician who'll be following Jane from now on.  These days there isn't a lot for her to do, but she'll check in weekly and once Jane comes off the oscillator she'll start being able to make assessments.  She had some good suggestions for things I can do with Jane, including ersatz-kangaroo time:


See?  On days when I can't get her out of the isolette, Dr. L suggested that if the top of the isolette were lifted, I could at least get my arms in there.  It's way better than nothing.

She also made it pretty clear that we're looking at Christmas for an approximate coming home date.  Two months down, three to go...


Awesome Nurse Angela is on tomorrow which means... REAL kangaroo cuddling!  (Potentially.)  I can't decide which book to bring in to read to her: Mary Poppins or A Little Princess.  Can't go wrong either way.

Tuesday, September 29, 2009

Confessing

Confession: I've been a little cranky lately.  Jane's been doing great, but I'm hitting a wall. This frigging ICN. Everyone here is wonderful, the care's been fantastic, etc. etc., but I'm starting to have a hard time seeing all these babies born after Jane moving on so quickly. I know all too well that this is a long haul, and that recovering from BPD is a slow process we'll be dealing with for years, but I'd really really like to see Jane be able to do the simple things all these other babies can do. They get out of the isolettes! They move to other parts of the unit as they improve! And here we sit, stuck at bedspace 28, in a greenhouse Jane needs neither for heat nor humidity. It's just for the goddamned tubes for the oscillator.

In cute but alarming news, Jane is no longer allowed on her belly. Not for back-to-sleep training or anything remotely like that, but because she's now so strong that she can do a baby push-up and lift her head clear of the bed to try to turn her head to face the other way. An excellent way to dislodge the breathing apparatus keeping her alive. The night nurses had mentioned it over the weekend, but I pooh-poohed it, thinking they were exaggerating and nervous because they hadn't seen Jane recently. Oh, no, my friends. I saw it all yesterday. The kid is SCARY. I had to hold her head down until the respiratory therapist could come flip her over.

In excellent news, her oxygen got down to 42% this afternoon, and Awesome Resident Harriet was planning to adjust the pressure setting down a bit. The pressure is really what's holding us back -- Jane's been needing a lot to keep her lungs open. As soon as they can get the setting down to 14, they can put her on the conventional vent, and we will at last be free, FREE!, of the isolette. She was at 18 when I left for the day (she was at 22 or 23 on that wretched Labor Day); they take the setting down by .5 each time she's been stable long enough that they're comfortable with messing with her. I'd love it if she got to 14 next week. Ooh, please please pretty please!

Monday, September 28, 2009

In Lieu of News

No changes, no tests, no nothing today.

In lieu of news, I can only offer you this:


Hope you don't mind.

Sunday, September 27, 2009

Jane's Awesomest Nurse

Awesome Nurse Sarah on duty today!


And Jane was very happy about it.

Sarah single-handedly brought Jane's oxygen down from around 60% to under 50%.  Somebody give that girl a raise.  The kid's the best nurse we've seen yet.

So, after all that talk about getting Jane off the steroids pronto, there's a new plan to wean her over a month.  So much for the quick wean.  Her oxygen was up in the 70s and low 80s overnight after they took her off them for the day, so it's not like it's an arbitrary decision.  But it does seem that any given plan not only can but almost certainly will be revised and even reversed as soon as an order is written.  Whatevs.

Saturday, September 26, 2009

Great Expectations

Tom's turn at the hospital today, and it was just your basic day. Nothing big happened -- good or bad. And I think after the big conversation yesterday, everyone was oddly let down. Like we were all thinking, "Okay, kid. You're supposed to be all better starting... NOW." Well, Miss Jane didn't get the memo. Or was behind in her reading. I don't know. Point is, she didn't magically get her oxygen down in the forties, or wean down to conventional vent pressure settings.

Damn, that's right. We still have to do the daily grind. Sheesh.

Tom did get to have another great conversation with another of the neonatologists -- this one is the one who specializes in pulmonary issues and runs the clinic for the ICN graduates after they go home. Let me pull up my notes (Tom's texts) from earlier today...

"Long chat with Dr R who is thrilled and surprised by her turnaround. Radiologist thought head ultrasound showed perhaps a little more hydro [hydrocephalus] but Doc R says no and no more ultrasounds until 40 weeks. Says that neurologically she is doing great, no PVL [the last potential aspect of the bleed that we were still worried about and waiting for the final word on]

"Love me some Doc R. Said Miss Jane is awfully sweet to be so tough... She thought the xrays were improved, more black... Nine day steroid wean starts today."

Oh, and the last line from Tom today:

"FIVE POUNDS FOUR OUNCES"

Um, emphasis mine there. She's going to pee a bunch off tonight (she got another dose of a big-time diuretic today), but that's about five pounds of baby there.

How 'bout them apples?

Friday, September 25, 2009

Stuffed

We had a big old hour-long conversation with this week's attending about our girl this afternoon, and when we finished I wished I could do the mental equivalent of loosening my belt. My brain was full.

It was a surprisingly upbeat conversation. The doctor is very confident that Jane has turned the corner and we are on our way out of the woods. She explained their strategy with regard to balancing the toxicity of the oxygen she's still getting versus the damage done by the ventilator. Right now, getting her off the oscillator is the higher priority, which is why they're slowly weaning her every day. They're satisfied with Jane's current pattern of oxygen in the 60s during the day and 40s at night, but she said they're going to start to expect more of her there as well. (Tom and I are already there -- isn't it amazing that we're already slightly disappointed that she's still in the 60s when two short weeks ago she was stuck at 100%?)

