myschyf: (Charlie)
UVA is about a million times better than JHU. The doctors not only stay in contact with us, they are in to see Charlie all the time.

Which is why we found out this morning that they are going to place the G-Tube. She was eating really well when she first got there and there was a possibility that they'd just give her to us. But she's only taken 25% of her food by mouth in the past twenty-four hours, which helped them make up their minds.

The surgery is tentatively scheduled for Tuesday.

I know this is a good thing...I know that we're not rushing into it and that we're not being pushed into it. That this really is what's best for Charlie and what will get her home.

I'm just not dealing well with the reality of the situation at all. All my fears about her being in surgery have returned (they never really left) along with the knowledge that we're going to let people hurt her. That's pretty much what surgery *is*, causing pain now to prevent it later. And we can't even explain it to her.
myschyf: (Charlie)
UVA is about a million times better than JHU. The doctors not only stay in contact with us, they are in to see Charlie all the time.

Which is why we found out this morning that they are going to place the G-Tube. She was eating really well when she first got there and there was a possibility that they'd just give her to us. But she's only taken 25% of her food by mouth in the past twenty-four hours, which helped them make up their minds.

The surgery is tentatively scheduled for Tuesday.

I know this is a good thing...I know that we're not rushing into it and that we're not being pushed into it. That this really is what's best for Charlie and what will get her home.

I'm just not dealing well with the reality of the situation at all. All my fears about her being in surgery have returned (they never really left) along with the knowledge that we're going to let people hurt her. That's pretty much what surgery *is*, causing pain now to prevent it later. And we can't even explain it to her.
myschyf: (Charlie waving)
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. ;)
myschyf: (Charlie waving)
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. ;)
myschyf: (A-okay)
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!
myschyf: (A-okay)
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!
myschyf: (Charlie's smile)
So, they put the baby in the ambulance, started down the road and then, a while later, came back because the ambulance was "having mechanical problems". So, they're gonna try again tomorrow.

But, at least they let her out of the hospital. I wasn't fully expecting them to, y'know?

Once,I was chatting with a woman who's daughter was in the hospital as well. And she said "Oh, your second child. She must be the easy one". I did good...didn't fall over laughing hysterically or *anything*. Just explained that neither of my kids could be called easy, Charlie least of all.

Wouldn't trade a day for anything, of course. But it's become a saying around here. "Oh no, Charlie's the easy one" and variations thereof.

Thank goodness I've never expected easy from my offspring. :)
myschyf: (Charlie's smile)
So, they put the baby in the ambulance, started down the road and then, a while later, came back because the ambulance was "having mechanical problems". So, they're gonna try again tomorrow.

But, at least they let her out of the hospital. I wasn't fully expecting them to, y'know?

Once,I was chatting with a woman who's daughter was in the hospital as well. And she said "Oh, your second child. She must be the easy one". I did good...didn't fall over laughing hysterically or *anything*. Just explained that neither of my kids could be called easy, Charlie least of all.

Wouldn't trade a day for anything, of course. But it's become a saying around here. "Oh no, Charlie's the easy one" and variations thereof.

Thank goodness I've never expected easy from my offspring. :)
myschyf: (Charlie waving)
My mom figured out the thing that was bothering me most about the whole G-tube debacle. They were pushing it so hard because it would make life easier for *them*. Not us and certainly not Charlie. I can't believe I didn't see it at the time and call them on it. They said, flat out, that she wasn't eating enough. They also said that the nurses don't have time to feed her on demand. Logic would say "Then perhaps you should return her to her parents, who do have the time", but their reasoning was "Let's cut a hole in her stomach where one absolutely doesn't need to be". And dear ghods did they push for it. There were four doctors, a nurse and the hospital shill social worker there for this little conversation, with each of them putting in bits and pieces here and there, telling us what a mondo fabuloso idea it was.

