Getting from tube to no tube

Oliver is tube fed. This is due to the lack of understanding on his part of the suck, breathe swallow reflex. This is something we all take for granted as we do it without thinking. Next time you’re having a drink out of a bottle think about it while you’re chugging down your Coke or Fanta. Now imagine trying to relearn it, not an easy task.

We feed Oliver 6 times a day with the tube at the moment and we’ve had a battle to get to the point of being able to bottle feed anything. We’ve gone from struggling to do 5ml to taking 15-20ml a session now. This mainly being down to Mike not me. For someone who generally isn’t very patient he’s worked wonders with Ollie and has got the bottle feed down to a fine art now! We’re just waiting for speech and language team (salt) to see his huge improvement in a matter of days and check we’re ok to carry on the way we are and continue to let him dictate what he can and can’t do

For pws parents who are struggling to get their little one to feed here’s what we’ve been doing

First we’ve had the ok to bottle feed by the salt team.

Second we get comfy on the couch with our legs bent up  We lay Oliver on our bent knees so that he’s stable (holding in your arms can make him need to find his balance, so distract from what he should be focusing on)

Put a timer on for ten minutes and start feeding.

Some feeds we get five minutes in and we can see he’s had enough and stop, other feeds at the end of ten minutes he wants to keep going but we don’t want to push him and wipe him out. It’s more important to us that he tries to feed each feed than get one solid bottle done a day.

We are making progress and he never seems to fail to surprise us with what he does. Yesterday he brought wind up no problem! There were cheers in our household and smiles all round and I’ve come to realise this is what being a parents all about. Not showing your baby off but learning to celebrate all the small things that they achieve. 15-20 ml is nothing for most new born babies and for us and our seven week old it shows a huge leap in progression that when leaving the hospital we thought would take months because of google

Oliver 0.5 – 0.5 PWS

We’re coming to claim that point five PWS don’t think you can keep it!
Note: I will continue to update this post as and when we make more progress. Hopefully it won’t be long before a full bottle every feed and we can get rid of the tube

2 thoughts on “Getting from tube to no tube

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