Help - tongue tie, mixed feeding, confusion...

(31 Posts)
PeshwariNaan Wed 13-Feb-13 13:31:05

Hi all,

I haven't posted here before but I'm so confused as to how to proceed feeding my daughter, who is 5 weeks old. I have a huge amount of guilt and shame and I don't think I've ever cried so much in my life as I have over her feeding issues.

I'm so committed to breastfeeding but I've had a really hard time. DD was diagnosed with tongue tie on day 1 in hospital. I had scabs and bleeding nipples. Wouldn't have minded so much if she was ever actually satisfied after a feed, but poor thing just couldn't suckle. We agreed to mix feed once home and I'm glad we did because I feel she wouldn't have thrived.

I saw a lactation consultant within the week and was put on a programme of expressing, medication for milk supply and DD was diagnosed with tongue tie, she also has a high palate and short tongue. In addition I've got flat nipples!

I never had much luck expressing so I 'didn't qualify' for NHS surgery for her, which is apparently given to women with successful expressing and a huge supply despite the fact that my baby couldn't suckle. We finally paid for private surgery on day 18 after I felt I was losing my mind. I'd been fobbed off by everyone, it's as if I was being told I wasn't good enough to breastfeed and my daughter would have to live with tongue tie. I'm still under the 'care' of two lactation consultants but I get different information from everyone!

DD has suckled so much better since the surgery but I still need the nipple shields and she's never satisfied after a breastfeed. Typically she is on each breast for 30 minutes and I'll then supplement her with formula at most feeds. This was the advice from the HV and one of my consultants. Obviously they'd prefer if I could express milk but I've never been able to. (Most women in my family who EBF couldn't express either, but their babies thrived.)

I've been reading on the Internet things that seem to contradict my consultant, that I should let baby suckle indefinitely. So this week I tried to do all breastfeeding. Well, she was on for SEVEN FULL HOURS Monday and was never full! I could see the milk coming out of my breasts but eventually I had to give her a bottle and feed myself. Is this what everyone else does? Is that amount of time normal? I keep hearing that babies can feed in 30 minutes flat!!

What should I do? I'm ok with long feeds during the day but even my 'short feeds' take 2-3 hours with a bottle. If she were only ever satisfied I wouldn't mind the length if time. (Well, except for the fact that I can't eat, sleep, have visitors, or leave the house...)

Thanks for any advice!

McBaby Wed 13-Feb-13 16:44:08

Get the tongue tie rechecked if it still hurts you of if she is struggling. Scar tissue can reform which means problems continue.

BeaWheesht Wed 13-Feb-13 16:53:13

First of all YOU HAVE NOTHING TO FEEL GUILTY ABOUT

Secondly, get the tie checked - dd had a snake tongue when born - she had it cut but tbh never latched on as well as ds did (no tie).

Dd was mix fed until 13 weeks then just formula and tbh very little breast milk after 8 weeks really. She just preferred bottle feeding.

Ff isn't anything to feel guilty about, truly. I beat myself up and wasted the first year of dd's life - don't make that mistake. Dd is 2 now and a absolute delight and I so wish I'd just enjoyed her early days.

PeshwariNaan Wed 13-Feb-13 23:56:58

Thanks both, and thanks for reading it all! What a saga. I'm trying to let go of the guilt; not easy around breastfeeding counsellors. I feel is be letting them all down. Plan is to go to 8 weeks if possible and BF as much as possible. I'd lie if I didn't say I think FF is easier and cheaper in my case at least, but I love the concept of BFing and wish it would work for us... Oh well, I should be happy I have a healthy baby so far.

PeshwariNaan Wed 13-Feb-13 23:58:19

I will get her tie checked again - appt on Mon for this!! Hoping it hasn't grown back; I've been good with massage. But who knows!

I think the tie hasn't been properly released. Also - she may be comfort sucking - have you tried a dummy when she stops actively feeding? Both mine are very sucky babies and would happily latch on all day hungry or not. It might be worth a shot. Does she have a lip tie?

