We lasted 7 months so far with our DS1. He has a long history where he was in hospital for 2 months had an NG tube (now removed) and was diagnosed as a CMPI refluxer.
At the moment here is were we are at:
LOSEC (omeprazole) 10mg once a day
Donperidone 2.5mg 3 times a day (weight = 8.5kg)
We have to dream feed him a high calorie intolerance milk (Infatrini Peptisorb) (approximately 2/3 of is daily food intake).
And then struggle to get in a 1/3 of his food intake as solids (baby food jars etc).
He was on an NG tube and we struggled to get him off it but have been off it now for 4 months. All along this 4 months since the reflux/meds started he doesn’t seem to have an appetite, he will never demand food and when you make a bottle he will push it away or sometimes with a jar he will lock his lips.
Its a complete nightmare feeding him and the NHS (we in UK) health professionals just say “As long as he is gaining weight its fine” but to get him to gain this weight is draining me and my wife. We have to feed him at 8pm, Midnight, 3am and 7am (3 dream feeds at night then an early breakfast) just to keep him gaining weight.
I believe this isn’t sustainable but can’t see a solution for all of this.
Does anyone have any good advice/help or similar stories regarding feeding aversion and did your babies eventually get better as I hope we can hang in there and make it. We desperately don’t want him back on G/NG/NJ tube as this is going backwwards to us.
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