To worry about tube feeding?

[myangelsx]

My daughter is 8 weeks old tomorrow, born 8 weeks early (her due date was on Tuesday). She has a condition called hydrocephalus which is excess fluid on the brain. She's had 2 operations and now fingers crossed all is going well.

She had her last operation to fit a shunt last Tuesday and is now showing excellent signs and can't wait to bring her home!

She is still being tube fed as with all the pressure she's had on her tiny head they didn't want to push her but now she's better we're trying to introduce a bottle.

Apparently because she was early and and she hasn't had anything orally she hasn't quite grasped the suck swallow breathe technique and isn't taking a breathe until after about 4 swallows and then taking a big breathe. She also sleeps loads so whenever speech and language come round to see her she's fast asleep and we never get much done.

They now need her bed and this is the only thing stopping her coming home. I know she use a bottle I've see her do it but she just need a little more practice to master the breathing but the timing with speech and language never goes well.

Any suggestions? Sorry for the long read!

My daughter was 12 weeks early and had to tube fed for the first 8 weeks or so! The thing I think helped her was they gave her a dummy which started to get her sucking going right!
Have they given her a dummy? Maybe ask if you can try her with one? At the NICU we were in the had special premature ones.
Good luck hopefully she will be home soon!

Will you be getting support at home or been put in touch with your area Spina Bifida and hydrochephalus association the offer family support

@GilmoresForever she's had a dummy from about 2 weeks old as when she was first born she was on life support a breathing tube and she used to suck on it so we gave her a dummy straight away and she's been really good with it. It's just the swallow and breathing she needs to learn but she's so sleepy we can never do it

@MrsJayy they said they are going to sent a community speech and language therapist to assess her every so often but I will need to tube feed her at home for a while? It's just a shame because she's amazing with it but she takes deep breaths after every few swallows rather then after every single one

Oh sorry I didn’t realise she had one. Have the NICU given you any advice? Who is giving her the bottles? Have you tried it? Might be worth talking to your consultants? Also do your NICU have an outreach team who will come round once you are home? I found they had great advice and had seen many issues before.

Yeah it's always me who does the bottles I get her out of her bed and we have a cuddle but sometimes the comfort of being cuddles sends her to sleep! She hasn't realised she needs to wake up to be fed yet as while she's in hopsital she can sleep till her little hearts content as they feed her through the tube anyway. All the nurses say she's really good with the bottles but we need SALT to come and see it as they put the stethoscope on her neck to listen to breathing aswell but my little madam falls asleep when they come and doesn't show them what she can do

Please don't worry about this. My dd came home tube fed/bottle fed. We did a few tube feeds at home before she managed full bottle feeds. Her feeding was awful though but different story to your dd.

The tube feeds were fine. Have you not been doing them in the hospital? If not, get trained up on them and do them in the hospital. The neonatal nurses will come out to see you at home for a while. We did once have to go in to the paeds ward to have a tube refitted as she pulled it out.

We only did a week of tube feeds at home. I remember being keen to get onto bottles. In hindsight I wish I'd not pushed her as much as I did and let her transition in her own time. It used to exhaust her.

I used to strip down my DC and sit in front of a fan ( lowest setting) and give baby a little sugar water (paediatric ward should have some small tubes of it) which would wake him up a bit for SALT assessments.

It's great that your baby can suck and swallow, even if she is re learning how to regulate her breathing and swallow pattern, to keep encouraging her suck reflex you can do some facial and oral massage, SALT can give you some work sheets showing you the movements etc, I found those really helpful.

It sounds like she gets tired easily, you could try ( only if SALT approve ) to use carobel powder which thickens milk and a faster flow teat, it's easier to control a thicker liquid so she could have a bit more time to breath than with normal milk and a faster flow or softer tray should make the sucking effort a bit less tiring.

My 3 year old DD was prem and tube feb for 3.5 months (she had some bad issues stemming from an under developed stomach due to being early). She now eats everything that is offered, eats loads more than most kids and you cannot stop her talking if you tried. So many people told me not to worry and time would sort it and I couldn't listen as I was in a constant panic. So I will say to you it will be fine, time will sort it and you will cope using the tube. You might not believe me but it will.

My little boy was tube fed for a year. Same as yours he never learnt to swallow, albeit through a longer 6 months ICU/HDU stay.

However what stuck with me is a few points
1)Never ever ever make a fuss of eating. They can't eat because they don't know how, so any mental duress is frustrating for a parent but can compound longer term issues. Ignore, offer food then just tube feed as normal
2) All that has passed through their mouth and tastebuds is milky sick coming the wrong way... it is foul! Why would they want anything else in their mouth if that is their experience of taste, So stronger flavours were favoured.
3) Keep their mouth active however you can, sucking dummies/fingers etc is all good.

My son one day just picked up his sisters bottle and put it in his mouth and drank an ounce whilst we were playing in the sitting room
A few days later he grabbed some spaghetti from my plate and started licking it.
A few days later he started putting lots of food in his mouth and for the eleventy zillionth time his tube was pulled out. We decided to not put it in and to watch like a hawk, knowing we could put it in whenever we wanted. We never needed to.
A week later he went crazy over a strong cheesy wotsit and took his first steps in order to get to it!

Admittedly he was14 months by this time, But believe me it was like riding a bike as soon as he got it he really got it!
So if there is no medical reason for the tube, do not worry they always get there. All you can do is harm the process if you are not careful. Listen to your SALT and dietician and make it all a really positive experience, never get upset, never stress, never force itl

Thank you for your responses. I thought I would be a bit naughty and just give her a bottle anyway, if she gets to tired I'll just top her up with the tube?

Any thoughts on that?

That is where your medical team count. We can't answer . Too tired = go to sleep?. Too tired = fail to thrive? too tired = medical set back as too much energy is spent not healing?

Although mum usually knows whats right :D

How much is she on average taking by bottle op?

How long can she normally stay on the bottle before she gets tired?

How much of her daily feed % is she able to manage?

The reason why SALT want to assess her is to make sure she's not aspirating milk into her lungs, which can cause pneumonia/infections/breathing issues if not realised or treated.
This can also happen with Tube feeding but there are procedures and trouble shooting solutions to help avoid this.

Sleep is also imperative for babies (and adults) to heal from surgery or illness which is why Tube feeding is actually a good thing since it does take the pressure off her to waste energy feeding 100% orally.
Little and often is a good guide to keep the sucking muscle memory going, you can gradually build up as she gets stronger.