PeshwariNaan Thu 14-Feb-13 04:24:52

Hi Bunty: I've tried a dummy. She'll suck when she's falling asleep but spits it out when she's actually hungry (every time I try her straight off the breast). Just to be clear, things never improved that much after the original surgery - she clearly was suckling better because my nipples felt they were getting a workout, but the feeds didn't shorten and I still needed to supplement as I do now. I've been up with her twice tonight and clearly have more milk in my breasts than she's taking in even after an hour!

I'll ask about lip tie on Monday. She was last seen about a week ago and there was slight adhesion which the consultant re- separated...

It definitely sounds to me like the tie is not dealt with - either through reattachment, or it wasn't cut deeply enough to begin with. You might also gain from seeing a private lactation consultant as opposed to a hospital lactation specialist (I don't know if that's who you've been seeing!) to get another set of eyes and really check out that latch.

Mums know best here. If you feel there's a problem, there's a problem.

Is there someone who can take her for 10 min after you feed so you can express what's in your breasts and then offer that as the top up? I wonder as well if she's actually tired from the constant suckling, and therefore doesn't have the energy to effectively remove the milk.

Also, it's a bit woo, but it does help - investigate providers of paediatric cranial oesteopathy or cranial sacral therapy.

CelticPromise Thu 14-Feb-13 08:00:53

You have nothing to feel guilty about. You have done amazingly with a very tough start and some crappy support from the sound of it!

Yes get the TT checked again if you can.

Some mums can never manage to express, it doesn't mean they don't have enough milk. The fact that your baby is going to the breast is great as it will stimulate your supply, but those feeds sound too long ( although its very common for BF babies to cluster feed once in 24 hours). Is she actively feeding all that time? what happens if you put her down without a top up?

At the BF group I volunteer at we often suggest that mums who are mixed feeding and want to get back to BF gradually drop the top ups. So for example if you feel she has had an effective feed you could not top up and just feed again on demand, and cut down gradually.

I would also consider contacting your local head of infant feeding about your experience. In my area you would have been referred for TT clinic on the NHS, and no LC should be making a mum feel guilty!

CelticPromise Thu 14-Feb-13 08:02:57

Also, where are you getting your internet info? Kellymom.com is the go to site for accurate BF info. Unfortunately there is some rubbish out there.

Sorry, I just re-read and saw you didn't have much luck expressing. What pump are you using? As pp stated some people can't express. It could be the pump though!

tiktok Thu 14-Feb-13 09:46:02

Hi Peshwari, you have been through lot sad

It's horrible when you get conflicting messages from different people.

Some of what you have been told and read does not sound quite right to me.

It seems to me that even in the first week you have been given so much intervention and information, and I have never heard of this rule about qualifying for tongue tie clipping - though I know different areas have different policies.

Expressing: there is a technique and there are pumps which are better than others. Hand expressing is often effective and you can 'feel' what you are doing.

Expressing has to be done really often - minimum 8 x in 24 hrs inc at night.

Not sure who you have been speaking to - lactation consultants vary in quality and experience and some call themselves lactation consultants and they aren't (its not a protected title). It doesn't sound as though you have been in touch with breastfeeding counsellors - I am one, and we don't do medications or much diagnosis of palates and so on. Would you find it helpful to speak to someone totally new to the situation to get a refreshed 'look' at it? This might be where a breastfeeding counsellor could help.

PeshwariNaan Thu 14-Feb-13 18:16:37

Hi all, thank you for the advice. I've seen the main lactation consultant at my big research hospital in London and one privately who was really awful and had a terrible bedside manner. They are both big tongue tie experts in London and the surgery was done by Mr Patel who's meant to be very good. The BFing counsellors I saw in my first two days in hospital were lovely, but I think they just work in the maternity ward? We can't afford much after the surgery, so any private ones would have to be very cheap.

I have a manual pump that's an Avent Natural one. I've never been able to get more than 10-20 mls with it. The problem is with 3-7 hour feeds I just can't face sitting with it for 8 additional hours in my day for so little milk. It seems the milk just drops into the breast cup thing and doesn't actually get into the bottle. We can't afford a Medela double pump or anything like that, which worked great for my sister...