Let's see. I think I told you they started to wean the systemic steroid she's on (prednisolone). If I didn't, I meant to. There are some scary side effects associated with the long term use of systemic steroids like prednisolone, including cerebral palsy. Which would be bad. So they're going to try to have her off that by, I think, some point next week.

What else? She had another head ultrasound this morning, but the report hadn't been released yet when we met. Her eye exam Wednesday showed no progression in the little retinopathy she already has. They're going to keep up with the weekly exam for awhile longer.

The doctor did say Jane'll be coming home, when she comes home, on oxygen at the very least, and possibly on a home ventilator depending on how she does with the weaning. But the doctor was very encouraged by Jane's response to the daily weans they've already been able to make.

So, wow. A lot of good news.

I have to confess, though, that as encouraging as the conversation today was, I was pretty overwhelmed by the end. The thought of all the things we're going to have to deal with, all the developmental issues that haven't even come up yet, the challenges of taking care of an infant who needs such an unusual amount of care... Well, it's a lot. Of COURSE I'm relieved to hear the H word (I even went so far as to start working on turning the guest room into Jane's room a couple days ago), but I'm pretty damn nervous about how we're going to handle taking care of her without having our crew of Awesome Nurses and Respiratory Therapists. Do you think if we ask St. Joel to be a godfather he'll make house calls?

But then I got to give Jane her third bath and felt much better.




I think she liked it, too.

Thursday, September 24, 2009

No News Is...

Nothing happened today.












What, you didn't believe me? Well, I was only mostly kidding. They adjusted one of the vent settings down a little again, and she went up on her oxygen for a bit, and then came back down to 60% where she's been most of the day. And she got her very first vaccinations this afternoon. And that's it. You wouldn't have missed out on much if you'd just believed me back up there at the beginning of this post.

Tom just talked to tonight's Awesome Nurse, who told him that she doesn't dare put Jane on her belly tonight. She's gotten so strong that she's trying to turn her head, which would pop the breathing tube off. Which would be bad. I don't think she could really do it, but she does lift her head a lot these days, which is freaky if you haven't seen it in a while.

Welp. That's it. To recap: pretty much nothing happened today. No news is... no news.

Wednesday, September 23, 2009

Crying Over Spilt Milk

Jane: still cute.

Okay, on to the next item of business! No, really! Oh, all right. A little more about Jane. They messed with the vent again. And... she went from 59% to 85% on her oxygen. But she spent an hour and a half snoogling with me (yes, it's true! we talked an RT into helping us out, and he was waaay more nervous about it than Joel is but he did it, and another RT watched because she'd never seen an oscillator baby moved before so now she could, in theory, do it too if she weren't too freaked out about it. yay!) and her oxygen started to come back down. Behold my powers! By the time I left for the day she was back down to 60%. And they didn't have to readjust the vent at all. I'm good.

On to the next item of business, for real. Last weekend, as you may recall, we left the lake house. We cleaned and packed and schlepped our stuff home. Included in that stuff was a week's worth of breastmilk. Which, it turned out, was not kept adequately chilled. Forty ounces of which thawed and was thereby rendered unfit for Jane's consumption. Let me repeat that figure: FORTY OUNCES. That's a quart and a cup of my very own painstakingly expressed milk. That's two days' worth of my efforts, over two solid hours at the pump, dumped unceremoniously down the drain.

Here, let me show you just what that looks like:



And, down the drain it goes:

Ironically, I drank a glass of (cow's) milk at dinner tonight after dumping my milk. And felt weird about it for the first time in my life. I think I have too much sympathy for what my sister cows go through to do that again.

(Ice cream, on the other hand, I won't be giving up just yet. My love for Chubby Hubby and Coffee Heath Bar Crunch and good old Breyer's vanilla runs too deep.)

Tuesday, September 22, 2009

Say It Ain't So, Joel

Another day, another two hours cuddling with Jane. Tragically, the Awesome and Amazing Papa Joel is going on VACATION for two weeks. As is Tim, the almost as awesome and amazing. Which may mean no cuddle time until they get back. How can they DO this to me? Jane's nurses and I were trying to think of which respiratory therapists we might be able to cajole into helping us out while our guys are out. Lots of RTs get nervous about moving the babies on oscillators. In fact, one of Jane's nurses today, Awesome Nurse Meg, is new to our hospital and Jane was the first baby on an oscillator she'd ever taken out of an isolette for kangaroo care (her previous hospital didn't allow it).

Turns out Joel is even more awesome and amazing than I already knew. He's the one who first suggested that oscillator babies should be allowed cuddle time. How cool is he? I think I'll just refer to him as St. Joel from now on.

So, let's see. News. Jane had a Doppler exam on her left inner thigh, which has been mysteriously swollen for about two weeks. They didn't find a clot, so the mystery remains. It's not as swollen as it had been a couple weeks ago -- the diuretics she's on have been helping a little, but the darn thing won't go completely away. Apparently, Jane just isn't satisfied if there's nothing to talk about.

Eye exam #3 tomorrow, head ultrasound #whateverteen Friday. And she's now old enough (over 60 days) to get her first innoculations! The normal keeps happening.

Oh, and have I mentioned how fat she's getting? This morning she weighed something like 2200 grams, which is well over four and a half pounds. That ain't all water weight -- we've got chub!

Fat and happy and two months old. Happy Fall!

