A technicolor loony.

We had a really good meeting with Dr. Clawson yesterday. After getting stuck in traffic for two hours (overturned tractor-trailer, but no fatalities. Just dellllaaaaaaaaaaaaay). At least it was all on the news so they knew we weren't lollygaggers.

Okay, we *are* lollygaggers, but not yesterday.

Long story short? Charlie is getting a G-Tube. BUT it was still a bad idea when she was at JHU.

Remember the list of reasons I had for her not getting a G-tube? The fact that she was gaining weight, wetting her diapers, not dehydrated (I'm not sure if I listed that one, but it's important), that sort of thing? Well, since she's been back at Winchester, she's been gaining a little then losing a little, then gaining a little, then losing again. Nothing terrifying, but she hardly ever loses weight. And she's been throwing up lately, for no reason they or we can discern. So she's getting even less nutrition, and they can only give her so much at night (she gets food on demand during the day, then over the pump at night, to make up what she didn't take). And she hasn't been wetting her diapers as much, meaning that she's heading toward dehydration.

Why not just keep her on the OG(oral-gastric)tube? Well, for one, she absolutely hates it and has hated it from the moment she noticed it. She fights when it's put down, she tries to pull it out, she always pushes it as far out with her tongue as she can. It isn't torture, but it's pretty damn close, given that this has been down her throat (as her nasal passages are too narrow) pretty much since birth. It's irritating her throat, possibly causing her reflux and could be one of the reasons she's throwing up. Because when she throws up, the tube comes out with everything else (and it may not be. It might be a total mystery forever if there's no firm medial reason, 'cause she's two and a half months old, so it's not like she'll remember once she's old enough to talk).

We were going to have her on the tube at home, but there's a very real chance of the tube moving up (or Charlie pulling it partially out) and her aspirating the food into her lungs, which will cause pneumonia. Talk about the *last* thing she needs.

But she simply won't eat enough by mouth. Dr. Clawson hypothesizes that having the tube down her throat the majority of the time (though now they take it out during the day, so half of the majority of the time) is making her not wanting to have *anything* in her mouth at all, period. She'll still take some from her bottle, but usually not much. And the later it gets, the less she takes. Apparently, she won't eat at night anymore. As in *refuses*. And none of us know why. Sure, sometimes it's 'cause she's sleepy, but not all the time.

If she could start solids, this would be so much easier. But she's at least a month and a half from that, and that's just using the time Sammy started experimenting with solids.

I hate this idea. Jeff hates this idea. The doctors hate this idea. But, it's the best of a small handfuls of ways to get nutrition into this child.

The meeting was amazing in its difference from JHU. There was the doctor and two nurses who knew Charlie well. We each got a chance to talk, and nobody tried to talk us into *anything*. This was presented as the best option, but Dr. Clawson said that if we wanted to continue with the tube feeding, she would certainly do that.

She said that when she was trying to decide something like this, she treated the case as if the baby were her own child. I was thunderstruck. Because one of the things my mom had said was that, when my Boomps was meeting with a doctor to figure out what to do wrt his lung cancer, the doctor offered an option and my grandfather said "If I was your father, would you still think {option} was a good idea?" The doctor said yes, and so Boomps did it. The fact that she said this before I'd even started to ask this question helped me so very much.

I still don't want my "doesn't even weigh as much as the sack of potatoes we buy at Costco" sized baby to have surgery. And if I think about it for too long, the idea of them cutting into her makes me cry, just like the idea of her having the surgery to correct her stenosis made me cry.

But, this doesn't feel WRONG the way it did at JHU. I am humiliated by the fact that Jeff and I were talked into this at JHU, even if it was for less than an hour. I don't know that I'll ever forgive myself for that, even if we didn't get to the point where we signed a consent form. But this time? It's big and it's scary but it's also okay.