Baby screams with hunger after most breast feeds though it seems a bit better today? We supplemented her twice today but the rest were breast only, though she's always on the breast for at least an hour before a formula feed anyway.

I just don't know how long this will go on as I can't go anywhere or do anything as long as I'm doing these marathon feeds. Fine until 12 weeks maybe but I wish I could drop the nipple shields and nurse normally.

I've been reading the LLL forums and while I totally agree with the concept of constantly offering the breast, it just doesn't seem right for a baby to eat for 7 hours straight and my breasts can't still have milk after that, right?

Very bitter about my tongue tie experience with my hospital which is 'leading the way' identifying tongue tie but it's nearly impossible to actually get the surgery. She was diagnosed the first day and then several times again, but I was basically told that my commitment to bfing wasn't strong enough despite nearly killing myself with their prescribed programme. The consultant even agreed that it would be nearly impossible for her to suck given her mouth and tongue issues.

CelticPromise Thu 14-Feb-13 18:27:59

sad I feel angry on your behalf. Please report back on your experience if you feel you can.

Are there any local BF groups you can visit for RL support? I'm guessing you might be in South or Central London? I think you should def get someone to observe a feed. A baby can't feed too often, but if she's feeding for that long she may well not be getting effective milk transfer.

Well done for sticking with it. Sounds like you are making progress.

CelticPromise Thu 14-Feb-13 18:30:06

What happens without the shields? Have you tried using the pump to bring the nipple out and feeding without the shield?

Re expressing- some women find hand expressing more effective, don't know if you have tried that already.

You need a double pump. Can you spring to £60? You can get a spectra 3 (recommended to me on here) for £55 on amazon, and the extra breast shield to convert it to a double pump is a fiver. It is an excellent pump - as good as the hospital grade one I rented for a month. Manuals are, IME, guff.

Your experience is shocking. I'm so sad for you.

What's the reasons for the shields? Just the flat nips? Have you tried the lansinoh latch assist? Rolling your nips to make them stand before a feed? What's helped my dd has been a 'c' hold on my breast until she latches, as it gives them more tissue to grab onto

http://www.mother-2-mother.com/NippleSandwich.htm

tiktok Fri 15-Feb-13 09:21:33

Peshwari, I agree about hand expressing - worth a try.

If you are using a pump that does not even collect efficiently, then you need to change something. If you hand express you'll need to lean over a large basin to catch all the drips.

You don't need to express for hours and hours.

Continous bf for hours and hours is not normal either - shields definitely slow the whole thing down but not by that much.

If the people you saw on the maternity ward were breastfeeding counsellors (and not peer supporters) you could contact them and ask for help. Of course you can contact a peer supporter as well but your situation is probably outside their skills by now.

A fresh pair of eyes on the whole thing could be your next step.

PeshwariNaan Fri 15-Feb-13 09:58:25

Hi everyone (really sorry for not addressing you each by name but baby is literally sucking up all my time!!): thank you so much for the ideas. I agree, a fresh pair of eyes might be what's needed. I get the sense that each person thinks THEIR own experience is the solution, and I feel like I've tried so many different things!

I'll try hand expressing and I'm looking into that pump, Bunty. Thanks so much for the recommendation.

I'm scared to go without the shields - even with them I'm so, so sore. I've done sandwiching my breast (C-hold) from day one, but baby still can't find my nipple. When she does latch on directly I get the same "lipstick nipple" shape and red marks on my areola as I did at the hospital (i.e., she's slipping off and sucking the nipple only). I have just bought Latch Assist so I will try that today.

I may have spoken too soon re: yesterday's success, because we had a rough night. I breastfed her for over an hour at 1:45 and 4:30, and again this morning at 7, but she needed big formula top ups each time - every hunger sign (including screaming!) was evident even though she was super sleepy. What worries me is that I can see her getting milk, even belching tons of it up after being at the breast sometimes, but she'll still take a full bottle after an hour (or four!) on the breast. Huge appetite?

