Jaws

No news, really. During rounds, I brought up the fact that Jane's been stable, really stable, for a week now and given that she's been doing so well, shouldn't we maybe take advantage of it and try to decrease her settings a little? I mean, I don't want to be pushy, but chop chop, people! Let's not just wait around here! Give the girl a break while we can, am I right?

So they made one little adjustment to one of her pressure settings. Sounds like they pretty much just want to let her sit tight until the bronchoscopy (Thursday), after which Dr. Congenial said he wants to devise a plan for Jane with steady, methodical weans of both the ventilator and the steroids. Sort of like what they did earlier to get her off the oscillator. Remember? The thing that worked great until they let the excitement go to their heads?

I'm NOT bitter. Really. Really!

Jane and I spent another three hours snoogling -- this time, kiddo got the benefit of 1) my lap; 2) the Boppy; 3) the rocker; and 4) the ever-present paci. It only took thirty minutes of the combined simultaneous efforts of the above PLUS me patting her bottom to get her from this:

to this:

She's exactly adorable enough that I didn't mind having my finger clamped in her gums for nearly three hours. (Any time I tried to remove it, she'd start to wake, and if she woke, instant WAH face.) I'll just say that kiddo's got some mighty strong jaws and leave it at that. Just another example of a mother's sacrifice. (If only you could see my pose of noble suffering.)

Oh, the excellent ENT doc called Tom tonight. Sounds like they generally don't trach a kid unless they're going to be on a vent for a minimum of three months after the surgery. Three months. Um, okay. That's... okay. I'm not going to hyperventilate just yet.

Miss Twelve Steps

"Hi, my name is Jane, and I'm a paci addict."

Seriously. The girl can NOT be separated from her pacifier. And god help you if you take away her mirror before she's good and ready. Awesome Nurse Kristy tried to warn Other Nurse Donna about it during the shift change last night. Donna apparently was all, "Yes, sure, okay, whatevs." Next morning? "Whoa, you weren't kidding." You take either of those two things away and it's instant (albeit silent) howling protest.

Still no changes to her ventilator, still doing well with her oxygen needs (mostly in the 40s when Awesome Nurse Angela isn't on -- I think Angela takes it personally when Jane's oxygen needs get over 50%; it's become her mission in life to get her to room air, and she's getting close).

After all of our work to get the doctors to respect Jane's need for slow change, I'm getting mighty antsy about the fact that she's just been sitting here for a week. I mean, could they be doing something to get her off the vent without needing to go for the trach? Are we missing an opportunity? I just hate that she's vent-dependent. I hate that they're going to have to cut a hole into her. I hate all the uncertainty around this. I feel like I'm going to barf whenever I think about it for more than twenty seconds. Or maybe that's just Sarah's leftover cheapo mac n cheese talking.

Anyway, if anyone has any definitive answers, I'm in the market.

A Very Special Guest Blog

We won't be heading down to the hospital on this rainy November day, so I give you a very special, very early, post courtesy of Our Girl Jane's own guest photographer: Awesome Nurse Angela.

"It is 11:05 she's been at this setting for about 35 minutes so I figured it was safe to send you the proof.

The vent picture came out pretty crappy, but she's at 30% and there and 28% on the INO.

 

This was so monumental I took 4 pictures of what was going on simultaneously before my eyes.

 

Jane's rocking it tonight for sure."

 

(That's Jane's monitor. The green number at the top is her heart rate, the yellow is her breathing rate, the blue is the oxygen saturation level in her blood [her best range is 90-96] -- right there is what a monitor thinks a happy sleeping baby should look like.)

(On the bottom of the screen, the tiny 30 on the far left is her oxygen setting.)

(28 percent, people. TWENTY-EIGHT! Remember, regular old room oxygen is only 21 percent -- she's only 7 points above that. A record-breaker since she was BORN.)

(The happy sleeping baby, just like the monitor told us.)