The whole thing makes me furious. There are certainly people, including infant-type people who need G-tubes. But anyone with a working brain can tell that Charlie isn't one of them. Hell, Jeff was there for two of her feedings today, and she took either 2/3 or 3/4 of her food each time. Also, as my mom pointed out, when you're feeding a baby at home, one hardly ever knows/keeps track of exactly how much the baby's eating. Is she happy? Is she wetting her diapers often? Is she energetic and hitting her developmental marks in a reasonable time frame? And, is she gaining weight? If so, then she just might be eating enough.

I know, I keep going on about this, when it absolutely isn't happening. But I'm still appalled that they would advocate something invasive like this on a tiny child. She weighed eleven pounds, two ounces on Friday (which is a gain of ten ounces since the previous weigh-in), which is less than my backpack typically weighs. And they could apparently push for this and *still* be able to sleep peacefully afterward. I just don't get it. And if they're doing that to us, what else are they doing to make their lives easier, with little regard for the infants involved?

The more I think about it, the more depressing it becomes. Especially since I know there's nothing that can be done to stop them. I'm not sure one can even file a complaint against doctors for making a bad suggestion, if one doesn't take the advice. It would be put down to a difference of opinion or something like that.

When I was in the hospital after having Charlie, one of my doctors said something like "I get the feeling you don't trust the medical establishment much" and I allowed that this was true. I could tell she wanted me to explain this, but not only was it none of her business (and she's an OBGYN, not a psychiatrist), it would have taken far, far too long to explain. And now, it'll take even longer.

I really hope that once Charlie's sprung, her pediatrician is a really good doctor who *listens* and cares about the kids in her care. 'Cause I'll keep fighting for what's right for my kids, but I'm pretty damn exhausted. If she turns out to be a jerk, I might not be able to stop myself from kicking her before we sweep out of the office. (The pediatrician is already in place, but we haven't met. We picked her out from a list on the insurance's website, then did some searches on her, then Jeff called and explained about the Stenosis.)

Why yes, I do have too much time to think right now. I don't sleep well when Jeff's not here (luckily, this is a newish thing, 'cause I never would have survived if I'd had this problem when he was working midnight to eight), and I also have a problem making myself go to bed. I come up with the best excuses. :) But, I think it's time for a nap now, especially as I seem to be at the end of my nine thousand sneezes in a row.
myschyf: (Charlie waving)
My mom figured out the thing that was bothering me most about the whole G-tube debacle. They were pushing it so hard because it would make life easier for *them*. Not us and certainly not Charlie. I can't believe I didn't see it at the time and call them on it. They said, flat out, that she wasn't eating enough. They also said that the nurses don't have time to feed her on demand. Logic would say "Then perhaps you should return her to her parents, who do have the time", but their reasoning was "Let's cut a hole in her stomach where one absolutely doesn't need to be". And dear ghods did they push for it. There were four doctors, a nurse and the hospital shill social worker there for this little conversation, with each of them putting in bits and pieces here and there, telling us what a mondo fabuloso idea it was.

The whole thing makes me furious. There are certainly people, including infant-type people who need G-tubes. But anyone with a working brain can tell that Charlie isn't one of them. Hell, Jeff was there for two of her feedings today, and she took either 2/3 or 3/4 of her food each time. Also, as my mom pointed out, when you're feeding a baby at home, one hardly ever knows/keeps track of exactly how much the baby's eating. Is she happy? Is she wetting her diapers often? Is she energetic and hitting her developmental marks in a reasonable time frame? And, is she gaining weight? If so, then she just might be eating enough.

I know, I keep going on about this, when it absolutely isn't happening. But I'm still appalled that they would advocate something invasive like this on a tiny child. She weighed eleven pounds, two ounces on Friday (which is a gain of ten ounces since the previous weigh-in), which is less than my backpack typically weighs. And they could apparently push for this and *still* be able to sleep peacefully afterward. I just don't get it. And if they're doing that to us, what else are they doing to make their lives easier, with little regard for the infants involved?

The more I think about it, the more depressing it becomes. Especially since I know there's nothing that can be done to stop them. I'm not sure one can even file a complaint against doctors for making a bad suggestion, if one doesn't take the advice. It would be put down to a difference of opinion or something like that.

