Breastfeeding gone so wrong -- is it too late to fix it?

[KateTheShrew]

Apologies in advance: this is going to be looong...

My two month old baby son latched well straight after birth, and I always planned to exclusively breastfeed for a year if I could. Things seemed to be going well in the beginning -- milk came in on day three and my midwife observed him feeding a couple of times and said everything looked perfect (Ha! little did we know).

Anyway, at about 10 days old he had a major screaming episode -- 10 hours solid, trying to feed but too distressed. We called the out of hours GP who referred us to the local children's hospital to be on the safe side. They said medically he seemed fine (hydrated, alert etc), but was hungry and distressed. He was tube fed over night, and we were sent home the next day after a day of breastfeeding (they recorded the times he fed but never observed the feeds).

Anyway, having only lost 5% of his birthweight in the first five days, he stopped gaining consistently. He would gain a bit, lose a bit and repeat. The midwife became concerned, and on the advice of a paediatrician at the hospital we started him on 30ml top ups of EBM or formula (depending on what I had) every three hours. He gained a little.

I started researching myself, and became concerned that the problem was that he wasn't feeding effectively (he often fell asleep, I could rarely hear swallowing, and he seemed mostly to be just 'nibbling'). I contacted the infant feeding advisor at the hospital where he was born and she observed him feed and said he was basically transferring no milk at all! We went for another medical review and were referred to a pediatric consultant.I was also told only to put him to the breast briefly and give full feeds by bottle to get his weight up and monitor whether he could actually gain weight if taking in a reasonable amount of milk. Thus began my close relationship with the breast pump.

Fast forward five weeks and I feel like we are treading water... he is gaining weight and the consultant concluded that he was medically perfect, it was a problem with intake, but he has a strong suck, good latch and no tongue-tie -- there is no reason why he shouldn't breastfeed effectively, he just doesn't.

CUrrently I am only able to express four or five times a day (since my husband has gone back to work) so he gets about three bottles of EBM a day and four of formula. I try to put him to the breast before every daytime feed the only time we get anywhere is first thing in the morning when he appears to do some good sucking and swallowing, probably because my breasts are pretty full. I'm so frustrated and depressed the feeding advisor has no answers for us and we are basically on our own now. I've tried lots of skin to skin, going to bed with him for two days etc, but it doesn't seems to have worked. I want to give him as much breastmilk as possible, so am willing to carry on expressing if I have to but am worried my supply is dwindling and would much, much rather breastfeed directly.

Has anybody come across or dealt with a problem like this before? Any advice or just words of support? Is Is it possible to express 'part-time' and maintain some supply? I want to enjoy my baby but feel like I spend all day worrying about this and trying to fix it. Can't really leave the house for any period of time because of the expressing. I hate giving formula (nothing wrong with it, and no offence meant to mums who choose to formula feed, it's just not what I wanted to be doing) but I can't keep up with expressing to give EBM exclusively.

I should add that he loves going on the breast – no refusal! – and that sometimes it’s the only thing that soothes him.

Sorry for marathon post, and for any typos, he is crying so I am rushing this!

Oh no you poor thing. All sounds very stressful for you.

I am not an expert but hopefully someone will come along soon. In the meantime would getting a lactation consultant privately be an option? They could come to your house and help you make a plan.

It sounds like you are doing brilliantly to be feeding at all! You must both be very determined.

I admire you so much for your perseverance and determination. Any breast milk at all is better than none, and it is wonderful that your DS is comforted by putting him on your breast. I was always under the impression that by expressing, it is as if you at feeding, your boobs know no difference, so technically if you continue expressing, in theory you should produce. I am no expert or professional but I am aware that expressing can help increase your milk production if you have difficulties when breastfeeding. You must not beat yourself up about all this, you are doing your best, and that is all you can do. I can imagine it is very stressful for you, but I admire your strength. Sorry I have no answers for you, just wanted to offer my support. Good Luck.

Who checked for tongue tie?

There is a thread on here a mile long full of people who were told by HCPs that there was no tie, only to find out later that yes, their baby was tongue tied.

I think somebody saw 7 HCPs before she found one that knew what she was talking about.

Posterior ties are hard to spot unless you know what you are looking for. They are regularly missed by HCPs.

There's no sound on the video btw.

OP, can you PM tiktok? She is very knowledgeable.