Right now, this is what she needs. Partially to get enough nutrition into her so that she doesn't get uber-dehydrated, lose weight and be generally miserable. And partially because if we keep ramming that tube down her throat, the oral aversion she has now is going to grow to the point where she'll pretty much refuse to take *anything* by mouth. That would suck so badly for her (and wouldn't end in babyhood). It wouldn't be a picnic for us either, but this is so very much about Charlie. She's gone through so much in her short life, and if this will help her eat, help her *want* to eat and bring her home, then this is what we're going to do.

The plan is, once she's got the tube, that she'll eat by mouth whenever she wants and we top her up at night. Once she doesn't have to deal with the tube down her throat, we're hoping she increases what she takes by mouth, and eventually, she won't need the G-tube any longer.

So. Sometime this week or possibly next week, we're off to UVA. Dr. Clawson & the hospital have a really good relationship with them, she trusts them and she's going to tell them, flat out, that we've pretty much tried everything to get her to eat and if they want to try for a day or two, fine, but *Only* for a day or two at the most. That she's there for surgery, and if they don't plan to do it, don't accept the transfer.

Have I mention how much I like Dr. Clawson? Dr. Lee rocks as well, but I've had more contact with her. Oh, and she knows the pediatrician we picked out and says she's really good. Yay. :)

Also, both the doctors have expressed their frustration with JHU. But, at least they didn't return *their* calls either. So it wasn't just that they hated us...apparently they hate everyone. ;)

Sam's spelling? Kind of exploding, in a really good way. Why, you ask? Would you believe the chat feature in Dizzywood, and talking to her dad and I via Windows Messenger?

There is a rule that she can't use an abbreviation or acronym if she can't spell the words involved. And we're talking about the difference between "your" and "you're", that sort of thing. It's really, really nifty. It was what I was hoping would happen, and I'm so glad it did.

~~~

I miss Charlie terribly. I haven't seen her since the day before V-day. I know I did the right thing, but it's still utterly depressing.

I know that she's at the good hospital now and that they're working with us to get her home asap, but it still feels like she's never gonna be here. It's been so bloody long. And I work so hard not to think about that part of it, because I'm tired of crying and I'm tired of feeling so hopeless.

Who's have thought bringing my baby home would be so difficult?

On the good side, still not my fault. The stenosis was something that could only be discovered once she was born, and nothing I did/didn't do could have created or prevented it. Well, okay. I could have not gotten pregnant, but that seems drastic.

The whole "I'm to blame for all the problems of the world, especially those in my family" thing? Yeah, so not new. I can't actually remember when it started, but I wouldn't be surprised if it turned up when I was thirteen or fourteen. And then, when I woke up in the ICU, it was gone. My extreme guilt about the universe had vanished.

I think it was because, when I woke up and found out Charlie was alive (and was Charlie, rather than Danny) and I was alive, even though (some of) The Worst Things had happened, then all my guilt and all my superstitions seemed ridiculous. And amazingly, they haven't come back either.

~~~

I finally got my mp3 player recognized by my computer! I've only had it for two (maybe three) years now. I appreciate Jeff being so kind in letting me hijack his to put music on my player, but it's so nice to be able to do it myself. And now that I can reliably change stuff as I like, I can finally use it for audio books. Yay!

~~~

A week or so ago, popfiend (who is truly nifty) asked for love stories. I told him one, and have been thinking it belongs here. So...here.

A short love story.

Charlie was born mid-afternoon on December 10. I woke up around five in the morning the next day. Jeff was at the hospital from the time he took me (and Sammy, but she went home with my mom sometime on Thursday) to the ER to the time we were both awake (he slept in the waiting room) and he saw me. He came by later, so we could watch CSI together.

About twenty minutes after the poor guy went home to finally get some sleep, I started to have one hell of a time breathing. I'd had breathing problems all day. Part of it was the anesthesia leaving my body and part of it was the fact that I couldn't stand the oxygen masks. They eventually gave me a cannula (the little clear tube one wears in the nostrils) and I got used to that. But on Thursday night, it felt like my entire inside was swollen (that's the best description I've got). I told the nurses and they said it was the anesthesia and that it would get better eventually.

But right then, I wasn't able to take a deep breath, and the oxygen wasn't helping. So, I called Jeff, waking him up (we live fiveish minutes away from that hospital) and asked him to please come back, because I was scared and panicking.

He did. Which was so kind. I mean, I would have understood if he didn't or couldn't. But he did.

And once he got there, I was able to breathe deeper and stop feeling like I was going to die. It didn't fix everything, but him sitting at my bedside, holding my hand and talking about goofy stuff helped me breathe better.

I knew he loved me, but that was amazing.

