More from the Homefront

Our lovely friend Maggie (who, with her husband Brett Fabulous, cleaned our entire house before we returned home) came over today to do a little art project with Sarah. Maggie traced Sarah's outline on craft paper and they colored and embellished and glittered all evening.

This is what they came up with:

It's Sarah and Jane (Sarah asked Maggie to draw Jane in) at Christmas (that would be a tree above Sarah left shoulder). Um, there's also a rocket ship and what Sarah always calls a "space alien" (making a Christmas visit, I guess). Is that heartbreakingly sweet? Art therapy with Maggie!

So my emotions were a little raw but manageable when we sat down to dinner. We hadn't been eating more than fifteen minutes when Tom saw something flickering outside. We ran out to discover this in front of our house:

Our neighbors had lit luminaries.

Down the whole block, in front of every single house: JANE. This photo is just miserable -- I wish you all could have seen it yourselves because it was breathtaking, these lights aglow in the cold stillness. And there they were, our wonderful neighbors, literally with arms open for us. It was beautiful.

And then? Right then? I mean, the minute I walked back inside? Awesome Nurse Kristy called. Bring on the waterworks!

People, between your comments and cards and the displays here at home, I'm mush. My brother, sister, and I had brunch together this morning, just the three of us, at the restaurant of a friend of his. We got the bill:

My heart is full.

Home

I thought that my writing had ended with the end of Jane's story, but I wanted to share something with you all. We came home today, and found something wonderful in our neighborhood

and at my brother's bar downtown.

And just as amazing, a stack of cards somehow waiting for us already, all reading "Jane was here". I've seen it on Facebook, and Twitter, and blogs, and, best of all, on the March of Dimes website (where some amazing friends have been donating in Jane's name). I'm overwhelmed with gratitude. You are lovely people.

Speaking of gratitude, can I just take a moment to single out my sister and her family? Jenny and her husband Kevin and daughters (Sarah's Awesome Cousins Tess and Molly) opened their home to us for nearly three weeks. Jenny came to the hospital with me when Jane was first brought to Boston, and Jenny and Kevin were there with us when she died. They drove with us back to Vermont today. They've kept me, Tom, and Sarah functioning. My sister rocks.

And so do you, invisible readers. I'm touched beyond telling by your response to Jane's story. Thank you.

Thank You

Dear friends of Jane, my dear friends, Jane's journey has ended. My darling girl died today at 1:40 in the afternoon, six months and six days, to the minute, after she was born. Her lungs simply couldn't do any more. I was able to spend her last four hours with her, taking care of her and telling her, "You are loved. You are loved." Then the machines finally went silent, and she died in my arms.

I thank you all for being part of this with me.

Before I go, I would ask one last favor. If Jane became a part of your life, if her life held meaning for you, I ask that you send a card with just the words "Jane was here" on it. I don't want sympathy cards or condolences, I just want to know that she was HERE, and THERE, wherever you are. It will help to remind me that her brief time was filled with the love of friends and family, the visible and the invisible. That her life was part of your life. That she truly was Our Girl Jane.

My gratitude to you all has no bounds. Thank you.

Tia McCarthy
5 Winter Street
Montpelier, VT 05602

Vigil

Not much to report today, mostly in a boring-is-good kind of way. Unfortunately, that also means no progress was made. In fact, Jane kinda lost a little ground -- her CO2 levels were creeping up, so they turned up the delta-p (the setting on the oscillator that, very loosely speaking, sort of sets the size of the breaths) to try to help her get rid of some of the accumulated gas. Fortunately, it worked and got her CO2 back into the 60s (a more reasonable place to be). But to get there, they had to turn up the dial from 70 to 75. Back in September when she was struggling so much she was at 23, and we thought that was high. Oh, to be young and naive again.

The vigil continues. Howard the Bear and Bun have assumed their rightful places at Jane's head. Howard has been looking after Jane since her first moments in the ICN, and I was pretty uneasy about the few days when he wasn't there (thanks to a fall to the floor, poor guy got thrown in the laundry). He's her totem, you know?


I know I was worried sick back when Jane was so tiny and on 100% oxygen and they were constantly trying new things, but this... this feels different. It's been a loooong time since I've been this nervous about calling the hospital for an update. I think part of it is that we have been through this before, all this waiting and worrying, but -- and this may be my faulty memory protecting me -- I don't remember not feeling hope then. The glimmer of hope is so faint now. Jane's situation is so tenuous that it feels like a too-strong breath or a touch at the wrong moment could upset her fragile balance.

There is one good thing. I don't know if you all recall, but back in the fall when Jane was having such a hard time, she really liked being messed with. When her Os were at 100% and her sat numbers would drift down, we could move her or thump her back to get the numbers back up. Well, we can't do any of that now, but when Awesome Nurse Nancy suctions her mouth to vacuum up the drool, a thing most babies HATE, Jane's sats go up. Every time. It's old school Jane, and it gives me hope.

Rest

Nothing much to report today. And I'm thankful as all hell. Jane had a quiet day, and no changes were made to any of her (ridiculous) vent settings. She actually had quite a good morning, with her saturation numbers solidly in the 90s and even hitting 100 a couple of times. They tried weaning some of those settings a bit, but she wasn't ready for that. And then she had a little bit of a desat about half an hour before I arrived, but came back up to her now-usual place in the 80s to low 90s. But she's tolerating the open suctioning pretty well (something that was completely out of the question yesterday and even last night). I think she may have gained just a tiny bit of ground.

The damned lobe has grown again -- not to the size it was before Sunday, but it's big again. I am choosing not to think about that.