Monday, September 21, 2009

All Thumbs

Well, well, well. Look who's stable enough for a little visit! It's been approximately forever since the last time I was able to hold Jane, but Awesome Nurse Patricia felt it was high time the kid got a furlough. We got two and a half hours in the chair the ICN snagged from the cardiac unit when they decided they didn't like it down there.

Toward the end of the visit Jane got hungry and started sucking on her tubes. Using some serious mama jiu jitsu, I managed to hold the baby, keep her breathing tube in place, maneuver a thumb in her mouth AND snap a pic with the phone. It was totally worth it. She started high satting like crazy as soon as she got the hang of it and was sucking away. If she's anything like her big sister, I have just introduced her to her very bestest friend for the next four years.


The string of good days keeps on coming. She's still dealing with some edema (especially under the chin and in her groin), but is otherwise doing really well. She's got both an eye exam and an ultrasound on the menu this week. I guess her head should grow about a centimeter a week, and this week it grew and a centimeter and a half. Time to check on the brains again. No swelling no swelling no swelling.

I'll keep you posted on all that throughout the week, invisible readers. For tonight, I'll leave you with this thought: while a four-pound baby is a hell of a lot bigger than a two-pound baby, she's still a tiny, tiny human being.

Sunday, September 20, 2009

Birthday Gift

It's Tom's birthday today (HAPPY BIRTHDAY!) so we took the day off from the hospital, which means no cute pictures for you. Sorry. I'll get on that tomorrow. But the current trend continues!

Get this. They weaned a couple of Jane's vent settings last night and this morning, AND SHE DID FINE! Tom called down at maybe 5ish and she was at 47%. Swear to god!

I think, now don't quote me on this, but I think she might actually, eventually, some day, come out of this... okay. It... it could happen. But don't tell anyone I said so.

Pretty cool present for Tom, dontcha think?

Saturday, September 19, 2009

How 'Bout That?

Here's what we did today.

First, we packed and cleaned all morning and said good-bye to the lake house.


Then we were off to the hospital, where I got to change Jane's diaper. Jane managed an EPIC poop mid-change, on the heels of an almost-epic poop that went most of the way up her back (hey, you're reading a blog about a baby; the poop talk is inevitable). The second poop was so epic that she actually got it all over the back wall of her isolette. Look:

You see where those three hoses are coming into the isolette? Yeah, she hit that. I didn't know babies could do that.

Which gets us to the next thing we did: changed out the entire isolette. Which took... wait, let me count... six people to accomplish: one respiratory therapist, four nurses, and me. I got to hold her, Kunta Kinte-style, while everything was whisked away from under her. And of course, in typical Jane fashion, she LOVED it.

Awesome Nurse Donna kept the isolette open for us afterward so that we could get some lovin' in, and Awesome Big Sister Sarah was in heaven:


Jane was doing so well, was so happy, that Donna was able to turn her oxygen all the way down to 44%. Don't believe me? LOOK AT THIS:


She's been doing so well, Donna may even have used the H word. I'm not going to type it out loud, but it's, you know, the place where we live. Ahem. Not that we'd be bringing her here anytime soon, but we can kinda think about the fact that, well, we likely will.

How 'bout that?

Friday, September 18, 2009

Rub-a-dub-dub

A WHOLE (work) WEEK WITH NO CHANGE! This is so cool.

Jane spent a few hours last night at 47%, but never got below 40%. Matt, (if you're reading this) no crowds toasting Jane tonight. Still, yay! She spent the day today in the 60s and 70s, and was at 64% when we left this afternoon. It's funny this pattern, doing pretty well during the day then having such good nights. I assume it's because the nights are relatively quiet, and she isn't being poked and inspected and moved around so much.

Because she's been so stable these last few days, it was BATH DAY! It's such a fun, normal thing to be able to do with her, and it's one of the few things she needs that I can do entirely myself. (Although Tom did discover yesterday that parents of longtermers have been allowed to make adjustments on the vent settings themselves. I can't believe Tom hasn't already tracked someone down with paperwork and waivers and stuff to get permission. You can see his fingers twitching when Jane's high satting and there's no one around to turn her oxygen down.)

I was showing one of the nurses Jane's picture from her last bath, and I could suddenly see just how much she's grown:


Bath 1: August 19




Bath 2: September 18



(wow -- has it really been a MONTH since her last bath? I had no idea.)

Whole 'nother baby! Sarah got to come in and see her today for the first time in three weeks (scheduling conflicts and then a cough kept her away) and said, "She's so big! (pause) Can we take her home now?"

Thursday, September 17, 2009

Tempting Fate

Jane holds steady for another day. She still gets up to 100% oxygen at times, but she's also been able to go down into the 50s -- and as our lovely new resident (or was it this week's attending?) pointed out to Tom today, that's progress! Jane's lungs are slooowly getting better! I mean, really really slowly. But still -- better!

no jinx, no jinx, no jinx

There's been a little talk about weaning her nitric. We were quick to point out how disastrous that wean has been in the past, but they really want to wean Jane off SOMETHING. Really, it's like they're flipping through her file looking for something they can adjust without causing every alarm in the vicinity to go off. She's on something like a dozen different medications and supplements that she really has to have, and they're scared of adjusting the vent (not really). So, nitric it is. We'll see how that goes.