When I was in the hospital after having Charlie, one of my doctors said something like "I get the feeling you don't trust the medical establishment much" and I allowed that this was true. I could tell she wanted me to explain this, but not only was it none of her business (and she's an OBGYN, not a psychiatrist), it would have taken far, far too long to explain. And now, it'll take even longer.

I really hope that once Charlie's sprung, her pediatrician is a really good doctor who *listens* and cares about the kids in her care. 'Cause I'll keep fighting for what's right for my kids, but I'm pretty damn exhausted. If she turns out to be a jerk, I might not be able to stop myself from kicking her before we sweep out of the office. (The pediatrician is already in place, but we haven't met. We picked her out from a list on the insurance's website, then did some searches on her, then Jeff called and explained about the Stenosis.)

Why yes, I do have too much time to think right now. I don't sleep well when Jeff's not here (luckily, this is a newish thing, 'cause I never would have survived if I'd had this problem when he was working midnight to eight), and I also have a problem making myself go to bed. I come up with the best excuses. :) But, I think it's time for a nap now, especially as I seem to be at the end of my nine thousand sneezes in a row.
myschyf: (Charlie's smile)
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.
myschyf: (Charlie's smile)
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.
myschyf: (Cat & Crossbones)
Home. Miserable about it. I know this was the right thing to do, especially since my cold is getting worse. But knowing you did the right thing doesn't always make living with it easy.

I feel, irrationally or not, that I'm abandoning both Charlie and Jeff, that I'm giving up and giving in, and that I'm not going to see the baby in the flesh again. That they'll keep her forever and I'll just see pictures. Like I sponsored a kid in another country or something.

I may have been more of a wreck yesterday...but then, today is only half over. Jeff's gone to get tissues for me (the one thing we forgot to get last night) and then he'll go back to B'more. I feel like I'm faking, just to come home. The coughing and nose-blowing make my cold evident to everyone but the section of the brain reserved for self-loathing.

I don't know how we'll get through this. I know we will, because we've gotten through some stuff that was even suckier (the list is short, but there were a few things that were worse than this situation) and lived to tell the tale. But this road is so long and twisted, and there are no signs telling us when it ends, or at least joins another road that's shorter and not so full of potholes.

The hospital shill social worker said she'd call this morning about the transfer, and she hasn't. Jeff called and got her voice mail. Yeah, I have so much confidence in her.
myschyf: (Cat & Crossbones)
Home. Miserable about it. I know this was the right thing to do, especially since my cold is getting worse. But knowing you did the right thing doesn't always make living with it easy.

I feel, irrationally or not, that I'm abandoning both Charlie and Jeff, that I'm giving up and giving in, and that I'm not going to see the baby in the flesh again. That they'll keep her forever and I'll just see pictures. Like I sponsored a kid in another country or something.

I may have been more of a wreck yesterday...but then, today is only half over. Jeff's gone to get tissues for me (the one thing we forgot to get last night) and then he'll go back to B'more. I feel like I'm faking, just to come home. The coughing and nose-blowing make my cold evident to everyone but the section of the brain reserved for self-loathing.

I don't know how we'll get through this. I know we will, because we've gotten through some stuff that was even suckier (the list is short, but there were a few things that were worse than this situation) and lived to tell the tale. But this road is so long and twisted, and there are no signs telling us when it ends, or at least joins another road that's shorter and not so full of potholes.

The hospital shill social worker said she'd call this morning about the transfer, and she hasn't. Jeff called and got her voice mail. Yeah, I have so much confidence in her.
myschyf: (Death Stare Flamingo)
Oh, lovely. I seem to have caught a cold. Which means that I can't go into the NICU...even if they'd let me, I'd feel utterly wrong about it. There are several "super preemies" in there (no capes, sadly) and I'd never forgive myself if I caused them harm.