She's six weeks on Tuesday and I have a consultant appt on Monday. I'll keep going like this until then, but I'm considering my options for stopping this cycle because I don't think it's doing either of us any favours. I'm ashamed to say I resent my child every time she needs a top up, as if I haven't been good enough. I haven't been able to enjoy having a baby because of this feeding situation. It's made me feel absolutely rubbish, being poked, prodded, bullied and told how deficient my body is or that I'm not trying hard enough. On top of it all, we've paid for surgery for her and even that may not have worked! If someone could tell me it would work itself out by 8 to 12 weeks, I could stick it out, but it's so hard watching her scream after an hour (or four) at my breast. I honestly don't think it's good for her or me.

I'll try different methods of expressing, because I do think breast milk is best for her (and I'm still producing it at this point). To be honest, though, I'm even more terrified of public censure about public formula feeding. We live in a really "yummy mummy" area and people can be pretty judgey. I've been through enough already.

TheOneAndOnlyAlpha Fri 15-Feb-13 10:06:27

I had the same problems with DS though not as extreme as you, you have my sympathy.

I had terrible guilt over mix feeding, then ff at 13 wks. But my son needed feeding so I quickly got over it when he started thriving and settling. As for judgy mothers in your area, screw them. I'm not going to get into a bf vs ff argument but if ff works for you and your dc then it works. Enjoying your time with your dc and having a contented and full baby surely is the aim. But I admire you for sticking with it. Good luck.

stargirl1701 Fri 15-Feb-13 10:06:35

Hi. I had similar problems with dd which led to me getting blood poisoning through an infection entering my body at the nipple crack.

You can hire a hospital grade breast pump from the NCT. Call the helpline to get a local contact. It will really improve your pumping sessions.

Have you heard about 'Supplemental Nursing Systems'? They mean you can bf and ff at the same time so you can get more rest. I got the Medela one from Amazon and paid for next day delivery. It arrived within 24 hours.

Try hydrogel pads (kept in the freezer) to soothe any nipple pain and keep any open wounds clean.

You can wear breast shells under your your bra if your clothes are chafing on your nipples.

I can't think of anything else at the moment.

tiktok Fri 15-Feb-13 10:21:50

sad sad peshwari

Would you feel able to try biological nurturing positions with your baby (you may already have done so)? These allow the baby to self-attach...you need to be brave if your nipples are damaged though, I know sad

I do think from what you say that there has been a supply problem from the beginning but this has prob been caused by the difficulties your baby had from the start in latching and feeding effectively - when this happens, the message to 'make lots of milk' does not work.

You say in a post on another thread that lactation consultants and others have 'heaped guilt and shame onto you' - that's awful. Is there some way of complaining about this? What did they say to do this? Where would you find good support to fight these horrible feelings? Is there anyone you have come across so far that would offer good help with no added negativity?

What bottles are you using? I ask because babies are born with an inate sucking reflex - if something is in their mouth, they'll suck, hungry or not.

Normal bottles continually 'drip' milk, they don't have to work to get it. So, when you give baby a bottle, they'll suck, and it looks like they're starving, even if they're full. It might be worth trying a medela calma? They mimic breastfeeding - she'll have to latch onto the bottle, and won't get anything unless she's actively feeding.

Can someone do a weigh feed weigh protocol for you? Needs to be done in a controlled environment ie not your bathroom scales! But it might give you some peace of mind. Breastfed babies need approximately 1oz an hour. So, if she is getting 3oz from you, she should go around 3 hours between feeds.

If you are seeing lots of milk, and she's possetting it, I think there is something else going on here that's not hunger related.

Agree with fab tiktok re biological nurturing. It does take some bravery (been there, and currently with a regrown tongue tie and a milk blister I'm back there!), but the latch is honestly so much better and deeper - gravity helps, and that'll help the milk transfer.

SilverSixpence Fri 15-Feb-13 10:52:38

what a horrible time you've been having sad

My baby was born 3w ago, and had tongue tie as well. The pain was terrible and you are doing so well to keep trying after nearly 6 weeks! I had the tongue tie snipped (also privately thanks to King's policy of making you wait for 7 days before referral!) and things improved massively, so it sounds like something isn't right still. The lactation counsellor who did the procedure was Ann Dobson, I found her to be very experienced and reassuring.

