Breastfeeding a baby who has to go 'nil by mouth' - advice please!!!

[veryworriedmummy]

My DD is going to have to undergow at least two operations to fix a birth defect in her bottom area. We are still waiting to see a specialist, but we know these will need to take place in about 8 weeks time at the latest.

I'm still in shock and trying my hardest to be strong and positive about things, but if I'm honest I'm finding it hard to cope with all the anxieties I have about what lays ahead. I'm sitting here in tears just thinking about it.

I rang the hopsital today and found out that when they give her a stoma, she will have to go nil by mouth for around two days and if she crys for the breast I will just have to pacifiy her some other way. I desperatelt want to breastfeed her until she is around two as I did her brother and I'm so worried that she will reject breastfeeding or forget how to do it after being denied it for that long. Breastfeeding is so special to me and her, she will need breastmilk more than ever because of all the work that needs to be done to her digestive system. We both need it to so much, emotionally.

When I think about all that faces us, the pain that my tiny baby will have to go through, the risks of her being operated on, my poor DS who I will have to leave for days and days. I don't even know if they will manage to fix her or not. I just don't know how we are going to get through it. It doesn't matter how hard I try, I can't stop worrying about it and crying.

Please can somebody give me some advice on how to cope with all this.

get advice from a bfc from one of the 4 bf organisations, a hospital with accredited baby friendly status, etc.

maybe if one of these hospitals are nearby you can contact their infant feeding advisor to look for the help you are asking for?

Could you tell us how old your baby is and if she is exclusively bf at the moment?

bumping for you otherwise.

She's 2 weeks old and exclusively BF. Very good BFder.

Oh veryworried, what a scary situation for you to be in, I'm sorry you and your dd are facing all this.

I haven't had any experience of this so I can't help with them emotional side but I have a couple of practical suggestions.

My thoughts on the nil by mouth were firstly that if you express at least 8 times in each 24 hours then your supply should hold up really well. I think the harder part will be pacifying her if she wants to feed. Have the hospital said anything about how she will be after the op? Is she likely to be hungry or will she be on lots of medication and not up to feeding anyway? Two days isn't a terribly long time and a lot of bf is instinctive so I'm sure she won't forget. She will also be a few weeks older so it will be more established by then too.

I don't know what your feelings on dummies are but they may soothe her if she just needs to suck for a bit of comfort over that time.

The last thing I wanted to suggest was for you to wear a t'shirt that your dh has been wearing when you hold her during those 2 days as it will disguise the smell of milk a bit.

I hope it all goes well for her and you have her back home with you as soon as possible afterwards.

veryworriedmummy how dreadful for you all.

trivial in comparison, but ds had a minor op aged 5m. anyway they said the starving beforehand was different if breastfed as is more quickly and efficiently digested, so it was only 2 hours rather than overnight. and they made sure he was first on the list for surgery.

worth speaking to hospital again, from what you have said whoever you spoke to wasn't very sympathetic. really two days wihtout food at 10 weeks? how do they propose to nourish her?

you will need to arrange to epxress, get a pump from maternity unit if there is one at hospital.

DS2 had a kidney op at 5m (10m ago now), and although he didn't have to be, he was virtually nil by mouth for a couple of days. He was a bit out of it on morphine, and on a fluid drip, so not thirsty/hungry.

I expressed whenever I needed to (hosp had an electric pump - was fab!), and stored the milk (still have it now ). You probably won't have any supply problems as you'll be with your baby, expressing as required, and probably producing more milk than usual due to the emotions of it all. I'm sure after feeding your DS until two, that your body is well set up for bfing, so even though it's early days with your DD, your body is well versed in what to do anyway.

DS2 really didn't need much comforting. I did hold him, but more for me than him. If he moaned, I just told the nurse, and they upped the morphine dose to keep him comfortable.

What hospital are you going into? We were in the Bristol Childrens Hospital. Will you be staying in a bed next to your DD? I (and I'm sure lots of others) can give you a few tips on coping strategies for your time in hospital if you like?

Thanks for your posts. Have been told I can be with her 24/7 next to her bed - thank goodness. They said that she may not even be interested in feeding after the op as she will be groggy and on pain relief. I'm hoping that will help cover some time. She will be at the Queens MEdical Centre in Nottingham. They are on that BF initiative list that kiskidee posted so I am going to ask my GP to get in touch with the person there on that list for advice.