Of course, this is the weekend when we were going to be there as much as possible and try the whole "feeding on demand" thing. When I woke up, I had a migraine that lasted most of the day. I'm assuming it was brought on by stress, 'cause I haven't had one in ages. Headaches here and there, but not the big bad. And now, a cold. Yay.

You ever have the feeling that your body is working against you? *grump*

Jeff spent lots of time with each of his daughters today (I love saying "daughters" and "children". It's even more fun that saying "President Obama", though that is a close second). There were V-day festivities here that he and Sam went to, and then he spent several hours with Charlie, who was in a great mood. She has been practicing her smiling. It's so much fun. She also recognizes Jeff and I. It feels truly amazing to have her focus on me (and when that child focuses, she does it with every fiber of her tiny being) and then smile. Of course, she also focuses on her mobile and then smiles...and the cheetah that Jenny gave her, and the light fixtures. None of this decreases the awesome.:)

What the doctors say is wrong with her is "she's not eating enough to satisfy them". Which is true...but it isn't life-threatening. She takes about half her feeds a lot of the time and sometimes she takes all of them (she's currently at 105ml of a high-calorie formula). If the nurses would have her bottles ready before she was due to eat and give them to her when she was just realizing she was hungry, she'd eat a lot more. And, if she were fed on demand, as she would be at home, she'd eventually take everything she needed, just not in four-hour segments. Hell, I fed Sam 'round the clock till she was...nope, no idea. Older than Charlie currently is, that's for sure. And she was breastfeeding...I'm hoping to transition Charlie to breast, but right now she's on formula, which means that the other people in the house could feed her too.

But, y'know, I don't want to talk about it. ;)

Bought my breast pump last night, so I can get my supply up and hopefully have a stash in the freezer for the baby. I tried to pump when I had Sam and it didn't go well. But then, I had no real reason to do so. I'm more confident this time, and I have more people to ask if I run into problems.
myschyf: (Death Stare Flamingo)
Oh, lovely. I seem to have caught a cold. Which means that I can't go into the NICU...even if they'd let me, I'd feel utterly wrong about it. There are several "super preemies" in there (no capes, sadly) and I'd never forgive myself if I caused them harm.

Of course, this is the weekend when we were going to be there as much as possible and try the whole "feeding on demand" thing. When I woke up, I had a migraine that lasted most of the day. I'm assuming it was brought on by stress, 'cause I haven't had one in ages. Headaches here and there, but not the big bad. And now, a cold. Yay.

You ever have the feeling that your body is working against you? *grump*

Jeff spent lots of time with each of his daughters today (I love saying "daughters" and "children". It's even more fun that saying "President Obama", though that is a close second). There were V-day festivities here that he and Sam went to, and then he spent several hours with Charlie, who was in a great mood. She has been practicing her smiling. It's so much fun. She also recognizes Jeff and I. It feels truly amazing to have her focus on me (and when that child focuses, she does it with every fiber of her tiny being) and then smile. Of course, she also focuses on her mobile and then smiles...and the cheetah that Jenny gave her, and the light fixtures. None of this decreases the awesome.:)

What the doctors say is wrong with her is "she's not eating enough to satisfy them". Which is true...but it isn't life-threatening. She takes about half her feeds a lot of the time and sometimes she takes all of them (she's currently at 105ml of a high-calorie formula). If the nurses would have her bottles ready before she was due to eat and give them to her when she was just realizing she was hungry, she'd eat a lot more. And, if she were fed on demand, as she would be at home, she'd eventually take everything she needed, just not in four-hour segments. Hell, I fed Sam 'round the clock till she was...nope, no idea. Older than Charlie currently is, that's for sure. And she was breastfeeding...I'm hoping to transition Charlie to breast, but right now she's on formula, which means that the other people in the house could feed her too.

