Talk to me about ng-tube/g-tube/gastrostomy

[southcoaster]

In short this is our story: DS2 was born prematurely in February at 27 weeks weighing 900 grams. Actual age is now nearly 6 months, corrected age nearly 3 months. He remained in hospital for 5.5 months, then came home for 10 days then back in hospital for a week with Bronchiolitis. He has been home for 2 days now.

He has chronic lung disease and was ventilated in some form or another for about 4.5 months out of the initial 5.5 months spent in hospital, either on ventilator or CPAP, he has was also intubated 3 times. He is still on oxygen now although minimum.

Due to all the ventilation we got very little opportunity in hospital to try feeding either breast or bottle but whenever we did he would not suck and had difficulties swallowing, so he has been fed by NG-tube all this time.

He also has an awful lot of mucus that comes out of nose and mouth. So he is now at home with oxygen, NG tube and Sats monitor. We have a suction pump and have to clean out his nose and mouth 4-5 times a day (on a good day) as otherwise his blood oxygen drops and he has problems breathing through all the mucus. Docs don't really know where/why the mucus is happening. General opinion is that NG-tube increases mucus so isn't helping us. (Oxygen also increases mucus production). Then we have to clean him out so I think by now he has developed oral aversion as his mouth is always being cleaned out. When he has mucus in his mouth he tries to spit it out and now does the same when I try to give him milk from bottle or syringe.

Also we spend half the day preventing DS from pulling NG-tube out or having to fix it again as the tape has become wet from mucus. So in short it's a PITA, and given that he already has the oxygen tube under his nose, his face is always taped up to keep everything in place and his skin is sore.

Pediatrician mentioned a g-tube last time and said we should think about it as it could hep with the mucus and make us more relaxed to try oral feeding. Has anyone had experience with this? How long did you have it for, how easy/difficult was it?

Sorry for the long post but should I should give the full back history and explain why we think about it - in short we hope it will reduce the mucus problem which makes him really really uncomfortable.

Another question: DS2 sleeps an AWFUL lot and being tube fed means he doesnt wake up for feeds or because he is hungry. Anyone experienced this? Someone mentioned to me that when babies are tube-fed they don't feel hungry, is that correct?

hiya ds was born at 26 weeks and was ventilated for ages and spent 5 months in hospital and has chronic lung disease, so kinda similar story
he came of the oxygen the week before we brought him home and he was feeding so not sure about those aspects but he has become less congested as he has gotten older.

he has had a gastrostomy for nearly 2 years now, we hung off as long as possible but he was losing so much weight it really had to be done, he was 9.7kg then but now he is 6yrs old and weighs over 18kgs so it has been a great thing for him.

it is true that tube fed children tend not to be so hungry but ds does still eat, dont get me wrong it has made him a bit fussy i would say as he now will only eat something if he really likes it as he knows the tube feed fills him up. he can however scoff a kfc straight after a full tube feed so it obviously cant fill him up that much!

i would say go for the gastrostomy as it will help long term with weight gain etc, they say kids with chronic lung disease are prone to poor weight gain.

i agree that it will be easier and less stressful trying to introduce foods if you know you have the gastrostomy to keep him topped up nutritionally, although be prepared for the possibility of it being a long term thing too as you cant really predict at this stage how things will go feeding wise.

Some people think different methods of tube feeding can help with letting children experience 'hungry' - I know some people who only top up over night (with a pump), and when I first had tube feeds I used to get boluses, so I would still be hungry in the morning. That said, I'm talking about teenagers, not babies.

I would go for the gastrostomy as well - as glittery says, definitely less stressful than an NG...and they can always be pulled out (I was tube-fed for 11 years, got my button pulled this summer :D ).

Easier to care for than an NG too, and can be very useful for medicines that taste bad/need to be taken.

Thanks for replies. I'll give it some more thought this week, but we'll also start trying with cereals on spoon - there was another baby with similar sucking/swallowing problems but he did really well with the spoon. Have to add that he hasn't really had weight gain problems but he will soon ready for other food than milk and if feeding remains a problem then we'll definitely consider the g-tube.

yeah actually i should have said, poor weight gain wasnt really a problem till ds was a bit older (around 18months?) he was positively chubby before then although i think the steroid inhalers for the CLD might have had something to do with that too, lol

Hi southcoaster

I'm not sure I can add a great deal to what others have said on tube-feeding, but my DS also has never been able to suck. He did cope well with weaning, though is now stuck on about stage of a 10 month old (he is nearly 3). Even though he was eating I lived in perpetual worry about how much milk he was taking in.

Still, in case you are still exploring drinking options, we had success with a Haberman (pretty sure I've spelled that wrong) teat and bottle and subsequently with a squeezy bottle. Basically both types you really just squeeze the milk into their mouth so very little sucking action is required.

Yes we have tried the Haberman and also squeezy bottles but so far without success. At the moment he just spits everything out as he hasn't understood the difference yet between bad (mucus) and good (milk) in his mouth.