She has NOT been enjoying her x-rays lately; they've been showing slight improvement but no real change so tomorrow they're giving her a day off. This morning her oxygen went from the 50-some% before the x-ray to 100% afterward. (Oddly, during her eye exam today -- a much more invasive and uncomfortable procedure -- her oxygen only went up a little bit. I keep telling you, she's a weird kid.) Wouldn't it be cool if they left her completely alone for once and she got all kinds of better? I'll let you know how it goes, invisible readers. If she gets below 40%, we're totally going to my brother's bar to toast our girl.

NEWSFLASH! Tom just got off the phone with Awesome Nurse Holly, who reports that Jane's oxygen is down to 47% as of 9 pm. Get ready to hoist a brew, people!

Wednesday, September 16, 2009

Tuesday, September 15, 2009

Strategery

Well, the doctors are certainly doing their best to keep things interesting (= crazy-making) for us.

They have come up with a new strategy for Jane's treatment: NO MEDS. Seriously (sorta). She's off all her antibiotics (she was on three) and is on a very low dose of the steroids. She'll still be getting other things (morphine and diuretics in particular), but she can take them orally, so they'll be able to take out the IVs they'd had to reinsert. With the steroids, she's pretty much at the end of the course they'd prescribed, and they've gotten to the point where they're now more worried about potential side effects than the benefits of the drugs. With the antibiotics, they're not sure she ever had an infection/pneumonia at all. AGAIN.

PEOPLE, WILL YOU PLEASE JUST MAKE UP YOUR MINDS?

The Infectious Disease guys have been up to see Jane for the last three days and they don't think she ever had an infection, that the bugs that grew in the culture were critters in every kid's trachea.

Fine. FINE. <throws up hands> I give up. I won't ask for consistency as long as they promise not to break her. That's all I ask.

Sheesh.

Monday, September 14, 2009

Bonus post!

Awesome Nurse Sarah on break at the lake house

Huh. Really? Nothing?

Um, nothing happened today. Really. I hardly know what to tell you, invisible readers. No tests, no progress OR backsliding. She did have an x-ray, which looked better than they have recently. But her oxygen was the same when I arrived at 11, and when Tom left at 4. So... yeah. There you have it. Oh, the doctors have all realized that Jane does best when she's weaned slowly on her vent settings. Welcome to the team, guys! Glad to have you with us.

Tom's parents came up to see Jane today and took this photo:

She totally looks like Tom here. (Hey, look at that -- I saw an actual resemblance between a baby and one of her relatives. Go, me!)

Sunday, September 13, 2009

A Dialogue

A conversation this afternoon, via text:

(Tom arrives at the ICN)
Tom: Still at 100 but satting at 94 95
me: Hope they turn it down soon
Tom: Me too looks like they could

Tom: Took her down to 87 on the nitric [ed: nitric meter] at my urging still satting at 92 was wide awake when I got here
me: Cool -- a good start!
Tom: Leg swelling has gone down pretty edemic on inner thighs which isn't new
me: Good news on the swelling. Are you going to try to talk w/Juliette or Madge?
Tom: If they come by. She could come down more on the o but Karen went to lunch
me: Kim or Megan could turn it down...
Tom: Hasn't been below 90 on her sats since I got here and closer to 95
me: She likes you better than me!
Tom: I do have weird luck with the sats. Just asked for her to be turned down now at 85 on nitric and 91 on regular

Tom: Down to 81 and high satting
me: Go daddy mojo!
Tom: High satting like crazy and no one is here 98 and 97
me: Find someone, quick!
Tom: down to 77 and still satting at 96
me: Fine, show off for Dad, Jane.
Tom: She's going to come down more I think

Tom: Karen is cautious on the o wean
me: Well, you can't blame her.
Tom: I know she stopped high satting finally tho she is at 92
me: Guess she figured she got your attention sufficiently.

Tom: She's back high satting but Karen just looks at it
Tom: Angela would have had her down another ten
me: Ask her why
Tom: when she comes back I will

Tom: Got one of the nurses to take her down she was hitting 100 over and over
me: Nice
Tom: At 73 and still high satting

Tom: Karen's killing me on the phone and jane is high satting at 70
me: I don't suppose you could hang up her phone and make it look like an accident.
Tom: Down to 66 and satting at 95
(Tom heads home)


We're just a teensy bit obsessed with Jane's oxygen. Tom keeps saying that he wants a webcam trained on her monitor so he can stare at it no matter where he is. It's a joke, but he's totally serious. The nurses call him Jane's lucky charm because she always starts high satting when he arrives. The little stinker is a total suck up already! If she keeps buttering him up she's going to have a new car by the time she's discharged.

Saturday, September 12, 2009

Dudes, We're Totally on Vacation

And yet the blog continues! Because we're on vacation twenty minutes from the hospital. Par-tay! (It's a very nice house on a lake, actually, with both wireless internet AND a zillion channels via satellite, so no complaints.)

So, Miss Jane got all the way down to 48% on her oxygen last night thanks to Awesome Nurse Donna. I have this image of her standing in the way of the ventilator dials all night so that no one could get in there to mess with them. See why I'm constantly praising the nurses? They totally rock.

Jane spent most of the day back up in the 80s, but was down to 59% when Tom left the ICN this evening. There doesn't seem to be a real reason why, so I'm not going to try to speculate (publicly, anyway; Tom and I of course spent a little time talking about what might have happened and slagging on the mysterious Them I like to blame for inexplicable events). They have been weaning the pressure a bit, but it seems they're being a lot more cautious.

