NG tube and general rant

[LolaFerrarisleftboob]

Hello

Hope this is the right place...

My baby has been NG tube fed since a few days old (before that he had tpn).

He has respiratory problems (small nose and floppy pharynx) and also some other health problems (endocrine related).

When he was born a syndrome was suspected and he has had specific tests for Pws, downs, Edwards, pataus and a micro array done. All were "normal".

Once he got his meds for his endocrine issues he had a massive improvment in health e.g. Off ventilator tone improved pulled out vent etc.

But due to the ongoing resp issues he was never able to suck breathe and swallow without tiring himself after 5 mins.

So the NG tube is here to stay. Had some brief success with a bottle and had loved a dummy since a few weeks but now I believe due to a medical procedure he had repeatedly performed he gags at a bottle of a dummy.

He is showing many positive signs now head control improving a few little smiles etc.

I have a steady stream of professionals into my house and they seem to want to slap a label on my baby and send him down a certain path. People are already talking about pegs etc which I have shut down.

I feel very patronised not that i don't want to have a child with special needs but he is a tiny baby and he needs to be given a chance.

Everyone I have spoken to re getting rid of NG is not hopeful and it's pissing me off. My baby has never aspirated into his lungs. There is no evidence yet that he will not develop as a nt child albeit one with health problems. Hopefully he will outgrow his resp issues and his endocrine stuff is manageable with meds..

The salt we saw actually made me burst into tears with her attitude.

All people keep saying is "does he have a diagnosis".

Sorry just wanted to let off some steam to me it should be about what my baby can do not what he may not be capable of in years to come.

If anyone has any advice of moving from continuous to bolus NG feeds and then weaning to solids and a cup from NG I would love to hear from you. The dietician allocated to us is like Lord Lucan and when she can be found says she will not change the feeding regime whilst there is ANY vomiting. He's 12 weeks old ffs.

Most children don't wean till there a little older these days anyway , so NG feeds continue for a while would be safer bet , but when comes to weaning stage rather than try pure liquids ask about trying semi solids like porridge / ice cream . Give chocolate button in month to melt , see if able to manage this easier than pure liquids that could go onto child lungs if unable to swallow properly , could you ask for different dietician , although be wary of this as can get people backs up .

If your baby is gagging at the bottle/dummy then he could he developing a total food aversion. The professionals don't usually mention that this can be a result of ng feeding. It can cause difficulties with weaning because food going past the tube in their throat can be uncomfortable - so going by my ds it was a case of very smooth and very sloppy. He was particularly fond of jars of fruit puree which were far smoother than anything I could make!

Do try to keep up with the dummy particularly during his tube feeds - it's important that he associates sucking with getting a full tummy - although this is easier with boluses.

we didn't see a dietitan much - do you have a community nurse or a nutritional care nurse? They tend to know more about the mechanics of feeding than the dietitians anyway.

Thank you.

I don't want to wean him till six months actual but I would like to get back to bolus feeding before then so he knows hunger. Sorry if I didn't make that clear.

I am so worried about a food aversion. He had a nasal pharyngeal airway and the result is the gagging he will just now about tolerate a finger to suck on.

I agree all the dietician seems good for is working out calorie requirements.

I am not very impressed with my CCN either tbh both times they have made a has of changing the tube once sending us to a and e for xray. Think I'll learn to do it myself.

Ta for tips about the smooth food.

It is so weird when everything starts to revolve around what you/dc cannot do, when normally all people talk is about what you/dc CAN do. 'Hello, nice to meet you. I'm X and I haven't learnt to milk a cow yet, and I can't make plastic'. It just isn't natural.

I like it that you talked about his progress and 'few little smiles'. So he is definitely enjoying himself and making progress.

When I was becoming disabled, the constant assessments where I listed what I could not do, and lists of 'you won't manage hot weather' and 'when your stomach muscles go' was overwhelming at times. I was diagnosed with MS so everyone thought they knew best. I probably don't have MS because I don't fit the pattern, but they said they can only be sure if they give me a post mortem, so I am passing on that!!

I was in Egypt when it was 45 degrees, my stomach muscles did go and are now back, but none of this stopped be being happy, with my 2 great kids.

There is no reason why you and your very DC should not be happy, whatever the future holds.