So, we keep waiting. We keep listening.




I was looking at Jane today and feeling her solid belly under my hand, and just enjoying her being there. I hold her feet a lot, as if she were still a new preemie needing that feeling of boundaries. The little foot that once was smaller than my thumb now fills my palm. The solidity of her presence is soothing, despite how tenuous this situation is. For today, that was enough. That it was a day filled with sunshine and a Boston January's version of warmth was a total gift.

Plus I got to rock out to some cheese-tastic 80s tunes during the drive. People, it was damn near a good day.

Conversations, Part Two

Invisible readers and friends of Jane, it's been a hell of a day. After last night, Tom and I didn't know what we were going to encounter at the hospital today when the attending told us on the phone that she and Dr LR wanted to meet with us. We were expecting to have That Conversation. You all know exactly the one I mean.

Turns out, we're not quite there yet. Jane's not quite there yet.

Let me back up and fill in details. Forgive me for lapses or redundancies; I'm not sure what I've told who at this point, so I'll try to be thorough. And, I'm afraid, a little blunt. I'm finding there's far more value in candor than in euphemism right now.

Last night, before Tom and I arrived at the hospital, Jane coded. Through what sounds like truly heroic measures, they brought her back, and after a good initial response to their efforts, she's pretty much just been sitting at a barely-good-enough place. The consensus is that Jane's problem now is a mechanical one. That is, the underlying disease hasn't worsened and there's not likely any new infection she's fighting. It's about the gunk in her lungs. That mucous plug that gave her so much trouble yesterday afternoon was a part of it. There's just a lot of crap in there blocking her airways.

Jane is on massive ventilatory support right now. The dials are turned about as high as they can go. The oscillator works in such a way that she doesn't really take many normal breaths (she did breathe over it when she was healthier, but not now). It's a high-frequency ventilator, which means it sends hundreds of tiny puffs into her every minute. But she's paralyzed and sedated, so she's not breathing on her own, she's not coughing, she's not moving. She's not getting the gunk out on her own, and she's not putting up with the suctioning very well, either. They suction, her sats go down, and she's so delicate right now that it takes her a very long time to recover just to the barely-acceptable level she's been sitting at for the last 36 hours. And her bones have been weakened by the steroids, so they can't really manipulate her to get the gunk out without risking breaking bones.

Here, then, is the dilemma. They know what they need to do to help her (clear the gunk out), but there's not much they can do to get it out because she's so fragile.

Before we sat down, Tom had a conversation this morning looking for advice and guidance from the ever-hopeful Dr R from back north. She said the one promising thing from last night was that the lobe going down meant there was a chance (maybe just a slim one) that the rest of the lung could expand and start working better. And she said that she wants Jane back -- but she can't be transported on the oscillator. And she said that she's been praying for us.

So. So Jane needs to improve, somehow, pretty much on her own. Dr LR was pretty blunt. He is not very hopeful. He hasn't given up, and he's not forcing a timeline or issuing an ultimatum. But if Jane deteriorates, or if she has another acute episode like last night's, or if she's unable to come off the paralytic, then we will have That Conversation. Everyone's listening to Jane very closely right now, wondering if she's going to ask for more time, or ask us to recognize that the fight is over.

Conversations

Because my brain is fried, I'm going to cut and paste an email exchange by way of updating:

me: Jane is still stable, we're just hoping she gives us a clear sign about what to do for her. Waiting and praying until then.

Raspberry: What kind of signs are we looking for here? Have you taught our girl Jane
Morse code? I want to send her good communication vibes but it would help if you tell me what language the doctors there speak...

me: Signs we're looking for: better oxygenation, being able to come back off the paralytic, no acute episodes. Well, everything hinges on all those things, so how she responds -- whether positively or not -- is the sign. No morse code yet; she speaks through the alarms and the monitors, though! We are just hoping for clarity, one way or the other.


I'll post more about the conversation we had with the doctors later. My incredible sister is dosing me with chicken noodle soup and chocolate chip cookies, and I'm about to succumb to the lure of a cup of tea in bed.

11:30

No change. On our way in to the hospital for a conversation with the doctors.

9 AM

Tom and I left the hospital at 5 am ish. Jane is on crazy-huge amounts of ventilation support. She's back on the oscillator, and for those of you who understand these things or can talk to someone who does, her Mean Airway Pressure is at 28 and her delta-P is at a whopping 70, down from a whopping-er 73. They've been able to gas off a ton of carbon dioxide -- she went from a gas of 163 to the high 40s. That's an enormous improvement. And the goddamned lobe had shrunk significantly. But she's still having trouble oxygenating -- she's satting in the 80s, hit 90 briefly this morning. We need her in the 90s.

Obviously, getting her oxygenating better is the thing. But the shrinking of the lobe... everyone was shocked last night at the change, it was that glaring. I don't know if that changes anything, if that makes Surgery revise its assessment or gives new clues to her NICU team.

Updates to follow as I get information.

Pray

Everyone. Just pray.

On Things That Suck

I hereby complain!

Tom had a perfectly lovely day with Jane yesterday, and then went to the Museum of Science today for another fun outing. So while Sarah was doing this:


I had to deal with this:


Oh, I know what you're all thinking. "But it's Jane! Look at her! So sweet!" People, you have no idea what you're talking about. She looks perfectly innocent in that picture, and at that moment was being... okay. Ish. Her oxygen was at 100% all day. ALL. DAY. Shortly after that photo was taken, they tried suctioning her to see if they couldn't work out some gunk and get her saturation levels up. She was hanging at 91-92, and an A- is just not good enough at a Harvard-affiliated hospital. No sir.

