DD NG fed...trying to get her off tube....anyone else done this or doing this?

[luath]

DD has severe unexplained feeding problem. 23 weeks old and refused bottles/unable to suck/ coordinate sucking since weeks 12! Trying to wean DD now and also get her off the NG tube. Has anyone else any experience of NG feeding and getting LO to feed orally after an extended period being tube fed? ANy support greatly appreciated as I'm feeling quite down about the whole situation.

Oh gosh luath. I could write a book lol!

Firstly - loads of sympathy. My dd was ng fed from 4 months for about a year. She was unable to suck due to heart surgery and having DCM. It was just too much effort and all her feeds were thickened/fortified too so there was no way she had the energy to get them down. She had a degree of oral aversion too, linked to the tube being passed I think.

Questions - How are you feeding at the moment? Does she take anything orally or does it all go down the tube? Are you pump feeding overnight? Can she physically swallow but not suck/swallow?

Wow another person with NG...I'm so relieved to hear from you I've felt soooo alone! DD appears to have no other medical problems despite EEg MRi bloods scans etc...but total inability to suck...possibly started with oral aversion maybe due to reflux but no evidence for that...pH study negative, DD on infatrini 550 mls daily plus 400mls cooled bolied water to keep her hydrated. I've been giving a tube feed 11:30 pm and 6am of 110mls each plus 9:30 ,1:30 and 5:30pm attempts at pral feeding. SHe takes 3 small spoon feeds at each of the daytime feeds and then I try to get her to take the infatrini(thickened up) via a sippy cup). so far at each meal on an good day she can take 50mls at a feed via cup. than I put the remaining 60mls down her tube. she is often sick at meals and her whole feed comes up...did this happen to you? I wonder if the tube annoys her throat so sometimes she is sick. I hate seeing her with the tube and everyone I see asks why she's on the tube? I'm so stressed as I find it difficult to see beyond this situation and to see her feeding without the tube. How did you get your LO off the tube once he was strong enough to feed?

It is really stressful, I know. You just sort of live from one meal to the next. It will end though, promise.

Dd was often sick due to a combination of heart failure and reflux. The tube can irriate the gag reflex too. I've had one in myself and it can feel a little odd. Dd initially had continuous pump feeds at night, then we switched to just bolus feeds as she got bigger.

Do you have a dietician?

I didn't even try to wean dd until she was about 8 months. She needed the calories from her milk. We started with 'melt in the mouth' type food. Her first weaning foods were quavers, wotsits and chocolate buttons (hope the MN food police aren't watching )If your dd has some oral aversion you may find that she gets on better once she can finger feed. She has control then. Also introduce lots of food play, stuff she can get her fingers into and then lick off. Dd liked toast fingers with cheese spread. The cheese got sucked off and the toast thrown away more often than not as she didn't like lumps.

What is your dd's weight like. Can you afford to drop one of the night feeds so she's hungrier in the morning? Obviously speak to your dietician if you have one.

You sound like you're doing OK - at least she is allowing you to spoon feed. Just take it nice and slowly and you will get there.

thanks saggarmakersbottomknocker. I thought vomiting was due to the tube so its good to get some reassurance. we do have a dietician and she's lovely. I'll speak to her again and see what she says. Do you think that in time she'll increase the quantities she takes from the sippy cup? shes only 23 weeks so is quite young to be taking from a cup at all I think....but this is my first LO so I'm not sue when most babies start taking from a sippy cup and even then how much is realistic for her to take that way at this stage!?

I'm a little out of the loop with babys and cups TBH. Dd is 13 now and if you saw the dinner she's just put away you'd never believe that she had feeding problems

I'm sure she will improve with her drinking though. We used to syringe dd's milk into her sometimes when she'd pulled her tube or vomited it up. She did that quite often!

Your dietician should be able to give you a calorie and fluid target if you don't have it already. Then as her solids increase you can reduce the milk just as you would if you were weaning a bottle/breastfed baby.

As a said we started weaning at 8 months and she was tube free by about 16 months I think We did have some times when we left her without the tube for a few days just as a trial run and popped it back if she got dehydrated or lost weight. It can be a bit demoralising though.

that's really encouraging. It sounds like we're on the right lines we've just got to keep going and we'll get there eventually. I'm delighted to hear though that you got your LO off the tube by 16months though...that's great...and even more encouraging to hear now that she's 13 and eating normally! ...how I long for that day! Thank you so so much for your support....I've been feelinig so alone now knowing anyone else who has had to feed their baby by NG tube for an extended period of time.