Biological nurturing is good but I wasn't brave enough to do it at that stage and it still hurt terribly, but nipple shields did help me to keep going.

it sounds like you are local, if you are in Bromley they have excellent breastfeeding clinics several times a week. PM me if you need details.

FossilMum Fri 15-Feb-13 11:36:17

No helpful advice, I'm afraid, but HEAPS of sympathy. Please, please DO NOT feel guilty, inadequate or ashamed. You have been trying extremely hard in extremely trying circumstances. You are suffering pain and lack of sleep. You are wonderful and brave and an amazing mother to try so hard -- and still would be even if you gave up and swapped to entirely bottle feeding today.

Remember that any local mums or consultants who think Bfing is easy surely themselves had it loads easier than you. You are facing serious physical difficulties with your baby and yourself that they most likely did not have to deal with. Your baby needs nutrition from somewhere - but it doesn't necessarily have to be, or all be, directly from you. Yes, the extra antibodies are a bonus, but you have already given her a good headstart with what you've already done, and your health and welfare are important too. You are clearly giving and going to give her what only you can give - plenty of mother-love. That is what is going to matter most of all in her life in 1,5, 10, 20 years time.

(Speaking her as someone whose son mangled my nipples like a little vampire. I cried continuously from pain throughout 1.5hour feeds - that seemed long to me, never mind 7 hours - I eventually had thrush diagnosed after 2.5 weeks…I cried when the HV ordered my to mixed-feed at 2.5 weeks, felt inadequate, like I supposedly wasn't trying hard enough despite feeling like my boobs were on fire. I never managed to dump the nipple shields, but did keep up mixed feeding for 5 months - but we were able to alternate breast and bottle, rather than topping up, so could go out when a bottle was due. I seriously doubt I'd've managed what you're doing. DS flatly refused to continue breastfeeding after 5 months - I felt terribly rejected - but TBH, after the initial 'mourning', it was a relief. No more bleeding or blanched-white nipples (I think I also had Raynaud's of the nipple), and I didn't have to face his newly emerging teeth. Then we settled down to a decent life when we could actually go on outings and see things and have fun together. Looking back now at photos of how skinny he was at 3 weeks, and how our life improved after I got the thrush medication and started mixed feeding and then bottle feeding only, it was the right thing to do in our particular circumstances. Yes, being someone who could discreetly and happily breastfeed in public while holding a conversation with a playgroup mum would have been wonderful, but it was not to be for us. He's 5 now, and it just doesn't matter any more.

One possible help, actually - all the MWs and HVs had different advice, but one claimed that the way to avoid squashed nipples was to position the baby so the nipple was pointing to the top back of his mouth. Turned out my nipples point down and outwards, so the standard holds weren't suitable - I settled to a strange sideways hold that horrified some of the other MWs but did actually seem to help.

Good luck. Remember you are wonderful.

PeshwariNaan Tue 19-Feb-13 14:12:24

Hi everyone, thanks so much for the support and encouragement. Sorry it's been awhile, I've been trying to sort things out!

I saw my LC at the hospital yesterday and she set me up with a supplemental nursing system to 'speed up feeds'. To be honest I don't see how putting surgical tape and a pipe system to my breast is going to simplify feeding or make life more manageable especially during night feeds... This sort of thing makes me want to bottle feed!

Oh and tt has healed perfectly. My LC suggested tongue exercises for her. She says some women always have to use nipple shields and not to worry about it. Wish I could latch her on to my breast but at least she's getting milk directly with the shields.

She suggested I go along to some BFing cafes in the area but I'm not sure when I'll have the time. It takes ages to get out of the house not to mention the problems of showering and dressing. Maybe if things get better I can try this.

I purchased the Spectra 3, received it yesterday and it's much better than my manual pump! I managed 4 oz in three sessions, enough for most of a night feed. Even though I feel like this leaves less time in the day, at least I can give baby more breast milk at night. So my pattern during the day is feed baby at breast for however long she stays on, ff if she wants it, pump for 15-20 mins, start over.

