NICU mums - feeding experiences

[gracepoolesrum]

My DD was born at term 11 days ago, unfortunately a difficult labour ended with her being oxygen deprived. She spent 5 days in NICU and has been on SCBU since. She's doing really well thankfully with no obvious lasting damage.

She's been entirely tube fed up until yesterday, with a mixture of my expressed breastmilk and formula, increasingly breastmilk as my supply has gradually increased.

Over the last couple of days we have attempted breastfeeding but it's an uphill struggle, she is taking some milk from me but having been tube fed for so long she is struggling to get what she has to do, plus all the usual challenges with breastfeeding like getting the latch and position right, despite loads of support on the ward. I was originally planning to ebf but am now thinking mixed feeding might be less stressful for both of us, I know it's early days but I was near tears today as she howled with hunger after yet another pretty fruitless attempt.

I'm just interested in others experiences of weaning NICU babies off tube feeds, has anyone managed to ebf?

My son was in the NICU for over a week and tube fed. As he got closer to his due date, he learned the sucking technique.
Give her time, she will learn. Good luck.

My boy was born at 34 weeks. Also tube fed initially, came home on bottles of EBM a week or so after birth. It took 6 weeks for him to really get enough from the breast. I would breastfeed him then top up with bottle of EBM at every feed. It was an exhausting cycle of sterilise, pump, feed,sterilise......but he's now nearly 10months & attached to my boob as I type....
Congrats on your baby! You do whatever is right for you but know you can still BF if you want to.

My DS was born at 31 weeks and spent a month in hospital. He was tube fed for 2 weeks and then we did small amounts of bfeeding with tube top ups. As he got bigger, the nurses cup fed him when I wasn't there (depending on how tired he was) and I did little feeds. He would get really tired very easily. He came home with a tube and after a week he came off of that and was breastfed for 16 months. We didn't use a bottle at all in the NICU (in fact he never took one but not through want of trying!) but he was given a dummy by the nurses to help develop his suck reflex. He gave that up a couple of weeks into being at home.

Congratulations on your DD!! Is there any bfeeding support in the hospital?

There's loads of support in the hospital but in a funny way it's making me feel more hopeless as even with input from SALT, lactation consultant and supportive nurses it's still really hard work, they are also so extremely pro breastfeeding that I've been scared to suggest trying to top up with bottle feeds, I'm going to gather my courage to ask tomorrow!

I don't want discharge to be delayed while we sort breastfeeding or for DD to come home with the tube if I can help it, hence I was thinking bottle top ups might be the answer, whether that's permanent or just until she gets the hang of bf.

My DD was born at 28 weeks and in hospital for 8 weeks. They wouldn’t discharge until feeding was established but it was only the last few days she seemed to ‘get’ it. However I had a gut feeling it wasn’t quite right and demanded a referral for a tongue tie snip. She had that done and then it reformed and she stopped feeding again. Quite early on once we were home she was having bottle top ups which worried me due to nipple confusion but actually, eventually, once the tt was sorted worked really well for us.
It was a long, hard and emotional slog but we managed some breast feeding for 9 months. But I could say the same for my term 2nd DD. I think for some babies it just doesn’t come easily and I know I felt under immense pressure both times for different reasons.
You can only do what’s right for you and them. Good luck

I really feel for you.
My DD was born at 31 weeks but was ventilated for over 10 weeks, I expressed the whole time waiting for the opportunity to bf however she struggled to latch, had a tongue tie which was cut whilst in hospital but did not help, a mix of having gotten lazy getting tube fed and my downward pointing nipples 🤭 it just didn't work for us.

Once home and the routine of express then feed and my milk supply dwindling we eventually gave up 😢

I'm sure that doesn't help but try not to beat yourself up.

My baby was born at 32 weeks. She began trying to suck in week 34, and was discharged in week 35. She’s 39 weeks now and feeding while I’m typing!
I was really keen to EBF, mainly because I didn’t want the hassle of sterilising/expressing etc.
I tried to feed her whenever I was at the hospital, often needing tube top ups, and asked that she be cup fed while I was at home. Towards her discharge date they were able to offer me a room at the hospital, attached to the neonatal unit, so I could pop in and feed her overnight. Would this be an option for you? I think it really helped both of us.
The day before she was discharged she pulled her feeding tube out, and she’s never looked back. EBF ever since.

My daughter was born at 36 weeks and in NICU/hospital for ten days. She was tube feed and it was quite a struggle trying to establish breastfeeding, while also tube feeding and pumping to build up supply. I had to use nipple shields as I couldn’t get her to latch. In the end we were sent home part tube feeding and part breastfeeding. (Under NICU outreach). After a week we stopped tube feeding as she kept pulling the tube out and moved to part breast part bottle. It took until she was nearly four months old before I managed to wean her off the nipple shields! We still have some bottle top ups but she’s mainly breastfed. It was a really long difficult process though. My first had a similar start and we never properly got established with breastfeeding. I think the difference this time round was I was more relaxed and prepared to take things as they came, and although they were hard to come off I do think the nipple shields helped so much.

One of the things I did with my twins when trying to establish breastfeeding was to feed them expressed milk (or formula if there wasn’t enough expressed) through a tube strapped onto my finger with the other end in the milk. It’s meant to get them to mimic the way they would feed from the breast rather than getting too used to the different way they take a bottle. However, I have to say that this was very time-consuming and after chatting with the feeding support midwife I decided to move after day 3 to as much direct breastfeeding as they wanted and then top ups with expressed milk and then formula via a bottle as required (whilst only 1 of the twins was in SCBU for a night they were born at 36 weeks and both had low blood sugars so we were on a feeding protocol which basically stuffed them full for the first few days). I was keen to get home and that felt like the best decision for me. Once home I breastfed them directly for as long as they would actively feed and then expressed and topped up as required. It was hard but by day 8 I think when they had been signed off as gaining weight, jaundice was going etc I cut down formula top ups and I fed them without any further formula until they were 2 1/2 years. Definitely take what support you can, know that if you want to move back from mixed feeding to ebf it may be possible but it takes a lot to increase supply (feeding regularly, expressing often as well may be needed and for example during the night as well even if the baby is sleeping so you can keep the supply going). Having said all that at the end of the day your baby will be fed, whatever breast milk they have had/will have from you will be brilliant and there is no point in my opinion becoming so worried about feeding and expressing and bottle feeding the expressed and then sorting out formula that you don’t have time to enjoy your baby and maybe get some sleep! Hope it all goes well for you!