Mad Love

The holiday season has barely begun, and we're already awash in the generosity of friends. Today, if you can imagine, we were surprised with (yummy) gingerbread men from Kelly, tunes from Miciah and Ann, baby clothes from Meredith, and a freezer-full of goodies from Kathy. Wow. Just... wow. We were overwhelmed by the thoughtfulness of these amazing women. Thank you all so very much!

Down to the hospital, Jane and I had a quiet little day. She spent a good part of her awake time chilling with Birdie, her BFF.

She multitasked, practicing poking out her tongue while gazing adoringly at her buddy.

But being pacifier-free is always a temporary state. I stood by her bed with my hand spidered over her to keep her busy hands and mouth occupied. Finger jiu jitsu!

I brought down my laptop, hoping to knock out the Christmas cards. I'm sure you can all guess exactly how well THAT went. Which is to say, it didn't. Because as soon as I took my hand away, our girl pulled this face:

SO unfair. What am I supposed to do with that puss pouting at me?

The one snippet of news: Jane did NOT have her trach changed today. The ENT surgeon was out sick. The nerve! The man better heal fast, because we are ALL getting tired of waiting for this thing to be changed out. We can't do a thing with her until it's done. Kiddo hasn't had a bath in over a week, and those of you who have experience with babies have a pretty good idea of the funk that's wafting off Miss J. And she hasn't been allowed to sit up, or lie on her belly, or (worst of all) be held in all this time. It's no wonder the poor kid is agitated. She's BORED. Time to get this girl grooving!

Oh, speaking of which, did I tell you I made a playlist for Jane last night? I played some of it today, and the results were decidedly mixed. The Beatles, Apples in Stereo, Bob Dylan and Cornershop are all IN. Dan Zanes, David Bowie and Elvis Costello, tragically, are OUT. I tried Velvet Underground's "Sweet Jane" (as if I had a choice), and I'm choosing to think she was gassy at the time.

All right, kids. Time for me to throw in a load of laundry and hit the sheets.

Thanks for everything.

Best. Conversation. EVER.

Tom certainly lucked out today. After being thoroughly traumatized by Friday's programme, he had the most reassuring conversation possible with the current attending, the amazing Dr. R. She's truly incredible, always upbeat and optimistic. Boy did we need a shot of that.

She simply thinks Jane is doing great. Period. She pointed out that Jane's still recovering from surgery -- a period that can last two weeks (hey -- no one said that before!), and that most kids have a really crappy time during that period (wait a minute, that's news, too), and that Jane is actually doing fabulously well considering what she'd just been through.

Well! That certainly puts a new spin on the week, doesn't it?

And shockingly, she was saying stuff like she doesn't want Jane home before Christmas because of staffing issues. Staffing issues are what are going to keep her at the hospital past Christmas? Staffing issues? I mean... seriously?

Well, if you say so, Awesomely Optimistic Dr. R. But my brain's not quite wrapping around that one.


Bonus photos from Jane's latest glamour shots session!



I'm out. I've got a Christmas card to cobble together, people, and the way this project is going I'm going to wind up with Jane's head very poorly photoshopped onto a snowman or something similarly awful and inappropriate.

Respite

I am extremely happy and relieved to report NO NEWS.

Here's the current thinking on yesterday's, ahem, "spells". So, the second clamping down was clearly the result of the water getting into Jane's lungs. The first, the one earlier in the morning, had no obvious cause BUT Awesome Nurse Adrienne did notice that somehow some milk had gotten into the suction catheter. (In the picture below, and by the way: BELLY, the suction catheter is that multi-colored thing to the right of Jane's face that looks like it's encased in Saran Wrap -- it's used to get any gunk Jane's trying to work out of her lungs [mucous, loogies, etc.].)

The catheter is a closed system; the only way for food to get in is if it's drawn up from airway. Which means it's getting down into her airway after she spits up. Which, you know, BAD.

Awesome Respiratory Therapist Lon realized all this, and concurrently realized that there may be a simple solution (please, god). The tube in Jane's trachea has a little cuff around it that can be inflated or deflated as necessary to fine tune the fit. If it's inflated, in theory it should block anything from getting down into the airway from her throat. So he pumped it up and so far, no more episodes. Yes!