~~~

Oh, in other news? We lost the dvd player. Seriously.

When we were putting stuff in the van for the trek to B'more, I implusivly grabbed the dvd player (and remote), 'cause I figured we could hook it up to the tv in the room. We did that in 2002 with our vcr. Unfortunately, the back of the tv had a cover on it, and we couldn't get to the connectors, and there weren't tvs in the rooms at the Children's Home (which totally sounds like an orphanage).

When we were moving out of the hotel, we almost forgot it, but I grabbed it when I was doing the last scan of the room (it was on the top shelf of the entertainment center, easy to overlook) and I remember bringing it down. I either gave it to Jeff to put in or put it in myself. I *think* I put it in the van myself, but I'd put so many other things in that it might not be a real memory.

When we were bringing stuff into the new place, we decided to leave it in the van, in the cargo section, which was cavernous and difficult to see from outside the van, even if you were looking right in the windows. And when we got home, it was gone. Nowhere to be seen The van had a very good (and loud) alarm and there were no signs of it being broken into. If they'd managed to get into the van without setting off the alarm, why close it back up? And why not take the whole thing, not the hard-to-see dvd player?

So, yeah. Don't think it was stolen, but also can't figure out where it was lost. It just kind of vanished, 'cause the van was never left open when bringing things in without one of us there, doing stuff *with* the van contents. And nobody was in the room besides us.

It is a mystery for the ages. But, we bought a new one (refurbished, from Overstock for less than the original. Small yay) and it should be here soon. And now we have two remotes for it. So that'll be fun. ;)

~~~

As you know, Bob, Sammy is very into the Harry Potter books. She's read the first two and we're waiting on the third to come from Paperbackswap (I've got them all, but the first three are in storage. The fourth might be as well, I'm not exactly sure).

I'm getting her some Harry Potter stuff (including a deluxe Wizard's kit with robe and wand), and find myself working really hard to *not* get her anything that spoils the books for her. I've read them so often than they kind of meld together for me into one long story.

I don't know if she'll go beyond book four right now or not. She'll certainly be allowed if she wants to, but it might be a bit daunting. We'll see.

I'm also looking at Bella Sara stuff for her...it's a fairly new obsession, but one we're doing together. Mainly 'cause she and her dad play Disney's Toontown and are really enthusiastic about it, but I'm not into that particular game. So, I figured this would be nice...and so far, it doesn't look like it can become all crapped up like Neopets. We'll see about *that* too. I was sure I'd seen a Bella Sara board game somewhere, but can't find it for the life of me. Oh well, we'll live without it somehow (especially if it doesn't exist).