So they did the full open suction, with chest compressions and bagging and all that craziness and she just did not come back up. She was sitting in the 60s, and slowly crept up to the 70s. She was getting a C. At Harvard! Bad. They switched her oximeter from her foot to her hand to see if they could get a better reading. So now she's hanging in the low 80s. They repositioned her. They gave her Versed. They gave her morphine. They waited. I waited. I asked what was going on and the nurse practitioner told me she was shunting. And, just like you are now, I was all "Huh?" And the NP said, "Well she has a hole in her heart and... "And I cut her off and said, "No, the PDA was ruled out." And she said, "Not a PDA, a patent foramen ovale."

I did not know this. One might think this would be information a parent would be given. One might be wrong.

Dr. Google tells me that a PFO is usually no big deal (see here), but can be a big deal (see here). It's a small hole, but the pulmonary hypertension may be making it worse. Or something. I don't know because NO ONE TOLD ME ABOUT THIS.

So, the NP's concern was that the hole was allowing oxygenated and unoxygenated blood to mingle (that would be the shunting) and that was why Jane wasn't able to bring her saturation levels up. (Anyone lost yet? Hang on, it's almost over.) Finally, she ordered a chest x-ray just to be sure that there wasn't a lot of fluid accumulating in the lungs. They picked Jane up to put her on the film and heard a squelchy SCCKK! in her chest.

Turns out a nasty MUCOUS PLUG had been blocking the way, and repositioning her knocked it loose. That's right, a big fat loogie was responsible for me spending three hours mentally preparing myself for explaining to a three and a half year old why her sister was never coming home. IT SUCKED.

So they suctioned that thing out and her sats went up to 95 and there she stayed for the rest of the afternoon and evening. Still at 100% oxygen, but getting a solid A on her sats.

As a side note, the secretions and loogie they'd been getting out of her were yellowish (ew! TMI! TMI!), so they're a little worried that she's developing yet another infection, or the old one is coming back.

ENOUGH ALREADY. JESUS.

10:00 UPDATE

Um, not better. In fact, back to satting in the 70s. (Raspberry -- 100% oxygen means that the air she's breathing is basically all oxygen. The saturation level is a measurement of the percentage of hemoglobin carrying oxygen. It should be in the 90s.) Since she's already getting only oxygen, there's no turning up the machines or anything. Which is why they're suctioning to remove physical barriers, and they just changed her trach to make sure there was nothing blocking the tube, and they've given her morphine and Versed to calm her down and try to help her relax so that she isn't needing more oxygen than necessary. Also, they're giving her antibiotics now -- they're not bothering to wait for the results of the culture.

The doctor should be calling us back by 11 to let us know what's what.

11:00 UPDATE

So. Her sats are now up to 84. They no longer think it's a shunt at work because she's oxygenating too well for that. Her blood gas was awful -- her CO2 was 163 or something, which means she's not getting the carbon dioxide out of her lungs. Right now, the guess is she's either clamping down (not a realistic bet, since she's so sedated) or the bleb is making trouble. They're going to put her under the paralytic again, and maybe go back to the oscillating ventilator (remember? from way back?) in the hope it would be better for gas exchange. Tom just paged Dr LR to get him involved -- it's a fellow calling the shots, and while I'm sure he's perfectly able... well, yeah. You'd all do the same.

12:30 am

We're at the hospital. She's paralyzed, on the oscillator, satting 93. But they don't have many more tricks if something else happens tonight.

Daddy-o

Guest Photog: Big Daddy

Jane had a very nice day today, and Tom, exercising some mad daddy skills, got her from 85% to 55% during his visit. Pretty slick, eh?

The really exciting news? Jane POOPED. I know, I know, the fabulosity of this blog has reached heights not previously dreamed of. The poor kid has just been so backed up. Three glycerin suppositories, two enemas, and Miralax have finally cleaned her out, thank god. And they're going to start her on a regular prune juice regimen. PRUNE JUICE. There's something so tragically hilarious about that. Prune juice. I don't know, maybe I've completely lost it, but that's making me giggle. Good grief. I need to go to bed.

Very Special Guest Appearances, Part The Second

More visitors? Can it be true?

Yes! And best of all, one of the visitors is an invisible reader revealed! I was delighted to finally meet the fabulous Sue, aka Raspberry. How cool is that?


Jane, displaying her usual acumen, LOVED her. They got in some good hand cuddles, and shortly thereafter Sue had Jane blissed out and under her sway by way of an excellent head massage. The woman has a magic touch, and I think the hospital should seriously consider putting her on staff as an infant sleep therapist.


And guess who else came over to play?


Sarah was unbelievably well-behaved. Granted, she's a pretty good kid in general and Awesome Nurse Alyssa was enormously helpful with the kid-wrangling, but she was a superstar today. (I told her just that while we were in the pumping room and she said, "Actually, I'm a superHERO!" Yes, you are. I think someone needs her very supercape.)

Sarah scored all kinds of loot from Sue and the lovely play lady and even the promised challah (holla!) from Awesome Rabbi Susan.

It was a very nice day indeed. Jane was just as well-behaved as her sister, and made her SIX MONTH BIRTHDAY as good as I could have hoped for.


You read that right, invisible readers. You've been on this ride with me for six months. SIX. MONTHS. SIX! Can you believe it? I mean, how that is factually possible is entirely beyond my ability to comprehend, so I'm not even going to try. Well, I guess Jane was actually, what, fifteen days old when I fired this thing up, and I don't believe five and a half months is a recognized anniversary anywhere. Not even Hallmark has a card for that. But the baby, the baby is six months old and holy cow. Who could have guessed this is how we'd get here?