I have got to get a picture for you all of Jane's bottom that won't get me arrested for child porn. She's got this massive strawberry birthmark on it; if it were on her actual buttock instead of her very upper thigh it'd nearly cover the entire cheek. Apparently it's a hemangioma, which is simply a benign tumor. (I know, right? At least it's benign.) It'll keep growing for a year or so, and then start to shrink and possibly go away entirely. I hope so, for her sake. It's cute on her little baby bum, but a teenager would NOT be psyched about swim season with this thing covering the back of her thigh. Do you know how much babysitting and lawnmowing she'd have to do to pay for plastic surgery? Yes, it's true: I'm THAT kind of parent. "I had to start working at 11! And we walked to school uphill in the snow when it was 30 below! [It's true!] Now quit yer griping and get to work!"

One thing we learned today from the head nurse practitioner: Jane has extremely unusual x-rays. In fact, "abnormal" was the term she used. Her x-rays have all been sent to the medical school for the newbie doctors to study. I have no idea how or why or in what manner they're abnormal because the NP didn't give Tom much of an explanation, but there you go. Something new to pester the doctors about.

Alrighty then, back to my vacay. Which right now means watching the Red Sox on the teevee. Just like at home, but in a different state. I know, we're wild ones.

Friday, September 11, 2009

Don't Touch That! *smack*

When will these doctors learn? Jesus.

So I show up this morning and... 100%. WHAT ARE THESE PEOPLE TRYING TO DO TO ME? Ugh. As usual, the doctors got all giddy about how well Jane was doing and messed with the ventilator's pressure settings and pushed her too far and... swoop! Back to 100%.

Have I told you all how weird Jane is? That's the nurses' term, not just mine. I swear. Anyway, most preemies don't want to be messed with. They hate being moved around a lot, being manipulated for x-rays and ultrasounds are always bummers, etc. Not our girl. So today Jane has an eye exam, which, naturally, I watched. Because I am a ghoul. It's the most uncomfortable and yet fascinating thing I've ever watched (oh, don't you worry, details to come). The opthalmologist is POKING IN HER EYE SOCKET, and Jane's satting goes through the roof. Her oxygen had been in the high 80s before the exam. It slowly starts to climb halfway through and by the end she was at 100% saturation. THIS IS WEIRD. Truly, deeply weird.

So Awesome and Hilarious Respiratory Therapist Eileen bumps her pressure setting back up to 21 (they'd tried to get her down to 17 overnight, which is where it all went south), and immediately gets her oxygen back down to 80%. Not as good as before this latest fiasco, but an improvement. And her CO2 went down to 52 from the 70s (it should be in the 35-45 range, but 50's okay for a kid with chronic lung disease).

Sheesh.

Now, here's why the nurses are so damn awesome. Awesome Nurse Karen, who was on today and yesterday, took Awesome Nurse Donna (on tonight) aside during the shift change and said "We all have got to team up and make sure the doctors do NOT mess with Jane's pressure for a while." I'm sorry, but that's just too cool. The nurses are advocating on our behalf, and I couldn't be happier or more grateful.



Okay. So, the eye exam. SKIP THIS PART IF YOU'RE SQUEAMISH. They have to put drops in Jane's eyes to dilate the pupils, which babies just LOVE. Yeah, no. Then, the opthalmologist comes and uses a tool that looks like a warped binder clip to force the eyelids open. It's very Clockwork Orange. Then she takes a tool that looks like a teeny tiny spatula which she slips into the eye socket so she can push the sides of the eyeball where she can see them through the pupil (scleral depression is the term, for those looking to impress their eye doctors). Anyone nauseated yet? What they're checking for is a condition called retinopathy of prematurity, which is when the blood vessels in the eye grow abnormally. (The Wikipedia entry is actually quite good on this, for the curious). There are many stages and degrees of ROP, but at the severest end, if left untreated, it will lead to blindness. Fun, eh? Oh, supplemental oxygen use is a risk factor for ROP, along with prematurity and low birth weight. GREAT. Let's get her off the damn oxygen then, eh? Honestly, people.

So our girl Jane has the teensiest bit of stage 1 of ROP in one eye. 90% of the time it resolves on its own, I learned. So they'll continue to check her eyes weekly to monitor the sitch, but the opthalmologist was confident that it would take care of itself. So, I guess that's sort of goodish news.



Now a cute story as a reward for making it through that discussion:

While Jane's pupils were dilated and we were waiting for the eye doc to arrive, Awesome Nurse Karen tented a lovey (a flannel square I wear next to my skin to "charge" it, and then put in the isolette so J can bond with me via pheromones or something) over Jane's eyes to shade them. I went off to the pumping room, and when I came back, the lovey was entirely over Jane's face. "Karen, are you messing with my kid?" "What are you talking about?" Karen looked baffled, swore she hadn't touched her. So she repositioned the fabric and Jane immediately pulled it back down over her face. She was playing peekaboo! Okay, she was only trying to move her arm, which was stuck under the lovey, but it was really cute and funny, and Karen and I totally cracked up.

Maybe you had to be there.

Thursday, September 10, 2009

The Many Faces of Jane

Another better day. In fact today went almost exactly as yesterday did. Same numbers, same awesome nurse, same same same. And for us, the same cautious relief.

So, to celebrate the seemingly unprecedented phenomenon of three consecutive decent days, I present to you some of the many faces of Jane:

The Sourpuss
This is during mouth care; she doesn't like having her mouth swabbed or suctioned -- and who can blame her?



