moving from ng tube to breast...

[SaggyAndLucy]

This might be a bit specialist, but I'm trying to get dd to bf. she's 13 weeks and has just 'got' nursing with a nipple shield. she's still not great and doesn't always do it, but we are persevering. Anyway, she's on a certain amount of milk per tube feed and if she bfs then I need to reduce that amount.
Any idea of how to figure out roughly how much she's taking?
Dr's are no use and bf support have wandered off!

Hello! I've been in a similar predicament. We have been ng tube feeding and bottle feeding, and can start breastfeeding at 12 weeks (11 days time). My guess is you have been expressing, so know whether the amount you can express matches up with what she is meant to have? Do your breasts feel soft after feeding or can you still express a lot? If you aren't confident she's having a good feed then I would think reducing tube feed amounts gradually and seeing if she remains content until the next feed, wees enough (you could weigh nappies) and gains weight every week should tell you whether she is getting enough. But that's just what I'm planning to do, specialist advice is probably a good idea - have you tried LLL? I've found them v good in the past. Good luck!

My DD was prem, and we progressively moved from ng tube to bf with ng tube top-ups, and then, at home, bf (with shield) and bottle top-up, and then finally bf without shield (yay!). It took a couple of months, but she's still bf now at 11 months, so it really can be done, and well done for getting this far!!

I had a similar issue in that, when we got home, I was supposed to top her up, but no-one had been very specific about how to gauge how much she'd bfd ;) As I'd been expressing for a long time, I just went by how softened my breasts were and how much swallowing I'd heard/felt. However, this guess-timating made me extremely stressed and in retrospect I should have just bought a set of electronic baby scales and weighed her before and after feeds. This is what we did in hospital and to be honest I should have just continued that way for a while at least. I think you can buy them on amazon and suchlike - they're not too pricey.

All this to say that I think it depends on how confident and/or stressed you're feeling, but baby scales are quite a fool-proof option if you want a very accurate measure! Good luck!

setbacks today.

she's not taking anything. I've tried nipple shield and special needs bottle. she just chews them and yells a lot!
its very up and down. Some days I think YES! We can do this and others when I think NO! this'll never work! :-/

Hi SaggyAndLucy. Sorry to hear that you had a bad day yesterday. How's today going?

I can totally empathise with the "YES!" / "NOOOO..." cycle - it can be very dispiriting at times when you feel like you'd taken a step forward only to find you've taken two steps back the next day. All circumstances are different, but it's often a slow and frustrating process. In the case of my DD, I remember asking one of the nurses in the hospital whether anyone actually ever managed to breastfeed a baby who'd been born so prem, and she said yes, but that it would require a great deal of patience and that there would be lots of ups and downs along the way, and she was absolutely right.

I don't know exactly what your circumstances are, but keep the faith that it'll happen with time and perseverance. It's all about the long game. And please feel free to come and rant at us whenever you need to!

hey. Thanks for the encouragement.

dd is 14 weeks and has DS. she is recovering from open heart surgery to correct a hole in her heart. she's been like a different child since the op. she has had many 'firsts'.
I know bf is a big ask, I'd be happy with bottle feeding as long as the tube went, but it definitely seems like 1 step forward 2 steps back some days! I have a stubborn streak though and I won't give up!

I'm so glad that she's recovering well from her surgery! It must have been terrifying for you.

Can I ask what kind of breastfeeding / bottle-feeding support you've had? It does sound like they've left you in the lurch a bit!

Saggy, sorry no real advice. But just wanted to offer some encouragement from the sidelines!

Ds was tube fed and had no suck reflex, and I breastfed at the same time, it was very hard, because he lost tons of weight and we struggled all over the place. I could only ever manage it with nipple shields because of his suck. We did eventually switch to bottles because his reflux made feeding even more difficult.

Hope you have lots of rl support to help with all the other stuff. Good luck.

Good luck Saggy, keep trying and hopefully it will work for you and your dd.

(didn't for ds at all. He developed a full blown phobia which is not unusual but we didn't know that at the time, and with lack of support made me feel like it was my fault.)

Convergent I've got a lovely health visitor, community nurses, dietician, physio, SALT and BF support. Technically.
In reality I see the health visitor weekly and the nurse when it's time to change the tube.
SALT saw her once looked at her and decided she had an unsafe swallow from 6 feet away, and the second app was when she was in hospital and we haven't had a new one through, and BF support kind of dropped off the radar. I rang them yesterday but the only advice I got was use a nipple shield.
I'm kind of playing it by ear.
Comparing her to before her op I've decided her swallow is okay. She doesn't choke, gag or vomit anymore (and I'm more convinced that was caused by the tube irritating her and causing reflux than aspiration.) and I've heard her swallowing. She's ducking her thumb like mad.
I put her to the breast before I feed her and any time she's a bit drowsy and thumb sucky and I'm just going to keep plugging away.
The dietician who seems nice suggested tube feeding her at the same time in order to persuade the that sucking = full tummy so ill do that too when there's extra hands about.

DS2 was 9 weeks premature. When I started bf him he was still on tube feeds. We used to have to weigh him before a bf, try bf, then weigh again to see how much he took. We then topped up whatever was left with the tube feed. That was when he was still in the neonatal unit, but maybe something similar could work for you at home? And definitely persevere - DS2 only took a week to get the hang of it then there was no stopping him. But a friend who was in at the same time as him took 5 weeks to get bf established with her DD.

Saggy giving a dummy to suck on while tube feeding is another way to get the baby to realise sucking equals a full tummy. Don't know how that fits with bf -ing though

She will suck a dummy now, and the dietician suggested that or putting her to the breast during tube feeding too. trouble is I haven't got enough hands!