DD is in SCBU, struggling to establish breastfeeding, any advice?

[minipie]

DD was born unexpectedly at 34 weeks 10 days ago, so she is now 35+5. She had no breathing issues but has had jaundice and reflux related de saturation episodes and temperature issues. These at now largely sorted and the only thing keeping her at hospital is establishing breast feeding which I am struggling with.

I have a large milk supply and she feeds well some of the time, mainly in the evenings. However much of the time she falls asleep after only a very very short feed (a few sucks) or just doesn't wake up when she ought to be hungry.

Any advice? The nurses are lovely but they seem unsure what is best. Some advise holding off tube feeds and letting her get hungrier, others say she's in a sleepy phase and we should just wait for her to get more interested. We tried on demand feeding yesterday but she didn't feed much and today is back under uv lights for jaundice which I think means she didn't get enough yesterday and I feel so guilty. I don't want to rush her into full breastfeeding before she is ready but I would so love to take her home...

I know someone who took her twins home at this stage, still part tube feeding. But I think she had to fight the hospital and I am not sure I have the confidence to do that.

Any experience or thoughts most welcome... I really don't know what is the best course from here. Thank you.

Ds1 was born later at 37 weeks, but we were in a week as he was jaundiced, on bilibed and just always fell straight asleep and lost quite a bit of weight. We ended up down tube feeding route.

It's so hard, but I'm surprised they're saying to leave. They need milk to combat the jaundice, the jaundice makes them sleepy, they don't feed, tis a vicious cycle.

Few things we did
1 I breastfed whilst DS was being tube fed - they associate feeling full with breast feeding
2 we had 3 hourly tube feeds as I remember, I was having to express off enough for 70ml feeds each time (they did a calculation of how much milk they need in a 24 hour period taking body weight into account)
3 main thing is to get milk into your baby

1. Keep expressing if you can, even if you can't feed that much directly

Congratulations by the way, hope you are home very soon!!

I'm surprised the nurses aren't being more directional. Can you ask the paed on their next round?

No helpful advice, I'm afraid. But felt I could share: my DD was born at 35 weeks, in SCBU for 2 with severe jaundice. No tubes after a couple of days. The nurses there told me that I HAD to bottle feed as in order to flush the toxins out of her system. So I expressed and bottle fed. We ended up doing mixed feeding, breast & bottle as it was the only way to get enough into her. They told me jaundiced babies are generally sleepy anyway, it's one of the symptoms (?)

Just keep trying. Wake her up during feeding if necessary. Should add that DD is now a fit, healthy & hormonal 11 year old...!

Hopefully someone with better advice wil be along very soon. Just keep at it, it will happen.

It sounds like she just doesn't have the energy yet to breastfeed properly, after all she wasnt planning to start all the breast feeding malarky for another 5 weeks! I haven't had a premmie baby but I have worked on scbu and to be honest there is nothing you can do really except wait it out. Would you be open to topping her breast feeds with a bottle? That may help you get home sooner but it also may adversely affect breast feeding. Sorry that's not much help, hope someone more knowledgeable comes along soon

i had DD at 31 weeks (4 pound 6), and she didnt breastfeed well, problems with Jaundice etc and was in NICU for a month.

I ended up expressing and tube feeding her, because it was less stressful for all of us, and she 'got the best stuff'

Sh is 9 in a fortnight, healthy, strong, active, fun, challenging, in fact, she is brilliant.....

good luck through the early days, they are so worrying xxx

Thank you all. I had forgotten jaundice = sleepy, that could explain a lot. I have considered mixed bottle and breast (am expressing loads) but worry about nipple confusion etc. she has never had a bottle so far.

Yes I think I will see what the doctors say and in the meantime the main thing is getting the milk into her rather than pushing the breastfeeding.

Wake her up during feeding - if only I could! When she falls asleep she is out for the count. Being held by me seems to make her sleepier.

Thanks for the congratulations - she is lovely.

Haven't looked through this for a while, but this might be helpful: www.bestbeginnings.org.uk/fbtb-sick-or-pre-term.

Agree with others that if you're getting conflicting advice, find out which of the paeds/nurses are most expert on bf prems, and get them to talk your through what they recommend. And great that you've got a good supply going already - that's a fantastic start.

Huge congratulations on the birth of your dd too

Has anyone suggested cup feeding? I don't know what the latest thinking is, but when I had ds (nearly 8 years ago ) - who was also early & very very sleepy, one of my favourite mws was very keen on cup rather than bottle feeding to minimise any nipple confusion. Might be worth asking about?