Very Special Guest Appearances

Special Guest Stars in the house!


Awesome Grandma Susan!


And Awesome Nurse/BFF Angela! (I'm pretty sure Jane saw Angela and thought, "Where the heck have you BEEN?" But forgave her when she saw the rockin' onesies crafty Angela whipped up for her -- pictures to come, don't you worry.)

Mom hadn't seen Jane since HALLOWEEN. She's twice as old and twice as big. I mean that literally. Mathematically, Jane is now almost exactly twice as old and easily twice as big as she was then. Kiddo was weighed last night for the first time since she's been in Boston, and she's 5.5 kilos (that's 12 pounds, 2 ounces in American). But then she had an enormously wet diaper after getting some diuretics and an enema that finally did the job, and she's still swollen from the last week's excitement and treatment, so her actual weight is probably closer to an even 5 kilos/11 pounds. In October she was three months old and... oh, wait. I just looked back and she was nearly seven pounds then. Well, darn near doubled in size, anyway. Must you people be so particular about the details?

She started her methadone last night and wow, does that stuff work! They need to fine tune the dosage, though. Her heartrate went down into the 70s today after she got a some into her system. Two weeks ago her baseline when asleep was the 130s. Yeah. Good stuff, that.

I think Jane was really happy to have the company (as was I, as if the tone of this post doesn't make that clear), but she's still so sensitive that the excitement pushed her oxygen all the way back up to 100% toward the end of the visit (she was back down to 70 soon before we left and has stayed there since). But she's definitely making some gains: she doesn't need extra oxygen for normal cares (diaper change and suctioning and that sort of thing) for the first time since she got here, and she's moving around and watching everyone and making her likes and dislikes ABUNDANTLY clear. She wakes up for each shift change, and the nurses swear she's counting heads. They're learning -- you can't put anything over on our girl.


Those cheeks! Don't you just want to get in there and munch? My yummy little sumo girl.

Quiet

No news, peeps. They've tweaked Jane's vent settings again, and our poor girl had to have an enema today and gets another tomorrow (all that morphine + not moving around much = well, you know what it equals), but other than that, not much to report. Oh, her eye exam was this morning. I missed it.

And... that's it. I'm trying to retrain myself to be patient, but I seem to have lost the knack somewhere in the last week. If anyone finds an unclaimed knack lying around, please send it my way.

Big visitor day tomorrow. I'll say no more. Practice some patience of your own!

Fragility

Another quiet day for our girl. Her oxygen is still staying up a little bit, but of course she's still getting over whatever it is she's getting over. The pneumonia/infection/interstitial lung disease (ooh, new fancy term!). The nice thing today? She was finally awake for a while! Dopey, but awake, and reunited with her dear friend Binky.





She's starting to look and act a little more like herself. The sedation is still heavy, and she's still swollen from having been still for so long, but she's getting there.

I have to confess, though, I'm not at all feeling comfortable yet. I don't mean the setting, I mean Jane. She's just so much more fragile to me now than she's ever been before -- almost visibly teetering on the edge of a precipice. It's not clear at all to me whether she's really pulling back from that edge. These last couple of days have certainly helped a bit, but... I guess I'm just holding my metaphorical breath. (An unfortunate metaphor, but I'm sticking with it.)

A couple bits and piece of normalcy for you all to enjoy: I got to take Jane's temp and change her diaper today just like I used to do, thanks to New Awesome Nurse Alyssa. She's got an eye exam sometime this week (really! alas, no former Dr. Brusque and his awkward small talk will be joining us), and Immunology should start to weigh in with some of the results of the many labs they've ordered. Oh, and the effusive Dr R from up north called me at the NICU today! Isn't that wonderful? She'd found out through someone about Jane's pneumonia-or-whatever, and called me directly at the hospital to check in and find out what was going on. She was very relieved to hear about the improvement, and curious about the ventilation, and just generally her enthusiastic self. It was awfully nice.

And I got to meet one of the hospital chaplains today, who rocked. Funny and thoughtful and interesting, and she gasped in all the right places when I told her some of this story. She promised to bring some challah on Friday, so obviously she will forever be known as Awesome Rabbi Susan.

All right, invisible friends of Jane. Bedtime. Oops, no, one last pump first. (The hilarious nurse who is a primary for the baby next to Jane complimented me on my pumping yesterday and cracked up at my bad dairy jokes; I wonder how I can bribe her away from that other kid?)

Thank you for the support and vibes and prayers and everything. I think of the warmth from you all as the quiet breeze gently pushing Jane back from that awful edge. You're helping to hold her safe, and I thank you for that.

A Step Forward

Okay, I've rallied some of my inner resources and do not currently need to process any more scary awful information. YAY.

Here's what I left out yesterday. Wait, here's some of what I left out yesterday. Tom has gone back home and I can't verify anything. (But he is MORE THAN WELCOME to fill in the blanks -- be on the lookout for info in the comments.) The cardiologist went over Jane's echo and was happy that what she saw wasn't as bad as she'd feared. Jane's right ventricle is definitely struggling, but the whole picture is not worrisome enough to warrant more poking around just now. (I probably already mentioned this, didn't I?) Um, Dr LR was pleased that Jane is still able to respond to the interventions they've done and the medications they've given her. And it's a real plus that she's made it through the winter and flu season so far. He still has hope that he'll be able to help her. And some other stuff that is now beyond my ability to recall.

