Desperate for advice, threatened with an NG tube for feeding

[Cobo]

I would really appreciate some advice after a fraught phone call with my community nurse that has left me in tears. Sorry if this is long.

My DS is 12 weeks, and has a congenital heart condition. He was in intensive care for several weeks after birth, and had several major operations. He was fed intravenously, and then EBM through an NG tube, but we managed to establish breastfeeding in hospital, and he's now home and exclusively breastfed. His latch has been observed by two infant feeding specialists and seems fine.

It's very important for him to gain weight well, as he's due to have another operation in a few months time. As he's had some issues with weight gain (has been gaining but relatively slowly) , I went and saw an infant feeding specialist at our hospital who suggested giving him an EBM top up once a day. I've been doing this by syringe as he doesn't take a bottle at the moment.

The first week I started the top ups, he gained 230g. Second week he gained 160g, which was treated by the community nurse as if it was a bad thing as it was lower, but seems ok from what I've read? Then yesterday he was weighed and had lost 10g.

However, the nurse brought the wrong scales, a different set to what we had been using. He's also had a cold and cough all week, which has put him under more strain than a normal baby as he already has to work hard to breathe.

Based on that weight loss, I'm now being told I must start giving him high energy formula, and have also been threatened (it felt like that) with putting him back on an NG tube for all feeds if he didn't take formula from a bottle.

This just feels like a disaster. An NG tube feels so extreme when he gained weight well for two weeks. It's left me so upset and dispirited. I think breast milk is the best thing for him, as he has a compromised immune system, and really want to stick with it, but feel like I'm being pressured into just switching to formula or going back to NG feeding.

I guess my question is , am I right to insist he is weighed again on the same scales as before? The nurses have brushed off my concern about the scale, saying the discrepancy will be minimal, but I have read otherwise. And is there anything else anyone can suggest to help boost his weight gain?

Thank you.

[bagofsnakes]

What a horrible situation for them to put you in . I think that you should stick with your instinct that breast milk is best for him, I think you're right that he probably needs it even more than a healthier baby. Get on to your local La Leche League www.laleche.org.uk they could be really useful right now. Also use any other local breastfeeding support that you can find to help you fight your corner.

We weren't in quite the same situation as you but when my DS1 was born he had some health issues and the hospital really tried to push formula. It completely went against my instinct for what was right for him and we were lucky to have one very pro breastfeeding doctor who supported our decision to stick to BF. Our DS may not have gained weight as quickly as if he was on formula but he gained what he needed as is now one of the most robust healthy looking children I've ever seen... Although I guess I would say that.

Hope that your LO gains what he needs soon, sure it'll be easier once he's shaken off that cough and cold. X

[bagofsnakes]

Sorry, I also think you're right argue about the scales. Basically I think you should be a right pain, get them to bring the same scales every time, insist that you're stick to the method of feeding that you feel is best for him and insist on them supporting you with that method.

[WishUponAStar88]

I also think you should fight for a consistent set of scales although with a cold this week it is possible that the reading is right but of course you need to know.

Well done for managing to express for a top us once a day, expressing is hard work! If your ds's weight is indeed static/ slow to gain then you could ask about fortifying that ebm with maxijul or similar before using formula if that is preferable. That way extra calories are added to your milk.

Is this a regular community nurse? I presume you have a cardiac liaison/ support nurse at the hospital? If so and you continue to disagree with their management it might be worth having a word with your cardiac liaison nurse to see their thoughts as many community nurses with have minimal experience with complex cardiac babies.

I am glad your little one is home after what sounds like a rough start in life bless him.

[Cobo]

Thanks bagofsnakes and Wishuponastar.

Unfortunately the suggestion of a return to the NG tube is coming from our cardiac liaison nurse - the community nurses have been reporting the weights to her and relaying back to me. I guess I should speak to her directly too.

Obviously I want to do what's best for DS, and I want him to gain weight, but it just feels like they're writing off our ability to breastfeed after one bad week.

They've mentioned the calorie supplement stuff (although dismissing it because he doesn't take a bottle) , so I will pursue that.

[madwomanbackintheattic]

Are they concerned about the effort required to feed? Or the calorie content of the milk? If the effort, you could try using a supplementer system with breast milk?

Dd2 was ng fed initially.