If you are enjoying DC and DC is enjoying life, that is a great thing, and far, far more important than a diagnosis

Lola , you could try adding up the amount of feed he's getting over the hours that your feeding him and give as bolus doses divided by how many times you want to feed him , or feed overnight normal rate and divide day time dosage for three or four feeds and see how he gets on for a week , as food going straight to his stomache so getting same nutrition , but obviously the medical staff not be happy about it , but he's your baby if you feel that's what you want to do .
Would this upset his other medical conditions though , eg blood sugars as you know his other conditions . Sorry as don't know full extent of your little mans difficulties and will be total different from others experiences , could you speak to his endocrine consultant to get someone on your side for support , have you got a decent health visitor , who could maybe advocate for you .
You need to feel comfortable with what you decide to do , not what me or any other random person on the internet suggest , as we don't know all the circumstances , so please take these suggestions with a pinch of salt , so to speak .

I hope that my wee man's story can give you some hope.
He was ng fed from birth, also with resp poblems, also with what turned out to be no diagnosis.
Whilst the ng (continuous and bolus) kept him thriving, he got to a certain stage when he started pulling it out repeatedly, and peg began to be mentioned. I was very worried about this; it seemed so permanent, and indeed I was told it would probably be permanent.
By this time he had a total oral aversion.
The peg was fitted around his first birthday and it was so sucessful he was able to be discharged from hospital for the first time.
Whenever the dietician wanted to change the regime I would think !?!?! He was very good at explaining why, and how it would work, and I trusted him.
Meanwhile, i was slowly slowly slowly working on the oral aversion.
Fast forward to now; my wee man is totally orally fed, in time for him to start school.
Strangely, chocolate and cheese were the worst aspiration culprits for him when weaning.
You say you want your little one to be given a chance; the peg may be the key. It is so much easier than an ng tube, and more comfortable for your baby. And my wee man is proof that it is not always permanent.
But this is just our story; trusting the proffessionals worked for us. And my wee one's circumstances are not the same as yours.
Your baby is still very tiny and you have been thrust into circumstances that you never imagined.
It can get better.

You can get a mesh bag which you put food into so that babies suck safely. Not sure what it's called. Useful for when you start your 6 month weaning schedule. In the meantime can you just gradually increase the volume of feed so that they become more like a bolus feed. Either by gravity feeding or increasing the pump speed?

Aww you lovely people.

I was losing it a little yday I think as no sleep. DH did a night last night and I feel like new woman. Also I think eating is such a loaded thing, emotionally. I expressed for 8 weeks and felt so sad to stop but he was not going to bfeed and I was losing my mind (had huge supply and was in agony all the time and couldn't express and look after him / meet with drs). Plus he was not thriving on ebm at all.
I am also beginning to think peg may not be the sum of all evil. Can't imagine what drinking and eating would be like with an NG in not too comfy I expect.

Thank you so much you are very kind. We have some more investigations early next week and hopefully that will provide more answers.

We do have blood sugar issues. I had a little cry to my specialist nurse and their team has a dietician who I can speak to if I can't resolve things with mine. It's so tricky having a baby with addition needs I try to treat all my interactions with his drs nurses and others like I'm at work and be professional but it's very hard.

If anyone has any links to good tips for the oral aversion issues I would be grateful. Just been told to touch in and around his mouth is that all there is to it?

Thanks for everyone who had suggested stuff and offered a kind word.

Lola, so pleased to see that you are feeling a little better after a good sleep.
My wee one was very late being weaned as he had been so ill for such a long time compounded by the oral aversion.
Don't worry too much if your baby is not weaned at 6 months. If he attains the skill is more important than when he attains the skill. It is better to be patient as pushing it can just make things worse.
Ds's oral aversion was so severe that he couldn't bear being touched anywhere on his face from the eyes down. He hated being kissed on his face.
I didn't find anything helpful online (but you might; what doesn't work for one might work for another).
What I did was several times a day I cuddled him in, put my mouth on the top of his head and sang little songs and rocked him. After a couple of weeks I moved my mouth down about half a cm, and repeat, and repeat, until over months I could sing and rock with my mouth touching the top of his cheek. I slowly was able then to do the touching of the area around his mouth. It took a long time but only when he felt comfortable with that was I able to introduce food, and then just for "fun" to begin with. To finger, play with, smear.
Over the course of time he began to poke a foody finger in his mouth, then a tiny spoon.
Meanwhile he tube feeds were slowly adjusted to make him hungrier at mealtimes.
As he began to eat (rather than play) with food his tube feeds were reduced.

Please try to remember to be kind to yourself! You will be much more invested with your baby than in any job you've had, and some days it's tough.
You will get lots of support from many lovely folk on here!

Lola if you can do learn to pass the tube yourself. It isn't the nicest thing to do but if you cant get hold of a nurse its easier than going to a&e. I let the nurse do the routine changes (if only because she was the only person who could pass it uo his left nostril where there is some sort of bend!) I did the "unscheduled" changes. Swaddling him to keep.his hands down was very handy.
He has a peg now and I change that. Occasionally I ask the school nurses (he goes to special school and they have a team on site) to do it and check the size.

