Disorganised feeder baby-advice

[ellieellie44]

My 6day old baby is currently in hospital with jaundice and they've now also diagnosed him as a disorganised feeder- he can suck swallow and breathe but when it comes to doing it all together on a bottle he really really struggles no matter how hard he tries. They have inserted an ng feeding tube to help him I just wanted to know if anyone else has had a disorganised feeder baby and how was it sorted? Is there anything I can do to help as he's so confused he can only take 20 ml of food as they've given him a timeframe of half an hour to take enough from a bottle and then they put the rest through his tube but he gets himself upset afterwards and continues to search for his bottle. Advice please?

Would attempting BF help? They generally pace themselves better at the breast and it's slightly harder work, so the suck/swallow/breathe combo problem might be less of an issue. Sorry, i don't have any useful suggestions!

Congratulations on the birth of your little one and so sorry you are having such a stressful time of it. Really hope you are getting lots of practical and emotional support during what must be a horribly challenging few days.

Has your little one been seen by an infant feed specialist / occupational therapist / speech and language therapist during their time in hospital? Have you been given any tongue / mouth exercises to do with him to help assist with his suck swallow breathe pattern? Are you giving him a dummy /pacifier to ensure he gets lots of practice with non-nutritive sucking? (Sucking without the pressure of needing to feed). This is especially important during ng feeds as it helps with the digestion of the milk and retains the association between sucking and getting a full tummy.

Was he born at term? Has he been tried on more than one bottle type? Did whoever diagnosed him with the disorganised feeding properly explain it to you and did they also rule out issues such as tongue tie etc?

Really sorry for the firing of questions at you but I just wanted to get a feel of what was happening.

Sending hugs from one mummy to another

@Puddlelane123 yes he's been seen by speech and language, I've not really been given anything to do just been told to support his chin and press under his chin to encourage him to feed, he won't even latch to his dummy he spits it out and cries. He only has half an hour to get a good amount of feed down him and the rest goes down his ng, it is so much pressure. He was born at 37+3 and he's tried two different types of bottles and countless tests, the speech and Language therapist said it's nothing to do with teats or bottles it's to do with him not being able to coordinate everything at once. They explained it slightly said he can do all things needed to feed separately but just not all together.

@Puddlelane123 I've not been told he has a tongue tie I feel like that's something she would've mentioned as they did look into it so I'm guessing no he hasn't got one.

My baby has a mild tongue tie and its really obvious, I think itd be easy to see if he had it.

Try a dummy when he searches for his bottle.

3 of mine had such severe tongue ties they had no movement at all. 3 midwives, 2 gps and a lactation consultant all said they didn't have one, but I knew (from previous experience of how it felt to feed them) that they had posterior tongue ties. Only when I saw a speech therapist specialising in latch who referred me to a leading expert in tongue ties , had it cut and it made 100% difference. Mr Minocha , based at Norwich hospital.

Okay - so at 37+3 he was essentially term but still has alot of maturing to do in comparison to a baby born at 41 weeks so the difficultly in co-ordinating the suck swallow breathe pattern isn’t unusual. And he will no doubt be pretty sleepy too, especially with jaundice to contend with. The key factors to make a difference will be time / maturity and ensuring that he doesn’t form any negative oral associations. Try to take all pressure off yourself and him with regards to the half hour of feeding - look at it that whatever he takes in that period of time is a bonus and all part of the process. If you find yourself getting (understandably) stressed by it all at feed times then he may pick up on that too and that will be counter productive. Even if he only has a few sucks and swallows here and there try to see it as a win, and remember it won’t always be this way. Babies mature rapidly and in a weeks time the whole picture could look very different. Continue offering the dummy if he will take it, but without pressure to do so and if he spits it out / rejects it then that is fine.

You don’t say what weight he is but I’m guessing he is on the small side and with jaundice too probably pretty sleepy. Are you offering bottles with every feed? It sounds counter intuitive but I wonder if it might be helpful to alternate the feeds so that you only offer the bottle every second feed say? So that he gets one feed fully ng (which he will possibly sleep through entirely) and the next trying first with the bottle - the hope being that he will be nicely rested and have the strength and energy to better attempt co-ordinating everything. Equally it can be helpful to say that you will only attempt oral feeds in daytime hours - thus allowing him to fully rest with ng feeds overnight. Just a thought and will obviously be something your nicu nurses / midwives etc will be best places to advise on.

If you look on youtube there are lots of helpful videos (sorry I can’t link) of ways in which to encourage sucking skills / help with disorganised feeding by gently stroking your baby’s cheeks / gums / tongue before feeds to stimulate development in this area. Worth having a look at it you get a moment, or indeed asking the staff at the hospital about.

Finally I do think it is worth explicitly asking about tongue tie because like the previous poster I found that my dc’s were missed by lots of health professionals despite them being considered quite significant tongue ties and causing no end of issues.

My preemie had this problem, it was something she grew out of with a bit of time - we did alternate ng feeds and suck feeds for a while. She was also much better at managing breastfeeds than bottles once she had a tongue tie snipped.

Hi all, they now think he has a flappy windpipe? So he's now been removed off all oral feeds and fully on ng until they can determine where his feeds going when it's given via bottle. Just feels like ten steps further backwards, he will not take his dummy for any longer than a couple of minutes so I just try to do that when he's having his ng feed to attempt to stop him from rooting. The doctor says there is no evidence of tongue or lip tie. He was born at 6lb 9oz but 3 days ago they said he's 6lb 1oz now so he could've lost even more since then giving his vomiting every feed when his ng was first fitted. He is very very sleepy but he's now having a few awake periods during the day, not often though. I'm just so fed up, everyday there is something new, I just feel so bad for him, he's only a week old now and he's just got adding things wrong with him, it's so stressful knowing I can't help.

I'm so sorry to randomly jump on this, but what was the outcome? As my daughter is having real troubles feeding and it all sounds very similar, she was diagnosed with a mild form of laryngolomacia (floppy windpipe) but I don't really know how to help it?!

You'd be better off messaging OP directly and/or starting a new thread @Emily789. Resurrecting old ones isn't usually helpful to anyone, unless you're the OP.

You'd be better off messaging OP directly and/or starting a new thread @Emily789. Resurrecting old ones isn't usually helpful to anyone, unless you're the OP

Or you can tag in the OP and hope they'll come back but I do agree that it's better to start your own thread