The Protest
This generally comes on the heels of any activity she's not up for, like, say, mouth care. Often accompanied by a hand pushing out in the classic "stop" gesture -- which she would be doing here except that her breathing tube is in the way.



The Pirate
Jane makes this one-eyed face a lot, and every time she does, the younger nurses and respiratory therapists say "Arrr!"



The Listener
Anytime Jane's eyebrows are up, whether her eyes are open or not, she's listening to what's happening around her.



The Flirt
Need I say more?


These are only the best images of at least a dozen I got in three minutes of her pantomime show. With emoting like this, she could totally be a daytime drama actress someday! A mother can dream...


A short while later...

I can't believe I forgot to mention this: the attending thinks they've beaten back the pneumonia already. At least it isn't showing up on the chest x-rays anymore. I was convinced this was going to be like a two week battle, but the antibiotics are totally kicking microorganism butt. So the plan is simply to finish the full courses of the antibiotics. They're feeling really good about the response they've been seeing from her so far. They've also been able to adjust the ventilator settings down a bit, but they're constantly fine tuning those so I try not to get too hung up on that.

In slightly less good news, poor Jane now has an ulcer. It's pretty common (what crappy thing isn't common in the ICN I ask you?), and they're treating it with Pepcid. Really, Pepcid! She's still on morphine, so I'm guessing it isn't bothering her much. But still. Wouldn't it be nice for her NOT to get a common preemie complaint for a change?

Wednesday, September 9, 2009

Maybe Just a Touch Defensive

I am taking so much crap for the bat! It was just a joke, Mom! I stand by it as both funny and true. So there! (There's an unassailable tactic: reverting to childhood retorts. Well, pthththt!)

Fine, if you want a cuter image of what happened to Jane's nose from the CPAP tubing, here:


Everyone happy now?

Well, as you might have guessed from my tone, we had another good day. Jane continues to do better with her oxygenation -- her O2 was in the 60s all day.

Interesting side note: it's hard for me to decide which numbers to go with when I post. There's the level of the oxygen setting, and then the actual level she receives. The nitric she's also getting makes up about 10% of the air she's getting. So when I say her oxygen was 60% (which is where it was when I left today), that's what she's actually breathing. The setting was at 71% at the time. Saying she's at 100% means she's breathing about 90% oxygen, but it's the maximum they can get to her. I like the lower number, but the docs tend to use the higher number. Because they're glass-half-empty types, obviously.

So I got to spend the day talking with Awesome Nurse Angela and the Amazingly Awesome Joel, who used to teach intubation classes for nurses. Turns out they practice intubation on cats and ferrets. Live, sedated cats and ferrets. They're anatomically very similar to neonates (= preemie in medico-speak).

Great, bats AND ferrets. I must really be freaking people out now.

My point, and I think I had one, was that it was a really nice, quiet day, and the monitor was NOT taunting me with awful numbers blinking in emergency red.

Tuesday, September 8, 2009

A Collective Sigh of Relief

Whew.

I called down to the hospital this morning, not expecting to hear anything better than "no change". Instead, I was told by Awesome Nurse Karen that Jane was down to 72%! Can I get a "Wah-hoo!"? Except when she was being messed with, her oxygen needs stayed in the 70s all day. It's the first time in, um, five days? that she's been down from 100%. And no one was hovering over her isolette today. I glimpsed the docs once, and talked to Joel briefly twice, and that was IT. YES!

The antibiotics may be helping, but really it's all about the ventilator. Amazingly Awesome Joel worked some serious magic yesterday, and today promised that he has no intention of changing those settings any time soon. He's just focusing on getting her gas levels where they should be. Which is a helluva lot lower. (I don't know what the docs may get up to, but Joel's the man to have on your side.)

So in honor of today's much better day, I think it's time we all had a little fun. Time for... an anatomy lesson! (Trust me, this is more fun than it sounds. Plus -- pictures!)

A long, long time ago, like five weeks ago, I was staring at Jane when suddenly I noticed, hey! Is it possible she has no nipples?
It was true.

See, she was worried about it, too! Now, I know it's a minor thing, but I was a little weirded out by this little omission. But I asked about it, and turns out babies don't develop nipples until around 34 weeks.

And wouldn't you know it? Today, the day before she hits 34 weeks, I saw



Nipples! The one on her right is hard to make out in this photo, but there's lefty, just beside the sensor.

Other things preemies don't have: hard ear and nose cartilage!


She'd just been turned onto her left side, and her poor little right ear hadn't unfolded yet. The cartilage is too soft still to retain its shape (but it's getting firmer now). I don't think I got a good picture of her nose when she was taken off CPAP, but basically she looked like a vampire bat.

Without the teeth and gigantic ears, that is.

9:30 UPDATE Tom just called down -- Jane had gotten down to 57% a little bit ago; she's in the low 60s now. They're still worried about the pneumonia, but everyone's relieved by this turn of events. Whew.

Monday, September 7, 2009

Craptastic day, part 2

Or part gazillion, depending on how you're counting. Consecutive days? Two. Number of days it feels like we've aged? Gazillion.

Another truly sucky day, and we can't blame this one on the machines. This morning, after an okay night with no real changes, Jane took a sudden turn for the worse. I mean a real nose-dive. She went from a oxygen saturation level in the 80s or so -- not great but okay -- to the 40s. (The range they want her, or any baby on a vent, in is 85-95.) She was still on the jet. So they tried to switch her to the conventional vent and "bagged her" (lovely phrase, but it's just the hand-operated bellows), and she dropped down to 22. Quick, quick back to the oscillator, add some inhaled steroids and hey, let's drop some big league antibiotics of the sort usually held in reserve because now we have, for sure, no doubt about it PNEUMONIA. There are three different bacteria causing it, one of which has a tendency to become antibiotic resistant, which is why they pulled out the big guns today.

