Help for baby who doesn't want to feed and is losing weight

[hunkermunker]

When i had my ds i despearetly wanted to bf, but i didn't really have a clue what i was doing. i had read all the leaflets and websites etc but when putting it into practice it was not as easy as it all sounded. the midwife who had delivered my ds was going off shift about an hour after he was born and although she did stay with me trying to get him to latch on for a bit all she did waskeep shoving my boob in his mouth. she didn't actually tell me anything i could do to help things. then a few hours later another midwife came around and said if he hadn't fed we wouldn't be able to go home and i should give him a bottle cos he would be starving as he hadn't fed since he was born. i still desperately wanted to breastfeed and thought in the comfort of my own home i would manage it.

i am still trying to perservere but now HV is not happy because he has lost weight. tbh he doesn't feed well on breast or bottle (he has some EBM) - he has something called floppy larynx syndrome which makes it difficult for him to breathe when feeding. they want to put him on some increased calorie formula and if he still fails to thrive he will have to go to hospital.

i hate the fact that he doesn't want to feed let alone breastfeed. he has been known to go 9 hours without a feed cos he just refuses to take anything and then i doubt he's even had enough. going to still try and keep up with the breastfeedingm but i can't help but think it is all gonna end very soon

BL - who diagnosed him with the floppy larynx?

I would go back to your GP and ask to be referred to a paed at the hospital (I assume this was where they diagnosed the larynx issue). Don't worry about it - it's a really common thing to happen - we had to do this a few times and the hospital are totally used to this for such small babies! I'm not a medic either but a friend of ours had this with her baby and had no feeding problems but I do know she said there were degrees of it so if it is interfering with his feeding, then something needs to be done about it now.

It may not mean the end of breastfeeding (if that is what you are worried about). It might mean he just needs some food fed to him via a different method (like a feeding tube or something) for a bit.

Have yuo contacted your maternity hospital? There may be a breast feeding specialist there? I got a lot of support from my manternity hopsital (which also ran a breast feeding support group), and when ds was slow to gain weight, they referred him straight away to the paediatrican there. I saw a senior registrar paediatrician within an hour (to be fair, the maternity hopsital is co-located on with a children's hospital, so it makes it easier to access the resources) and the consultant a few eeeks later.

In my case, ds was was just following his won growth curve, iue while he techincally a "failure to thrive baby, he was patently obviously thriving - happy and alert. he was* sleepy at night and had to be encouraged to feed (and for a while I gave him every second feed as EBM, but it made no difference) - but the issues with your child do sound more serious.

How do you know that he has "floppy lartynx syndrome" - who diagonsoed this?

As he is only 2 weeks old can you give the Postnatal ward a ring and see if you can get a quick referral to a paed via them ? It sounds as if you really do need to see urgently, face to face, both a qualified Breastfeeding Counsellor, preferably with experience of this condition, and a paed to give a more medical evaluation.

good luck

Bamboozle: contact the nct again. try to get to the person you spoke to first but if not, speak to anyone you can. they welcome questions so don't be intimidated like I was at first. i am worried which is why I sound pushy.

your hv has not been helpful. if you are anywhere near me, i will also try to help. i am in the North East.

A friend had a similar problem. Lost loads of weight, and baby had to go into hospital and be fed formula nasally through a tube.
Breastfeeding not working, all v stressful. In the end he went on to formula via a bottle
Finally after 3 weeks she got help from a lovely NCT bf counsellor.
Against all the odds she managed to re-establish bfeeding.
It was all down to the latch.
He is 4 months old now and exclusively bfed, and a fat little sausage!
Please get help asap
Good luck

How's it going today, bamboozleslover?