A PEG isn't that bad as it takes away the pressure of feeding and weight gain. An ng tube in itself can be a barrier to normal feeding although many babies do manage with them quite happily.

Lola agree with so many posts on here.
My thoughts are I have 2 DC's who have PEG/PEJ fed and it has been life savers for them and me!! Neither will ever feed orally due to their anatomical problems so we have to "go with the flow"

As a very old paediatric nurse we as student nurses had to pass NG tubes on each other. The experience was horrendous and no way could I have eaten or drunk with that tube at the back of my throat.

If your LO has a PEG it will take the pressure of eating off you both and allow you both to enjoy the feeding process however long it takes. You will not be anxious about his nutrition.

BTW passing a NG tube is easy so if you go down that route please learn to do it yourself

Good thoughts are with you, take care x

Hi Lola I've sent you a PM.

Dd2 was ng fed to start with (no suck/ gag reflex) and whilst she was still in special care (5 weeks) I lost it with the consultant as I felt exactly the same as you. We had been told there was no specific reason for her condition (she was born full term at 9 lbs) but needed vent, had suspected seizure activity and no suck/ gag, etc etc.

Anyhoo. After I explained to the consultant that I felt she wasn't being given a chance, (the nurses were using the tube without even trying to stimulate a suck) he agreed, and her care regime was changed.

We were discharged with a specialist SLT (feeding SLT lol, I was a bit nonplussed that my tiny baby had a speech therapist) and she was honestly the most supportive therapist we had (we also had physio and eventually OT etc etc).

She recommended this website new-vis.com hit on the 'feed your mind' tab. The website is run by a specialist feeding SLT and has a ton of ideas for tube fed kids and other kids who have oral challenges.

We used face tapping prior to every feed, and you can use lemon or other swabs and the muslin pouches someone else was talking about up thread.

Dd2 slowly started taking bottles (topping up with ng) used thickeners as thin liquids were more problematic, and we worked through a lot of challenges (textures were a real issue). She did have some issues with aspiration as a result of choking events, but the SLT supported us in NOT getting a swallow test done, as this would undoubtedly have suggested no oral feeding. We took a conservative route and the GP had us on an abs by request list (we often knew when she had aspirated and would collect abs in case an infection developed.

I'm aware this all sounds fairly bizarre, but it was the right route for dd2. She is an utterly solid, healthy kid who now eats completely normally, with a few quirks (she has little lateral tongue movement, so food initially had to be placed in the sides of her mouth). I am not advocating oral feeding for all kids, and there are many instances where other options are far smarter - but in your posts I recognised the same sort of feeling I had - my child is not being given a chance. I felt that the medics were essentially writing her off as it was easier, and had less risks overall.

We saw our allocated dietician once. I never went back.

If you haven't got a feeding SLT, find out why not.

I should also add that ds1 had some interesting issues too - he had rsv at 11 weeks, and spent several weeks using a nebulised for hours a day (which he hated). It was a further 8 months before he would allow any form of plastic/ inanimate object near his mouth. I had many well meaning health professionals who borrowed him to try to bottle/ cup/ spoon feed him as they struggled with accepting that he was completely refusing feeds except bf. So, easier with him as he could at least bf, but I do understand the extent of the aversion.

With dd2 we just built up the oral feeding gradually, with ng top ups at each feed. It went up and down (and at one point she was hospitalized again because she completely refused to feed) but overall continued to improve (her suck was very weak initially and she always struggled to breathe and suck. The whole timing thing was beyond her.) for a long time we became mostly nocturnal and fed her at night as it seemed that she was more relaxed (muscle tone issues) and could coordinate her breathing better. So we set alarms and woke and fed her throughout the night, as she couldn't feed during the the day.

So the gradual stuff along with the new-vis stuff was great. And my feeding SLT kept me sane. Really. I lost count of the number of times I turned up at the GPs in tears because she wouldn't feed. They were terrified of dd2 and just sent me to the hospital every time.

It's hard to believe now, looking at her. Her favourite dinner is roast chicken, particularly if she is allowed to rip the leg off and chew the meat from the bone...

Good luck x

Just seen three messages thank you.

If you have seen my other thread, ds is now getting a trachy. So this will change the game a bit bit the drs seem very keen to overcome the aversion and try some new things. We are looking at a few weeks in hospital and I feel confident we will get some decent help whilst we are in.

Thank you lovely people of the SN board.

These not three silly phone

That's good. Have a look at the new-vis website anyway - it has a lot of stuff about aversion and kids with all sorts of oral issues - you might connect it all to the stuff the profs will be working on with ds.