The ENT resident came up to check on Jane and said that a longer tube wouldn't help with the spells, so let's hope the cuff does the job. On Monday, the surgeon will come up and do the first trach change (the trach will be changed weekly from here on out; the surgeon does it the first time and checks to see that everything's healing correctly). He's putting in a different, more flexible tube, and I'm hoping that might make Jane more comfortable; it'll bend as she moves. The new tube lies differently than the old set up did, so I think that's one of the things that's throwing her a little bit. Her whole life she'd had a tube lining her airway in a particular way and goes to sleep one day, wakes up and finds everything changed? That'd be tough on anyone.

She spent most of the day sleeping today. Her breathing has been fast, she's breathing hard when she's awake, and her heart rate is uncomfortably elevated unless she's snoozing, so I'd just as soon she stay sleepy. Today she wouldn't fall asleep unless she had her pacifier AND was holding my finger AND I was stroking her head.

I'd accuse Jane of being high maintenance, but the poor thing did just have surgery. She can have as many treats as she likes until she's feeling better.

It's hard to say how she's feeling right now. She's definitely agitated when she's awake. Is she in pain? Just uncomfortable from the new situation? Struggling because of the lobe? All of that? I sort of think yes, to all of it.

In less consequential news, I was trying (mostly unsuccessfully) to get a handle on the dumping ground that is Sarah's playroom the other day when I found a picture of Tom as a baby.

Quite a resemblance, don't you think? Tom's parents, after visiting Jane earlier this fall, said as they were leaving, "She could have been one of our babies!" It wasn't until I saw these pictures side by side that I understood what they meant.

Vocab

Well. That was a hell of a day.

I took Sarah to her pediatrician this morning. Amazingly, he gave her a clean bill of health (sort of, but that's not really relevant). I dumped that kid at school so fast she said goodbye to the dust cloud kicked up by my tires.

I may or may not have broken another land-speed record getting to the hospital, but if I did that would be a BAD EXAMPLE to set for any nieces or nephews who may be reading this blog and obviously I would NEVER condone that sort of behavior, etc.

I arrived to fine Jane awake and playing with Awesome Developmental Therapist Thea, who said that Jane might get the chance to start trying to breastfeed as soon as she's stable. When that may be is an open question. I'll get to that.

ANYway, Jane was just beautiful, watching me for a solid twenty minutes until she slowly drifted off while I rubbed her belly. She even smiled! It was lovely. Tom and his colleague Gary (hi, Gary!) showed up on their way home from a conference in Boston, and shortly thereafter we got a vocabulary lesson (sorry, Gary!).

The term? "Bronchospasm", aka "clamping down." Here's the definition from the very useful website, Aaron's Tracheostomy Page: "Generally it is a reversible tightening of the muscles in the airway, causing narrowing and blockage of the airway. If gone untreated, it can threaten the life of your child."

Yeah. So, it seems that what happened was that some water got into Jane's lungs from her vent tubes (the air is humidified, and water can pool in the tubes) and her airway clamped down to keep the water out. Which it sort of should do, except that it takes a while for the airway to relax enough to get air in, so she desatted (blood oxygen level went down) from an excellent 95 to a horrendous 41 and bradyed (bradycardia -- the heart rate goes down) from the maybe 160s to the 30s. Bad bad badbadbad.

They had to bag her (you know, manually inflating the lungs with the squeeze bag) and turn the oxygen all the way back to 100%. She turned blue before they got her back. It SUCKED.

And it turns out it also happened at 6:00 this morning.

Now, there are kids with BPD who clamp down but most of them have been doing it all their lives. Jane had never before done it in her life and now, four days after getting the trach she does it twice in 12 hours? NOT a coincidence.

So Tom just called down and talked to the nurse practitioner. They think changing the trach tube to a slightly longer one may help. Unfortunately the ENT surgeon isn't available tonight, so Awesome Nurse Leeza needs to keep an eagle eye on our girl until morning. Amazingly, the NP didn't really think of the clamping down as directly causally connected to the trach until he pointed it out. I'm just really really glad he made the call.