it was the HV who thought he had the floppy larynx (she is good for some things) and was confirmed my GP. went to hosp today and luckily the ENT specialist was there. he has referred him to birmingham childrens hosp as he wants him to have a camera down his throat and he needs to be put under anasthetic which our hosp can't do. we are going there tomorrow so its all happening quickly. paed noticed he didn't have much ofa cry so now they aren't sure if it is something further down than the larynx which could be affecting this. i told them i have an underactive thyroid and were shocked when maternity hadn't done this test on him esp after they had been concerned that he was very sleepy and not feeding (but still discharged him.)finally he had a poo this morning since sunday afternoon.

have been following your threads but am no expert so haven't been much help .
glad to hear people are listening to you and everything's moving quickly - hope the tests are useful and ds gets a diagnosis and some help to get to the bottom of all this.
Don't really do hugs but am thinking of you.

I'm a bit fed up of MN at the moment but if you want some support from someone who had a baby that refused to breastfeed and lost a lot of weight. but due to excellent advice and support managed to get through it email me on julief1_bw at hotmail dot com.

I am a peer supporter which means I have done an 8 week trainign course. I have nowhere near the knowledge of a bfc but I do have backup from my organisation whould I need more specialist info to pass on.

bamboo, it's good you are in touch with people who sound as if they want to help.

Have you had your baby weighed, by the way?

BL - glad someone is listening to your concerns, even if it's all rather quick. My dd is looked after at Birmingham so if you need any practical info - parking and stuff - if you're not local, e-mail me j a x p 63 @ hotmail.com.

had him weighed today - he's lost a further half an oz since monday. i'm so scared for him. thinking of a tiny baby being put under anasthetic scares me. i keep thinking of smoethign i read in the paper years ago about a baby being given the wrong amount of anasthetic and it was lethal. i know it was obviously a rare case but its still there at the back of my mind that he won't wake up.

will keep thinking of you BL.

is the hospital unit going to support your breastfeeding? I should think that they should offer you a hospital pump in the interim.

BL - try not to worry. You're in great hands at Brum and they deal with littlies everyday. And they are usually very supportive of breastfeeding mums.

Will be thinking of you.

Have only just seen this thread. Try not to worry bamboozleslover - consultant anaesthetists look after babies under anaesthetic - he will be fine. While you are there you might find that they have an infant feeding advisor who could come and speak to you. Hopefully you will get some badly needed help with your feeding problems. I am glad you have been referred for specialist help which is long overdue.

Dear Bamboozleslover,
I am sorry about all the worry you are going through with your new baby.The first weeks are so special and i hope you are still having lots of cuddles in between everything else thats going on. I Cant say much about the larynx problem as thats more medical. Also the sleepyness ect. needs addressing .However i can hopefully offer you some reassurrance on the feeding/weight gain issue.I am a community midwife and often encounter mums whos BFed babes take over 3 weeks to regain their birthweight, so if he did that last Wed thats really fabulous ! Well done you. Also the centile charts are based on American trials of bottle fed babies-so i dont worry about them at all !. You know your baby best and if he settles after most feeds, wakes spontaneously most of the time and wees and poos thats reassuring. It is quite normal for breast fed babies to poo at every feed or not for several days.Because the majority poo very frequently we all get worried at the other end of the spectrum !To check he is weeing try popping cotton wool balls at the front of his nappy-far easier to tell that examing the very good disposables ! Whatever you are doing feeding wise sounds brilliant otherwise your baby would not have regained his birthweight. Hope the hospital goes well and dont lose sight of what you are obviously very good at - bfing !

motherearth - gonna have to correct you about the charts, and regular MN people will know I have a bee in my bonnet about this, sorry

The charts in use in the UK are not based on formula fed babies (unless your area is using something very strange). They are based on many thousands of UK babies, whose feeding is not differentiated. Some of the babies will have been excl bf, some will have been mixed fed, some will have been formula fed, some will have had early solids. The charts are called 'UK 90' and they should be ID'd as such in the parentheld child health record. They have been in widespread use since the early 90s. Earlier charts were also based on UK babies, with non-differentiated feeding.