But, y'know, I don't want to talk about it. ;)

Bought my breast pump last night, so I can get my supply up and hopefully have a stash in the freezer for the baby. I tried to pump when I had Sam and it didn't go well. But then, I had no real reason to do so. I'm more confident this time, and I have more people to ask if I run into problems.
myschyf: (Buttercup)
Charlie's still there. Had a meeting today where I totally lost my cool...and it felt damn good. If the transfer (to Winchester, Martinsburg or somewhere else that has room and is relatively close to home) isn't well underway by Tuesday morning, they will have hell to pay. I'll contact a lawyer and the media if I have to. I'm tired of this bullshit.

I did fire her doctor...that woman was doing *nothing* for the baby, and was pressing the G-Tube as the only option left. She's also a smug asshole. Though, that may be beside the point.

I'm not happy with any of this. I don't like the way we're being treated, I don't like the fact that they've basically wasted nearly three weeks of Charlie's life and I just want to go home. Add a "Jeff too" to all of that.
myschyf: (Buttercup)
Charlie's still there. Had a meeting today where I totally lost my cool...and it felt damn good. If the transfer (to Winchester, Martinsburg or somewhere else that has room and is relatively close to home) isn't well underway by Tuesday morning, they will have hell to pay. I'll contact a lawyer and the media if I have to. I'm tired of this bullshit.

I did fire her doctor...that woman was doing *nothing* for the baby, and was pressing the G-Tube as the only option left. She's also a smug asshole. Though, that may be beside the point.

I'm not happy with any of this. I don't like the way we're being treated, I don't like the fact that they've basically wasted nearly three weeks of Charlie's life and I just want to go home. Add a "Jeff too" to all of that.
myschyf: (Charlie)
Meeting with the doctors & hospital social worker around three. We're going to be talking seriously about bringing her home, 'cause they've basically done *nothing* for her here that couldn't have been done at Winchester and now they seem to be looking for problems to solve. Like, oh, suggesting a G Tube because they think she should be eating more.

Yes, she should be eating more, but she's been eating more by mouth *now* than ever before, and once she's feeding on demand rather than on a schedule, I'm confident she'll eat enough. She's still gaining weight and developing beautifully, so there's no reason to surgically insert a feeding tube into her stomach.

That was pretty much the final straw. We don't even want her transported back to Winchester now (one of the doctors even told Jeff a couple days ago that he didn't know why they'd send her back there rather than release her, 'cause there was really nothing they could do for her). We want her released. We'll make sure her pediatrician keeps an eye on her.

So...yeah. Gotta go be polite as all hell while being the mama protecting her cub. And the daddy, as Jeff's going to be there too, of course. As will Sam, but she won't be participating...she'll be using Jeff's laptop to bop around Dizzywood.:)

Good thoughts and vibes would be most appreciated.
myschyf: (Charlie)
Meeting with the doctors & hospital social worker around three. We're going to be talking seriously about bringing her home, 'cause they've basically done *nothing* for her here that couldn't have been done at Winchester and now they seem to be looking for problems to solve. Like, oh, suggesting a G Tube because they think she should be eating more.

Yes, she should be eating more, but she's been eating more by mouth *now* than ever before, and once she's feeding on demand rather than on a schedule, I'm confident she'll eat enough. She's still gaining weight and developing beautifully, so there's no reason to surgically insert a feeding tube into her stomach.

That was pretty much the final straw. We don't even want her transported back to Winchester now (one of the doctors even told Jeff a couple days ago that he didn't know why they'd send her back there rather than release her, 'cause there was really nothing they could do for her). We want her released. We'll make sure her pediatrician keeps an eye on her.

So...yeah. Gotta go be polite as all hell while being the mama protecting her cub. And the daddy, as Jeff's going to be there too, of course. As will Sam, but she won't be participating...she'll be using Jeff's laptop to bop around Dizzywood.:)

Good thoughts and vibes would be most appreciated.
myschyf: (Charlie's smile)
Okay, so. We were waiting for her doctors to review the official results of the sleep study (they were working off preliminary results before). They did that today and she is officially off the oxygen (she took herself off as often as possible, but now she's sanctioned to do so *grin*), though she may keep it on while eating, 'cause it really does help. I forgot to ask about that. They've been ramping down the steroids for her nose, and she'll be off of those tomorrow.

