myschyf | (no subject)

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.

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Don't blame you for being furious and suspect of doctors, that was some serious bullshit they were trying to get you to agree with. Ugh!

Hey! You are cool! Mind if I friend you?

Well, thanks for the compliment! Always nice, though generally I feel decidedly uncool :). Friend away! Nice to meet you, my name is Lissette.

I know that feeling! :) Thanks! I'm Jenny, and it's nice to meet you, too.

No, it makes sense that you should write down your (very sensible) reasoning and thoughts on this issue.

And honestly, I don't think medical personnel should expect blanket trust any more than people in any other field.

*agrees with you* *is also really happy at how much Charlie gained in a short time* I've been really worried about how slowly the weight is coming on. I know I have giant babies and she's not feeding on demand, but still.
No doctor, imo, is perfect, but keep plugging to get one you are content with. It's SOOOOOOOOOOO worth it.
Love you.

Your mom is SO RIGHT.

And honestly, a nice, ten ounce weight gain? That's fantastic. And no on demand feeding? That's ridiculous. Don't they have volunteers there, on top of staff? I remember going to NICU once and I wanted to yank Ted from the volunteer because she was holding and changing him and all that, and it was jealousy and I recognized it, and was chiding myself in my head because I KNEW she was doing an amazing thing.

Not trusting medical establishment blindly is the healthiest thing a person can do, I think.

oh, that volunteer thing sounds wonderful. the nicu where my girls were did not have that, and it would have been so nice.

No reason you should blindly trust the doctors. I hope the pediatrician is one with some sense. Sometimes they need to be reminded that M.D. does NOT mean "Multiple of the Deity".

I'm right there with you on the distrust of the medical establishment thing. I don't mention this often, but my Mom had a very light form of Munchausen's by proxy. Back when I was a kid, nobody'd ever heard of it and they didn't catch on to the fact that whenever my Mom needed attention, I'd develop some mystery illness. The thing is, I saw firsthand all the things that doctors will do to kids in the name of convenience or covering all the bases and so on. You always have to be on guard against doctors getting "John Wayne" syndrome and wanting to ride in and do something extreme, just because they can or because they've never had the chance to do it, or because they read about it in a medical journal. I think the number of doctors who do things solely because it's the right thing to do and because they really think it'll -help- is pretty small, sadly.
I think the best thing to do when dealing with the medical establishment is proceed very, very cautiously and with a heaping helping of skepticism - as you're doing now. Charlie's really lucky that she has you and that you're not the type to let the doctors bully you into something that you don't feel is right for her.
Still sending lots of love and light and good happy juju you guys' way and hope it helps!

I haven't been commenting, but I read every post and I wanted to tell you that I think you guys are amazing and Charlie is in my thoughts every day. Good for you for standing up for what you think is right and against what you feel is not in the best interests in your child.

You will be, for her whole life, her best and fiercest advocate. That's what mothers are, that's what we do. Sometimes we have to advocate in the face of other people's fuckmuppetry, and sometimes (this part is the hardest) we have to do that in the face of our kids trying their damnedest to shoot themselves in the foot. It's tough, it's the hardest job you'll ever do.

You're doing great. She's so lucky to have you fighting and thinking in her corner, not just blindly trusting the medical establishment.

I hope she can come home soon.

your mom passed on good mom genes to you! ;)

still hoping she'll be home v soon.

*hugs*

I've never been much for trusting the medical establishment :( I hope you get Charlie home soon. Very, very soon.

I just haven't had the time to comment much or at all, but I've been reading, and my heart hurts for you. How are you doing? I have been concerned about postpartum depression setting in because of all the crap you've been dealing with.