"Respiratory therapist Karen and I had wayyyy too much fun with your girl last night. Lots of snuggling and boppy time."

Whatever griping I've done about doctors and their messing with the vent and stuff, we have never once, not ONCE, been concerned about the care Jane gets. Her nurses are amazing people. They love her and worry about her every bit as much as we do. 

Yay for Jane's awesome nurses! I'm a little worried about how we're going to persuade them all to move up here when Jane comes home, but Tom's a pretty persuasive guy. I think we can make it happen.

Potty Time

Two of Tom's brothers are up for the weekend (hi, Dan! hi, Richard!) and I got up too damn early (bad kitty), so I'm going to try to make this quick. Quick-ish.

So. So, we had the first trach conversation today. Gah. It went well, really. I only cried once! Barring some entirely unexpected discovery of a blockage in her lungs that proves to be causing her bleb troubles AND a sudden dramatic improvement in Jane's progress, we are definitely trach-bound. Dr. Congenial said it's inevitable. Damn.

The ENT doc who performs these things was wonderful. He talked me through the procedure, explained the pros and cons, blah blah blah. Very calming, very easy to understand, and happy to call Tom and talk to him over the weekend. Can you beat it? 

It's possible Jane may only need the trach for a month or two. It's possible. It's also possible she may be trached for many many months. The important thing is that Jane's head and mouth will be unencumbered for pretty much the first time in her life. She'll be able to move her head at will. She'll be able to play with her mouth. She'll be able to EAT. She may even be able to breastfeed. I'll finally see her face. So. Yeah. I guess I'm coming around.

In entirely less weighty news, Jane's been having some intense diaper rash. They've been unable to collect any samples, so they decided to try to have her poop in some kind of container. I suggested they put it in the Boppy. Behold: preemie potty!

She put up with it really well, the good girl. Right up until...

And it worked! Hopefully by the beginning of next week they'll have a sense of what's been giving her bum such a rough time.

After all that she was due a little snoogle. Spent some quality time with her pacifier and practiced sucking on her tubes. Simultaneously:

And then was out like a light for the rest of the afternoon.

Huh. So, not quick at all. I just can't cheat you people.

You Take The Good, You Take The Bad

You take them both and there you have...

Just thought I'd share that apt little earworm with you all to set the tone, since it's tragically been in my head since we got the latest news. The consult from Children's Hospital is finally in, and it was without doubt a mixed bag. In brief: Jane will not be heading down to Boston any time soon. Her Acquired Lobar Emphysema (a point to Dr. Google!) is not currently bad enough to require surgery. (Yay!) Her BPD is so severe that it caused the bleb (instead of the bleb causing her latest respiratory issues) and the specialist didn't think she'd benefit from the surgery in any case. (Yoicks!) Yay for no surgery, but damn it for no quick cure. 

We haven't spoken with the specialist directly, but Dr. Congenial passed on the bulk of the report. The specialist did have a few suggestions for Jane's treatment, but it sounds like we just continue to stay the course. Keep her stable, and buy her more time. And I think the trach is now inevitable -- it's just a question of when.

Okay, then! Let's get to the cute, whaddaya say?

I held Jane for over two hours today. It was meant to be kangaroo-y (that is, more or less skin-to-skin), but our girl had her own ideas about that. She started out on my chest, got too warm and migrated until she was in the crook of my arm. She slept draped over my elbow for the better part of an hour.

After we got her back in bed, I went off to pump. I came back in to say goodbye, and what does she do? She makes faces! She bicycles her legs! She Houdinis her way out of the swaddle! She sucks on her blanket! She pulls out the stops on adorableness minutes before I had to go. 

Stinker.

Sweet Sixteen

Girlfriend's sixteen weeks old today! Can I get an amen?