Mini pie if I were you, I'd express as much as poss, use formula if you need to, tube feed at regular intervals
(Whilst breast feeding at same time to increase association) and get somebody who knows a bit more on the ward! They should be calculating how much milk your little one needs to flush out the jaundice. She needs milk to get more awake, then she'll feed so much better. Can you speak to a paed?

DS was born at 35 weeks on 9th centile and we established bf by feeding as long as possible and with as long a gap as possible between feeds then tube (with formula) top ups. I couldn't express enough initially to top up feed with bf, then when my milk came in properly we had more or less moved off the tube. I remember one of the nurses said that he shouldn't feed for more than 20 mins at a time, if that helps.

Agree that the best thing to do is find a nurse who really understands bf for SCBU babies, work out a plan together and try to stick to it. I still think of the wonderful Janet, who I thought was a complete cow at first, but spent an hour with me in the middle of the night on about Day 3 making sure DS was properly latched and that I knew what I was trying to do, and who supported me bf when some of her colleagues would have been happier sticking a bottle in him

Congratulations, BTW! And another premmie here who is a lively, healthy, biggest-in-his-class, so please don't worry on that score

I've had 3 prem babies, my latest one 4 weeks ago was born at 35/40 and in scbu. Similar problems to the ones you've listed.

My advise would be to try and cut out the tubes altogether if you can and go to cup feeding - after you have put baby to breast. When you pop her on does she latch ok?

Also is she on any type of monitoring now? Are you able to room in with her at all as from experience bf can pick up when you're it of the pressures / non privacy of scbu... more comfortable and relaxed

I would not give a bottle. She's got to still work at it, and in the long run outré maybe making more work for yourself.

I'd also avoid trying to go home with tubes, it yiu could go home with a cup and top up if needed and just make sure you get good bf support at home.

It's hard, and I know you're desperate to go home? I remember thinking I need to get this feeding cracked or ill be in here forever. This was after 3 solid days of trying. At 1pm on the 4th day she latched and stayed on and we haven't looked back - although she's still fussy on one side.

I cup / syringe fed and refused tubes and bottles of EBM in the time I was waiting for feeding to establish.

ddtwins were born at 33+5 and like your LO went into SCBU, developed jaundice etc. I remember we used my expressed milk (which thankfully kicked in straight away) and tube feeding. They didn't really get the hang of actual breast feeding until about three weeks, and we were finally able to go home after 28 days. We did try cup feeding, dd1 was well up for it but dd2 didn't want to know.

They're 13 now, they've both had to stop 'borrowing' my shoes as their feet have outgrown mine, but they filched both my favourite evening dresses as Halloween costumes this year...

At least there is one positive from LO being in SCBU, and that is you get a few decent night's sleep in before the baby comes home

Best wishes and congratulations.

Oh and skin to skin, as much as you can do - it really really helps.

Good luck op, you are doing brilliantly and it will work out really soon!
I second the advice about getting the hospitals most expert prem bf adviser to help you, there's bound to be someone, or la leche or nct adviser otherwise. We just turned a corner one day (when rooming in- made all the difference, worth fighting for) when feeds became less sleepy. I agree some nurses will not want you to tire baby, but i felt it was important to keep trying each feed, even if just for a couple of mins. getting support for this helped. once she was awake enough to feed for 15-20 mins most of the time, they dropped the topups to see how wed get on, and it was fine. We always started with nappy change to wake her up, and kept her coolish to feed. lovely skin to skin too, so it is so worth it even if your baby is mainly sleeping through all your efforts!

thank you all. seaside, did they let you room in while dd was still sleepy and needing top ups? i had got he impression it is only allowed once the baby is demand feeding and the tube is out...

any ideas on how to get dd awake in the morning/daytime rather than eves/nights? or shd i go with her clock and try beige here at night to breatfeed ?

thank you all again. the main issue is she just falls asleep after a very short feed, ie 1 or 2 min max, esp in morning. she has done long feeds of 10 or 20 mins but mostly late in the evenings. she is also quite awake in the nights i believe. she was the same in the womb.

any way to shift her body clock more towards the daytime? or should i ask to stay here all night and try feeding her through the night?

keeping her cooler for feeds s a good idea, will try that.

it sounds like most of you got feeding cracked by this point....except Fireworks, your experience sounds like mine.

