Mind Games

Jane, Jane, Jane. You're just messing with us at this point, aren't you?

The doctors tried to reduce Jane's nitric setting last night (or this morning, I'm not clear on the timing), and, as is now usual, she did NOT like it. Swoop! Right back up to 20 ppm and 100% oxygen. But Awesome Nurse Karen was totally positive about how Jane was doing and how great she looked, yadda yadda, everything just excellent except for that pesky lung issue.

Tom was not happy to hear about the return to 100% and decided to go down to the hospital. In the meantime, she steadily worked her way down the settings, and when he arrived, ta da!, she was in the 70s again. She was at 72% when he left. The nurses are all convinced that he's her lucky charm, since she seems to do better when he shows up at the nursery.

So: new strategy! Jane gets to receive as much nitric as she wants for as long as she wants. (Great, docs, just spoil her rotten, why don't you?) Since there aren't any significant side effects from the nitric (that I know of, but I'm not googling), there's no real reason to wean her except that that's what they do. Preemie on medication? Wean her off it, STAT! Seriously. That's just what the doctor told Tom today. Maybe not in those exact words, but still. She, too, emphasized how unbelievably well Jane is going in every other respect, so that part isn't just the nurses putting a positive spin on the situation. She hasn't been on the floor in a while and kept saying to Tom how gorgeous she is. But then, you invisible readers knew that already.

In straight-up, unqualified good news, she keeps on gaining weight. Packed on nearly another ounce last night. She's gained enough that they're upping her feed again, to 17 ccs. (There are five ccs to a teaspoon, if you're curious about what that means in normal volumes.) It's totally working; she's getting chubby. For real! Check it out: a double chin!

Those are Awesome Nurse Karen's hands. I realize none of you invisible readers know her, but it still gives a sense of scale, I think. Oh, and she's not posing for Munch there. She's just taking a break from picking at the adhesive that keeps her breathing tube support in place. She's such a stinker about it. On Friday (I think -- whatever day it was that I got to use the fancy-pants oscillator chair) she pulled out her feeding tube three times in a row -- twice mid-feed, dumping the entire contents of her bottle all over her isolette. Joel, the cagey veteran on the respiratory team, is not thrilled by this development.

As further evidence of her growth, she went up a size in her diapers (okay, that was a while back, but I thought I'd mention it anyway, just because as a parent, it's such a big, obvious marker for how big your kid is getting -- plus, cute!) and she's going to be getting a bigger airway tube when she's more stable and at lower oxygen. Which they have to paralyze her to put in. Um, less cute. But good, despite the scary.

10 pm update: she's back at 100% again, and night nurse is going to suction her lungs and is also pushing for the airway change now. Uh, really? Even though the whole lower oxygen level, keep her stable for a while first thing isn't exactly happening right now? I, um, yeah. Don't know how I'm feeling about that. It makes sense (bigger airway = more air), but they tried paralyzing Jane a couple nights ago (WHAT? yeah, we just found out about that) and her heart rate went way the hell up.

Ugh. Not thinking about it right now. My brain went off duty about 20 minutes ago.

More Better

The three of us made our weekly family trek to the hospital where, miracle of miracles, Sarah was almost pretty good most of the time. She didn't get to go to the playground (at the hospital) because of all the waiting for the doctor and/or nurse practitioner and hardly whined at all and amused herself by lounging across my lap on the "tall chair" (the one high enough to let her see into the isolette). She had picked out a book for Jane yesterday -- Is Your Mama a Llama? -- which we read repeatedly. Jane seemed to like it a lot. She high satted the entire time I was reading to her.

Jane had a good night last night and a pretty good day today. Her oxygen was down in the 50s and 60s last night, mostly in the 60s and low 70s today. They still don't know if she's got pneumonia, and the cultures aren't showing much. Again. Because that would be easy and if there is one thing Miss Jane is not, it's easy. (Let us hope this remains true for her ENTIRE ADULT LIFE. Okay, I don't think I want to think about my 5 week old's potential future sex life anymore. Ewww!)

We had a chance to talk with the attending briefly (see: waiting, above) and he simply said "Jane is complicated." She hasn't really done much they've expected her to do. He also said he was "personally devastated" by this downturn, which is not exactly what you want or hope to hear from your kid's doctor. I had to leave to take Sarah for an ill-timed trip to the bathroom at this point in conversation. PERFECT. But, um, yeah. She's not easy to treat, she needs slow and gradual change, and they're treating her with so many things at once that they're not sure what exactly is working when she shows improvement. Well, then. Thanks for the talk!

On the plus side, she's still gaining weight (3 lbs, 2 oz last night), she still looks and acts well, and she's being weaned off the morphine (which they used to wean her off the fentanyl) with no ill effects, for an exciting change of pace.

Sarah and I are home for the next two days while we wait for her daycare to reopen. On Wednesday she starts PRESCHOOL. Can you believe it? In the meantime, if any of you invisible readers have questions about Jane or the ICN or other aspects of our shiny new life, ask away!

Maybe, Maybe Not

Slightly better day. At one point Jane was down to about 70% oxygen, although as of 9 pm she was up to 80% again. Sounds like she was on 100% briefly, but tonight's Awesome Nurse got her back down again by flipping her on her belly. She does like sleeping on her stomach, but as my sister pointed out yesterday almost all of us on my side of the family are side/stomach sleepers, so she comes by it honestly.

