I agree with Linda, don't let getting the tube out consume you or it will be very tough. In my house, it was me versus the feeding tube as well. I let it take over almost every aspect of my daughter's life -- it was all I could think about. The Haberman worked well for Kate at first (she could take up to 60ml), but once she crapped out airway wise and got the trach, she never went back to it. She did well with the Pigeon nipple (able to get more, faster) but the fact is she was 98% tube fed for 22mos. She was trached and once her trach came out, the feeding tube followed shortly after. Keep trying, keep letting her eat as much as she can within the time frame given (usually 20-30 minutes) and then tube feed her what's left. The best thing you can do is let her eat as much as she can safely and encourage her to do it. It will get better.
: Thanks everyone for your responses to my other
: post. I have more questions. Or maybe I
: just need some encouragement.
: These feeding issues make me feel so lost.
: It's so time consuming every day to find
: time to pump enough to increase my supply,
: try to feed Alana from the haberman bottle
: and, finish up what she doesn't eat through
: the g-tube.
: I'm so determined for her to eat completely
: by mouth so we can get this g-button out. Is
: this a realistic goal? They said it was our
: goal when we were discharged. I have no
: idea how long it's going to take for her to
: be able to eat completely by mouth though.
: Weeks? Months? She's getting 30ml now out
: of the haberman......a couple weeks ago she
: could only get 10ml or less. I wonder if
: there is something we could be doing to get
: better at this? Or does it just take
: time/growth. I haven't tried any other
: bottles except the haberman. And I'm so
: worried that she is getting enough to eat
: and is gaining weight. She is still so tiny
: and I want her to grow so her jaw will grow.
: But the docs say she will probably burn
: extra calories working hard to eat. And
: she's been spitting up a little bit too. Not
: sure if she is getting to much air while
: eating, or air while being fed through the
: g-button, or if it's reflux. Or maybe we are
: overfeeding her since she is not in control
: of how much she is eating?
: We do follow up next week with our ENT and
: SLP, so I will be asking the same things.
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