So, we had an... interesting day at the hospital. We were able to speak with the cardiologist about the results of yesterday's echo and he was terrifically helpful. Basically, this enlarged heart thing is a direct result of the lung thing, and confirmation that her BPD is as severe as they've suspected. But he also said several reassuring things: first, that her heart is strong and working well; second, that her heart is adapting the way it should; and third, this IS reversible. If her lungs get better, her heart will, too.

Dr. Congenial thinks Jane might be best served by being transported to Children's Hospital in Boston. But we're still waiting to hear from them; they may feel that she's fine where she is. We just don't know yet. 

But the weird thing came after all that. Tom had done some research that suggested Jane's oxygenation is going to be really important to helping her heart work less hard. And when he brought it up, everyone was all, "Oh, hey! Good idea!" And when they changed the alarm settings, he apologized for increasing the work load for the nurses, and the Head Poobah Nurse was all, "Oh, that setting is floor policy for babies with pulmonary hypertension." Which Jane has. Which is confusing. Because no one had mentioned it until Tom's suggestion. Wha?

And then, doing more research at the hospital, Tom discovered (while looking at the Children's Hospital website) that the bleb-lobe thingy seems to have an actual name. Acquired Lobar Emphysema. And the resident hadn't heard of it. Which was weird. You'd think, if another kid just a couple of weeks ago was dealing with the Exact Same Thing, they'd know the name for it.

Anyway, it all bumped down our estimation of the hospital a notch.

But Jane herself had a quiet day. A nice snoogle, a bummer eye exam (Dr. Brusque is going to need a new nickname if he keeps up the new attitude) in which we learned Jane's eyes are getting very slightly worse, but aren't worrying yet.

So, the end result? We feel a little better about Jane after getting the info from the awesome cardiologist, and a little worse about the doctors after Dr. Google was coming up with stuff it feels like they should have been on top of.

On the way home, an outrageous sunset lit the way. My camera phone couldn't capture the gorgeousness, but trust me. It was incredible. People were stopping their cars to take pictures.

And then we came home to find this:

My amazing friend Allison, who just had a baby a month ago herself, left apples, fresh eggs and KETTLE CORN for us while we were at the hospital. And bead bracelets that her daughter, Sarah's best friend, made for us. And "a smile for You". Can you beat it? What a lovely thing to come home to.

New Item On The Agenda

Look who was all bright-eyed this morning!

Jane was quite the party girl last night. She stayed up ALL NIGHT LONG with one of her favorite nurses, the Awesome Allie. Really. ALL night. She took an Ativan-assisted nap for about three hours early this morning, then was up and happy and checking herself out in the mirror when I arrived.

She had an echocardiogram (she seemed to really like the Doppler noise -- it calmed her every time the tech pulled it up), and then we had a good long snoogle session (she pretty much passed out from all the awake time and excitement, and slept for about three hours) followed by a much-needed bath.

She was so damn cute today, I could have eaten her with a spoon. And this cardigan? Divine. (Thank you, Carolyn!)

So, about that echo. Turns out Jane has (hold onto your virtual hats people) RVH, or right ventricular hypertrophy. Really, universe? Gah. I'm almost too tired to be properly pissed off.

You know how certain kinds of athletes (like rowers) get enlarged hearts? That's healthy cardiac hypertrophy, and it usually affects the left ventricle. Some babies like Jane with severe BPD get pathological hypertrophy. Pathological, never a good thing. Basically, her heart's having to work too hard, and the muscle in the right ventricle is getting too thick, shrinking the size of the chamber.

There are experimental drugs that may or may not help. Nitric (yes, our good friend nitric) seems to help. But really, the only thing that can for sure help is for her lungs to get better. Healthy lungs = less stress on the heart.

So off we go for another, ahem, conversation about our girl. Another discussion in which they will almost surely tell us that time and good nutrition and managing the vent so it causes as little damage as possible are all keys to getting her better, blah blah blah. We're definitely heading for a trach. I don't think there's any way she'll be home by Christmas.

I'm going to take a bath now and then hide under the pillows.