No real changes are being made in Jane's treatment, and there's a chance that she hasn't got pneumonia at all -- that her white blood cell count is up only because of the steroids she's been on.

You'd think they'd know whether someone has pneumonia or not. I guess I always assumed that with a significant disease doctors would have a definitive way of determining whether you've got it or not. But no. And, of course, nothing is easy with preemies. A little googling (what did we do before Google? I can hardly recall those dark ages. Did we all have well-thumbed reference libraries? Or did we sit around idly wondering about things?) um, what? Oh, right. Dr. Google tells me that preemies are particularly hard to diagnose because (1) the symptoms are the same as so many other things preemies frequently have, (2) there are several kinds of pneumonia, and (3) it's easy to get false positives (from common microcritters in the nose and throat) and false negatives (because the infection is to deep to swab).

Awesome Nurse thinks Jane simply looks and acts too much like a healthy kid to have an infection. Haven't we heard this song before? Anyway, barring any major changes tomorrow, Jane is going to be left alone treatment-wise until Monday when the team will reconvene to brainstorm. She also said that when they have a really hard time figuring out what's going on, they'll bring in the infectious disease people. Well. Huh. That would be something, wouldn't it?

Rollercoaster (Say What?)

Apparently last night's "she didn't like it very much" was a bit of an understatement. She didn't like that would-be penultimate nitric wean AT ALL. In fact, she disliked it so very much that's she's right back where she was last Friday. Back on 100% oxygen, back on 20 ppm on the nitric, back at the old vent settings. Jane's being a PAIN.

At least this time the doctors know exactly what's going on. She has no infection or other complication. Her lungs are slightly collapsed again. It's all the BPD.

Damn it.

I'm going to go watch last night's Project Runway and pump. (Ooh, there's an idea for a future post -- pumping. Must make mental note. Or reread this post.) Women pump and dump when they've had a drink. Maybe I can pump and dump my crappy mood.

10 pm UPDATE: Little Miss may have an infection after all. They did another blood draw, and her white blood cell count has doubled. Looks like we finally drew the pneumonia card. BUT the nurse practicioner pointed out that usually very sick babies don't have the internal mechanism to fight infection on their own -- there wouldn't be a change in the white blood cell count. So, the take away? Jane is sick. But she's fighting it, both on her own and on a brand! new! course of antibiotics. She's already starting to do better with her oxygen saturation, but is still at 100% on her oxygen intake.

And the rollercoaster keeps on rolling.

11 pm edit: for my husband's benefit (and maybe yours, but we won't tell anyone), "pump and dump" means to express breast milk and pour it, sorrowfully, reverently, down the drain. I wasn't really going to dump anything, but inadvertently spilled about 2 ounces anyway. A moment of silence would not be inappropriate at this time.

Support

So I thought I'd give you all a glimpse of what is keeping Jane going. Here she is in her little greenhouse today, blissfully growing:

Cute, isn't she? All cozy like that in her preemie straightjacket. (No, no, it isn't actually restraining her. Preemies like boundaries; the straps keep her tucked in without overheating, and she can still stretch out against the fabric.)

Now, take a gander at the hardware:

Whoa. I'll try to get a better photo tomorrow when all the lights are on in the nursery, but I think you get a hint of what's going on here. The machine on the far left is the oscillating ventilator. The next machine is the nitric oxide ventilator. Then we have the isolette containing three pounds of baby. It has its own display screen and settings. Behind that were four different pumps, each the size of a paperback (she's off all those as of yesterday). And at the very top of the photo, my friend the monitor.

Did you have any notion? It's amazing. And it's all accompanied by beeps and dings and alarms and whirrs and shuddering (that last would be the osciallator -- the thing is loud).

Let your mind take all that in for a moment. That's modern medicine's answer to the placenta. I think we owe that undervalued organ a little respect.

***

We had another good day. Jane's oxygen was in the 50s and 60s while I was there, and had been in the 40s during the night. They're almost done with her current steroid regimen, so they're going to switch her to an inhaled lung steroid called Pulmicort, which is frequently used for treating asthma. She'll be on this one for as long as she's on a vent. And they're going to give her another round of diuretics to get more of the edema out of her lungs. Lungs lungs lungs. This will be my world for years, I tell you. YEARS.

Wanna know something cool? I got to be the first mom to test their new chair that they're trying out. It was originally a cardiac chair, but that department didn't like it, and the ICN scooped it up. They intend to use it specifically for holding babies on oscillators. It was pretty comfy, actually, but it had no armrests. Even a three pound baby gets darned heavy when you have nowhere to prop your arms.

Tom just called down. Jane's still doing well, but they tried to wean her from 2 parts per million of the nitric to 1. She didn't like it very much (she didn't flip out, her oxygen just went back up). She'd been on 20 last weekend, and has moved all this way down without undue fuss, but didn't like this tiny little change. This better not be a preview of how she feels about moving from, say, her crib to a big girl bed in a couple of years.

Braaaaiiinnns! part 3

Good thing we had the refresher course on bleeds yesterday. Because today, my dad's birthday (the person Jane is named for), we learned that the swelling in her brain is GOING AWAY!

Yes, that's right, I'm doing a virtual Snoopy dance in celebration of my daughter's tiny little recovering brain. Mock away, invisible readers, but even the middle-aged, Southern-gentleman attending physician was doing a jig over this news. Finally, after a whole day of being reminded about it, we can once again forget about her hemmorhage! Only in a good way, not because more pressing concerns have bumped it to the back burner.