Hi Op.
Wow your commitment is amazing. :) I hope you get the help and support you need here, your not alone.
Twas me who saw 7 hcp before finally getting tt diagnosed and cut. Including 3 midwives, 2 doctors, 2 health visitors. Can he stick his tongue out? ?
I second pm tictok. She has a wealth of knowledge and experience and a wonderful way of communicating it. :)
Another thought I've just had is a sns (supplemental nursing system i think) not sure how they work but someone on here will.
It's lovely that you are still getting all the other benefits of bf, boobs are magic for more than just milk. Xx

I didn't manage to BF as DD wasn't feeding properly, having screaming fits etc. could have been tongue tie but nobody checked in hospital and I was too ill after the birth to leave the house.

I do know something about expressing though as DH bought me a great pump so I could feed EBM. I pumped 5x a day for 20 mins.- so only every 4/5 hours. For the 1st week or two was more like 7x a day and by the very end 5x for 17 mins.

For the first couple of weeks I only got small amounts, but as with feeding directly, your supply increases as you request more and by the end I was expressing over 200ml/session- it took less than 4 weeks to be able to take DD off formula altogether and onto 100% EBM.

Tips for exclusive expressing

• get the best double pump you can afford to buy/rent
• use pumpease hands free bra so have hands free to attend to baby
• pump in the night between 2am-5am to maintain supply
• put batteries in pump so can use in diff places

I would definitely try to salvage the direct breastfeeding though. I quit after 3 months as GP pressuring me to switch to formula due to DD's digestive issues. I don't think I would have quit if I had been feeding directly but as exclusive pumping isn't understood by some HCPs, I felt unsure of myself. I feel wracked with guilt for not managing to BF and really wish I had managed to overcome my health issues and get some support in the first week or two.

Wow Kate, what a tale. You have been round the block and back again. It's so late and I am about to go to bed so this is brief! Can you give a bit more detail about what happened with the weight and his behaviour at the breast in the first 10 to 12 days or so? What was it that caused the midwife concern?

Wow, thanks so much everyone! Am amazed anyone bothered to read such a long post -- just wanted to get it off my chest, really.

mawbroon and rosiedays he has been checked for tongue tie by a consultant pediatrician at Alder Hey and by an infant feeding adviser at out local Women's hospital. She diagnosed tongue tie in our friends' little girl when everyone else missed it, so I think she knows what she's doing -- also he can stick his tongue waaay out, so I don't think that's the problem.

Thanks for the tips, Smerlin I'm using a medela swing maxi double pump and a hands-free bra of my own ingenious design (i.e. manky old sports bra with holes cut in it ). And I'm pumping right now (2am) although that's the only night pump I can manage I don't think I'll be able to get to exclusively feeding with expressed milk and cut out all formula (and I think I'm ok with that) but as much BM as possible would be fab.

tiktok he never dropped that much weight, (born at 3.4kg, dropped to 3.2, then 3.16, then back to 3.2 then back to 3.16 again at nearly 3 weeks) that's what caused everyone concern (midwife, feeding adviser etc) the feeding adviser was also concerned that when she observed him feed has wan only 'nibbling', as she called it, not developing deep sucking and swallowing and apparently not transferring milk. In the first 10-12 days, he seemed (to me, inexperienced first time mum) to be feeding ok, he had appropriate wet and dirty nappies, was alert etc, but was feeding constantly and pretty distressed/bad tempered. The consensus has been that, when tiny, he was able to get enough milk to just get by, but not enough calories to put on weight, but no one can tell me why, just "some babies are like that". Tbh I now can't remember, in the fog of sleep deprivation and worry, exactly how he was feeding in the early days, but I remember being sure he was getting milk, though probably not v efficiently. Now he really only comfort sucks and I can very rarely see/hear swallowing (except sometimes the first feed of the day). I don't know know if this is a continuation of the initial problem or the result of five weeks of bottle feeding and flow preference. On the advice of the pediatrician (who is v pro breastfeeding) and local peer supporters we did do a couple of twelve hour stretches where I offered no bottles, but he was on the breast constantly no beginning or end to feeds, just dozing and nibbling -- and he seemed hungry at the end of the time period. I don't want him to lose weight again so am reluctant to go cold turkey on the bottles as I really don't think he can feed effectively and I know my supply isn't enough for him anymore (I'm only expressing about 400mls a day max since I just can't find the time to do more than 5 sessions).