We were already scheduled to talk to the attending physician today about how Jane was doing, but the conversation we had this afternoon was nothing like what we or the doctor had anticipated. The pneumonia came out of nowhere, and instead of talking about Jane's BPD, we were having the horrible "this is the crisis point" conversation.

After that we ate some fermented dairy and extruded carbohydrate stew (Oh, I'm sorry Au Bon Pain; I didn't realize you had a name for that dish. "Mac and cheese", is it? Interesting) and headed back in to the nursery to watch that damn monitor. I swear, in Hell's waiting room, that's the only station the television set plays. Accompanied, of course, by the soundtrack of insanity: Endless Alarms.

Her saturation was back up in the 80s when Tom and I left tonight, but they've got the ventilators set at really high levels. Like, Spinal Tap dial it up to 11 levels. But it's helping, and it's giving the drugs time to kick in.

I'm dying to know how she's doing now (8:45 pm) but we're both scared of making the call.

10 PM UPDATE: No change, except they took her off the paralytics. What's that, you say? I forgot to mention that earlier? Well, they decided to chemically paralyze her today because she's fighting the vent. She's strong enough, and willful enough, to keep breathing over and against the ventilation (which is what made her break the jet yesterday). So she was paralyzed and morphined against the anxiety from the paralysis, and now we're just waiting for the antibiotics to drive back the pneumonia. Fun times!

Sunday, September 6, 2009

Oh, honestly

All right. Enough already.

So, Jane had a really rough morning due to a mechanical issue. Because SHE BROKE THE MACHINES. Well, not really. But from what I gathered from what Tom gathered, Jane managed to shut off all the machines this morning. BY EXHALING. She was fighting the vent and somehow managed to blow the oxygen out that was trying to blow in. The jet vent is designed to cut off if the pressure gets too high so her lungs don't, um, explode. Because she shut off the jet, the nitric backed up. So when the jet was running again, the nitric shut off because it too has an automatic shut-off when the pressure builds. Awesomely Amazing Respiratory Therapist Joel compared what she did to an adult on an oscillator coughing. He gets the extra accolade because he actually called the INVENTOR of the machine to figure out how to rewire it so she couldn't do that again. He and another Awesome Respiratory Therapist tried out alternative settings on fake lungs so they wouldn't have to mess with Jane's. So, they have the tubing set up so Jane shouldn't be able to do that kind of thing again.



(That's a sketch Joel made to try to explain how she broke the jet. Or something. I don't know. Tom snagged it, I photographed it, and now you're all looking at it. Because what's a blog without photos? Well, wordy. Duh.)

I mean, really. Is it me or is this kid looking to make trouble? She isn't even born yet (well, you know what I mean -- her gestational age is 33.5 weeks) -- what are we going to do when she's a TEENAGER?

True to form, Jane was on 100% oxygen pretty much all day because she can't just recover and get back to where she was yesterday. Nooo, she has to be all dramatic and go back to maximum settings on everything. Jesus. But Joel said to Tom that he's seen this kind of thing a lot. I assume he was referring to her ups and downs and not the mechanical snafu, since he said he was surprised she was strong enough to do it. I'm going to sacrifice a goat or something to whatever god arranged for Joel to be near her bed when it happened.

Saturday, September 5, 2009

Well...

Not a lot to report today. Nothing like the progress we made yesterday, but not a lot of backsliding either. Jane wasn't thrilled about having the backup pressure from the conventional vent being turned off last night, so Awesome Nurse Michael spent the day futzing with her settings to get her back down from 100%. I think he got her oxygen down in the 80s, but she spent most of the day in the 90s.

She did get another blood transfusion. It always helps when she does (this'll be her third, unless I've lost count -- and you know I may well have).

The only big news: 4 pounds, 2 ounces, yo! They started her on another round of diuretics since a good bit of the weight gain is edema. People, you should see her little butt. It used to look like a frog's, kind of pointy and flabby and utterly without cushioning. Now? It's so round and full, and the back of her thighs are so swollen, that her backside looks like a cluster of cherry tomatoes. It'd be adorable if it didn't look kinda painful.

Regardless, she definitely has doubled her weight. See Jane Grow!

Friday, September 4, 2009

psst...

okay, folks, don't tell anyone, but I think we may have had a good day. shh! seriously. no yippees, no cheers, no pompoms. we are not jinxing this.

Everyone promise to keep quiet? Good, I can stop [typing in a manner to indicate] whispering.

Awesome Respiratory Therapists Lon and Gary played with Jane's vent settings today, and it seems to have worked. They adjusted her PEEP setting (which helps keep the lungs from collapsing at the end of an exhalation) and her PIP (peak inspiratory pressure, which is just what it sounds like -- the pressure in the lungs at the end of inhaling), and she went from needing 100% oxygen and backup from the conventional ventilator (the jet runs with it, and the conventional vent can provide a little or no extra breaths, depending on the setting) to...

*** 60% and they're turning off the backup (as of Tom's 9 pm call to the nursery). ***

I want to put that in huge, bold letters, but I'm trying my darndest not to get too excited. Excuse me for a moment while I spit, throw salt over my shoulder and make the sign against the evil eye.