But wait, there's more! They've successfully begun to wean her off the nitric oxide AND they were able to bring down one of the vent settings very slightly. Her oxygen was in the 60s and low 70s all day, with high sats (= happy baby with lots of O2 in her blood).

Jane still has a long way to go with her lungs, but dude. This is good.

In celebration of that, here's an embarassing mom moment for your enjoyment. There's this woman on the staff who is sort of a parent relations coordinator something or other (no, that is not her actual title). Anyway, she's sponsored by the March of Dimes and has weekly or so gatherings for ICN parents where they've done things like learn infant massage or Reiki or make scrapbook pages and mini photo albums. Things like that. She kind of guilted me into coming: "Hi, I don't know if you remember me, I saw you when Jane first came in, we haven't really had a chance to talk and I've noticed you've never attended one of our events, and there's no pressure to come, it's not like I take attendance, but you might find this fun and relaxing and I REALLY hope we see you there." Oh, geez. Fine, I'll go, but I'm going to be curmudgeonly about it.

We made shirts. Be kind.

Sarah's "shirt" is going to become a nightgown. It would fit me, even in my bulgy post-partum state. Thank god she's three, she actually is excited about this thing, and may very well wear it until she's ready for college. It's THAT big.

Not a bad day, eh?

Baby steps

Tom and I walked in to the ICN this morning, and saw Cute Nurse Angela and Respiratory Therapist Tim huddled over the isolette and our hearts leapt into our throats. Oh, god. What now? We drew closer to find... they were making prints of Jane's hands. They were CRAFTING with our kid.

(Angela cut out the reject prints for me -- she has plans for the best one. [Sheesh, these nurses!] Grandmas, never fear. They will appear in some form in your mailboxes by or before Christmas.)

After too many days of scaring the bejesus out of us (and pretty much everyone else), Jane is finally doing better. Her chest x-ray this morning showed continuing improvement in her lungs, and her oxygen levels were in the 60s for most of the day. The doctors seem to think it's a result of the steroids they started over the weekend. She's slowly being weaned off the nitric oxide they started on Friday. And in addition to the 16 ccs of milk she gets, they've added a couple of supplements to boost the calories in her feeds and fatten her up like Wilbur the pig. And they finally, FINALLY, decided to give her a day where they did not mess with her vent settings. THANK YOU.

We did have our sit down with the attending, and I'm glad as hell that we weren't talking with him earlier. He very painstakingly went over where things stand with Jane's two issues: her bleed (remember that? yeah, we sort of forgot about that, too), and her lungs. We did get a more nuanced view of what had happened with her bleed -- his final word on it is that she had a Grade 3 IVH and has post-hemmorhagic hydrocephalus. Which we pretty much already knew. We were both sitting there dying to tell him to just skip to the lungs through the whole brain discussion. Who ever thought we could be so cavalier about her brain?

As far as her lungs go, as I said last week, she definitely has BPD (the formal diagnosis will come in four weeks, when she's at 36 weeks) and what they're focused on is finding a point where the balance between healing and damage tips toward healing. There is a question of how she'll respond when the steroid treatment stops, but for now the strongest point in her favor is how well she's doing with her feeds. Nutrition seems to be the single biggest factor when it comes to recovering from BPD, and as I've said repeatedly, our girl knows how to eat. The best thing about the conversation? Planning another meeting three weeks from now. No one was planning anything three weeks out two days ago.

We're not at rainbows and unicorns yet, but things are looking better in the ICN. I wouldn't even put us at sunshine and ponies. More like a sunlamp and gerbils. But hey, I'll take it.

A Little Something For All Of You

Pretty!

Everyone feeling better? Excellent!

So, no real change for Jane today. She was back on 100% oxygen this morning, down to 70% when I left at 4 pm, and is back flirting with 100% again tonight. She's still slightly collapsed in her right lung, but her afternoon x-ray showed an improvement over the morning's film. BUT all of her labs are back in and there is no sign of infection anywhere (yes!) and they've taken her off the antibiotics and antifungal. They'd taken her feeds down just slightly over the weekend, from 15 ccs to 14, because of the extra liquid she was getting with the medications. Now that she's off some of the meds they're putting her back on full feeds, which are now 16 ccs and she's scarfing it down (woo-hoo!). Why the bump to 16? Well, they determine full feeds by weight and Jane now weighs...

THREE POUNDS! Can I get an amen?

Except for the whole breathing thing, she's doing really, really well. It's absurd. She's completely baffling the nurses and respiratory techs, because she looks so perfectly healthy. Seriously! She's pink and active and looking around and eating well and gaining weight and responding really well/tolerantly to every. single. thing. they do to her. (Um, except when they try to tweak the ventilator settings down. She is not a fan.) In fact, she does so particularly well when they have to lift her and move her around, the resident today thinks she needs preemie aerobics. Swear to god, that was her term. She compared Jane's behavior to a post-op patient -- often they feel awful when they're lying in bed but feel better as soon as they're made to get up and walk around. Her theory is that when Jane's moved around a lot it forces her to take deeper breaths, so her oxygen saturation goes up. Hey, I'm up for it. I'll lift her all day if they'll let me. I'll knit her a tiny track suit for her workouts if they think it'll help.