Fortunately, she's resting really well and has been since the, um, "episode" this afternoon. Her oxygen was back down to 37% within the hour, and her heart rate went back to normal almost immediately.

I would so much rather be studying for the SATs again than learning this kind of vocabulary, I can't even tell you.

Milk Run

What happens when you're hardly able to visit your baby in the hospital? Well, aside from the many emotional things, eventually they run out of milk.

Sarah and I piled into the car and drove down to deliver a cooler's worth. A smallish cooler. It's not like I showed up with a full-sized Coleman ready to tailgate in the nursery.

But I was able to see our girl for about (let me check the official records...) seven minutes. Really. Sarah was able to get back there only because she's been on antibiotics, but wasn't allowed to hang out. So we dumped the cooler, grabbed my pumping stuff since the timing worked out, and spent twenty minutes in the pump room. Back into the nursery to drop off the goods and snap a couple quick pics before we were on our way again.

Two-plus hours of driving to spend twenty-seven minutes at the hospital. TOTALLY worth it.

On the ride back home, Sarah was drawing in the car. I asked her to make a picture of Jane, expecting to get something resembling a portrait of unravelled yarn. Instead, she surprised me with this:

I'm sorry, but that is just precious. That's right, PRECIOUS. A word I NEVER use. But come on! Her first picture that looks anything like what it's supposed to be and it's her baby sister? There is no other word for it but precious. But the best part is that where it's colored in under the head? That's Jane's neck. She drew the trach!

Well, I was impressed.

As for the real-life baby, Jane's doing pretty well. Except for, ugh, the bleb. Yup, the damn lobe is bigger again. Probably just from the surgery -- I mean, Jane had to be flat on her back for days to let her neck heal, a position that wasn't doing that lung any favors. She was acting a little fussy so they did some blood work that showed a high white blood cell count and another something or other that indicated high levels of inflammation. Uh, surgery? Remember? People get all swollen? And uncomfortable? Ah, right. SO glad they bothered drawing blood. So they're paying attention to her positioning and keeping a close eye on her various statistics, checking the twelve-hour trends to make sure she isn't slipping back toward a scarier place lung-wise. But she's still acting normal, and her respiratory and breathing rates are perfect when she's asleep. It's just when she's awake that things get ramped up.

Oh, Jane. You're just not satisfied unless you're mystifying the doctors, are you?

Another Early Post? Wha?

I can almost hear you thinking, "Am I in the right place? What blog is this? Who's in charge here?"

Not to worry, invisible readers. You're in the right place (assuming you're here to catch up with Jane; if not, WRONG NUMBER). Since I can't get down to the hospital (why are three year olds so grody with the germs, anyway?) I've got Jane's crew working hard for me.

I called down this afternoon, and Awesome Guest Photographer Kristy dove right in with the cute. "She's being so social! We've been reading to her and she's cuddling her bunny and watching Birdie and she LOVES the paci, she's keeping it in all by herself and..." Thanks, Kristy. How 'bout you twist that knife while you're at it?

Oh, I kid. I hate not being there, but I'm so thrilled to hear how well Jane's doing. As Kristy put it, "She's a whole new woman!"

Her oxygen levels have been great (hasn't gone above 40%), but she's fighting off the naps. Silly girl doesn't want to miss out on a thing.

Her heart and respiratory rates were up a little earlier today; probably nothing going on, but they took an x-ray (which she did NOT appreciate) just to check the lungs. I'll let you know what they have to say.

Oh, and did I mention? 18 weeks today! That's 5 weeks, adjusted. Does Jane LOOK like a 5 week old to you? Of course not. She's totally gifted.

Cheeky

While Jane sleeps, how about we just ooh and aah over those cheeks, that rosebud mouth for a little while?

Tom made the trip down today, where Awesome Nurse Kristy reported that basically everyone on the floor stopped by Jane's bed to oogle the adorableness. Can you blame them?

No news. She's doing great. Great blood gas, good oxygen levels (Kristy got her down to 28 or 29 -- hear that, Angela?), just good all around.

Now go on back and feast your eyes a little longer. That's all I wanted to do today.