I think, at this stage, I'd be happy even to get back to part time breastfeeding. He seems to get so much comfort out of it it would be great if he was eating at the same time! Also it's tricky to balance giving him the time on the breast he seems to need/enjoy with expressing the milk I want him to have -- need a spare set of boobs really

kate your baby's first few days sound so much like mine- I had plenty of milk but my baby wasn't 'getting it out' so was furious all the time. Will be interested to find out what the result is ..

Aw Smerlin I'm so sorry to hear what you went through, but it's fantastic that you made it to three months! That's my next goal. Can I ask how you managed to fit expressing around your life? (or your life around expressing!) How did you go out? Did you rush home to pump at set times or were you able to be flexible with when you pumped? I think I'd feel a lot better if I felt I could go out and see people a bit more -- don't really want to take the pump with me. Think getting my baby to bf is looking less and less likely... This morning he woke up grumbling as usual so I put him on the breast (usually he has a pretty good go at this time) and he just Nuzzled a bit and went to sleep. He's snoring on my lap right now! Just wanted cuddles, I guess.

Aw Smerlin I'm so sorry to hear what you went through, but it's fantastic that you made it to three months! That's my next goal. Can I ask how you managed to fit expressing around your life? (or your life around expressing!) How did you go out? Did you rush home to pump at set times or were you able to be flexible with when you pumped? I think I'd feel a lot better if I felt I could go out and see people a bit more -- don't really want to take the pump with me. Think getting my baby to bf is looking less and less likely... This morning he woke up grumbling as usual so I put him on the breast (usually he has a pretty good go at this time) and he just Nuzzled a bit and went to sleep. He's snoring on my lap right now! Just wanted cuddles, I guess.

Kate I can see why there was concern. I don't agree that 'some babies are just like that'. There is a reason why a healthy baby with a patient and responsive mum would not be transferring milk adequately. You describe good support and encouragement. Could you ask for a referral for a another full assessment of what might be going on? I do find it hard to understand why a baby would go from apparent normal transfer of milk to not being able to do more than nibble.

Just to clarify - there is a reason but I don't know what it would be in your case, sorry.

I wonder if a Supplemental Nursing System (SNS) would work well here?

This sounds really strange. It can't be your breasts if you're getting milk out by expressing (although not being able to express isn't an indicator either, but it's obviously a good sign!)

Bubble palate maybe in the baby or a lip tie perhaps? Although lip tie pretty unlikely without a tongue tie. If you stick your own thumb in your mouth, you can get an idea of how a normal suck should feel like. Letting your baby suck your little finger (nail side down) might give you an idea about where it's going wrong, which might give you something to work from.

Have you tried these?

The "flick" thing or exaggerated latch

The other - which is a Clare Byam Cook special, 99% of her advice is utter drivel, but this one really can work, it's where you hold your breast with 2 hands and sort of squash it into a "hamburger shape" so that it's more of a horizontal oval than a big circle. That can help the baby to latch on more deeply.

Thanks all, it's lovely to have your input .

I've been shown how to do the 'flick' and the 'hamburger shape', but even if I do get him latched properly, he doesn't get beyond the initial shallow sucks and soon dozes off, even when I can feel letdown.

tiktok I totally agree that he did need to be supplemented, and he's now over 9lbs and getting chubby which is lovely! It's just difficult as I'm sure the bottles have exacerbated the original problem of ineffective feeding.

I've been considering contacting a private lactation consultant but I do also wonder if after so many bottles he will just never get the hang of it. I worry that I might be wasting these precious early weeks/months fixating on this problem (I admit I have a tendency to obsess about things and to think I can 'fix' any problem if I just try hard enough). It's just hard to know whether to give up altogether, to continue expressing, or to keep persevering with breastfeeding-- at the moment all those options are making me pretty sad and I feel like I'm in limbo and can't move on. I keep telling myself I'll give up on trying to get him to feed, but every time I find that I can't quite let go and I'm perpetually giving it 'just one more try'...

Bertie I haven't come cross bubble palate before, I'll look it up, but he has an extremely strong suck (all HCPs have commented on it).

Oh Kate! Sorry I have no useful advice to give at all, just wanted to say whatever you decide, you sound like you are giving this your all, and your DS is very lucky to have you as a parent.