So, there you go. We have a meeting tomorrow with the attending physician, which was set up before things got shifty. We were supposed to be talking with him about the long view; I'll let you know what really goes down.

See-saw

Things are teetering here. Jane's pretty goddamned sick and the doctor Tom spoke with today was very honest. They simply don't know if she's going to make it. They also don't know that she's not. They don't yet know if she's fighting an infection or pneumonia along with the BPD, and they don't know if her lungs will recover quickly enough to surpass the damage the vents are doing even as they keep her alive.

They weren't sure she'd make it yesterday. They weren't sure she'd still be alive when we got to the hospital, and I didn't know it until today. The doctor felt a lot better about her today than he did yesterday, but he told Tom she's walking a knife edge, and they're running out of tricks.

Yeah.

HOWEVER, she's doing better today than she was yesterday. Her oxygen level was down to 58% at 8 pm, most of the labs have come back negative for infection so far, and the doctor thought today's x-ray was an improvement over yesterday's. The night nurse, who also had Jane Friday night, said she looked much better and was resting well. And one of the best bits of news is that she's responding so well to the change in the vent settings -- they're fine tuning the pressure settings, and she's doing really well with where they've got her. They're able to keep her lungs open without overdoing it.

The doctor pointed out to Tom that the architecture of her lungs is constantly changing, in good as well as not-so-good directions. She's constantly scarring and healing. They've seen a lot of kids recover from this. Babies are tough little things, and you just can't predict how any particular baby will do.

She's fighting hard, our girl Jane.

The Steroid Era

Welp, we had a slightly better day today, though it didn't start off that way. Jane was on 100% oxygen all night and much of the morning, and the doctor Tom spoke with in the morning before we left the house admitted that they're concerned about her. But when we arrived, they had just started her on another, longer steroid course. This time, instead of the five day short burst, they're doing seven days with a more gradual easing-off. One of the theories being floated is that Jane was taken off the last course too abruptly, so they're going to try again with that in mind. You'd think they'd want to go easy on a preemie with this stuff, but what do I know? I'm just a parent. (Also, interestingly, the same doctor Tom spoke with this morning also suggested that what Jane is dealing with may be, in her words, "their fault", as far as their manipulations to keep her lungs inflated enough without overinflating go.) Anyway, within half an hour of her first dose, her O2 needs went from 100% to 70%. Let's just hope this doesn't show up in her future Olympic drug-testing. I hear they're getting pretty sophisticated with that stuff.

The doctors, frankly, have no idea what the hell is going on, so they swabbed and sampled pretty much every fluid and orifice Jane's got to see what, if anything, grows from them. I don't think they messed with her ears, but I'm pretty sure they got something from all of the rest of her. She's on the nitric that was so helpful yesterday, steroids, three antibiotics and an antifungal (just in case, since, like I said, they don't know), plus she's back on the fentanyl (the sedative) to help keep her calmer. So she's got two IVs in, one of them in her scalp, and four (or was it five?) pumps pushing the goods into them. Poor smidge. But Tom called down before dinner and Awesome Nurse Michael said she's still doing well, and he'd got her down to 60% but then turned her and had to go back to 65%. But he's hopeful that her lungs are opening back up. [News flash: Tom just called, she's still at 65%, and the night nurse said she's doing just fine.]

The doctor did say she's encouraged by Jane's appearance. She just doesn't look or behave like a sick preemie. Her color is good, she's moving around and opening her eyes, and she's still eating well. Also, she'd had a good blood gas right before the steroids kicked in. The night nurse mentioned she's getting a break tonight from additional testing. They can be compassionate sometimes.

I just want to say to you, invisible readers, how much we appreciate how supportive you've been. This isn't easy stuff to read (especially these last few days), and you'd be getting a somewhat sugar-coated version if I were speaking directly to you. So I hope you keep sticking with us through it all. I don't know when it's going to be all rainbows and unicorns around here again.

More Crap

Tom had his first solo shift at the hospital today and it was a doozy.

Jane has been diagnosed with bronchopulmonary dysplasia, or BPD (more here: http://kidshealth.org/parent/medical/lungs/bpd.html). We knew it was coming, and here it is. According to the head nurse practitioner (who is the only one who doesn't put the smiley spin on shitty news) Jane is on the severe end of the spectrum. The fact that she's still eating so well is good news: she needs to grow to beat this thing -- there's no cure except growing new lung tissue to compensate for what's been damaged -- and severe BPD kids often have digestive issues. So at least there's that going for her. And she doesn't have other, exacerbating problems, so that's good, too.

There's a kid who is NINE MONTHS OLD who is being released tomorrow (with a trach, on oxygen) who has severe BPD. Nurse P said Jane is NOT as sick as he was. Yay.

The cagey veteran (to use Tom's term) of the respiratory crew was far more blase about all this than Nurse P. Tom bluntly asked if this was life-threatening, and he was all, "Nah, she's fine." (Nurse P, in her reassuring way, answered the same question with "She doesn't have us in a corner yet. Yes, it can be life-threatening, but we still have options." But Tom's dad very wisely pointed out that if anything were really horribly wrong, the doctors would have been looking for us, and not letting us just chat with whatever staff was around.) On the other hand, the cagey vet wasn't far from her bedside all day. Jane had been on 100% oxygen and high pressure on the vent this morning, so he gave her inhaled nitric oxide, and within minutes her oxygen was down in the 60s and they were able to reduce the vent pressure settings again. Her lungs are still hyperexpanded, so as Tom was leaving they were going to give her her THIRD chest x-ray of the day. (No, I am not spending any time worrying about the radiation exposure. I'll get back to you when Jane's in her twenties, okay?)