~~~

I've missed just writing here. It felt wrong to go on about goofy stuff while Charlie was in the hospital. But, not doing it didn't get her out of the hospital, so may as well core-dump from time to time. That may even help. :)

~~~

Gotta go. Meeting with Dr. Clawson at four.

Here's an example of why we were so happy to get her back to Winchester.

They already have a plan in place to *get her home*. Jeff went by last night to see her and have a meeting with one of her doctors (which, I must repeat, Dr. Lee *called to set up*). She's going to come home with the stuff for the tube, including a medicine pump to push in the leftover food and a monitor akin to the one she wears at the hospital.

She'll only need the monitor for the times when she's not *right* with us and being watched. So, maybe five minutes a day.;)

Jeff's got an appointment tomorrow morning to learn how to use the monitor. And if my bloody stupid cold would go all the way away, I could learn too. *grump to the nth power*

So...yeah. Mega-progress, and she's in a place where her dad gets stopped in the door to the NICU, 'cause one of the nurses wanted to tell him how glad she was to see Charlie again. Rock on.

Woo-HOOOOOO! Charlie is back at Winchester! They actually let her out of the hospital and didn't tease this time.

Of course, they "forgot" to call Jeff and let him know this was going on, but now we don't have to even think about them anymore (we will 'cause that's how we are, but we don't have to).

Jeff's in the office now, and will be stopping by the hospital on his way home to talk to one of her doctors. The doctor who *called him* and set up an appointment.

In closing, yaaaaaaaaaaaaaaaaaayyyyyyyyyyyyyyyyyyyyyyyyyy!

Charlie's being sent back to Winchester. They think it'll be Wednesday, possibly Thursday.

I'm far more confident that *they'll* give the baby back, 'cause we have a good relationship with them, and we were discussing bringing her home with the tube before the stenosis was discovered. Jeff even learned how to insert it into her mouth/throat. If they decide to go that route, I'll learn too...he got the lesson the night I barfed in the bushes.

I'm so glad she'll be going back there, for about a thousand reasons. And glad that half the family won't be two and a half hours away soon.

It just occurred to me that we must be pretty damn good at this whole "family" thing. I mean, we've been living in what is essentially one room for two weeks now and we still all like each other. There has been grumpiness here and there, but generally speaking, we're doing really well. Jeff and I are stressed to all hell (for no reason, really ;), but not taking it out on one another or the kid. And we're still getting up, every day and just getting on with it.

We should find out about the transport sometime today. The doctor Jeff talked to yesterday said to call if they hadn't called him by noon.

He and I are utterly bummed that she's not just coming home, but if she has to stay in the hospital, that's the one we want her in. Not just 'cause it's closer to home, but because the nurses there absolutely adore her and the doctors do their level best to stay in touch with us.

I'm assuming she's staying in the hospital 'cause she still isn't taking all her food by mouth (the tube is in her mouth...shouldn't that count for something?;). She's working on that.

I know, I've said this eight million times, but I just want my baby home. But, I'm looking on the bright side of life, and whistling for all I'm worth.

Well, that was cool. I handed Sam a copy of Harry Potter & The Sorcerer's Stone. She yelped with glee and then closed her laptop and went upstairs to read.

Lots of Charlie news. I would have updated sooner, but my monitor decided to go on the blink. We got a new one from New Egg...can't recommend them higher. We ordered it on Sunday and it got here *today*. It's purty, too. I upgraded from my (wonderful) 19" monitor to a 22" widescreen. My geek side is giddy.

Charlie is going to be transported to Johns Hopkins hospital this week. She needs surgery to correct Pyriform Aperture Stenosis. We thought she had too much flesh in her nose, but it turns out that's *bone*. This is a congenital defect, and it could have had other things with it like brain deformation. She doesn't have that, thank ghods. She does have one large front tooth rather than two, but we can deal with that(especially since, even if she teethes as early as Sam, she's months away from that), and who knows, maybe she'll have two adult front teeth. As Dr. Clawson said, if something else had to come along, this was the one to hope for. Pyriform Aperture Stenosis is rare, which is why it took them so long to figure it out.

The doctors at Winchester were/are *amazing* advocates. I can't praise them highly enough. They knew something wasn't right, and just kept working on the problem till they found the answer, *then* they kept working till they found the right people to fix it. Yes, I know that's what doctors are supposed to do. And I'm damn glad that these doctors did it.

Johns Hopkins has both a pediatric ENT(ear, nose and throat) doctor and a pediatric anesthesiologist, and the surgery is considered by the doctors to be low-risk.

No, I'm not really this calm. I can't even call my mom to talk about it, 'cause I cry whenever I *think* about Charlie in surgery, let alone talk about it. Thank ghods for writing and computers and all that stuff.

But, this really is wonderful, no matter how terrible it seems. They found the problem and it has a solution. Though she probably won't be coming home till February, when she does, she'll be *home* and she'll be eating by mouth. Which also means that every drop she consumes won't have to be measured, so we can work on breastfeeding without the pump. I'm still going to try to get my supply up and so on, but if I can just *Feed* her, it'll be so much easier. We'll see what happens.

Dear American Life League,

Oh yeah. You're doing a great job of not making yourselves look absolutely insane. Yep, yep, yep.

Well, I guess your image is, ultimately, your choice.

Oops...sorry. Didn't mean to use the C-word.

Yes, I *am* laughing, right at you. Sincerely.

Gessi, who would kick someone for a Krispy Kreme right now

