NICU and breastfeeding

[ktsch]

Hoping to get some support from other mums who have been in a similar situation
My son was born at 34 and 2 and we've been in NICU for a month today.
We've had alot of issues with his lungs and was intubated for a week, he's now just on a nasal cannula in 0.1 oxygen which is amazing compared to where we were.
He has always had expressed breast milk (EBM) through a NG feeding tube. I've shared my desires to exclusively breastfeed with the nurses and all have been very supportive. The past two weeks we've had some great feeds of 30 mins and some 15 min feeds which I'm still really happy with. However it's only once a day, it tires him so much. We are now only in NICU as he's not established feeding
I get mixed messages and instructions daily on what to do, some days we half his requirement every feed by tube hoping he wakes and can then be more active on the boob. Some days it's full requirement NG every feed.
Today I've been told it's probably time to start introducing a bottle and I feel heartbroken. I really thought we were getting somewhere. Yesterday while on half NG feeds he BF successfully 3 times over a 24 hour period so he is making progress.
I feel so conflicted with the different suggestions from the nurses. I have raised it with them but it's just based on the persons at the times decision/ experience.
Has anyone else had this?
Did you introduce a bottle and then when you got home reintroduce BF? All his feeds will still be EBM so there's nothing changing with the milk he is getting just how he takes it.
Any support/ advice/ experience is welcome
Thanks in advance x

My son was bottle fed on expressed milk for the first few days - the hospital needed to monitor how much he took. By the time he could come off the bottle he was used to the immediate rewards form the bottle and refused the breast. I was determined to breast feed and was given a syringe with some soft silicone tubing on the end. I was advised to express a small amount and put it in the syringe. Then put him to the breast and slide the tube into the corner of his mouth and squirt some milk in. That way he was encouraged to keep suckling until the milk let down. It too 24 hours of this but he soon came to associate breast with milk and we never looked back. Good luck and don't give up just yet!

My daughter was given ng tube and also cup fed. Her intake needed to be monitored and also to help with the jaundice. She lapped up the milk from the medicine cup like a little kitten. She didn't have a great suck reflex. Once home it had to be breast milk in a bottle as she wasn't strong enough to bf would tire easily and become irritable. The milk would squirt out the side of her mouth despite different teats such was her such reflex and was a very messy feeder. I was sorry not to be able to bf her as had done with my other two but glad she could at least have my bf.

My daughter was born at 33+3 and I was determined to ebf as well, but she started losing weight as she was using too much energy trying to feed. I eventually had to accept using a bottle for top ups. I would breast feed for 20 mins and then give her the rest in the bottle.

I was only told as we were leaving that the majority of people in my situation ended up using top ups as well.

It wasn't what I wanted, but with hindsight, she still got only my milk and it was the best thing for her.

Is there a breastfeeding specialist attached to the unit? My DD wasnt prem, but she was IUGR and had GBS sepsis so we spent two weeks in NICU then SCBU. I had LOADS of mixed messages from the nurses around getting her off the NG and onto EBF and things only really turned a corner once the bf specialist came onto the scene. I just stuck with her advice and ignored everyone elses (which was well meaning but complicated things by confusing me). We also have a specialist infant feeding team at our hospital, who create personalised plans - do you have anything similar that you could contact to discuss in a bit more detail?

We did end up moving to formula top ups. I was devastated at the time but looking back now (2.5yrs on) it was the right thing to do. DD was cleared for discharge once she gained 50g per day and on EBF she just wasnt gaining which meant extra time in the NNU. After 2 days of top ups we were home and started both our recoveries properly. I did continue to BF until 9months (when i went back to work) alongside top ups, so although it didnt end up being EBF as i hoped, i feel now that things ended up alright in the end. Like a pp, for every feed, i did up to 30mins on the breast and then gave a small top up so the main focus stayed on BF for our feeding journey.

As someone who had a tube fed baby ono2, if the only thing keeping you in hospital is feeding, I'd try him on bottles and see if it helps. He can of course come home on tube feeds but it's hard to know how much when you don't know what he'd taking.
It's SO hard to drink and breathe, we just don't realise it until someone struggles to do it.