Could this be the solution or at least the balance everyone's been looking for? (knocking wood) Obviously it's impossible to say, but at least she got an easier day out of it. AND it was time to change her isolette -- just because they do that periodically, the isolette get pretty grody after a while -- and I got to hold her again! For like fifteen whole minutes. It took that long just to get Jane's wires untangled and my chair situated so that it was close enough to the machines to keep her hooked up and yet far enough from the crib that they could slide the old one out and the new one in. I would have asked Tom to take pictures of the whole proceedings but he was too busy talking to his ICN BFF, Cathy. Now you know who to blame for this photo-free post.

I won't ask you to cross your fingers again because SOMEONE out there is obviously untrustworthy in that regard. But a little "go, vent, go" chant from time to time would be nice. If you happen to think of it.

Oh, and that "A" term I couldn't come up with yesterday that describes the wandering collapse in Jane's lungs is atelectasis. Can you blame me? See, you've already forgotten it and you just read it.

Thursday, September 3, 2009

Same Old Same Old

Invisible friends, I am taahred, and I don't mind telling you.

So, kind of a lot of no news today. Jane saw:
  • a pulmonary specialist,
  • an infectious disease specialist,
  • an opthalmologist; and
  • her usual coterie of attendings, residents, med students, nurse practitioners and nurses.

The only one who had anything new to contribute was the infectious disease specialist who suggested that she be given an extra three days' worth of antibiotics. Just in case.

Okay, and thanks for stopping by!

Jane's still on the jet. Her lungs looked a little better this morning, but aren't behaving any better. The areas of collapse are more expanded, the areas of hyperinflation are less expanded. But she's still on high oxygen (the lowest she got during the day today was 90%). So, a mixed result. They're not going to mess with her settings and see where she goes. They might put her on another three day short burst of steroids next week, but they'd rather not if they can avoid it.

Hmm. What else? This morning she weighed 1730 grams, which is 10 grams shy of doubling her birth weight. But a lot of that is probably fluid, so she'll probably get another diuretic soon.

The opthalmologist's visit was just to get her baseline. All he saw was prematurity in his exam today, which is actually excellent, in fact as good as they could hope for since there was a chance there might already be some damage from the amount of oxygen she's been getting. Her next exam is in ten days, and they'll continue to check her eyes every week or two weeks for as long as she's in the ICN.

And that's pretty much it. It's 8:30 and I am ready for bed.

Wednesday, September 2, 2009

Gah.

All right, which one of you uncrossed their fingers?

After a darn good day yesterday, Jane decided to make things interesting. Again. At midnight or thereabouts, she went right back up to 100% on the oxygen thanks to another unexplainable collapse in her lungs. Apparently, migrating collapse like Jane's (it has a highly technical name that I did NOT hear properly. It does begin with an A, if that helps -- the point is that she has small areas of her lungs that are slightly collapsed, and that those areas shift around, as you might suspect from the "migrating" part of the phrase) is a common effect of the oscillating vent. So, they're trying her on a new one: the jet ventilator. It's pretty similar to the oscillator (they both use high frequency pulses to deliver air), but the doctors will have more control over the expansion of Jane's lungs. Hopefully.

Remember the old set up around her crib? Well, here it is today:


The white machine is the INO (inhaled nitric oxide) vent. The array between Jane and the INO vent? Oh, that's just the monitor for the jet ventilator. Here's the actual vent:


Yes, that little box IN THE ISOLETTE is the vent. That's it. (I love the expression on her face here. "You couldn't just give me a teddy bear?") If this doesn't help her, they may put her on the conventional vent again, which would also help with the lung expansion. The jet's gentler, which is why they're trying it first.

Speaking of the isolette, someone is getting big enough AND old enough that she's not going to be in it for long. She's SIX WEEKS OLD today, and 1570 grams! Which puts her at 33 weeks gestational age and almost three and a half pounds, which means it's time for Miss Jane to get ready for a move to an open bed. Hey, it's something, right?

Tuesday, September 1, 2009

Totally More Betterer

The freelancing night nurse didn't get her way last night about the airway tube. But it was switched out this morning. Ta da! Jane's oxygen made its way down to 53% today.

Well, like I said yesterday, bigger tube, more air. I may have been a liberal arts major, but even I understand this.

Her feeding schedule is completely changing, too. Now she's going to get 26 ccs (nearly an ounce) every three hours, instead of 17 every two. Awesome Nurse Karen *may* have explained why, but it was a fleeting thought that passed in and out of the transom of my mind. (I know at least one of you can name that reference.) It's good news, is all I know or care about.

And, um, well that's it, really. Both Karen and Awesome Night Nurse Renee were happy with how well Jane's doing, so that's where we are. Everyone's feeling good tonight. You people have a job: crossing fingers to ensure this is not just a temporary fluke. Got it? I don't ask much of you all, so if you wouldn't mind indulging me, I'd be most appreciative.

I'm totally excited to drive to the hospital tomorrow. One of my amazing friends in Toronto (yay, M!) sent me the audiobook of the Monty Python autobiography AND Pride and Prejudice and Zombies (yes, Mom, that's an actual book -- and I just discovered that Sense and Sensibility and Sea Monsters is being released in a couple of weeks, and no I am not making this up), so it's obviously going to be an excellent day. I had to pack the book to prevent myself from diving into it as soon as I opened the package. That's right, people, Jane Austen + zombies = happy Tia. Come on, you know it's going to be awesome.