~~~

In Charlie news, I had a really good talk with her doctor last night. She agreed that it was utterly frustrating that the only thing keeping babygirl in the hospital was her nose. She called back the Ear, Nose & Throat doctor who'd seen her a couple weeks ago and they went over her CT scan again. The deviated septum isn't really causing any problems, as far as they can see. But, she has (what was described to me in simple medical terms that I can't remember) extra tissue in her nasal passages. This means that if she's the slightest bit congested, her nose is pretty much closed. They are currently waiting on a consult with a doctor at another hospital to see if there's any surgical option. Which, you know, aaah. *But* that hospital (no, I can't remember the name of *it*, either) has at least one infant anesthesia specialist, which is why, if she needed surgery, she'd be transported there. And, the doc mentioned the large possibility of laser surgery, which is far less scary, in my mind.

We also talked about the fact that, beyond that, she's so healthy and utterly *aware* of what's going on around her...I expressed concern that, as much as the nurses tried to play with her when they could, she spent a lot of time essentially alone. And found out that the hospital has a play therapist. And the doctor is/did get in touch with her today...the therapist is going to come every day or so and just *play* with Charlie. How utterly cool is that?

She was *wide* awake when I went in around nine. They'd been trying different bottles with her, including one for babies with cleft palates. That one had less of a nipple and more of an...almost squirter-type top, so that even if she didn't suck, she got the food. Oh, Ms. Charlie did *Not* like this at all, not one little bit. She wanted to suck on something, and would not take this easy way. So, we're back on the search for something she can suck without cutting off the airway from her mouth. Which is pretty much impossible, but who knows? There might be something out there. The Occupational Therapist has a couple things on order, and I'm currently looking around to see what I can find. It may be a fool's errand, but at least it's something, y'know?

They bottle she's currently using has a regular nipple, it's the bottle itself that's different. It's softer than the usual one, and when she gets distracted or has the nipple in her mouth but forgets to suck, one squeezes the bottle, which squirts a couple drops into her mouth. She goes "Oh right. I was eating!" and starts to nurse again. It works pretty well (and doesn't seem to offend her like the other one), though when she decides that she's done, she's *done*, dude. She's even started pushing the bottle away with her hands when she doesn't want it. On the eating side, that's a little frustrating. On the development side, it's wonderful.

She wanted to sleep after she ate, but couldn't quite get there, even after a couple burpings (she always looks slightly offended when being burped), so I put her up on my shoulder and started rubbing her back. She drifted off *right* away and slept for at least half an hour. It's the same position I used with Sammy when she was an infant, and it was pretty amazing to have Charlie like that and not have to worry about moving her around too much or jiggling her, which were problems when she was on the formulas with lactose and before they started giving her the reflux meds. Just a regular baby, sleeping on my shoulder.

That couldn't last, of course. She started moving and I helped her turn her head to the other side. A couple minutes later, she was awake and *not having it*. So, I laid her in the crib and turned on the mobile. Instant mesmerization. I annoyed her by poking the animals and making the swing a little. She gave me this look like "Hey...the animals and I, we have an understanding. Leave 'em alone!"...it was adorable. And made me want to poke them more. But I was good and didn't.

One of the nurses (not the one who was taking care of Charlie right then) came over to talk about how much she *loved* the mobile and how cute she was. I guess they don't usually have a mostly-healthy (I don't think the nose makes her *un*healthy, but I don't know how to put it) baby in there, and they're having a good time with her. While I'd rather be the one with her all the time, I'm so glad they enjoy their time with her...probably means she gets far more interaction than I'm imagining.