Remember whatever happens, it's temporary - if the team (including you) decide to use an ng tube for a couple of weeks to improve weight gain and give ds a bit more resilience, then it isn't a permanent state of affairs. Keep feeding him, and keep expressing, and you can resume down the line on removal of the tube.

I do feel your pain though - I felt they had effectively written off dd's ability to ever suck feed, so I went in all guns blazing with the consultant. He actually agreed that she should be given more a chance, so do discuss the full implications of all the available options with the consultant - the nurse is fine, but if you feel strongly, ask to discuss changes in care with the consultant.

[Notch1]

Sorry you are having a tough time.

A friend of mine had similar problems, her DD wasn't gaining weight, refused to take a bottle etc. They were in and out of hospital with poor weight gain.

The following saved them. While BF they put a NG tube in a bottle of formula and then tucked the other end of the tube in her babies mouth so while BFing she also got formula. They did this until their DD took a bottle and then they did mixed feeding after that. Hopefully this makes sense and might be worth a try.

[juniorcakeoff]

Babies can feed from NG tubes and go back to the breast, I know, one of mine with a very poor suck reflex did. I saw the NG tube (with foul high calorie nutriprem milk) as a medicine which he needed. I offered him the breast at every feed and between the scheduled NG feeds. He only needed it for a week or two to give him the strength to start feeding again. Breastfeeding (and bottlefeeding) can be hard work for a tired and sick baby and he may need temporary help. These babies can go downhill very quickly which is why a small weight loss is taken more seriously.

Having said all this...please only take advice from a qualified BF specialist on this e.g. infant feeding coordinator at the hospital, not randommers off the internet. Good luck.

[slippermaiden]

I am a neonatal nurse. We put fortifier in breast milk to up the calorie count, but that would be given thru a tube or bottle. Could you ask to see a Dr?

[Cobo]

Thank you everyone. Madwoman, they seem concerned that he's not getting the calories. He's always fed ok, a good strong suck. He's my second, so I have a "normal" baby to compare with, and his actual feeding seems fine to me.

Notch, thank you, that sounds like a really good idea to try, I'll talk to them about that.

Juniorcakeoff, thank you, it's great to hear a success story like that.

Slippermaiden, they have mentioned the fortifier, but seem to think that because he won't take a bottle we wouldn't be able to get enough down him, so an NG tube and formula is the next option.

[juniorcakeoff]

Sorry Cobo I totally forgot to say you have done fantastically well to get this ill baby breastfeeding and gaining for those weeks, if you do need to go to NG tube for a bit it sounds as if you will have no problem getting him back on the breast as you are very committed, and so is your baby if he won't take a bottle even though it is easier!

[madwomanbackintheattic]

Notch's idea is similar to the supplementer system I mentioned in my first para - but it's really for babies with weak suck I think (in that, if he is getting a good quantity of bm, it would not make sense to supplement with an additional amount of fluid as it might be too much for him too cope with iykwim)

Supplementers are usually used when there is a problem with the baby getting the quantity of milk -either because of weak suck or tires too quickly for other reasons.

There is bound to be a way though, even if it is to continue to bf, but to intersperse feeds with ng fed high calorie milk until he is stronger.

Did you bf with ng in place last time? I know we were trying to do so with dd, but her suck was frankly crap.

[Cobo]

He doesn't seem to me to have a weak suck, and all the nurses and feeding consultants who've observed him feed say his suck seems strong, so I don't think that's the problem. I worry that I didn't express enough in the first few weeks so my supply is low - I don't get as full breasts as I did with first DS. But he has plenty of wet and dirty nappies, has milk in his mouth when he comes off and never seems frustrated.

When we first started breastfeeding he'd only feed for a few minutes before falling asleep, but he's got a lot better and a typical feed is 15 or 20 minutes. He does tend to do a lot of swallowing early in the feed and then goes to more of a fluttering suck with less frequent swallows.

Madwoman, yes, we fed we fed with the NG tube in place in hospital. Just have to keep reminding myself it can be a temporary thing. It just seems such a step backwards.

[madwomanbackintheattic]

I know. Did had been home a week when she stopped feeding and had to go back and have the ng tube replaced. but she got there in the end.

Think long term, and consider it a boost to help him get there

[lotsofcheese]

Sorry this is going to be a quick reply as off on the school run soon.

My DS was premature & had lung disease, on home oxygen. I was told
babies with heart/lung disease have increased calorie requirements - 20% above normal in our case. So dS needed the calories to gain weight normally.