Fortunately, Jane is STILL off the paralytic (cisatricurium, for the pharmalogically curious) -- that's 33 hours as of nine o'clock this evening. Take that, Mr Doctor Scary Talk! Her oxygen is still a little north of where they'd like it, but it's the upper limit of acceptable (she's mostly in the 60s). They did need to increase her pressure a little this afternoon to keep her satting well enough to keep her oxygen reasonable, though (for the RTs who might be lurking in these parts, she's at 37 over 12, a rate of 23, and 0 on the pressure support of her natural breaths). Also, they were able to restart her feeds. They're basically priming the gut today and tonight (half an ounce over three or four hours); after that, if she tolerates it, they'll start increasing the amounts. She's got that NJ tube now, which goes past the stomach, so she'll be getting smaller amounts continuously. As Dr G, Jane's usual attending, said today, they don't want ANYTHING making trouble for her lungs. So they're taking the possibility of reflux and microaspirations out of the picture. (No breathing milk for Jane, in affect, thank you!) Oh, and she had a small blood transfusion today. Some fresh red blood cells to help her absorb as much oxygen as possible.

She did peep her eyes open a little this afternoon, but they're keeping her very heavily sedated for the time being.

So. Assuming Jane's able to stay off the paralytic and start taking in feeds, the next thing to tackle: weaning everything. Seriously. Vent support, steroids, nitric (again with the nitric!) and morphine. Here's a fun little tidbit for you. If Jane needs to be on morphine much longer, they're going to switch her to METHADONE. Yes, the very same drug the junkies wind up on to get off the smack. I am... this is... I mean, what do you say to that? Of course I want her getting manageable pain medication, but METHADONE? Seriously? I just... fine. Fine, bring on the METHADONE!

I just want her to be Jane again. She's so puffy and out of it right now that I don't know what to do or think. She held my fingers for a while today, and that was the most real connection I've felt from her in a week. But, hey, I'll take it. And be grateful for it.

A Very Special Bonus Post

It is my great delight to inform you all that Jane's six year old cousin, my niece and goddaughter, the fabulous TESS... lost her first tooth today! Being the excellent auntie I am, I shamelessly bribed her with a guest appearance on the blog so that she'd let her parents yank that sucker out of her mouth.

And here she is, gorgeously gaptoothed:


Isn't she a sight?

It was a marvelous evening of tension and anticipation and release and laughter and delight, and a wonderful way to end our day.

The Road Ahead

Tom made the drive down today, and we finally got to meet the illustrious Dr LR (formerly known as Dr Boston). He's an impressive guy. Smart, thoughtful, straightforward, dedicated. My first impression of him was excellent; I wish I could say the same about our first conversation.

It was not a happy talk, invisible readers. It wasn't ALL doom and gloom, but the rays of sunshine were pretty thin amongst a lot of dark clouds. He talked to us for about an hour (maybe? probably less, but it felt like an hour) about Jane and her prospects. Tom's takeaway was that there are still reasons to be hopeful about Jane. My takeaway? He was laying some thoughtful groundwork for a (potential) difficult conversation in the future.

Jane's got a lot of hurdles to jump before Dr LR will truly feel encouraged. The first one, the big one this week, is getting off the paralytic. I know, I know, Jane was taken off it yesterday afternoon. And then she went back on at three o'clock in the morning. Aaand then she was taken off at noon today. (As of 9:30 pm she was still off.) She's just having a hard time keeping her saturation levels up without it. Simply put, she's got to be able to do that for herself. Dr LR would like to see her off the paralytic in the next couple of days, or in his view it becomes a quality of life issue. QUALITY OF LIFE. He used that phrase not infrequently during our little face to face.

I hate that whatever happened last week (the pneumonia or virus or infection or whatever the hell was going on) happened. They're seeing her at just about the worst she's been. He was talking about how important it's going to be that we read her cues to figure out what she's trying to tell us, whether that be "I'm tired, I've done all I can." or "I've still got fight in me." And I'm sorry but I'm just not there. I know part of his job is to pave the way for us to deal with that kind of thing but WE'RE NOT THERE. JANE IS NOT THERE.


Invisible readers, friends of Jane, it is once again time to light the smudge sticks, fire up the candles, send out prayers and good thoughts and positive energy, and enlist the angels and saints and spirit guides, to help put our girl's feet back on the road home. VIBE ON.

A Little Eye Candy

I made it! That's right, I abandoned my hacking but no-longer-feverish kid to go hang out at the hospital next to my unconscious, paralyzed kid. Quite a pair, aren't they?

I'm happy to say Jane did have another nice, stable day. Her oxygen stayed at 40-45% when they weren't messing with her. Oh, and I got to see them mess with her! I mean, suction her! Listen to this: every time they suction her (every four hours, it turns out, not three), they detach the air tubes from her trach and bag her. (The bag is attached directly to the trach, instead of to a face mask.) While they're manipulating the bag, they shake her chest. And then they take the bag attachment off the trach and stick the skinny suction hose into the big old trach hole and suck out whatever they've shaken loose. I don't know how bizarre that reads, but it is a weird thing to witness. Happily for us all, they're hardly getting anything out anymore, and what little they do get is thin and white, like spit. Like it ought to be.

