Posted by holly on 12/11/2008, 10:46 am, in reply to "Re: bottles"
68.58.169.12
Oh no!! I am sorry to hear that he is not doing well. I am glad that he got those tests when he did and that now you know and he is getting the help he needs. I am sure too that once he is not struggling so and resting well that his eating will pick up. I will be praying for you and your little one and that he gets through surgery and recovery well and makes it home for his first christmas! Hang in there...
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: --Previous Message--
: Hey Katie...sorry that you are having
: trouble
: with feeding your little one. I don't have
: much experience with the whole tube
: feeding/oral aversion thing, but i tried
: every bottle out there for feeding Kate. I
: hate to think how much i spent! What brand
: of binki does he use? Does he suck on it a
: lot? Kate always did well with the gerber
: soft center pacifier. Kate used a mini
: haberman for the first 5 1/2- 6 months. She
: refused the regular sized one. The regular
: one i think was too long and would put the
: milk right into her cleft and make her feel
: like she was choking. I just now at eight
: months can get her to use either one. Have
: you tried a mead johnson nurser? You can
: get some gerber bottles from walmart or
: whatever that are really small and then make
: the hole just a little larger and put it on
: the the mj nurser bottle so that you can
: squeeze it for him. I have some new mini
: habermans and could swipe you a mead johnson
: nurser from work if you want to try them. I
: know all of this can be frustrating. I
: thanked the lord every day that Kate didn't
: have the struggles with feeding that most
: prs and cleft babies do. It will get better
: and it sound like you are doing all the
: right things for you little baby. Email me
: if you want me to send you those bottles to
: try....good luck!
:
: --Previous Message--
: This might be a strange question but im
: still
: getting used to all that comes with
: PRS/cleft palate. My son, Dustyn, is 4
: months now and has never done very well with
: feeding. He used to take about an ounce with
: the habermann before g tube was placed, but
: doesnt take much now. Actually just little
: drops, and i think its because he gets
: really overwhelmed by the nipple of that
: bottle. He instantly gags on it almost
: everytime and sometimes gets all red until
: he throws up. We've had such a tough time
: with it and have seen multiple
: speech/feeding speacialists. One even told
: us to spoon feed formula(not even w/ rice).
: I guess the point is not to accomplish
: volume, but to get him used to getting full
: from oral stimulation and taste, and not be
: strictly g tube fed. So to get to my
: question, have any of you tried to use a
: regular bottle(prior to palate surgery)???
: if so how did it work for you??? ive tried
: it just to see bc the nipple is shorter and
: just like his gumdrop binki and he manages
: to suck some out, his problem has just
: always been swallowing... i think ive
: rambled enough please PM with any
: experiences/advice?!?!
:
:
:
: Thanks ladies for your input.
: Unfortunately at this time he will not be
: eating orally at all. We went in for a ct
: scan, sleep study and bronch on tuesday. He
: did soooo terribly at the sleep study (sats
: even dipped to 16 even with oxygen)that he
: has been admitted to CHOW. we are so
: heartbroken by this especially because the
: nicu sent him home like this and he was
: probably having this trouble the whole time
: at home. He has an apnea monitor but
: apperently has the type of apnea
: (obstructive) that doesnt alarm the smart
: monitor. So its never gone off and we
: thought he wasnt struggling to breathe. But
: he is and its severe so he his scheduled for
: jaw distraction tomorrow. he'll be intubated
: and i know they stay long recovering and
: turning the pins so we are just praying he
: will be home for his 1st christmas it
: sucks so bad but they are asuring me he will
: be a new baby by the time he returns home
: and his eating/breathing problems will most
: likely improve, if not, hopefully come to an
: end. Please pray for us...i hate seeing him
: this way...
:
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