NG Feeding Tube Experiences Please!

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.

xx

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:

P.O.P.S.I.C.L.E (Parent Organised Partnerships Supporting Infants and Children Learning to Eat)

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 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?).

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

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.