I still don't know what I'm doing and life hasn't got easier. It's a beautiful day today and we're stuck inside pumping/ ff/ bfing. I want to be in the park with her or at least visit family. Is this going to get better? Will I ever be able to breast feed exclusively?

Anyway, I've taken some of the excellent advice on here and hope we can muddle through for another month or two somehow. She's 6 wks today.

CelticPromise Tue 19-Feb-13 16:33:38

I'm sorry you're still having a tough time Peshwari. I think the logic behind the supplemental feeding system is that the baby gets milk at the breast, even if it's formula, so they associate it with full tummy and get all the other BF benefits, but it sounds like a huge faff. If it's not working for you don't worry about it.

Sounds like you are on a tough schedule. Does she ever latch and feed well? Would you be confident to not top up after a good breastfeed? Gradual reduction in the top ups could get you back to breast only.

Re. BF cafes, I volunteer at a BF drop in in my area, and you can get one to one support there, have feeds observed by BF counsellors etc. So I think it would be a really great place to go for ongoing support, and don't worry about showering or dressing up or anything! Do you have a community helpline in your area? Ours offers home visits that might be an option for you. I don't think there are quick fixes for you, but ongoing support can be very helpful.

One feed at a time! Best wishesthanks

PeshwariNaan Thu 21-Feb-13 20:14:28

Hi Celtic - thank you! I just can't picture myself taping an SNS to my breast in the middle of the night - 3 hour feeds are hard enough.

Baby is still not happy with whatever I'm producing, all the hunger cues are there after every single feed, no matter how long the feed or how frequent. She could be on there every hour of the day solidly and never be full. I'm very disheartened by it all and the fact that I've been working so hard on this 24 hours a day for 6 weeks and I'm still unable to leave the house or have visitors is really depressing me.

I will try looking up helplines, but I feel my baby and I are one of those pairings this just doesn't work for. Sad, but maybe I need to face reality.

The health visitor actually told me today to stop breastfeeding, that I'm too stressed about it. I told her I wanted to go for two more weeks and re-assess, and she strongly suggested I stop now (cutting feeds down). Just one more example of the totally conflicting advice I've been given from every person I talk to. She said she couldn't breastfeed her first but breastfed her second for two years - that it just depends on the baby.

Anyway, thanks everyone for your advice & support, not sure how I'll end up but I'll try to go until she's 8 weeks at least. This is the most confusing situation!

CelticPromise Thu 21-Feb-13 21:11:35

Oh Peshwari. I'm sorry things aren't getting easier for you. I hope you can make a choice you and baby are happy with, whichever way you go.

I've used NCT helpline in the past. I know that in some circumstances they can refer if necessary to a breastfeeding counsellor who will visit you at home. In my area community helpline can also arrange for a peer supporter to visit at home. Sounds like you could benefit from having someone knowledgeable observe a whole feed. You're not in NW London are you??

Have you tried breast compression when feeding? Do you offer both breasts each feed, and go back to the first if necessary? I'm sure you try all this just thinking of ideas. It sounds as though your baby might not be feeding effectively.

I like your idea of a short term target. One feed at a time. Do whatever feels right for you both.

cierzo Sat 02-Mar-13 21:52:03

My baby was born on the 31st and diagnose a few hrs after been born with tongue tie. So far, so good, you will think, but they didn't explain what repercussions we may find. If I had known, I don't leave the hospital until he had the snip done. We were lucky to get an app for this 3 weeks later, but by that point it was very late for my baby to go back into bf. It was horrible to see him frustrated and upset, making me upset and bad about myself.

I contacted the LLL but frankly getting a hospital grade pump and being expressing 8 hrs a day plus trying to put him on the breast with all the screaming and upsetting was far to much for me. Also my milk production was so minimal with my Spectra 3 pump, not even reaching 1ml, than when my baby managed to latch was not enough for him, he is a big boy. So I actally felt realive when I dediced to give up.

Good luck with all, but I do recommend you to get the tongue tie check out properly. All the best whatever you decide do, but never, never beat yourself up, you're done a great job considering the circunstances and whoever says different is an idiot.

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