I had started to get my head around allot of this stuff and I only rang the hospital today because I wanted to check that I would be able to stay with her 24/7. The nil by mouth thing kind of just cam eup in converstation and was a real shock. I had asked a surgeon on the neonatal ward about this and he had said 2 hours, but he must have meant pre-op. I keep hoping the nurse I spoke to didn't realise how your DD is and that she isn't on solids. Maybe that will reduce the time or maybe I'm just grasping at straws.

I bet its all going to kick off around blooming Christmas time too

big fat disclaimer here as I have no medical background just a bit of bf knowledge.

bf babies digest breast milk very differently from ff ones and most of these hospital policies will be designed with ff babies in mind. by 10 wks old, bf babies are digesting almost everything that goes in.

in eight weeks time, your baby could be having very infrequent bowel movements, so, if an empty bowel is required for the op, I should think they can work with her to have it emptied shortly before the op (say with supossitories) and you can continue to feed for later towards the op.

make enquiries along that line.

unless of course a bfc like tiktok comes along and blows my [harebrained] schemes out of the water.

my dd had bowel surgey at 3 days old and was given a stoma which was then reversed at 6 weeks old. She has also had a further general anaesthetic at 4.5 months (she's now 6 months).

Before the first op she hadn't really fed at all since birth and was on IVs. These continued after the birth for about 5 days after which I was able to breastfeed her whenever I could make it to the NICU. In between times I expressed every 3 hours if I could although the advice the hospital gave me was not to try and express during the night but to express before going to bed and then set the alarm for about 5.45am to express first thing. I wasn't able to be with her 24/7 so she was either fed expressed milk via a nasal gastric tube or a cup as I'd made it clear that I wanted to bf her. The expressing paid off as I'm still exclusively breastfeeding her 6 months on.

After the stoma reversal she was given milk (albeit in small quantities) within a couple of days and was able to come home the following week.

With the last procedure (which wasn't on her bowel)I was told that she could be ff up to 6 hours before the anesthetic, bf 4hours before or given just water up to 2 hours before.

It is horrible having to watch your LO be put under anaesthetic and endure all the daily tests that seem to follow on afterwards but babies really are tough and bounce back quickly. You will be amazed at how well your dd will cope with it. Just surround yourself with family and friends for support and if anyone offers to cook meals, do your washing etc then take them up on it. You might also want to give yourself a break from the hopsital some afternoons as they can be extremely draining and you will need all your strength.

Thanks four posts. Good to hear your story ellymae. I think I just have to accept that it is going to be hard for everyone and we just have to get through it.

Rang the hosp again and spoke to someone very reassuring who said generally the babies do manage the 2 days OK, although they get hungry by the end. Also, they usually manage to BF ok afterwards although they need to be broken off so they don't gorge themselves on milk before their tummy's are ready.

Just got to get through it and try to be strong for once.

veryworriedmummy, its easy to say but try not dwell on the operation too much. The day of the hospital admission will come but for now try and enjoy every day and week with your DD - 'take one day at a time'.

When the time comes it will be hard but you will find an inner strength you never knew you had and you will get through it. I never had myself down as a strong person and every night of the 7.5 weeks my LO was in NICU, I'd go to bed thinking I can't do this any more, but each morning the alarm would go, I'd get up and start the day again.

People said to me how well I was coping and how strong I was and that will be what people will be saying about you. You will be OK, just live for the moment.

And how can I be qualified to say this? Well my DD has CF and I can't afford to look into the future too much, so instead I enjoy every moment with her in the here and now.

Good luck

Hi veryworriedmummy,

My DD2 had open heart surgery at 6 mths and was normally fed EBM. I kept expressing for her which was frozen whilst she couldn't be fed.

Usually post op they are fed intravenously, whilst the gut is rested, then they may pass a nasogastric tube to feed her so they can regulate her intake. They can then put your EBM down her tube.

I imagine she won't be hugely hungry post-op especially as she will probably be sedated, and then hopefully she can feed again soon after. In the meantime express every few hours and that will kepp your supply up.

Hope all goes well!

Hi ellymae

Thanks for that, you do indeed sound like a very strong, together mum. I'll try to follow your advice and take every day as it comes. It makes perfect sense. I need to retrain myself to think like that. I've upset my wonderful partner and my fantastic little boy this weekend by being so down-beat and weepy. I AM going to pull myself together because I've got to. My mum was great today and has offered to be there for DD's first op and the two days after (we're assuming she will have two or three but don't know until we see the consultant).

Hi Sidge, I think you're right about the gut resting and thats why it has to be nil by mouth fir a few days and then a regulated intake. They might let me do small BF but otherwise it will be a cup or a tube. The nurse I spoke to today said that if I want to BF I just need to tell them so they don't give her a bottle.

Thanks again for your posts. They made me feel allot better