As of this evening's phone call, there's a little collapse in her right lung. They tried suction out some secretions and changed her position in attempt to help, but instead it pissed her off and put her back on 100% oxygen, but they're going to start adjusting the O2 level back down. Oh, and she's been active and uncomfortable, so they're considering administering morphine orally to calm her without irritating her further with IVs, etc. Jesus.

So we've been freaking out in our bookish way today, parsing every word Tom heard today and looking BPD up in our various preemie books and online. Which is So Much Fun! We have learned, for instance, that there's a survival rate of almost 80%. Almost.

You know how, when you look up medical stuff, there's always this "majority of the time things work out beautifully, unless you're one of those poor bastards with X, Y and Z" caveat in there somewhere? Well, in Jane's case, she's got the X (respiratory distress syndrome) and Y (birth weight under 1000 grams). But Z (digestive issues) is not one of her problems. So we're batting .330. She could totally start for the Red Sox. Especially these days. And she's not all that much smaller than Pedroia.

Ahem. Anyway. Not one of our better days, I'm afraid. It's gonna be a long damn road.

Crazy-making

I had planned on taking today off from the hospital, but silly me. I went and ran out of labels for the tubes for the expressed milk. And the tubes. Whoops. So instead of doing as little as humanly possible, after dropping Sarah off at school I found myself back on the road. Crap.

There was something depressing on NPR and I forgot to put the audio books from my excellent neighbors in the car, so I rocked out to Led Zeppelin and the Rolling Stones for most of the trip. I was pulling in to the parking lot when, no joke, Britney Spears came on the radio. And because I have been to a mall in the last decade, I knew the song exactly well enough for it to be stuck in my head for the remainder of the day. Which it was. Crap.

So I get upstairs, check in with Jane, pump and return to her bedside. It is now noon. Awesome nurse of the day asks if I want to hold her today. Um, yes. Sort of the point of the trip. But I'm thinking I might make it a quicker visit today. I'm tired, I'm cranky and this is my view:

The monitor. How I hate it. Every time Jane desats (= her oxygen level drops below 85%), I watch the hateful thing, willing the level up. I mean that literally. I sit there, with my two and a half pound baby on my chest staring at this ridiculous monitor and trying to force the numbers up with my mind. Jane's oxygen (and carbon dioxide) levels have not been great. Today and yesterday, I spent an awful lot of time trying to mentally manipulate that damn thing. Crap.

What you can't see from the photo is that the lovely vinyl recliner Jane and I chill in entirely fills the space within the privacy curtains. ENTIRELY. Immediately to my right is the isolette, and immediately to the left is the curtain. I can see nothing but... ugh, the monitor. You simply can't escape it.

After about an hour with Jane I realized I was about to lose my mind. And the nurse (who truly is wonderful, I was not being at all snarky about her) was AWOL -- okay, helping with another patient -- because, you know, I'm usually fine. But there I was, stuck to and in a vinyl easy chair, watching these horrible numbers fall and rise and fall. When she did come back to check in, half an hour after the crazy began to creep in, the nurse said, "Jane does so well when she's with you. She's resting so well, and the secretions in her lungs really loosen up." Oh, go ahead and just twist that knife why don't you? How am I supposed to leave early now? Crap!

To maintain my sanity until Jane's 2:00 feed, when she was going to be disturbed anyway and it made sense for me to get her back in the isolette, I stared at the embroidery on the blanket she was wrapped in and thought about how I should have fixed it. Seriously, needlework saved me.

And, of course, this:

We just found out from tonight's nurse that she's been put back on the oscillator. I'm glad I got so much snuggle time in with her this week, and this may just be a one-day step back, but still. Crap.

Four weeks and two firsts

Let's get the science out of the way quickly so we can move on to the preemie eye candy.

Yesterday was Jane's, um, fifth? ultrasound. She still has hydrocephalus, but her scan showed no additional swelling and her head circumference hasn't changed. All of which is good, and no one's worried about her brain (for now, at this point, etc).

Her lungs aren't great, but she's still on the conventional vent instead of the oscillator, which is fine. Her lungs were hyperexpanded yesterday, so they came down in some of the vent settings and they're now where they should be. The steroids didn't really resolve the whole fluffy stuff issue, but the medical types have assured us that they were at least somewhat helpful. Still, the main thing with the lungs is that they will heal eventually. It's just a matter of when. So, we wait. Some more. For like months.

She's officially up to full feeds as of 4:00 this afternoon. 15 ccs! That's three whole teaspoons for our competitive eater in training. So far, it's definitely working for her -- she's up to 2 lbs, 10 oz, which is about an 11 ounce gain over her birth weight. And it's one of the things the doctors are happiest about. The bigger she gets, the healthier her lungs will be. And preemies that are having really tough lung issues typically don't do well with feedings, so it's all very reassuring.

On to the fun stuff!

Yesterday, the night nurse must have been bored or something, because we came into the ICN to discover

Jane wearing her very first outfit! I don't know where they found the onesie, or who was bold enough to put that thing over her wobbly, intubated head, but she was pretty damn cute. She was swimming in that thing. See?

Dudes, that's the preemie size!

Another first: sponge bath.