They were trying to figure out if they were going to send her back to Winchester or home with us. And ultimately, they decided to send her back to Winchester. I'd been working so hard to *not* set my heart on her coming home, but I guess I did a terrible job, 'cause I damn near burst into tears when I found out. Which is a bit ridiculous, given that the initial news of the transport back damn near made me dance.

But, transport is confirmed...I don't know if it'll happen tomorrow or the next day, but a decision has been made. And, once we got in contact with the doctors, they did keep in contact with us...so it started out annoying and ended up encouraging.

Oh, they weighed her on Sunday...she's currently at ten pounds, eight ounces. In another seven ounces, she'll weigh three pounds more than she did at birth. *Damn*. :)

A couple days ago (I *think* it was Saturday night), Charlie was very active (as she usually is these days) and was having a great time laying in her crib, watching her mobile and doing what we refer to as The Charlie Dance. I put the camera on continuous and took a boatload of pictures. Later, I put them together into my very first animated gif. And, I finally managed to make it smaller, too. It isn't the best thing evarrrrrrr, but you do certainly get a sense of who she is. And how she dances.:)

It's back here )
myschyf: (Charlie's smile)
Okay, so. We were waiting for her doctors to review the official results of the sleep study (they were working off preliminary results before). They did that today and she is officially off the oxygen (she took herself off as often as possible, but now she's sanctioned to do so *grin*), though she may keep it on while eating, 'cause it really does help. I forgot to ask about that. They've been ramping down the steroids for her nose, and she'll be off of those tomorrow.

They were trying to figure out if they were going to send her back to Winchester or home with us. And ultimately, they decided to send her back to Winchester. I'd been working so hard to *not* set my heart on her coming home, but I guess I did a terrible job, 'cause I damn near burst into tears when I found out. Which is a bit ridiculous, given that the initial news of the transport back damn near made me dance.

But, transport is confirmed...I don't know if it'll happen tomorrow or the next day, but a decision has been made. And, once we got in contact with the doctors, they did keep in contact with us...so it started out annoying and ended up encouraging.

Oh, they weighed her on Sunday...she's currently at ten pounds, eight ounces. In another seven ounces, she'll weigh three pounds more than she did at birth. *Damn*. :)

A couple days ago (I *think* it was Saturday night), Charlie was very active (as she usually is these days) and was having a great time laying in her crib, watching her mobile and doing what we refer to as The Charlie Dance. I put the camera on continuous and took a boatload of pictures. Later, I put them together into my very first animated gif. And, I finally managed to make it smaller, too. It isn't the best thing evarrrrrrr, but you do certainly get a sense of who she is. And how she dances.:)

It's back here )
myschyf: (Charlie)
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.
myschyf: (Charlie)
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.
myschyf: (Charlie's smile)
Even more progress!

Jeff went in first tonight, and when getting the update from her nurse, asked if the doctors had a chance to review the results of the sleep study. She said she'd talk to the doctor and find out. He was purely zonked this evening, and came out before he saw the doctor. I went in and was spending time with the very sleeping Charlie when the doc came in. Poor guy was slightly confused, as he'd been told Jeff was asking and found me there instead.

Anyway, they were all (I have no idea how many doctors are in on this) very pleased with the results of the study. First off, there won't be any surgery at this time. *happy dance*

She has some apnea coming from her brain (he said something like "minimal" but I can't remember the exact wording) and some obstruction apnea (that's the periform aperture stenosis). They've currently got her on "a very small amount of oxygen" mixed with room air and they're ramping down the steroids they had her on to reduce the swelling in her nose.

And, *AND*, they're transporting her back to Winchester. I'm not exactly sure why they're not just giving her to us, but she'll be that much closer to going home (as well as that much closer *to* home). They'll probably do that Monday, maybe Tuesday. The doc said he'd gotten the ball rolling, so we'll see how long it takes to roll.

