So I caved and had Adam give Bree a tube feeding for dinner. The best feeding we had was the one I blogged about. All of the others she refused to feed herself, and it was a struggle to get her to open up for us to put a spoonful in her mouth. We would struggle to get her to eat a whole container of baby food for one meal. That alone would take take one hour and is only 80 to 110 calories. Multiply that by 3 meals and two to three snacks and you've got 300 to 400 calories. She needs 1,000 calories a day.
That doesn't even count the fluid intake she needs. That's more the reason why I caved. No wet diapers today. So, we decided to resume our normal g tube feeding schedule for her. I wish that we could find someone (who is a professional) that knows more about tube weaning. All the doctors we have either don't support it, or don't know much about the process and what is normal. I'm going to have to do more research.
Getting Bree off of this g tube seems like a daunting impossible task. How are we supposed to get her off of it with her maintaining her calories, her fluid intake, and some amount of our sanity?
3 comments:
Hey you. It will all happen with time. I know how frustrating it is. One of our heart friends, Bela, had an appointment with Marsha Dunn Klein at her feeding clinic and Tucson this week. I'm anxious to hear how it went. It's a 3 day intense clinic. I don't know how you get in, or what it's like, but I'll let you know as soon as she posts about it.
Andrea - I would LOVE to hear about her experience! I may even want to pick her brain about it. :)
Hey girl.. we're still working on the wean as well. Just keep plugging away. It's never a steady increase, but up and down. Sometimes I'm ready to pull my hair out, sometimes I'm so excited I can hardly thing.
My friend Becky weaned her son w/o really any professional support (her OT was supportive, but not really involved.) She's who's guiding me through as well.
We WILL get there.
have you checked out tubefedkidsdeservetoeat?
I don't care a whole lot for their format, but there are some videos and stories there that are really inspiring.
And you're more than welcome to play on the preemie board I started. Becky is there, with a couple of other tube fed moms..
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