She loved it. She lurved it. Both the nurse (who, I admit, did the bulk of the work, not being freaked out by maybe disconnecting something important and turning a fun experience into a visit to the third ring of hell) and I expected her to pitch a fit, and have her oxygen level plummet in silent protest, but she just opened her eyes wider than I knew they could open and took it all in.

She did take a little time to ponder the meaning of it all afterward:

Whoa. What was that?

Sisters

So, as I mentioned a while back, Tom thinks Jane looks like Sarah did as a newborn. I just spent an hour flipping through photos of the two of them, and I just don't know. Maybe it's too soon to see? The pictures of Sarah are from her first week, but I think the 3D ultrasound scan would be a fairer comparison. And of course, I don't know where it is. No one who has seen my house or car should be surprised by this.

So I put it to you, friends, family, and invisible denizens of the intertubes: resemblance or no?

Sarah:

Jane:

Well? What do you think?

Things Jane Can Do

See Jane yawn.



See Jane rest.



See Jane poke.



See Jane SMILE.

Multitasking

Call me crazy, but I don't think this is the first time I'll be doing this sort of juggling act.

Jane's central line is OUT. Thanks to her ability to down copious quantities of milk (an ability that will be very helpful in college, only probably not with milk), the medical crew decided to take out the line (you can see it in the photo from my post on the 14th -- it's the white doohickey and greenish tube in her chest). She's been doing so well they haven't needed it for anything but a little supplemental nutritional, um, nutrients. From now on, they'll simply add any extras to the milk. My little porker!

Her vent settings keep being adjusted down; we are on the road to CPAP, people. Awesome.

Kangaroo

We played at being marsupials today:

It was my third time holding Jane, the first time I had her on my chest. She slept on me for over an hour. It was, of course, divine. That tatted up little arm belongs to Sarah, who would have held Jane's hand all day if given the chance. She kept petting her head, too, while telling us all how tiny Jane is and what a good big sister she herself is. Tom's parents came up to visit (bringing a book for Sarah and a baby doll for Jane which Sarah has very thoughtfully offered to care for along with the rest of Jane's toys). Thanks to the CPAP earlier and Jane's head position today, they have yet to see her face in person. I promise that the baby we've been taking pictures is, in fact, Jane and not some random cute baby in the ICN.

A remarkable thing about kangaroo care: Jane's oxygen requirements had been around 50%, give or take five points, for most of the day. While she was on me, they went down to 37% (room air is 21% oxygen). If only she could be on me all day, we'd have her off the vent in no time.

I think there was some other stuff to report, but all that kangaroo care has driven most of the factual crap out of my head. Something about needing less humidity now that her skin is more mature. Whatever it was, it was good news.

Oh, and she did pee off that two ounce weight gain I mentioned a couple days ago. And then gained it back in actual weight the next day. See Jane Grow and Grow!

Fragility

Today was a rare event-free day. No ultrasound, no equipment change, no additional tests. (That I know of. Maybe they're messing around in there when I'm not hovering by the isolette. I mean, she is part of a preemie study. Supposedly they're just looking at her poop and maybe some blood when some is being drawn anyway. But we didn't go over the paperwork very thoroughly when we signed her up... Great, she's probably been cloned in some freaky underground lab in Hanover or something.)

Ahem. Anyway. She did receive a blood transfusion last night or early this morning. Here's how amazingly delicate her skin is:

You can see every vein. Her skin is so thin it's flushed red from the increased hemoglobin. I realize this photo doesn't show her color terribly well, but in person she looked like one of Tom's red cooked chickens. She practically glowed through her translucent skin, like a tiny fragile ember. In just three weeks, I've grown so used to her appearance that I'd nearly forgotten how delicate she is.

The other thing you can see in the photo? It's so cute I can hardly stand it. Can you guess? I'll give you a hint. It's just above her diaper, right next to her shiny silver heart monitor sticker. That's right, that little divot there. It's her belly button! Don't you want to poke it with your finger?

Or maybe that's just me. After all, I live with a three year old who spends 80% of her waking hours fiddling with her outie. The tendency was bound to rub off on me.

Taking the Day Off

No hospital visit today. Sorry, people, but I seriously needed a break from the drive. I'll be back tomorrow and promise to take advantage of any photo ops that come along. Sarah got the day off from "school" and we spent a lovely morning with dear friends at their new house. We drank lemonade and played on the swingset and played dress-up and had a fantastic time. It was totally like a normal day. I sort of remember those!

But never fear! We (well, Tom) have been calling in to check on Jane throughout the day, and this is what we've learned:

She was put on the conventional vent last night (yes!) and has been doing well. She gained another two ounces (sing it!). She was given a diuretic to help with the excess fluid (in general, and in her lungs specifically) and she's been peeing like a racehorse. I won't be surprised if I learn tomorrow that she's urinated away most of that weight gain.

Tonight's nurse (Pam, who I've met and is awesome [like almost all ICN nurses]) mentioned for the first time the fate of Jane's central line. Have we discussed the central line? I think I brought it up early on. Maybe not. Well, she'd been blowing her IVs every twelve hours or so, and three attempts to place a PICC line (long term IV access through a deep vein in the arm) were unsuccessful. So they had to go for some deeper access and put in a subclavial central line. Basically, they threaded a tube into a vein under her collar bone and just above the heart. I know. Anyway, it's been working out wonderfully, but it's also the primary risk for potential infection, since it's, you know, an opening into her body. But they're using it less and less because they're decreasing the nutrition she's been taking through it as she gets more and more breast milk, and they'll be able to add any necessary supplements to the milk. Once she's been on full feeds for a sustained period they'll be able to remove the thing. Just another marker to add to the list, and hopefully to cross off soon.