So, that's the news that's fit to type right now. It isn't everything we wanted, but it *is* damn close.
myschyf: (Charlie's smile)
Even more progress!

Jeff went in first tonight, and when getting the update from her nurse, asked if the doctors had a chance to review the results of the sleep study. She said she'd talk to the doctor and find out. He was purely zonked this evening, and came out before he saw the doctor. I went in and was spending time with the very sleeping Charlie when the doc came in. Poor guy was slightly confused, as he'd been told Jeff was asking and found me there instead.

Anyway, they were all (I have no idea how many doctors are in on this) very pleased with the results of the study. First off, there won't be any surgery at this time. *happy dance*

She has some apnea coming from her brain (he said something like "minimal" but I can't remember the exact wording) and some obstruction apnea (that's the periform aperture stenosis). They've currently got her on "a very small amount of oxygen" mixed with room air and they're ramping down the steroids they had her on to reduce the swelling in her nose.

And, *AND*, they're transporting her back to Winchester. I'm not exactly sure why they're not just giving her to us, but she'll be that much closer to going home (as well as that much closer *to* home). They'll probably do that Monday, maybe Tuesday. The doc said he'd gotten the ball rolling, so we'll see how long it takes to roll.

So, that's the news that's fit to type right now. It isn't everything we wanted, but it *is* damn close.
myschyf: (Charlie waving)
We have progress. {Totally c&ping from a letter to my mom.}

Jeff had to go into the office for the rest of the week, so when he went into see Charlie Tuesday night, he asked that her doctor (any doctor, really) call him during the day tomorrow. It turned out that one of the doctors was there, so they had a chat.

The doc set up a sleep study for her. I'm not sure what they'll be studying exactly, as her heart, breathing, pulse-ox levels and something else are always monitored, whether she's asleep or awake. (She has three leads and the pulse-ox monitor on a foot (they change feet once a day or so), and I'm not sure what the third lead is for) But, the doctor seems to know what data he wants, so I'm good with that. Apparently, the study will tell them whether surgery is the right way to go or not. He told Jeff that doing the surgery too early could cause the problem to come back. I'm not exactly sure what that means, either. 'Cause I didn't know cartilage could grow back. But, that might not have been what he meant.

Anyway, according to Jeff, the sleep study is going to determine if she gets surgery or if they just give her to us. So I guess my yelling at the universe got results (yeah, that's what did it...).

(back to original content) The sleep study was last night, which is why we didn't visit. I hate not visiting, but this was for a good cause. And, apparently she passed. The nurse she has tonight said the results should be in early tomorrow. Lots of finger-crossing going on here.

In related news, Jane Yolen wrote me back!

Oh. Yeah. I should probably start at the beginning. Well, on Tuesday night, I was having a heck of a time getting Charlie to sleep...I'd tried all the tricks, sung all the songs and even put her in the baby swing for a while (she was *so* uninterested that it was impressive). She'd sleep happily on my shoulder, but it was about one-thirty in the morning and I had to get Jeff and Sammy back to the room so they could sleep. And when I put the Charlie down, she'd wake right back up.

I remembered that they had small tape players in each crib. They play stories for the babies, and the one in Charlie's player was Owl Moon, by Jane Yolen. I started the story playing, and blew on the mobile (it's the old-fashioned kind without a motor). She's more interested in the mobile now, though I'm not sure it'll ever hold her attention like the one with the rotating animals.

Once the reading started, she was very interested and settled right down. I don't know how long it took her to sleep (though, she was so sleepy that I wouldn't be surprised if she was out by the time I got back to the waiting room), but I was comforted by being able to leave her with a favorite story by a favorite author.

When we got back to the room, I looked up Ms. Yolen's site and sent her mail, telling her about what happened and thanking her for her part in it.

She wrote back the next day, saying that she was holding Charlie and I in the light. "Or the Moonlight". Which was just beyond cool.

I think I'll print it out and put it in Charlie's baby book.