We saw a dietitian - could you ask for a referral?

[Cobo]

Thanks lotsofcheese, I'll ask about seeing a dietician. They had them on the heart ward we were on.

[Cobo]

So unfortunately DS was weighed again today on the right scales and his weight is still static, so we've been told to start adding normal formula to top up feeds of expressed milk several times a day before breastfeeding. Does anyone have any experience of doing this? It's a bit of a nightmare as DS won't really take a bottle. I'm trying a cup, but he's not managed that yet. They've told me not to use a syringe because of the risk of aspirating the milk, so it's all a bit of a stress! I'm wondering how small an amount of milk I can dissolve the formula in.

[Cobo]

Just to clarify that, they've told me to dissolve formula powder in expressed milk for the top ups to boost calories.

[lotsofcheese]

I do have experience of that & was unhappy with the advice - breastmilk & normal formula have the same amount of calories, so it didn't make sense to me to add in normal formula. Have you been given advice on exactly how much powder to give?

It was at that point that I pushed for a dietitian referral. We were seen quickly & given a formula with 100kcals per 100mls ((Infatrini) compared to breastmilk & ordinary formula which both have 66 kcals per 100mls.

To be sceptical, I wasn't happy with nurses advice on feeding & wanted an expert opinion.

In the end, my DS required Infatrini to gain adequate weight & be strong enough. I was absolutely devastated about not being able to BF, but it just wasn't meeting his needs.

[Writerwannabe83]

Dissolve formula powder in breast milk?! I've never heard of that before.

How does that work in terms of making sure the powder is exposed to boiling water to kill of the bacteria?

I suppose the worry is that although the suck is good because of the heart condition it means DS may be using up a lot of energy reserves in order to feed and potentially burning off more calories than he's taking in. For a baby, feeding is the most tiring activity they do and I've heard that breast feeding can be quite strenuous work and for a baby with a cardiac condition it may be extra tiring for them.

Could you buy your own scales and then when DS is weighed use those? At least that way you know without fail the same scales are being used.

If your DS won't take a bottle then maybe an NG is the only option and as had been said it should be viewed as a necessary short term plan but I can totally understand why you feel like it is a step back.

Could you not top him up via NG but give him breast milk with a calorie supplement to it? That way he's still just having EBM but also getting the extra calories that he needs?

Just focus on the final destination which is an exclusively breast fed DS who is gaining weight and remind yourself that it doesn't matter what journey you take as long as you get there in the end.

[Cobo]

Thanks writerwannabe, I think I've accepted now that DS needs extra help here, so I feel much happier about topping up with formula in some way than I did. Managed to get the bottle top ups down him last night... eventually.

Lotsofcheese, this suggestion actually came from a dietician who I spoke to on the phone yesterday. The way she explained it, breast milk and formula have the same calories, so adding formula powder to breast milk effectively doubles the calories (or would if you used full amounts of formula). We could get Infatrini on prescription if I wanted to I think, but I wanted to try expressed milk first. If it doesn't work out we'll go that route.

I asked about the boiling water thing - that's the main thing that's worrying me. Formula isn't sterile, right? She seemed to think it wasn't a problem, but I don't understand why not really. That's partly why I was hoping to find someone else who'd done it, to find out what they did. I'm wondering if I should use hot water to make a paste with the powder first or something.

[lotsofcheese]

We did initially over-concentrate feeds using formula into EBM on the advice of the dietitian eg adding an extra scoop per 100mls. But DS was bottle fed & couldn't BF.

It sounds odd, but NG feeding on top of BF can actually preserve BF. If the baby is NG fed, they still continue to suck & feed in their usual way. Whereas bottle feeding can sometimes be hard to come back from as it is easier for babies than BF.

For example, my DD was tube fed in scbu, using EBM, so that she could learn to feed from me. She had NG tubes passed so she didn't get confused between breast & bottle.

Also, as someone said up thread, please take advice from the professionals who are involved in your daughters care, as they know the clinical situation, rather than a random bunch of strangers on the Internet.

[Writerwannabe83]

I think it's a good idea to dissolve the powder (how many scoops have you got to give?) in as small amount of hot water as possible and then add your breast milk to it.

I would make it runnier than a paste consistency though as you don't want to make it so thick that DS can't suck it through the teat even with the added EBM.

Maybe you should have a few trial end error experiments