I went and got Jeff, 'cause the child wasn't falling asleep and I do try not to be greedy. I usually fail, but I *try*. When he came back, he said she was still awake. But they'd had a good time, and got a lot of cuddling in.

Sammy and I lucked out and caught both Good Eats and How Its Made in the waiting room. Made the time go faster...and it's nice to hang out with Sammy, too. She's always excited to go to the hospital, even now when she can't go into the NICU 'cause of flu season. I'm so proud of her.

Thank you so much for the jammie links! I got some wonderful leads. Y'all rock.:) And yes, there will definitely be pictures, once the jammies are acquired and on the child.

Got to see my Charlie last night! Circumstances had been stopping me since *Saturday*, which brought suckitude to an almost unbelievable level.

But she was bright and bonny when we got there. Kids still aren't allowed in the NICU (then they should let Charlie out! ;) due to flu worries, so I went first (Jeff had seen her on Monday. On Saturday, he gets to go first) and he stayed with Sammy in the waiting room down the hall. She did *very* well, with just a little crankiness near the end. I'm sure the backpack full of books and fun helped. *grin*

Charlie had definitely grown. She just looked so *big*. And she was stronger, too. She's been able to push herself away from my shoulder since she was about a week and a half old. Today, she decided to try acrobatics. 'Cause everyone needs a hobby. Luckily, I remember how these things go, and she didn't get away from me once.

Her doctors had taken her off the schedule and are letting her feed on demand, figuring that if she's actually hungry, she may eat more. Boy did *that* work well. When I got there, she'd just finished eating. She took 70ml by mouth at one feeding. This is *BY FAR* the largest amount she's ever eaten. Her nurse was trying to bring up a burp, so I got to do that (and eventually did) I stayed for a couple hours and she didn't spit up, either. This makes us incredibly hopeful.

They'd taken her tube out, and I didn't see the machine that pumps the food into the tube at her station either. I know, they can both come back at any time, but it's the very first time she's tubeless. *Joy*.

She's so *smart*...I know, all parents say that, and hell, they might all be right. I can see this deep inteligence in her eyes. She's wondering about *everything*, looking around all the time and trying to figure stuff out. She's also still very interesting in the acoustic tiles. I'll get her one of her very own when she comes home.;)

She was moody, even after a diaper change and burpage. It was mainly her being very tired but so curious about everything that she didn't want to sleep. She'd do her little kitten cry (sort of a half-cry that means "I think this might suck, but I'm not sure yet") and turn her head like she was hungry. Which, after 70ml in her belly was pretty impossible. So I'd pop the pacifier in, and she'd suck on it like she'd been waiting for *hours*. Then, after a while, she'd spit it out. And sometimes, she got good distance on that thing. It was like she was going for a record. I was impressed...it was something she couldn't do the last time I was there. I'm proud to say that my years of video games have honed my fine motor skills to such a degree that the paci never got away from me. But, I'm sure we'll play this game again (many times, if she still likes the pacifier) and eventually, she'll win.

I sang her very nearly to sleep twice. The first time, a nurse came by at just the wrong second and said something. *le sigh* The second, she was almost there and then went "Oh, no, that's not what I want to do!". But we came damn close. Good to know that both Baby Mine and Me & Bobby McGee still work.

Eventually, I settled her back in the bed and turned on her mobile. She held my left hand and I put my right on her belly, which she seems to like. She was very relaxed. It was wonderful.

I decided to let Jeff have his turn while there was a bit of awake in her, so I kissed her and told her that Daddy would be there in a few moments and that I'd see her on Saturday. Then I left.

They're predicting snow and stuff on Saturday. I don't actually care. I'll be there if I have to walk.