Note to self. Buy baby book.
myschyf: (Charlie waving)
We have progress. {Totally c&ping from a letter to my mom.}

Jeff had to go into the office for the rest of the week, so when he went into see Charlie Tuesday night, he asked that her doctor (any doctor, really) call him during the day tomorrow. It turned out that one of the doctors was there, so they had a chat.

The doc set up a sleep study for her. I'm not sure what they'll be studying exactly, as her heart, breathing, pulse-ox levels and something else are always monitored, whether she's asleep or awake. (She has three leads and the pulse-ox monitor on a foot (they change feet once a day or so), and I'm not sure what the third lead is for) But, the doctor seems to know what data he wants, so I'm good with that. Apparently, the study will tell them whether surgery is the right way to go or not. He told Jeff that doing the surgery too early could cause the problem to come back. I'm not exactly sure what that means, either. 'Cause I didn't know cartilage could grow back. But, that might not have been what he meant.

Anyway, according to Jeff, the sleep study is going to determine if she gets surgery or if they just give her to us. So I guess my yelling at the universe got results (yeah, that's what did it...).

(back to original content) The sleep study was last night, which is why we didn't visit. I hate not visiting, but this was for a good cause. And, apparently she passed. The nurse she has tonight said the results should be in early tomorrow. Lots of finger-crossing going on here.

In related news, Jane Yolen wrote me back!

Oh. Yeah. I should probably start at the beginning. Well, on Tuesday night, I was having a heck of a time getting Charlie to sleep...I'd tried all the tricks, sung all the songs and even put her in the baby swing for a while (she was *so* uninterested that it was impressive). She'd sleep happily on my shoulder, but it was about one-thirty in the morning and I had to get Jeff and Sammy back to the room so they could sleep. And when I put the Charlie down, she'd wake right back up.

I remembered that they had small tape players in each crib. They play stories for the babies, and the one in Charlie's player was Owl Moon, by Jane Yolen. I started the story playing, and blew on the mobile (it's the old-fashioned kind without a motor). She's more interested in the mobile now, though I'm not sure it'll ever hold her attention like the one with the rotating animals.

Once the reading started, she was very interested and settled right down. I don't know how long it took her to sleep (though, she was so sleepy that I wouldn't be surprised if she was out by the time I got back to the waiting room), but I was comforted by being able to leave her with a favorite story by a favorite author.

When we got back to the room, I looked up Ms. Yolen's site and sent her mail, telling her about what happened and thanking her for her part in it.

She wrote back the next day, saying that she was holding Charlie and I in the light. "Or the Moonlight". Which was just beyond cool.

I think I'll print it out and put it in Charlie's baby book.

Note to self. Buy baby book.
myschyf: (Charlie and Sammy)
Charlie's being transported as I type. I'm getting read to go pack. We're going to B'more tonight and will hopefully be back in a week or so with the baby. I'm trying to keep my mind on what I have to do right now and not worry about anything else. I'm going to try postponing the emotional basketcasery till at *least* halfway there.

Those that have my cell number, feel free to call. I may not answer, depending on what's going on. Those that wanna text, go for it. We're bringing both Jeff and Sam's laptops (mine's a desktop, so it's going to just guard the house) and we'll be theoretically checking in now and then.

If nothing else, I'll make a phone post letting y'all know when the surgery is and when she's out.
myschyf: (Charlie and Sammy)
Charlie's being transported as I type. I'm getting read to go pack. We're going to B'more tonight and will hopefully be back in a week or so with the baby. I'm trying to keep my mind on what I have to do right now and not worry about anything else. I'm going to try postponing the emotional basketcasery till at *least* halfway there.

Those that have my cell number, feel free to call. I may not answer, depending on what's going on. Those that wanna text, go for it. We're bringing both Jeff and Sam's laptops (mine's a desktop, so it's going to just guard the house) and we'll be theoretically checking in now and then.

If nothing else, I'll make a phone post letting y'all know when the surgery is and when she's out.
myschyf: (Default)
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.
myschyf: (Default)
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.