In any case, in the first weeks a well-fed breastfed baby typically gains weight a little faster than a formula fed baby. After the first months, a gap starts to appear, when bf seems to make babies slightly lighter than formula feds.

It is also not normal at all for a breastfed baby to go several days between poos - that is a red flag that shows other aspects of the baby's health need looking at, especially the feeding. Several days between poos is only normal after the first four weeks or so. Very occasionally, a healthy bf baby where the feeding is going well will miss a day or so - this is not the case with bamboo's baby, who has not reached birthweight yet and has actually lost weight since the last weighing (not sure where you read the baby had regained birthweight - sorry if I have missed it). The baby is also very sleepy. So the lack of poos, the poor feeding experience, the baby's behaviour and the slow weight gain/weight loss is all part of the same picture.

I am very sad for bamboo, but glad she is getting some expert help, and agree with mears that this is well-overdue and that the infant feeding adviser at the hosp (if there is one) will be a good resource.

I am sure you meant to help, motherearth, but the reassurance you wanted to offer was just not right....sorry to be so blunt.

Tittok,
I stand corrected ! Didnt know all that about the centile charts but they are undergoing radical change in Shropshire so maybe they could be differrent. According to bamboozlover her baby regained birth weight at 11 days old (post says last Wed on a Mon when he was 16 days old.) That is 100 % good.I wasnt trying to be too laid back because there are obviously problems that need addressing and fortunately that is happening for this mum.Its just that with all thats going on i think its really important that this mum has as much support as pos to continue bf`ing.It could be a positive thing amongst all the other worries going on.If a breast fed baby had regained its birthweight by 11 days old surely something really good is happening because that is great.Even if the baby is poorly, not thriving ect and needs comp feed or otherwise, brestfeeding could still continue for many months as well ?

Hi, motherearth. bamboo's baby is still under birthweight. He reached birthweight as measured on spring balance scales (not accurate) and has since lost weight (done on 'proper' scales) and is continuing to lose weight. My guess would be that the weight taken on spring balance scales that showed birthweight was not correct. In any case, he is not at birthweight now and appears to have lost weight - how is that positive?

I agree - breastfeeding can continue and it's great she has support (sorry to be talking about you, bamboo!!! at least it's not 'behind your back'!!).

If Shropshire have been using US charts, then they must be the only place in the country that has been doing so. You can read in the PHCH record which charts you are using. You aren't alone in getting this wrong about the provenance of charts - plenty of midwives and health visitors seem to have this idea.

But who told you breastfed babies gain weight more slowly than formula fed babies in the first weeks? It's the opposite of the case - you can see this on the new WHO charts.

However, as we know, individual babies grow at individual rates, and comparing a baby to a chart is only part of any assessment.

Bamboozle - been thinking of you and hoping it's all going OK.

Tikok - I knew you'd be back about the charts lol!

I'm very glad I'm not a health professional. As the mum of a baby with congential heart disease, sleepy/poor feeding babies always set my alarms off. It must be very difficult to express concern without causing panic.

hi everyone, thanks for your support.

wel toby-jack had a camera down his throat today to look at his throat and he has not got a floppy larynx as diagnosed by the GP. the consultant gave me some stuff for reflux as he has to rule this out before he can do the further examination with the camera which needs to be done under anasthetic. tbh i'm not convinced it is reflux - i always thought these babies cried unconsolably? toby-jack hardly ever cries!

thankfully he has pooed again today and has had slightly wetter nappies and has fed quite well (for him) yesterday and today. was not hard like the one yesterday, although it was not very much at all. dunno if that matters or not.

motherearth - although he is alert when he is awake and will wake spontaneously this sometimes only happens if we leave him for 7 or more hours (obviously too long to go between feeds so we usually try and wake him - but with little success much of the time)

BL: have they done anyother tests such as your mention of underactive thyroid? i noticed you mentioned you suffered from this.

yes that was done yesterday. paed couldn't believe maternity had overlooked this!