I spent the whole time there today waiting for them to discontinue the paralytic. I got there at noon -- she was still out. Knitted and chatted with Darned Good Nurse Tammy (oh, she's awesome, but I'm missing our Truly Awesome Nurses; these Boston gals are going to have to earn their own accolades) -- still out. Left to pump -- still out. Wandered down to the cafeteria for a snack (note to the hospital up North: they feed lactating mothers here. For free. Look into it) -- still out. Finally, at five o'clock, 1700 hours in hospital time, they stop the paralytic meds (Pavulon was what she originally got, for those keeping score, but they switched her over to something long that begins with a 'c', but as usual I have forgotten the name) and... nothing. Because Tammy gave her a big old dose of morphine and Versed before Jane went off the paralytic. I did NOT poke or pinch my child, but I did stoke her cheek and hair and hand for about 15 minutes. Alas, I am not Prince Charming, and Sleeping Beauty kept on a-sleepin'.

Tom called in later, and Darned Good Nurse Rachel said Jane did wake up a bit later in the evening and looked around before calling it a night. Her oxygen is up to 50%, but she's been tolerating all of this really nicely. And good girl that she is, they're finally going to start feeding her again tonight!

Since tomorrow's Sunday, I doubt they'll have lined up much anything for Janey. Sunday is Sunday, I don't care how fancy-pants the hospital is. Tune in tomorrow to see me eat my words!

Regrouping

Friends, I'm delighted to report that BOTH girls are apparently on the mend. Sarah may have kicked the fever that's been keeping me here with her, and Jane seems to be slowly turning the corner.

Let's see. Where to begin? How 'bout I just try to summarize? Jane had her echocardiogram today. The preliminary read is showing no worsening of the pulmonary hypertension (yay!) but we have to wait to see if it gave any evidence either way with regard to the PDA (boo!). It also showed that she didn't have something called a tricuspid jet (yay!) which is blood flowing backward and is caused by increased pressure on the tricuspid valve (which is between the right atrium and the right ventricle -- that ventricle is the chamber that has thickened in response to Jane's hypertension), but this means they can't use the jet to measure the pressure in her heart so they're probably going to use a cardiac catheter to see exactly what's going on in there (yeesh!).

She's still under the paralytic, but they're hoping to take her off it tomorrow morning, if she has a good night and her oxygen stays around the 60% level it's been at when she isn't agitated or undergoing a procedure.

The GI folks are going to be coming in to check out her system. In fact, maybe they already have. I can't remember for sure. I need to start taking notes when I'm on the phone with these people -- there's too much information for my squishy brain to retain. Anyway, they're all curious about that prolapse.

And immunology is being consulted with regard to the loose poops she's been having for, what?, almost three months as well as the thrush-y looking situation on her tongue that's been lingering for at least as long.

So, I have to tell you guys this wacky thing they do to Jane. Back north, they suctioned Jane whenever she seemed to need it -- mostly when you could feel or hear secretions rattling around in her chest or in the trach. Down here, and I think it's because she's been kicking up so much gross junk lately, they do this wild suctioning they call "pulmonary toilet cleaning". For real! They do it every three hours, and it involves giving her a nebulizer treatment, shaking her chest to loosen up the crap and then running a catheter (coated with lidocaine) into her lungs to vacuum it up. So gross, and yet kinda cool, right? Right? Am I alone in this?

So, that's basically it. If Jane comes off the paralytic they'll be able to restart her feeds (she's on an IV right now) but they're thinking about putting in a different line from the NG tube we've all grown used to. What they're considering is an NJ tube, which just gets the milk deeper into her system so she can't spit any of it up and accidentally aspirate some of it.

Okay, so that's it. Tom's coming down tomorrow, and maybe I'll finally get a chance to see our girl!

And thanks, everyone, for all of the concern and encouragement and love. I keep hearing about all of these people, all over the country -- hell, all over the English-speaking world -- who are pulling for Jane. It chokes me up whenever I think about it. So quit it! Quit trying to make me cry, you amazing cheerleaders! Sheesh.

Footloose and Photo Free

Let's just jump right into it, shall we? Our girl had another rough night last night (still more of the same -- no need to fret), and the team realized that most of Jane's troubles seem to stem from her own initiated breaths. She did fine with what the vent was doing, but when she tried to breathe for herself it sort of tripped her up and led to more desats, so they decided to take Jane's work out of the equation. How can they accomplish such a thing? They PARALYZE her. How 'bout them apples? So she's getting IV fluids and nutrition through her new central line, as well as a drip of the paraylitc and Versed (a sedative specifically for patients on ventilators) and morphine.

They were planning on going ahead with the cardiac consult this afternoon, starting with an echocardiogram. I will, of course, let you know what comes out of that when I find out.
They cultured some of the mucous from her trach, and it looks like she may have a staph infection. Ugh.

Amazingly, wonderfully, she was doing better when I called this afternoon than when I spoke to the doctor this morning. They've been able to wean her oxygen down to 60% when they haven't needed to bump it up for suctioning or when she desats. After many weeks of favoring her right side, she's happier on her left, so they're letting her hang out that way. I brought in her beloved Birdie yesterday, which I'm hoping is giving her some much-needed companionship while I'm unable to be there with her.

"What's that?" you say. Yeah, well, looks like Sarah's caught herself her very own bug, with a fever and a cough and sleepless nights. So I'm hanging out with her rather than adding to Jane's already heavy plate. (Jane's cultures came back negative for influenza [and, so far, everything else, except the staph], so at least I don't have to freak out about that.) So no pictures today. I don't have any Awesome Guest Photographers helping me out yet.

Speaking of whom, I have to tell you guys that Stellar Nurse Angela drove all the way to Boston to surprise me at the hospital today. Can you beat it? Of course, I wasn't there. But it was such a boost to my spirits to hear from her (and listen to her try to navigate the streets of Beantown on her cell phone with the GPS bleating in protest in the background). I'm extremely happy to have Jane at Boston while she deals with all of the crap being thrown at her, but I don't think it's possible she'll ever have nurses that begin to match her truly awesome crew back north.