Have the mws been able to give you any guidance on keeping her awake? With ds who was really sleepy when feeding, we were advised to:

• undress him partially to make him slightly cool
• tap his feet gently to keep him 'with' us
• do a nappy change midway though feeds to encourage him to wake up again & have some more

I think - although I may be imaging this - one mw also gave me a bowl of lukewarm water to wipe his feet with to keep him awake.

All of this may be very outdated, but the mws/docs really should be able to give some advice. Am a bit grrrr on your behalf that you're obviously not getting great support - although tbh, I think that's sadly common

In terms of switching her routine to daytime ... don't think there will be an easy solution to that one! So if you can do more evening visits/feeds, then I would absolutely go with that.

And yy to skin-to-skin - are you getting lots of kangeroo care time?

Incidentally, I don't want to suggest it was easy getting ds to bf - it was a slog, & he was born later than yours, so an easier job. And I did get bullied into bottle-feeding once or twice, as SOME of the mws kept telling me I needed to get milk into him if I wanted to get him home. But luckily, then I found The Fab Midwife, and her advice was golden, & after the first week or so it got so much easier, and I'm really glad I managed to keep at it.

HTH

Do you change her nappy after she's fed on one side? When DD1 was just home (born at 33+4 and home at 36w ish) I used to feed on one side, then change her (which would usually wake her up, at least a bit), then offer the other side.

Good luck - you'll get there! That you have a large milk supply is fantastic. DD1 was in SCBU for almost 3 weeks and was tube fed EBM most of that time. She was only fully bf the last two days when I was back to room in with her.

PS And don't underestimate how fantastic it is that you've got a good supply! Expressing isn't easy for all women (I bloody hated it!!) & to have established a strong supply so early is great news.

Hey mincepie, i did actually have somemajor meltdowns (crying,not shouting!) until they let me room in as we were similarly at the 'bf and tube top-up ' stage rather than in the 'established bf' stage and nicu had similar policy to yours. possibly we were a few days on from you though, so don't give up! they let me have a few nights in to see if we made progress, luckily we did, else i'd have been sent home again so it was a big risk but it paid off for us and it was just a few more nights after that until we came home, so less than a week rooming in in total i think. i made the fuss about staying largely as i was devastated at having to go home at night and leave my baby, but also aware like you that it would be hard to establish bf without being there to feed at night ( mine also a good eve /night feeder, i think most are) so until they let me stay i went in lunchtime till early hours as there was 24 hs access for parents. it was really discouraged by nurses though, which drove me mad. i think it would be harder to switch your babys body clock, is it a possibility for you to shift your sleep / visiting hours to suit them? May only take a few days fingers crossed. pm me if you want, i know it is a really dreadful time x

DS1 was born at 32 weeks - like bytheseaside I kicked off with the doctors after 2 1/12 weeks in SCBU - he was absolutely fine but still tube fed, and the rules were that you couldn't go home tube feeding, but they wouldn't take the tube out until bfing was fully established (on a totally ridiculous 4 hourly feeding schedule), but they wouldn't let me room in with the tube in (aaargh). So I had a huge strop, said I would book myself into the hotel opposite the hospital and come in at night to feed him. One of the nurses backed me up and the doctor agreed that we could try rooming in, leave his tube in in case we needed it (they didn't want to take it out then have to reinsert), and if his weight went up then we could take the tube out. We roomed in, loads of skin to skin, feeding far far more frequently than his supposed 'schedule', he put on loads of weight, the tube came out and we were home 2 days later.
I second the advice you've had about trying to keep her awake when feeding, and also call NCT or La Leche and speak to a professional - I would hope that SCBUs are a bit more enlightened about bfing than they were seven years ago but back then I felt I was having to fight an expectation that of course I wouldn't have enough milk for my baby (despite the huge stack of expressed milk in the fridge with his name on....). It is horrible when you desperately want to get your baby home, but I went on to feed DS1 for 3 years and it was so worth those first few weeks.

thanks again. spoke to dr who just says give it time and be led by nurses .

on she plus side they will let me stay here overnight and try b feeding each feed, tho not room in, so i may try that tomorrow night. thanks for tips on waking her up more.

they won't do cup feeds while i am there as its not meant to replace breast so that is not an option.

off to try her again....

Are they monitoring her jaundice levels?

If I were you, I'd demand to cup feed (it is not to replace breastfeeding, it is there as a temporary solution rather than bottlefeeding, in long term interest of breastfeeding).
It is so frustrating that there are some quite lax nurses and doctors out there.
I also suggest you post this in breastfeeding part of Mnet - Tiktok and others will have ideas I'm sure and really help you to get your daughter feeding.