The NICU is kept pretty dim...oh, there's no problem seeing anything, but sometimes making out details can be difficult. While I was cuddling with Charlie, the light at her station fell across her face and I found out that, right now, her eyes are dark blue with a wide green ring. I wish there'd been some way I could have taken a picture. Especially since, as we all know, babies eyes change.

Oh yeah! Remember her broken arm? She doesn't. She's using both arms pretty equally, and with the same dexterity. When she's sleepy, she tends to only use the never-broken one, but I think she'll grow out of that eventually. So much for the specter of nerve transplants.

She's going to be a month old tomorrow. Time is weird, because there's 1)no way it's been that long and 2)no way she hasn't always been a part of my life.

No surgery for Charlie!

We finally got in touch with one of her doctors and he said that the deviation of her septum wasn't extreme and that it wasn't the main cause of her not being able to eat well. She'll have to have it corrected at some point in her life, but that is *FAR* down the road. Woo-HOO!

Right now, they're trying feeding her on demand and see if she'll eat more that way. She did take 30ml by mouth at once, which is an improvement over yesterday's 15 and 20. We've had great improvement before and then she got really congested again (that was when they had to discontinue the Afrin), but this is *good*.

The doctor was talking about teaching us to put the tube down her throat (I observed one of the nurses doing it when I was there on Saturday...it wasn't as terrible or as complicated as I'd expected. Kiddo doesn't like it much, but she accepts it with little complaining) and feeding her at home, with a visiting nurse coming every now and then to see how we're doing. We'd be up for that, as it'd mean the baby would be *here* rather than there.

Honestly, yes, there could be something more behind this. But I think there may be a posibility that she's just a very distractable eater. Her sister certainly was (hell, she still *is*). And with Charlie, they only give her a certain amount of time to finish the bottle before they go with the tube. I'm not *upset* at them for this...there are currently eighteen babies in the NICU and they just don't have time to coax her to eat, especially given how often infants eat. But, hey. I've got time. And the inclination.

This has been your Charlie report for the day. :)

Oh, my Charlie.

She's doing very well. Healthy as anything. On Saturday night, she weighed in at 8lbs, 13 oz, which means she's almost a pound more now than she was at birth.

The only thing keeping her in the NICU is her nose. The congestion was largely gone when she was on Afrin, but it's not something they could keep her on indefinitely. Which is a major bummer, because she was eating *beautifully* when she was on it. The rule is, she has to take at least 24 hour's worth of food by mouth before she can be released. On Afrin, she barrelling toward the goal, but she's very stuffed up now, and we're not exactly back at the beginning, but we've certainly rolled down the hill a ways.

One of the doctors is pretty sure she has a deviated septum, and she may need surgery. This scares me to pieces. Not so much the surgery but the anesthesia. She is so tiny and I know they're experts and so on, but I also know that things go wrong. And, that is as far down that road as I can go right now. Especially since I'm honestly sure everything will be okay. Though, I'll be a ball of terror and stress on the actuall day. If I happens at all. Which, from what I'm hearing, odds are currently for.

They put a mobile above her crib, which she adores. When watching it, she sometimes follows the motion with her right hand. It's kind of amazing to watch.

darthgeek went back to work today (and amazingly, thanks to the holidays and really only taking a day here and there till now, he's actually got some vacation days left) and it wasn't anywhere near as odd as I'd expected. It does mean that we'll only be able to go see Charlie when he's working from home (Tue & Thu, we hope. Those were his "old" days at home, but they need to hire at least one person before they can be his permanent days again.) and on weekends. He can do short visits before or after work though. So it isn't that bad and it doesn't bother me that much (unless I think about it) because we honestly are lucky that we can see her *that* much. I know there are families in the NICU that only get to see their kids once a week or so. I'm honest to ghu grateful, while being bummed at the same time.

I am not, however, feeling guilty about it. I seem to have lost my guilt in the hospital. I don't feel like damn near everything is my fault and that if I mention something, it will allll go wrong. And I had no idea how much living like that really and truly *sucked* till I didn't have to any longer. I don't know where the crazy guilt went, but I hope it *stays* there.