Another day under our belts. A good one.

Hey, speaking of the drive (remember, way back at the top there?), I'd love to hear any recommendations for audio books. I'm currently listening to Vikram Seth's A Suitable Boy and enjoying it but will need something new soon. Email, comments, Facebook -- your choice. Give me a shout.

Three weeks

Jane is three weeks old today and now weighs a kilo (that's 2 pounds, 3 ounces in American). In honor of her quiet attainment of these milestones, I have only this to say:

Aw.

More braaaaiiinnns!

And we're back to the science.

Today was Jane's fourth ultrasound. I'm going to stop counting soon, because the neurosurgeons are now involved and asking for ultrasounds twice weekly.

Why the neurosurgeons? Welp, it's like this. The bleed is now gone -- fantastic. But the swelling has increased and she now has PHH. That's post-hemorrhagic hydrocephalus to those in the know. Which sounds scary, right? But apparently it's not yet a big deal. Everyone's simply keeping a close eye on the action to see how things go. There's still every chance that the swelling will go down on its own. Or maybe not (but the brain and skull can deal with that up to a point, let's not forget, and then there are surgical options after that point). There's no way of knowing.

Speaking of which, we also had our meeting with Dr. R, the neonatologist who specializes in pulmonary issues (among other things). Jane's oxygen requirements are still higher than they're happy with, but she's starting to respond to the steroid treatment in other ways. Specifically, her heartrate is down, which is a positive sign. And the doctor said that there's still every chance that the inflammation in her lungs will start to go down. Apparently the "white fluffy" stuff she's seeing in the chest x-rays is the sort of thing that tends to respond positively to steroids. She was very positive about Jane's prospects, agreeing with us that she's a fighter. So, as with everything with this kid, we'll see.

She's up to 5 ccs at her feeds and doing well with them, which everyone's delighted with. The one thing that is going to help her lung development is growth. The bigger she gets, the bigger her lungs get, and the new lung cells are what will compensate for the damage she's sustained. So there you go. Fat baby = healthy baby.

Gifts

I'm not going to lie. The gifts we received today from Jane and Sarah's cousins choked me up a little. You all know what a tough cookie I am -- I don't get misty-eyed over any old trinket.

The bunny was made by Madeline, the poem written by Nora. Declan and his sisters gave her the blanket and a really soft, adorable outfit I forgot to photograph (sorry!). Here's the poem, for those who can't find their reading glasses (I'm not naming names [Mom] but you know who you are):

Jane
On a warm summer night
the moon shines bright.

the breeze so cool, all you
hear is a small cricket

her song so clear and
strong as she makes her
way in the world

the adventures she will take
wait in the world for
her, patient as she grows

The adventurous Cricket.


You'd have to be seriously cold-hearted not to be moved by that.

Thanks, Greenies.

ps: Sarah says she'll take care of the bunny until Jane's big enough to play with it. She's also "taking care" of the sweet Dalmation puppy/blanket from Aunt Maura. She's generous like that.

My toes

I've never been one of those people who can tell who a baby takes after. Unless it's screamingly obvious, in which case the parents tiredly tell me "Everyone says that", because everyone already has. I try, but really? Babies just look like babies to me. They don't all look the same, I just suck at seeing resemblances.

Turns out I'm even worse at it with preemies. Tom tells me he thinks Jane looks exactly like Sarah did when she was born, but I just don't see it yet. Maybe when she finally chubs out a bit, but for now, nope. But wait! There is one thing I can see: she's got my toes. My weird, formerly unique toes. There now exists in the world a miniature set of my lower digits: the second is longer than the big toe, the fourth is oddly bulbous at the end and curves in toward the third, the pinky hides a bit behind the fourth. But so small! Her entire foot isn't as long as my thumb. Her toenails are about as big as the end of a grain of rice.

We have a meeting tomorrow with one of the neonatologists about Jane's lungs. She was started on a short-term steroid course today to try to get her lungs in strong enough condition to decrease her oxygen settings and onto the conventional vent, and eventually back to CPAP. It's frustratingly ironic that the very technology that's keeping her alive is also doing so much damage.

Sarah was very sad tonight as she went to bed. She told Tom she wants baby Jane to come home. I had thought she accepted what we've been telling her, but it seems it didn't quite take. Or maybe she just thinks three weeks (almost) is damn well long enough. If anyone knows how to explain to a three year old that her sister has to stay in the hospital until November, I'm all ears.

Subjectivity

About that brain bleed. The advance from 3 to 4 isn't quite what it sounds like (unless it sounds like it's not devastating, in which case it's just what it sounds like). The part that technically qualified it as a 4 disappeared, and the doctor we spoke with that day said that she thought the bleed itself is actually a TWO. It's a ridiculously subjective thing, grading the bleeds. I don't think the various doctors have reached consensus on a single one of her ultrasounds. Sometimes I wonder if they agree on anything.