Unsettling

Invisible readers, my head is awhirl. EVERYTHING IS DIFFERENT HERE. They do things so differently down here -- from bagging Jane when she "desats" to 85 to keeping track of the numbers of bottles they give me for pumping. The whole spectrum of experience is completely other. It's been a bit of a rough adjustment for me, to be honest.

I'm not the only one having trouble with the change. Our girl's been having a tough time settling into this new environment. Is it the stress of the change? Is it a worsening of the BPD? Or is she dealing with something new? Aaaaand the answer is C! Something new! A little something we like to call... PNEUMONIA.

Oh, fer Chrissakes. Seriously? Yeah, seriously.

She's probably been brewing it for a while, but it has raised its unwelcome head now, and these new docs are pretty certain that that's what's been going on these last 30 hours. They're getting ready to put a central line in RIGHT NOW to give them better access and allow them to administer drugs more quickly, etc. Tom talked to the nurse and she was all, "Jane's very sick," and he talked to the surgeon (who will place the line) who was all, "Oh, she's totally stable. Yes, she's very sick, but she's totally stable." 100% oxygen + pressure support like we've scarcely seen before + pneumonia = stable? That's some weird math.

Okey-dokey, then. Pneumonia. Well, to be honest, it was pretty much just a matter of time before she really got it. As you may recall, she's had pneumonia scares in the past, but it's been quite a long while. So now it's really come.

What next, Boston? WHAT NEXT?

Swimmingly

(Photos by Awesome Nurse Jessica)

I don't think today could have gone much better.

How 'bout that for an opener?

Seriously. For all my fretting and worrying, the transfer was as smooth as Jane's own cheek. From what I was told, she slept most of the way. The trip took about two hours and fifteen minutes (practically no traffic! in Boston!). I wish I could have been there to see her all strapped in. I don't know if she got to see anything of the outdoors or if she was awake to feel the cold January air. But it really doesn't matter. Awesome Nurse Jessica and Awesome RT Fitzy got our girl there in fine shape and YAY.

My Awesome Sister drove into the city with me to help me figure out the lay of the land and thank GOD. I am such a country mouse. This hospital... I mean... it's gargantuan. Ginormous. People, it is really really big. Ten stories of people and technology dedicated to nothing but making sick kids better.

There's a library. There are laundry rooms. There are therapy dogs in the halls and funky art on the walls. It was amazing. Overwhelming. I had no idea.

So we wandered in, found the NICU on the seventh floor, went back to the main floor to get a truly atrocious photo ID made (not being modest here -- it's awful), explored a little, and went to Bertucci's for lunch (behind Fenway -- it was SUCH a Boston moment). Afterward we met up with a friend from our lovely, comforting and familiar hospital which I used to think was so big and impressive (her son was transferred down a couple months ago for similar issues to Jane's), and she showed us around.

Jenny and I went back to the car to drop off some stuff we'd been lugging around (the fancy-pants Boston hospital has its own pumps -- WHO KNEW?) and then... JANE ARRIVED.

I had to wait in the hall for approximately two years before they had her settled in. I have the sniffles (again, dammit) and was afraid they weren't going to let me in. They're a little more hardcore than our friends up north. But they did (with a mask, of course), and there she was, and she looked GREAT and the transfer team that came down with her was all smiley and happy and it was such a relief to have those worries come to nothing.


Tomorrow? Who knows what tomorrow might bring. Jane's safely tucked into her new bed (see above: a little white crib just like the one Awesome Nurse Kristy took her out of this weekend, ahem!) and for now all's well with my world.

Beantown

We're here! Well, Sarah and I are. Superquick stop at the hospital to drop off milk (can you believe they were out today of all days?) and pick up the last of Jane's stuff and we were off to Bahston. Jane was chilling on the playmat with Awesome Nurse Bethany, so the girls got to really play together for the first time. I don't know how much Jane enjoyed it, but Sarah got a kick out of it.


Tomorrow (TOMORROW) is on like Donkey Kong. As of 3:00 EST Jane was to go down in the ambulance (I know). I now officially have a bone to pick with our otherwise groovy hospital. Awesome Nurse Kristy had VOLUNTEERED to come in on her day off to be able to travel down with Jane and make sure she had a familiar face with her. And they're not letting her, supposedly because they don't want to pay the overtime, BUT they would have been happy to pay her the very same overtime (and more of it) to work a full shift on the floor.

Rotten, bureaucratic, heartless bastards. They'll pay a full overtime shift to have a nurse on the floor for babies too young to see her, but they won't pay her for a partial day for a baby who knows her well and DOESN'T LIKE STRANGERS and is on her way to a scary new place.

THANK YOU VERY MUCH, PENNYPINCHERS.

I'm outie. Big day tomorrow. First on the list: reacquainting myself with driving Boston's charmingly unnavigable streets. Fortunately, my amazing sister has taken time off work to accompany me to the hospital. Friendly faces -- Jane's not the only one who needs 'em.

This And That

Quite a packed day today.

First, the girls and I spent the morning doing this:

Okay, okay, we weren't exactly voguing, but the volunteer photographer did come in again and for once I was able to get there in time for it. I should have the photos tomorrow to present for your viewing pleasure.

Afterwards, while Jane did this:

Sarah and I did this:

Jane woke up, and Sarah helped her with this:

For a little while, Jane looked like this:

But then she started to do this:

And as Sarah and I walked out the door, she was doing this:

And that was that. It was a pretty nice day.

