trying to establish breast feeding with a prem baby on strict tube feed regime - advice please

[FairyBayleaf]

Hi,

My son was born 11 weeks ago, 10 weeks premature. While he was on the neonatal unit (for the first 5 weeks) I was encouraged to have kangaroo care and skin to skin contact, which I did. We managed to build up to having two breastfeeds a day (using a nipple shield as latching onto my nipple alone never worked - I think they're not big enough to grab a hold of!) and moved up to the transitional care ward with the plan to build up to all breastfeeds before being able to take him home.

However, while in TC, my son was taken ill and ended up being transfered to the children's hospital on the liver ward, then into intensive care where he was sedated for nearly two weeks. Therefore I was unable to breastfeed at all, and although I was trying to express, my milk dwindled with the stress and with spending all day at the hospital without facilities to express while there. He was then transferred back to the liver ward where I was able to try breastfeeding again but only a couple of times a day max until we were eventually allowed to bring him home although still being fed through a nasal gastric tube.

Due to all the health issues, he has been identified as underweight and has been put under the care of a dietitian at the children's hosp. She has prescribed Nutriprem which we are having to feed him through the tube on a strict amount every three hours. She has 'allowed' me to substitute some of the nutriprem feeds with expressed milk (I've worked hard to get a supply back) but they still need to be through the tube so that we can monitor how much he is getting.

I've been trying him at the breast (as an extra) before the tube feeds and whenever he appears to be rooting, but he never seems hungry, only really sucking for comfort. He will suck for a while, maybe 5 mins, then stop with the nipple still in his mouth. I can't decide if he is out of breath or tired. I usually try winding him then trying him again. Sometimes he takes himself off the nipple, and/or falls asleep. If I try putting him back into his bed to set up a tube feed, he starts crying and rooting again as if he wants more, but when I put him back to the breast, he just falls asleep again.

All I want is to be able to breastfeed my baby properly, and I worry about what will happen once he reaches an acceptable weight that the nutriprem is no longer required and the tube is removed. Will he remember how to breastfeed? Will I be able to produce enough milk?

Anyone got any advice about how to get him interested in the breast when he never gets hungry because of the regimented tube feeds?

Please help because I'm very depressed and upset about the whole thing.

FairyBayleaf - you and your DS have been through a lot. I do hope things pick up soon.

Can you contact the Infant Feeding Co-ordinator at the hospital (try going through the switchboard) as you really need real life, knowledgeable, in the flesh, on the ward support to work through this. Have you had any contact with a Bfing specilist MW/Prem Nurse or anyone who is supportive of bfing? It sounds like you have just been left to battle through all by yourself

Sucking for comfort is a good sign though.

If he feels happy to suckle then let him, if he has a bit of milk then great. Does he suckle/have a dummy/suck thumb during the tube feeds to get him used to 'suckling = feeling full' as some babies don't make that connection if they just have tube feeds.

Hi FairyBayleaf, just wanted to say how fabulous I think you are doing and also share my experience with you in case it helps in any way. My DD was born 7 weeks early and apart from severe jaundice she wa reasonably healthy. She had a NGT fitted as she was too sleepy to directly breastfeed, she was discharged from hospital with this still in place. I had lots of advice in regards to breastfeeding and not all of this was helpfull as I found different proffesionals had very different views.

I would definatly echo what TruthSweet wrote and get some real life support, although be prepared that people may give you contradictory advice.

When I brought DD home I would always offer the breast first and as I became more confident I would be able to gage whether she had feed well or was just sucking for comfort (which was also fine), DD didn't have weight issues tho so it may be different for your LO. If she was sucking for comfort I would top her up through the tube, I also encouraged her to suck on my little finger whilst I did this so she associated sucking with a full belly .