One day, when he is 3, or 11, or 18, you will be looking back at this - there is a whole lot of parenting ahead, and while that doesn't make this any easier, it will one day be just one small part of a whole package.

and [tea]

Thanks, Smerlin, that's really helpful, and sounds fairly like my routine now (except it sounds like I have less milk than you). I also have a really supportive husband who cleans and sterilises pump parts at the end of the day so I can get to bed a bit earlier etc. Couldn't do it without him.

I think I've decided that for the moment I need to give myself a break from worrying about this 24/7 so I'm planning to continue pumping around 5 times a day so that I can mix feed him EBM and formula (roughly half and half). I'll review this at 3 months and see if I want to continue. I've spoken to a breastfeed peer supporter again (who's been a huge help) and she's assured me that this amount of milk will still be really beneficial and that I should be able to maintain my supply at the current level this way. i'm also going to keep trying him on the breast, but not obsess over it -- hopefully this way I'll keep my options open and haven't completely closed the door on breastfeeding, but I don't want to make it the focus of our lives.

Typically, as soon as I decided this, DS went on the breast this morning and had the best feed he's had in ages lots of swallowing sounds and definitely softened both breasts. So we'll see how we go.

Thanks for your help and kind words everyone, I'm sure I'll revisit this in the future, but for now I'm going to try to just enjoy my baby and not worry too much about where he's getting his meals from!

And whatever you decide to do, milk feeding is not the be all and end all. When I couldn't bf directly I felt rubbish. When I gave up expressing I felt rubbish. Now we're gearing up for weaning these things seem like distant memories !

I haven't read the other replies but maybe get tongue tie checked again. We asked several midwives, paediatrician, health visitor and all said was fine before breastfeeding counsellor spotted and we got snipped privately at 8 weeks. (£90 at kingston hospital).

And absolutely you can mix feed. A couple if my friends have been for about 4-5 months. If you both enjoy it and you are giving him enough one way or another then keep going. Sounds like you are doing a great job. I gave expressed top ups in a bottle 6 times a day until we got the tt snipped, then switched to just bf.

kellymom.com/bf/pumpingmoms/pumping/pumping_decrease/

I wanted to send you this in advance just in case - sorry about the discouraging title! I'm not sending it because of that, just that halfway down there's a very good description of what happens when supply settles at about 3 months which takes most people by surprise, as it feels like your milk supply drops. I didn't want you to worry when it happens! :)

Thanks Bertie -- that's really useful.

And thanks OrangeBlossom it's great to hear that you managed to get back to bf and reassuring that the bottles didn't interfere: one of my worries is that the bottles we're giving have made his feeding worse, so it's good to know that's not always the case. I do think it's going to have to be mix feeding for us as if I was to pump any more often than I am now I'd find it hard (or, more accurately, even harder!) to leave the house or play with and look after my baby, and pumping 5 times a day I can only produce about half of what he needs.

I really don't think it's tongue tie (almost wish it was as then at least we'd have an answer). The infant feeding adviser at our hospital has checked him several times for tongue tie (posterior and anterior) and lip tie and has found nothing... poor woman kept saying "lets just double check again" as she couldn't see any reason for his problems. And she diagnosed the tongue tie in our friends' little girl when it had been missed by several other HCPs, so I think if it was there she would have spotted it.

Smerlin you're so right about it not being the be all and end all - I keep trying to remind myself of that when I feel sad. I'm sure in a few months this will all seem a distant memory, but just now it's looming very large!

kate your story sounds very similar to mine. Dd was feeding constantly and not gaining weight. In my case it seemed to be because her latch was bad, so I was in agony as well. She had tongue tie diagnosed and I paid £300 to have it snipped privately as another day of agony and screaming was too much. Sadly the snip changed precisely nothing, so now I am mixed pumping And formula like you. She also gets the odd go on the breast for fun when I am feeling brave. She's 10 weeks now and although pumping then formula then breast is a faff for each feed, I am still high on the novelty of having such a thing as a 'feed', rather than an endless 24 hour chompathon. It's wonderful to see her happy and satisfied in a way, like with you, she hadn't been since the early days. I don't know how long I'll manage to keep it up for but it's working for me for now. She's being fed and I'm no longer in pain. Good luck!