"Wait!" I can hear you all say, "What about the medical stuff? What are the doctors saying? What's the haps?"

Well, to be honest, the doctors are all holding their collective breath (hmm, perhaps not the best analogy in the present circumstances) while we wait for Boston. Which is happening... TUESDAY. Barring weather issues, etc. And it looks like she might be getting a helicopter ride! Barring weather issues, etc.

So I've been scurrying around like a crazed squirrel, gathering this and laundering that and packing packing packing. I took down most of the photos from Jane's bedspace today, and I've packed up almost all of her personal belongings, except for clothing. Tomorrow is a Biggish Day for me and Sarah -- we're heading down to Boston tomorrow so I can be waiting at the Big City Hospital when our girl swoops in on the Actual Big Day.

I admit it, I got a little teary taking down Jane's photo gallery. Except for the hour during which she got her CT scan and, of course, her actual birth, she has spent her entire life in that unit. Five and a half MONTHS. I'm going to miss all these people more than I can begin to express. Of course Jane's coming back, but saying goodbye to Awesome Nurse Kristy today really felt like we were saying, you know, Goodbye.

I'm going to wrap this thing up so I can pack this laptop (yay technology!) and, for tonight at least, that will finally be that.

Chunky Monkey

I was realizing down at the hospital today that it's been a while since you've all seen the whole enchilada that is Jane. Behold! Nearly eleven pounds of delectable chub:

Jane and I got some snuggles in, although the breastfeeding didn't happen. We tried, but she just wanted to suck her pacifier. I tried letting her go with the paci for a while and then pull a switcheroo, but our girl was not deceived for more than a moment. She fell asleep shortly after I finally left her alone.

Later, Sarah got her little mitts on her sister. It was sweet and all, except for the part where Jane got all fidgety and started waking up and her oxygen went from 48% to 70%.

She had a pretty good day, no real spells (she did have one moment where she desatted and needed 100% oxygen to come up, but it only lasted for a minute and her oxygen went back down quickly). She was playing happily in her (big*) crib when we left, batting her toys and watching herself in the mirror.

Poor kid doesn't have a lot of reserve right now. She just needs to rest and regain her strength, but the one thing Boston is probably not going to be is restful. Exams and tests and strangers all up in her grill. I'm going to be honest here. I'm a little worried it's going to be hard on her. And here's an awful thing to have to say, but I hope they sedate the hell out of her. I want her to be stressed as little as possible, and maybe I'm underestimating her resilience here, but DRUGS. LOTS OF DRUGS.

* When we switched out the cribs yesterday, Donna was betting that they'd be switched back before the weekend was over. I do believe it was the very first thing Kristy did when she came on this morning.

Under A Spell

Girlie's got herself a new crib -- same space, but a teeny little bed. The hope is that this little crate of a bed will let the nurses put her in a position that helps keep her more flexed and less splayed out but still lets them work on her easily. There is so much SPACE around her now. It's pretty rockin'.

What's this? Could it be... maybe... just a teensy hint of... A SMILE? Oh, I think so. She was smiling at Dr. R the other day, and Cute Nurse Martha (who was shadowing Awesome Nurse Donna today and played with Jane all morning). I think I got a little smirk, but poor Donna's still waiting for something besides a skeptical eye brow lift.

Ah, contented girl.

But all is not cute and almost-smiley in Janeland. No, no. That would be, like, easy and comforting and stuff.

*deep breath*

Okay. Have we talked about BPD spells yet? I don't think we have. Oh, wait -- remember that awful day when Jane clamped down? The bronchospasm thingy? She had the first one on the 30th. That was what people call a BPD spell. So, it seems that kids with BPD often develop these episodes during which the oxygen level in the blood goes WAY down, and they need big fat oxygen support and sometimes medicines and sometimes have to be bagged to get the air in until they can breathe on their own. You know where this is going, right?

Jane's been having them. Not every day, but she did have two today, and it suuuuucked. Really, really sucked. People, she turns BLUE. And CAN'T BREATHE (but her heartrate was steady as a rock, thank god). So, why now? And what's the trigger? No one knows. But I have a theory about some of these episodes. Jane was in my lap when she had her second spell, and this is what I saw:

Jane gets nebulizer treatments every six hours (sort of like mega asthma treatments). Twenty-five minutes after she should have gotten the treatment (the RT was busy with a tiny new baby), I noticed she was breathing in what would have been a wheezy way if you could hear it -- she was clearly working to push the air out, and she started to desat (the oxygen level in her blood went down). A few minutes later, she started to cry, and desatted more -- Donna, of course, was increasing her oxygen all the while. And then she turned blue, with her sats in the 60s (I think they dipped down to the high 50s briefly), where they sat for a while. They gave her TWO nebulizer treatments, morphine and ativan and she came up and was lovely for the rest of the day.

I think her anxiety sent her into the spell. Almost like a panic attack, more or less. I think that when she felt her chest tightening she freaked out because she knows that chest tightening leads to not breathing = bad. But how do you tell a baby how to relax so she can breathe and feel better? Let me tell you, holding a pacifier and stroking her head did NOT do it.

So Dr. Google... I mean, Tom and I have been feverishly researching BPD spells and their causes and what they're symptomatic of and how to deal with them and and and...

We can't wait for her to get to Boston. Fresh eyes, fewer assumptions (you have no idea how many times I've heard "Oh, that's just Jane" over these past 170 days). I don't want to slag on her doctors. We just need some new ideas, new ways of thinking. Bring it, Boston. Bring it ON.