Hello everyone,
I'm afraid that I'm after more of your fantastic advice. My lo is struggling to put on weight. At 7 months (4mths corrected) she's still only 4.5kg. Although she is steadily gaining weight (120-150g per week) and developing well, with lots of energy, we saw the consultant on Friday and she said it wasn't enough and she wants to give Nadia an NG tube.
She's currently on Infatrini formula milk but is showing signs of wanting to be weaned so I'm seeing a dietican in the next couple of weeks to get advice on how to go about this. I'm hoping that once she starts to take solids in addition to her milk she might start to put on more weight. This really is my last chance. If she is still failing to put on 40g a day the NG tube will definitely be forced upon us.
I know that a lot of trachy babies/children have NG tubes but have heard a lot of negative things about it creating an aversion to taking anything orally, even if the NG tube is just used for top up only.
Has anyone out there managed to avoid the NG tube, despite their lo failing to put on weight quickly? If so would love to hear how you did it!!
Thanks
Sarah x
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5 comments:
Hello again
We failed to avoid an ng tube, but I do have tips on how to make food as calorific as possible. Remember the usual foods you start weaning a baby with are not very calorific. We used to feed dominic mashed up rusks and baby cereal mixed with infatrini. We also added double cream, butter and mascarpone to food. Sainsbury's taste the difference yoghurts have 200 calories a pot - and the vanilla flavour has no lumps. Check with your dietician first though about what food is safe to feed your baby.
You are right to question the NG tube, it should solve weight gain issues, but can often lead to oral aversion. If it is decided to use ng feeds, ask what the strategy is for ending them, what weight/centile do you need to reach etc? Also try and maintain oral skils if an ng tube is introduced.
Have they investigated why Nadia is not putting on weight? Is it simply that she is not drinking enough Infatrini? Have you been told how much milk she should be drinking?
Good luck with everything, I found Dominic's lack of weight gain the hardest thing to cope with. So in some ways, although I really disliked the ng tube, it did also solve my biggest stress.
Laura
We unfortunately didn't manage to avoid the ng tube - or the g tube which we moved onto, but that was for different reasons, Sam's swallow wasn't safe so he was unable to take anything orally. As Laura said, talk to your dietician - when Sam was really tiny (before trach and g-tube) we used lots of butter, mascarpone cheese (very fattening!) and avocados (healthy fat). If you do have to go down the ng route, it may be a good idea to give overnight feeds via the ng and try to carry on oral feeding during the day. Sam has developed an awful oral aversion, he has just started being able to take solids again and it is a very long slow process. for a while we couldn't even clean his teeth.
good luck
Julie x
I wish I could tell you that you can avoid the NG-tube but it's mostly down to whether your little girl will eat enough high calorie food for her needs once you start weaning her. If she doesn't, try and view the NG-tube as a tool to getting her a strong and healthy as she can be. I say that, but I know how tube feeding can feel like such a failure.
My son was tube-fed exclusively from 4 weeks of age. I had no choice but to accept a NG-tube at first, but I held out against him getting a g-tube for too long really. In the end he forgot how to eat and lost interest completely. There was nothing anyone could have done, he was ventilated and too ill to eat for so long.
Over the past 3 years we've been gently encouraging him back to eating. He's 4 1/2 now and today he ate over half a child's portion of pasta and tomato sauce at IKEA. I was gobsmacked and delighted! I suppose what I'm trying to say is that even if your worst fears come to pass now, it's not the end of the world and things can be recouped even if it takes ages. Good luck!!
Sarah
Billy had really bad GORD (on top of everything else) so as soon as he drank his milk or ate anything it would just come straight back up. He would scream and cry at the sight of a bottle or bowl of food. I found feeding so hard; he was dairy allergic too so couldn't have infratrini. He couldn't have an NG tube because he his upper airways are blocked with bone from his midface, tubes cannot be passed. It took the hospital 10 months to agree with me that he had GORD by which time he had severe malutrition and a complete aversion to eating. Being underweight has drastically affected his development, he is 22 months and cannot yet crawl! He has a severe lack of muscle from being under nourished. He was put on anti-reflux meds for the GORD which did stop the vomiting and pain but he still had the assosiation of 'if I eat, I'm going to be in severe pain and vomit' After 4 months of the reflux meds we gave in to a PEG, and for us the stress of feeding and constant battles were over instantly. I discussed with the dietician that I still wanted Billy to eat at least one meal a day so we agreed on an amount of overnight feed that would still allow him to eat something during the day. He didn't eat breakfast but he did eat a small lunch, milk and tea. I cannot tell you how much stress it took off us and Billy. He put on loads of weight, up to the 25th pc, he wasn't even on the graph before the PEG. After 4 months I stopped feeding him overnight at weekends and he started eating quite well. After 6 months we stopped feeding him overnight because he was doing so well. He doesn't eat quite as much as he should be we supplement his diet with pro cal shot (they can have this once they reach 1), it's strawberry flavoured so he loves it! 30 mls is 100 calories and Billy has 30 mixed in his porridge in the morning and has 15 mls at night before bed. I think if you discuss with the dietician that you still want Nadia to feed you could just agree on a top up.
Another high calorie food Billy loves is avacado and banana mashed together!
Take care
Denise
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