Getting from tube to no tube – April update

So I promised that I would update everyone on how the feeding is going from time to time

It’s been an up and down journey to say the least. 

My last feeding post click HERE to read it.

As a brief recap in December we were taking 15-20ml a feed by bottle and the rest through the tube. 

We slowly managed to get this to pick up but in January/February Oliver decided that he didn’t want to take any feed at all anymore, he’d gone from taking 70ml a feed to next to nothing. He would just chew on the teat and that was it. 

It felt like we were going backwards

Backwards, to anyone, is not a way you really want to go. Not when we’d gone from 15/20ml to 70ml a feed. It was the complete opposite direction to what we were aiming for and when you’ve been on such a high of steady progress it brings you back down with a complete crash. 

We had to start over.

Back to 20ml again

So off we went on our merry little journey again. Now if you follow my Instagram you will see how I post things and how quickly all of a sudden Oliver seems to have realised that he’s actually a baby that can function. He’s started lifting his head more, the arms and legs are all over the shop and I’ve never come across a baby that can be so easy going and smiley, yet so serious in the same breath. 

Anyone that’s had the chance to spend time with him in the past month and a half knows the side eye that he gives as if to say ‘who even are you?’ But can also tell you that two minutes later he’s smiling and flirting away and eventually hiccuping from laughing. A laugh that can make even the bleakest and difficultest moments melt away into the background

So now for the news that people are looking for….

Oliver’s feeds have now been capped, he’s not to have his feeds uppped, so we’re set at 180mls five times a day. (To do with weight but that’s for another post) To those of you that don’t work in MLS that’s 6oz. So we’ve finally had time to catch up without goal posts constantly moving. We are now taking a steady 120mls for at least three feeds a day (morning and late feeds are hit and miss) so that’s just over 4oz a feed.

That’s 2/3 of his feed

I feel as though feeding has just clicked. I don’t feed with two bottles anymore, that’s mixing the feed in a big bottle and transferring it to a small bottle so he isn’t overwhelmed and then top up as we go along, now all one big bottle for a feed. We still have to watch his breathing as he can quite quickly become overwhelmed and get all out of sync but we are getting there! Feeds still take an incredibly long time compared to other babies his age but the fact that we are starting to become less dependent on the tube is a win in our eyes. 

For the rubbish few weeks we’ve had for cancelled appointments (endocrine apppintment being cancelled, weaning appointment with Salt cancelled) being spoken to about doing things with tube incorrectly (through no fault of our own just incorrect advice) we’ve had this absolute little gem keeping us going and it just keeps getting better and better. Hopefully by the summer we will be tube free….but I can’t get to excited or push too hard as we don’t want to back track like earlier in the year. 

So for those of you that see me and see that at times I feel like everything’s slowing down and we aren’t getting where we want to be with other teams….give me a gentle reminder that we’re making progress in other areas and progress  in one area is better than none.

….Oliver hasn’t quite grasped the idea of a jumperoo….not even the leg part we understand that. He won’t even touch the toys 😂 one step at a time and all that

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