yet another food question/ new photo too!

Children and adults with cleft lip and/or palate issues

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yet another food question/ new photo too!

Postby BabyZoey » Tue Jun 06, 2006 12:15 am

So, the G-tube was placed for Zoey last Friday! It is spilling and leaking causing the site not to heal and they have to do very low feedings through it. So, it isn't working. Tomorrow they'll put in a j-tube(goes lower in the belly) to try to allow the g-tube to heal.

Well, she still takes from the bottle too. Not enough yet to satisfy her nutritional needs. We have the Mead Johnson bottles with the Nuk nipples and she seems to take well from these. Any suggestions on how to prevent her from gagging on the nipple? Her gag reflex is horrible and before I even squeeze she gags! I don't want to squeeze when she is doing this out of fear she'll choke! She has really bad reflux too. I heard this is common with cleft lip/palate kids? Do any of you have any experience with reflux? She is on Regaln and prevacid to manage her severe reflux. Any suggestions would be appreciated.

Here she is- taken today- one day shy of 6 weeks! I know I am a tad obsessive with the camera! lol

Image
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Postby Kerri » Wed Jun 07, 2006 6:34 pm

It looks like she's giving us a dirty look there lol..She is gorgeous! I've heard that cleft kiddo's have a lot of reflux too..Our 2 year old (non-cleft affected) had reflux..She slept in her car seat until she was about 8 months old..CRIED ALL THE TIME!! Ella we kept propt until 3 weeks after her surgery (about 7 months)...She was a car seat baby too!! I don't know about the gagging..Ella seemed to a lot too..It just took a lot of practice and patience..She let us know how far to put the nipple in and how much to squeeze..She uses the Mead Johnson as well..She looks like she's doing well!! I love seeing pictures of her..She likes that Nuk, doesn't she!
~We are never given more than we can handle~
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Oh she is so cute! ... m..

Postby VilAnd » Wed Jun 07, 2006 7:47 pm

What a DOLL she is. :)

Vilija used the Mead Johnson bottle also, with the Nuk nipple. She wouldn't take to the cleft nipples that came with the bottle. I remember though, it was such a struggle at first to feed her. First off, I wanted so badly to nurse. Oh wow, that was so hard for me to have to resort to a bottle. :( Then, once we began finally, it took her an hour just to take a half ounce. Needless to say, I had many many sleepless nights.

Eventually, we all got the hang of it. I only allowed certain people to feed her, because of course there was a certain way to do so. Just go slowly, don't squeeze the bottle too hard. You'll get the hang of it. Trust me.

Good luck.
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