Supplementing BF for a bottle refuser - NG Tube or SNS?

[chocolateOrCake]

Hi,

I posted a couple of weeks ago about DS's (14 weeks) failure to thrive which turned out to be a heart defect (large VSD).

He has been prescribed some high energy formula to top-up his breastfeeds and get him gaining weight but he has been EBF up until now and has refused bottles and pretty much refused spoons/doidy cups. He lost weight as expected due to being on diuretics but needs to be putting it on now or his heart op will have to be brought forward. I bought a Medela SNS two days ago (basically a reservoir and a couple of thin tubes you attach to your nipples so as he sucks he gets both breastmilk and formula) and am having some success with it.

I was at the hospital yesterday and they gave me the choice of putting an NG tube in him now or using the SNS over the weekend and making the call on Monday when he is next weighed.

I was trying desperately to avoid the NG tube as I assumed it would be the end of breastfeeding but the doctor said you can still BF with the tube in. Does anyone have any experience of using NG tubes and Bfing. Does it work? How often do you have to get the tubes changed? Is it practical out and about etc?

Any advice re using SNS would also be appreciated. At the moment he will only take it from one side and it is making him very windy with more sick than previously but formula is going in.

I am in two minds whether to just ask them to put the tube in regardless if it will solve the SNS problems but want to get as much info together as possible first. I really want to keep Bfing as it is such a comfort to him (I have fed him through blood tests and he hardly noticed). I only have two weeks now before the consultant decides whether to bring forward his op or not. I'd love it to be over soon so I can worry less and he can start growing properly but it would be better if it can be put off a couple of months.

Any wise words much appreciated, thanks.

I only have experience of using a NG tube with ds1 during his first week. I would (try and) feed him, and then top up if necessary through the tube (so not simultaneously). Once he learnt how to latch, he fed happily for a full 24 hours with the tube in and no top ups. I don't know how often the tube needs to be changed, but he had the same one for 6 days. Before using the tube each time, I would have to draw back a little fluid in a syringe and test its pH on litmus paper (the paper needed to go red) to make sure the tube was positioned correctly, then attach a biggish syringe of milk and hold it upside down while it drained into his tummy. Often the full volume would not drain comfortably, and we would have to push the plunger of the syringe, but I think this may relate to trying to put feeds of too large a volume into a newborn's stomach. Other than that bit, I found the NG tube quite easy really. We didn't use it out and about, but I can imagine it would be fine as long as you had a place you could sit down for a while, and space to measure out the milk etc.

I don't know how useful a story of a newborn is, but hopefully some help. Good luck.

All experiences useful thanks. I think the main difference between a newborn and a 3mo is that I expect DS would get hold of the tube and pull at some point. He certainly likes to play with the SNS tubes!

I don't think you could expect a 3mo to keep an NG tube in, so you'd need to be at the hospital to get it replaced alot. It was hard enough keeping DD's one in when she was in scbu - she had to have mitts taped to her hands and the tube well taped to her head.

One issue with NG tubes is that if you don't nurse the baby whilst feeding through the tube, they get used to getting food with no effort. I don't know if that would affect an older ebf baby though. With DD we had to teach her that she had to wake up and do something for food which was a struggle.

I don't think I could cope with either an NG tube or supplementer when out tbh. But then we never even learnt to aspirate the tube as DD was in scbu for "just" 3 days.

Hi there
You can bf whilst your DS has an NG tube insitu. In fact, I don't see why you can't use the SNS with the NG tube in eitherIt will need replacing either weekly or 4 weekly depending on what type of tube you have inserted. However, at his age, he is likely to pull it out quite often so would be better to have a weekly one passed but your HCP will talk to you about this. In our area, there is a community team that will visit your home to repass a tube, should DS pull it out. This is only on weekdays between 8.30-5pm. On weekends and nights you would need to attend your local hospital.

They are quite simple to use and you can either feed via gravity or they will give you a pump. The pumps are very small and discreet (depending on which one you have) and they will supply you with the necessary equipment. Once you get the hang of it, it's very transportable and can be done whilst out and about.

Ask the staff whether you will have the support of a community nursing team as they are an invaluable resource when it comes to NG feeding.

Hope this helps?

Thanks, this has all helped me think it through and realise that it is not a irreversible decision. We could get the tube put in and still work on the cup (alongside bf). I've written down a load of questions to ask the hospital tomorrow. I just want to find a way of putting weight on him without him screaming half the day!

OP, I remember your earlier post and am sorry you have had this diagnosis.

You may get some feedback from the BLISS parent messageboard here as there are quite a few parents with babies/toddlers who had NG tubes for some length of time, and also some who have had to deal with slow weight gain due to underlying health issues. Just a thought.