[bula2008]

My 3 month lo has struggled with severe reflux from 2 weeks old. By 4 weeks he was only taking 20ml from the bottle every 2 hrs before pulling off the bottle and screaming. We were unable to get him back on.
After many trips to hospital for dehydration and FTT he now has an NG tube so that we can ensure he is getting enough fluids.
We have been told to offer 100ml every 3 hrs in the day and when ever he wakes up in the night. We are to offer the bottle first and whatever he doesnt drink gets put through his tube every second feed.
This was working in the beginning and he was sleeping 6 hrs in the night before waking for another feed. He is now taking 80-100ml most feeds.
However now that he has started to put on weight he needs more calories each day and he has added an 8th feed in meaning he can only sleep 3hrs at a time.
I cant force the bottle on him as that makes him refuse the bottle more. I have tried making him hold out a little longer before feeding him in an attempt to get him hungrier however then he gets too hungry and cant settle himself down enough to feed.
He is wanting to try and stay awake for longer periods however he does not have the energy to be able to which makes it a battle to get him to sleep. He either ends up over tired and doesnt sleep or ends up over tired and again cant get it together to feed.
I have asked the paeds about increasing his volumes in order to try break this cycle however they keep telling me to keep going with 3hr feeds.
I am getting very exhausted and run down from lack of sleep and fighting to feed him and i know that things needs to change for everyones sake.
Has anyone had a similar situation ir have any suggestions on how i can get him to take more each feed??

[vswannie]

Hi bula1980
I really feel for you as we were in this situation too a few months ago. DD also had suspected reflux and allergy issues and was an hysterical feeder from birth, ending up on an NG tube for a while with hypoallergenic formula. 100ml was a very good feed for her most of the time, we struggled to get her taking more than about 40-60ml orally.
I am very sorry to say it but I do not believe there are any magic answers other than time which will help you. Then single most important thing you can do is try to keep your bub feeding orally as much as possible, and this means not forcing the bottle on bub, not forcing too much in orally when bub gives 'stop' signals, and not giving too much down the tube so that bub ends up lazy and not hungry enough to take oral feeds. Unfortunately, giving too much orally or down the tube will risk upsetting things. I would be inclined to follow their advice very carefully and struggle through for another month. If you have a partner,mother, friend or anyone who can help, don't hesitate for a second to ask them to do feeds, even if it is a hassle teaching them to handle the tube, PH testing etc.
In another month, bub will be able to try solids and for us this was a huge help. It filled her up a bit, gave us a chance to experience feeding as a positive event, and helped her sleep a little better as she had something on her tummy. She took to spoon feeding solids very enthusiastically - a relief as we were worried she may have further oral aversions. If you can make it through another month, that option will open up for you and hopefully make things easier. Also, I assume bub is on some kind of medication like omeprazole - does this maybe need to be increased a bit? We got to a huge dose (10ml a day) but eventually we found the critical point where it worked.
I am so sorry you are going through this, and I can recall the worry and confusion and despair about where it will end very clearly. I know every day feels like an eternity at the moment, but please take hope from our journey. It can get better, and in the next couple of months it probably will. DD is off the NG tube, quite likes bottles now (though will never be a big drinker) and eats really well. At 11 months, she's finally got it together - and so have we. Do feel free to PM me if you want.

[vswannie]

PS - my partner just reminded me that we had a drip pump overnight for a month or two. It connected to her ng tube, and dripped food in gently overnight. You did have to get up once in the night to refill the formula bottle as you could only leave it for four hours at a time, but it was pretty helpful. Perhaps you could ask your paed if this is an option to help you get more sleep, even if only for a short time or every second night? The hospital supplied it to us free of charge and sent a nurse to help train us how to use it.

[bula2008]

Hey. Thanks for the reply. It is amazing how much beter things seem when you know domeone else has been through the same thing and made it to the other side!


I have been trying to PM you however I keep getting an error message. I will keep trying.

In the meantime do you mind telling me how long your DS had the NG tube for?

[vswannie]

I'm glad it was some help. At the time we were going through this, we would have killed to hear from someone who made it to the other side without a JPEG etc...The hardest part is not knowing how it's going to end, and it doesn't help when you google and only come up with stories of people who ended up with severe oral aversions and JPEGs still in place 9 years later!
DD had the NG tube on and off for about four months, until one day when she just pulled it out herself and refused to have it back. Like your bub, she continued to take some oral feeds whilst having the tube in, and we worked very hard on oral timulation while she had it in (by stroking her cheeks, touching her mouth, letting her put lots of toys in her mouth) etc. We believe that was critical in allowing us to get rid of the tube eventually, and in ensuring that she would take solids orally, which allowed us to not worry so much about the small amounts of liquids she drank. Your bub sounds very similar to ours in terms of behaviour, drinking habits etc, so no matter how hard it seems now my sense is that you're in a reasonably good place for a bub with an NG tube.
If you can't PM, you are welcome to email at elbu88@gmail.com