Hi luath, we seem to have something in common with babies feeding problems.Saggarmakersbottomknocker has put me on to you. MY dd is 71/2 mths and having real problems. She has been ill since beginning of December and reducing feeds. She dropped 2 centiles and only weighs 14lbs and still losing.She is now refusing all milk feeds so trying to feed with spoon and solids but not very successful. Saw consultant yesterday whom feels if she does'nt improve over the next few days we have no other option but to put her onto the tube.Luckily she has had all the relevant tests and so far so good with no answer to why this has happened.I know how you feel as I am so lo and depressed about the whole situation. She is my 3rd baby and my 1st dd has Aspergers and adhd so my life is pretty stressful. Very unsure about what to expect with this tube feeding and what faces me when I get home from the hospital. Did you find it scary and hard to handle? Any advice or correspondence is greatly welcomed. Thanks jenlynn.

WOW so good to hear from you! I thought I was completely alone! I totally feel for you and know what you are going through. If I can be of any help or support please feel free to email me. being the third of 3 LOs is certainly a harder situation than mine as mine so is the only one!

The drs here have no explanation for Dd refusal to feed and it has been my worst nightmare as this is our first LO...so don't feel inclined toward any more after this!!

Anyway, NG has now been in since mid December. We have a dietician and are intouch with the 'feeding Specialist' both of whom have been wonderful. NG tube was last resort at hospital as DD had gone over 12 hours without feeding and also had dropped off her centile and wasn't producing wet nappies. NG tube feeding itself isn't difficult. What I find hard to deal with is that there is no reason why she needs the tube and yet wihtout it she doesn't feed! My Dh has been taught to pass the tube as Dd manages to pull it out every few days and although that is very upsetting to watch it is better to learn to do it yourself as that way you can be quite fast and proficient at it and it is therefore less traumatic for your LO. I admit I do find the situation very very upsetting and stressful but I keep trying to remind myself that this can't last forever and that eventually she'll learn to feed properly. We too have had every test known to man done with nothing showing so essentially she is fit and well but either can't/ won't take her milk from a bottle. We have finally had some success by training her to use a sippy cup and thickening the milk with special thickner and also spoon feeding...she seems to like dairy-lee cheese so am giving her plenty of that! Have you tried using a feeding cup with your LO? Our plan is to hopefully get her off the tube by encouraging her to increse her intake via the cup.....I feel so desperate as I keep doubting this will work but currently there seems no other option as without the tube she was getting worryingly dehydrated and not gaining weight! YOu have all my deepest sympathy and LOL as I know how hard this is. Please take some reassurance though YOu are NOT ALONE and I hope you get through this as well as me really soon. Look forward to hearing from you

Hi, my son used to have an Ng tube since about 3 weeks ago. He had it for almost a year as his sucking/swallowing isnt that good. He does still eat and drink a little orally but for him with all his other probs he has just had a gastrostomy! Its easier than the Ng but just persevere with the oral feeding im sure it will pay off eventually.

My DS was tube fed for 6 months after being seriously ill and having a liver transplant. He was older than yours so it may be a bit different (13 months at the start). We didn't give an over night feed, but instead gave bolus feeds at normal meal times and then one small bolus after he was asleep to top up the volume. We would then try him with normal meals before starting each bolus so that he had some appetite for food. It took ages to get him to start eating because he had a complication with his transplant which made his liver enlarged and it squashed his stomach so that he felt full. He also vomited quite often.
Eventually (after 6 months), we'd had enough of the constant replacing of the tube when it came out (I used to do it and it's quite easy to do, but is very stressful and upsetting to make your baby cry like that, but much more convenient than having to take him back to hospital to have it replaced). I decided to wean him off the tube and onto a bottle for his milk plus 3 meals a day. It took us a week to do this, slowly building up the amount he would take. He also seemed to have to re-learn how to suck - but he'd never had a problem with this before he was ill, so different from your situation.
Now (aged 2) he still has most of his milk from a bottle, but we've started giving him one milk feed from a cup. He has about 600ml of fortini (which is a high energy feed) per day and it is split roughly 150ml after breakfast, 200ml after lunch, 100ml after tea, 150ml at beadtime.
His appetite for food is variable - he's not really interested in breakfast, but usually eats lunch & tea, but only small amounts. This may be because his appetite is satisfied by the calories he gets from the milk.
Sorry for long reply, but hope it is useful. I think if you can get your LO to take milk from a cup then top up with a bolus this is a fantastic way to start. Then with adding in solids, try to offer them before a feed so she has more chance of being hungry. Good luck and I hope you start to feel more positive.

Hi everyone. Just wanted to let you know after all your replies the following day, last Saturday ended up in hospital.LO put on NG tube. Finally been seen by speech pathologist going to Alder Hey Children's hospital for camera down throat to monitor swallowing and checking for anything else. Hopefully Monday. LO still in Dad taking over for a while as I have been so ill with flu. Also LO broke out in Chickenpox today. Having a great time of it at the momement. LO keeps pulling her tube out. Will more than likely be coming home with NG just waiting on them training us up. Will le you all know what the outcome is.Thanks.

Was thinking of you jenlynn. Posted on your other thread. Sorry to hear she's still in but hopefully the NG will help her gain some strength.