tube fed baby wont drink or eat well

Mel - posted on 01/24/2009 ( 16 moms have responded )

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i have a little girl brianna whose almost 10 months, been tube fed since she was 2 months due to aspirating problems. now that her problems have healed up she refuses to drink from a cup or bottle when she does she spits it and doesnt know she has to swallow it and she wont spoon feed. has anyone had simliar problems or had tube fed babies for an extended period of time? any suggestions on feeding, getting her to drink, weight gain, teaching her to sit up/crawl, and getting her to hold down her feeds? im a young mum and would very much appreciate any advice.

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Mel - posted on 01/26/2009

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thanx! she uses a dummy well thats the strange thing and does see speech pathology every fortnight. the bottle is what we are trying pretty often now she jst thinks its a play toy really

Gina - posted on 01/25/2009

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They told me not to force my baby with a bottle because she can develop an aversion to sucking

Gina - posted on 01/25/2009

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She has to be taught to suck try using a pacifier  and consult a speech therapist (also teach swallow and eating)

Julie - posted on 01/25/2009

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It will just take time.  My son was in the NICU for 2 months and towards the end, he just needed to learn to...suck...swallow...breath.  It is just going to take practice on her part and patience on your part.  You will be in my thoughts.

Mel - posted on 01/25/2009

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thankyou so much. we have heard they have lots of errors but also freo hospital say they are great so r thinking of hiring one out for over night feeds would make me and my fiance less tired. im sure she will be fine in another 6 months or so. jst hoping her solids wll pick up. thanks!

Jessica - posted on 01/24/2009

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My son was on the kangaroo pump for years, it really helped him. I feel your pain, I pray that you get her OT very soon. It works wonders. If you need anything at all please ask I am here.

Mel - posted on 01/24/2009

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i havent heard of that here in australia...ive heard of a kangaroo pump which apparently feeds them over an hour if you set it to but havent actually tried it yet. i have her on prescription formula right now to help with the constipation

Jessica - posted on 01/24/2009

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Have you tried pediasure with fiber? I had to feed my son extreamly slowly and ony an ounce at a time or he would loose his feeding as well. Adding cereal to her formula may also help. There are other special milks for a touchy tummy as well.

Mel - posted on 01/24/2009

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thankyou jessica and emily to, knowing when shes full is hard, if i give her even a little over the 180 mills she loses her feed, therefore shes having to have extra scoops in her formula for weight gain which makes her constipated which is a whole different issue.

Mel - posted on 01/24/2009

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thanx for the response, yes my daughter has a nasal gastric tube which is different to the one your son has but also brianna has no known medical reason anymore for needing it. she had it in the first place because she was aspirating liquids into her lungs but now since she didnt use a bottle for so many months she dosnt know how to do it. i think she intakes a couple of mills when i give her a cup but she wont do anything unless she does it herself. your right the burping would probably help, right now we are feeding her in her pram over about an hour 5 times a day and leaving her in the pram for half an hour after to try and help her hold it down but alot of the time she isnt. i did breast feed for 2 weeks because they never picked up she had a tongue tie and there fore was hungry all the time poor thing so i switched straight over to formula and i expressed about one bottle a day for her, then totally on formula after that and when they finally worked out what was wrong she being fed entirely through her tube which is how it is now. im waiting for her to get into physio and OT and right now just spendig all my time makin her lots of solid food before and between all her feeds and shes doing better the last few weeks. id be happy to hear about what you have been thorugh with regards to feedin with your boy thankyou so much.

Jessica - posted on 01/24/2009

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I am also new to this sight.... She will need to have some oral excercises ans stretches done several times a day. OT really healps alot. look up NUK and see if you can find some oral stimulating tools to use to help you.

Emily - posted on 01/24/2009

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I've been tube feeding my 2nd daughter for  4 months now. Can't tell u how upset I am bout not breastfeeding. It's so hard to know when shes full....I have same problem with denying me even trying to spoon feed... shes 7 months.... baby steps.... keep trying with the spoon.. try different foods, try different timing with before.. during or after the feeds... I;m not an expert. I just know I'm gonna keep trying.



 

Jennifer - posted on 01/24/2009

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If your pediatrician gives you the go ahead to try feeding her "normally" then go slowly on instruction of your doc. Otherwise, you should hold off.

Jenna - posted on 01/24/2009

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I have a little boy who is now four who uses a g-tube which was surgically placed. It looks like your baby uses a nasal tube which is less permanent. It is a very difficult and emotionally upsetting experience to not be able to feed your baby. I would love to help and share my experiences if I can. Did you breastfeed? Have you considered getting surgery? Are you looking into other options? A possible avenue for you could be to try some alternative therapy such as feldenkrais. you can look at the anatbanielmethod.com website for information on this technique which could possibly help your baby. Also there are feeding specialists, which you have probably tried as well as OT (occupational therapy). Burping is very important for helping hold down feeds, also make sure that the formula or food is always warm or room temp, never cold, and give small increments frequently to help with keeping it down. I have been through many stages of eating and not eating with my son, it is difficult but I did learn a lot which I would be happy to share if it might help. Good luck! Beautiful baby too!!

Mel - posted on 01/24/2009

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she is on a waiting list currently for OT and physio but not as of yet. she doesnt seem to have the strenth to do what shes supposed to be doing but her MRI scan was all clear. i think im writing this reply in the right spot but im new to this...

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