NG Feeding Tube Experiences Please!
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Topic: NG Feeding Tube Experiences Please!
Posted By: KiwiL
Subject: NG Feeding Tube Experiences Please!
Date Posted: 18 June 2009 at 4:14pm
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So, Jackson is now fully on Neocate and has been for just over a week. I am almost positive that he is not having any pain anymore, but the bad feeding behaviour and lack of interest in food remains. It's driving me crazy. He just never seems hungry. He happily holds the bottle in his mouth, not doing anything, until he gets bored and then all hell breaks loose.
At the moment he eats about 600ml of formula a day, no solids. But getting that into him is a mammoth effort, that usually ends with me in tears. He would quite happily live on 400ml a day, but when we allow him to do that he loses weight. I saw our Paed today, and he wants to put an NG tube in Jackson. The goal is to have it in relatively short term (a couple of months). He wants to get Jackson's weight up to where it should be for his length (about another kg), get his tummy used to taking more food and then to see whether he gets used to food and then takes off in his eating. He's had every test under the sun, all of which have indicated no problems that the hospital can find. So, the plan is to offer his bottle like normal, but to stop when he starts fussing behaviour and put the rest down the tube. Our focus on solids is going to be on finger food knowing that if he gags and vomits, he is still going to catch up on his milk. BUT I am scared witless!! I am so worried that this will create feeding aversions. I've heard that sometimes NG tubes make things worse. I am worried that more food in him will trigger his reflux again (I think he is no longer spilling because he doesn't eat much). I am worried that people will look at us and think Jackson is really sick. I'm worried the tube is going to be a pain. I am mostly worried that this will be a long term solution, not a short term one as they think. Having said that, I can't say I will miss the feeding battles, and I feel like this might just give me the break I deserve. Can anyone share any experiences with NG tubes? Good and bad, I need to hear them and I am terrified of Googling - you only find the disasters on Google. Thanks in advance. I really need hugs right now. 
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Replies:
Posted By: KiwiL
Date Posted: 18 June 2009 at 4:18pm
| Ha ha - latest forum problem! Looks like Kye and I started topics at the same time and hers has also gone into mine (as well as a separate one). Can someone from admin please delete Kye's post? If not, please ignore and read mine which is post #2! |
Posted By: kakapo
Date Posted: 18 June 2009 at 7:47pm
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Oh Laurie, you poor thing - here are some cyber hugs for you I have no experience with NG tubes sorry, but did find a couple of websites you may want to check out? Had a quick look around ...they seem to be run by caring, supportive people: http://www.popsiclecenter.org/index.asp - P.O.P.S.I.C.L.E (Parent Organised Partnerships Supporting Infants and Children Learning to Eat) http://www.mealtimenotions.com/index.htm - Mealtime Notions provides mealtime support for parents and professionals who feed infants and young children with special feeding challenges. Both sites were recommended by someone from a forum called http://community.babycenter.com/groups/a3235/babies_and_children_with_a_feeding_tube - babies and children with a feeding tube (over 100 people post in that forum, so you might want to have a looksie in there too?). |
Posted By: Maya
Date Posted: 18 June 2009 at 8:19pm
Oh wow Laurie, serious stuff  None of mine have had NG tubes in long term, so I don't know much about the ongoing care of them in terms of how often they have to be changed etc., but all of mine have had them at one time or another.
I guess the best advice I can give you is to make sure they tape it down well so he can't pull it out. When they first put them in the gremlins (who were 13 mths), they both pulled them out within minutes. I made them tape the whole tube from where it came out of their nose, right down the back of their beck where it disappeared into their clothes. That way they couldn't get it out and they soon forgot it was even there. Other than that, it wasn't too major, when lil miss had hers in they fed her while she was asleep - must be a weird feeling to get a full tummy while you sleep! Getting the tube put in is a pretty hairy experience as they don't like it very much (or at all!) but once it's in, none of mine have seemed to mind having it in much. Good luck! -------------  Maya Grace (28/02/03)
 (02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: sally belly
Date Posted: 19 June 2009 at 11:05am
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Hugs Laurie, I'm sorry to hear that things aren't improving & have come to this.
Liam had a feeding tube in for a few days when he was born so I imagine it was easier at that age as he probably wasn't aware of it being there. No help to you I realise. Just wanted to give you hugs because you have been through so much -------------    
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Posted By: bext1
Date Posted: 20 June 2009 at 5:44pm
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That's no good!!
The twins had NG tubes for a few months in SCBU, and even at that age would try pull them out - I guess that's the thing that's a pain about them. The going down the back of the throat can irritate them a bit the nurses said. But it gets the food down there, even though they still sometimes spill. Wish you the best with it, and i'm sure it will work . Your poor wee fella!  ------------- 
http://lilypie.com"> 
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Posted By: porcelina
Date Posted: 22 June 2009 at 4:27pm
Hey, I'm a paediatric nurse (yes, one of the meanies that gets to put the NG tubes in!) and even patients that have had them long-term do occasionally get fed up and pull them out. Though he should get used to it. The sore throat from it going down won't last too long and after a while he won't notice it there so much (kinda like how underwire bras pee you off then you don't notice them!) 
So long as he is still getting oral stimulation he shouldn't develop an aversion and getting his weight up is the important thing. -------------   
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