So, we've put aside for now the question of what's going on in Jane's noggin. The looming issue is actually lung damage from the ventilators. The lung damage will heal, it always does, but it can take until she's three to four years old to fully recover. She may have to be in the ICN longer than she otherwise would, and may come home with oxygen or some other breathing assistance. And she'll have loads of colds and be susceptible to flu and other respiratory issues for years. Naturally, she'll be coming home just in time for cold and flu season to get into full swing. Can we all agree not to discuss swine flu? Thank you.

Right now they're concentrating on fattening her up. She's up to 4 ccs of milk per feeding and in ten days they want her on full feeds (10-11 ccs per feed -- that about 1/3 of an ounce). She's already gaining weight -- she's all the way up to 2 lbs 1 ounce, the chubby thing.

The New Normal

In an overdue but much appreciated turn of events, we had a quiet day at the ICN today. Jane slept/rested the entire time we were there, looking very much like a tiny piglet: pink and slowly getting fatter. We had a quick conversation with the head Nurse Practicioner who had been less than optimistic during the chaos immediately following Jane's birth. Today she was praising everything about Jane, from her color to her movement. It was good to hear her New and Improved perspective.

Jane is still on the oscillating ventilator, but they're slowly decreasing the settings with an eye toward getting her back on the conventional vent as soon as possible. There is some question as to which ventilator does less damage, but I'll take whatever gets her back on CPAP (continuous positive airway pressure = a little extra pressure to help the lungs inflate, but otherwise breathing on her own).





Thanks to the lack of drama, we managed a little quasi-normal family time. Sarah and I read Beauty and the Beast with Jane. We ate lunch outside at a picnic table on the (really pretty) hospital grounds. Tom and Sarah played on the playground while I sat with Jane. If not for the greenhouse our girl inhabits, it would have been a perfectly normal day.

Braaaaiiinnns!

Today was Jane's third head ultrasound. See, when she was born she had this... episode. I still don't know all the details (honestly, I don't want to), but suffice it to say that when she was twelve minutes old (minutes, people; that's 720 seconds), she sort of stopped breathing. Doctors give preemies something called surfactant to help the lungs work, and Jane didn't like that so very much. She pulled through, but the doctors were worried that she might have had a cerebral hemorrhage in there somewhere. Turns out she did.

The first ultrasound, performed when she was about four days old, showed a bleed that the doctors initially classified as a Grade II intraventricular hemorrhage or IVH. (http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/hrnewborn/ivh.html is a pretty good cheat sheet on IVH for the curious.) This was a much better outcome than the doctors were expecting (or at least prepared) to see. But there were a few areas that they couldn't agree on.

The second ultrasound, performed a week later, showed that in fact there was some swelling caused by the bleed, which was now reclassified as Grade III. And there was this funny... spot? Shadow? Thingy? Again, there was no concensus on what this thing might be. But still, everyone seemed okay with what they were seeing, and pleased that the swelling was minimal (one doctor referred to the bleed as a "mild" Grade III).

Today, ultrasound number three. The bleed is breaking down as it should! The brain, it turns out, makes 10 ounces of cerebral fluid a day, and the fluid, among other things, carries the bits of clot away. This is happening as it should, but the clot is sort of clogging the drain. Jane's got a little swelling of the brain. Again, no one seems overly worried about it, and it should get worse (gah!) before it gets better. But babies being the cool little beings they are have very elastic heads. There's room for this kind of thing. Amazing. Oh, and that funny spot from the previous week? That bumped things to Grade IV. And yet, for reasons my overloaded brain failed to grasp, no one was disturbed by this at all. Mostly because it was gone, I guess. Out of sight, out of mind! (Ooh, bad. Sorry.)

Weekly ultrasounds and head circumference measurements to monitor the situation are on order.

It wouldn't have been possible a month ago to have calm, even relieved, conversations about my kid's swelling, bleeding brain, but such is the weird bubble that is the Intensive Care Nursery.

Coming next week: our first talk about Jane's potential long-term lung issues! Sucky as that is, at least we have the long term to talk about.

Inauguration Day

We couldn't be luckier to have so many people asking after our girl Jane, but it is darned difficult to keep track of who knows what. So, I have succumbed to the inevitable and started (*gasp*) a blog.

For those not following along at home, A (Possibly Somewhat Inaccurate) Summary of Events That Got Us Here:

I, Tia, mother of our girl Jane and our older girl Sarah, got pregnant without to do this winter. The due date was estimated to be Halloween. Then, after a little red-faced consulting of the calendar at the amnio, where I saw clear as day we were having a girl, the due date was bumped to October 21. (Close enough, especially since Sarah went to 41 weeks and a day.) But a week after the amnio, I started spotting. An ultrasound showed... nothing. Yay! Spotted again about a week later. We were told I had an incompetent cervix and we were dealing with a "threatened miscarriage". SHIT. Another ultrasound showed... nothing. Yay! But a few days later I started bleeding and went on bedrest during the last week of May, week 20 of the pregnancy. And there I stayed for a month.

Then came the fateful follow-up ultrasound at week 24. My amniotic fluid had gone down by 60% -- sometime in the previous week or so, my membranes had ruptured. I was admitted to the hospital and stuck there for the duration. Bum bum buuuuummm.

The duration lasted exactly three weeks. On July 22, at 1:40 pm EST, our girl Jane made her early appearance.

There have been lots of ups and downs in the fifteen days since Jane was born. My poor befuddled brain finally cried "Mercy!", and so I've started this blog to keep track of 'em all. I'm just thinking of all of you out there, really. You can thank me later.

Welcome to Our Girl Jane.