Anyway I am waffling now, but just want to add that although it is hard work it can be done and hopefully you will be able to EBF if you want to. My DD's tube was removed 7 days after discharge and she is still breastfeeding at nearly 12 months old - I wish you and your LO all the very best x

Just want to add that instead of nutriprem you can request donor milk. Hospitals without a milk bank will have access to it from their nearest milk bank - it just needs the paed to agree to pay for it (which is the challenge, especially if you have one who is talking about "allowing" you to give your breastmilk). Banked milk is screened and pasteurised so totally safe and has many of the benefits of your own milk (although not all) - but far more than is in formula.

If you want info please PM me as I'm not on MN too much at the moment. Or you can find the UK Association for Milk Banking on Facebook by searching for UKAMB.

In the meantime you've got some good advice above, and finding a really good, supportive lactation consultant at the hospital can really help. Do ensure that he is breastfeeding as much as you possibly can and you are expressing as often as you can (even if you get very little milk the stimulation is good).

If you get contradictory advice then coming on here might help to try to untangle it. Also asking "why" a lot and getting caregivers to explain their reasoning for their positions is worthwhile.

Would they swap the/some of the tube feeding for you bfing with a Supplementary Nursing System* to help transition baby to bfing? That way they can monitor milk intake and you get the stimulation of direct nursing.

• a SNS is a bag of milk with a tube taped to your nipple so when baby feeds they get milk from the tube and any milk you make too)

Some great ideas on here - thanks everyone. I never knew there was such a thing as SNS!!!! I am giving him a dummy/clean finger to suck on while he's being tube fed so that he associates sucking with a full tummy.

I spoke to the dietitian this week about some of my concerns and we've agreed to try the breast feeding whenever he appears to be rooting, and before he is fed via the tube. She also shared with me her plan for baby's development: to build up his volume so we can wean him off one of the night time feeds, allowing him to sleep through the night, and wake up hungry for a breast feed.

I also spoke to my health visitor about it this week who reassured me that i'm doing the right things and that it will come. She also gave me contact details of a breastfeeding support group in the area who i intend to contact after the christmas stresses are over.

Another positive is that baby appears to be getting stronger at latching on without the shield, and he has had a couple of good feeds this week. :)

Sounds like you are doing really well OP! My DD2 was 7 weeks early and it took a while before she could latch on. I tried to bf her before each tube feed when there. She went to almost all tube feeds to me rooming in with her for 48 hours and doing all bf very quickly. On the Thursday I was sobbing because she had no feeds that day, yet she left hospital the following Tuesday.

How is expressing going now? Can you express next to your baby?

My dtds really struggled to suck hard enough but we've persevered and at 12w they finally got it, so keep going if you can. Sounds like you're doing brilliantly xx

DS2 who was 10 weeks prem was slow to breastfeed - he had extra problems (sorted now) that slowed things down.

Breastfeeding was the only thing I set my heart on in the whirl of SCUBU and caused me a lot of stress and anxiety. I got lots of conflicting advice and varying levels of support. I breastfed my older two and even with that experience it was really hard.

I kept expressing and it wasn't until he came home and we spent two days skin to skin that it really clicked for us.

Don't give up if you really want it, but do think about yourself in all this. I had lots of family support and help - it nearly drove me to my knees and when I look back I do think I should have just given myself a break. DS2 would still be the lovely, sunny boy he is now if I hadn't breastfed.

EyeoftheStorm you did an amazing thing. Obviously it was really tough but you gave your baby the most amazing medicine in your breastmilk, and actually I think it's worth looking back and thinking it was worth it, and now you have a healthy, lovely, sunny boy partly due to what you did. The ways that breastmilk helps a prem baby must never be underestimated, which is why of course milk banks spend so much on processing donor milk (about £200+ a litre), and donor milk isn't a patch on mother's own milk, even though it is preferable to formula.

fairybayleaf I'm so pleased that things are looking up for you. It's probably worth contacting Bliss - their talkboards have special areas for BFing prems with people with lots of experience of this - and also there are some FB groups for it. Not sure I'd expect him to be sleeping through the night yet though...!