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Thread: NICU + Oversupply + Tongue Tie + Birth Defect

  1. #1
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    Default NICU + Oversupply + Tongue Tie + Birth Defect

    Hello- I'm in a pretty weird situation and looking for help. There's so much going on here I'm not even sure what the problem is anymore. I'm sorry this is so long.

    I BF my DD until she was 2.5 years old. She had a tongue and lip tie that wasn't discovered until she was 4 month old because I had versupply, and she did a pretty good job of nursing despite it. I had no pain, so we kind of just did the lasering in case because the lactation consultant said it could cause problems later on.

    I just had my son in August, so he's 12 weeks old. I put him to breast for the first 9 hours as often as possible. But 9 hours after he was born they discovered he had an imperforate anus. He had surgery at 2 days old and was in NICU and unable to eat anything by mouth the afternoon it was discovered (Wednesday) until I was allowed to start nursing him on Sunday. I'd been pumping every 3 hours around the clock since Wednesday afternoon and was up to 30 ounces a day before he had his first real nursing session.

    I had checked for the tongue tie as soon as he was born, and knew it and the lip tie were there and needed to be revised. We confirmed with the LC, who measured him taking 4 oz at 8 days old and said he had a weak suck but it was ok pre-revision because he wasn't having to work for anything due to my forceful letdown/oversupply.

    At 10 days old we took him in to have it lasered, this time by a different dentist than the one who did my daughter's, but one who was trained by him so we were told it would be exactly the same. The stretching exercises given to us this time were vastly different. For my daughter, we just rubbed the incision and lifted her tongue 4-5X a day for two weeks, and it healed beautifully. This dentist had us aggressively almost gouge the wound with a really hard J stroke 8x a day every day around the clock and then lift with both fingers. I did it exactly as she said. But at our one week follow up she said the wound was two tight and broke it back open. When she had us come back at 3 weeks for what should have been our final appointment, she said that the frenulum had not regrown, but that there was scar tissue that was tight and he didn't have full lift of his tongue. The lactation consultant told me the same thing, and said that scar tissue could be stretched, but we had to keep doing the stretches 6x a day.

    So we did for 5 more weeks (til he was 8 weeks old). I was also taking him to CST therapy. We finally went to see the original dentist because and he said that he'd gotten a huge opening from the original revision, and though it hadn't healed perfectly it wasn't awful. But he was horrified at how often and how strongly we had been stretching him and said that the wound looked like it was a week old and we had to get out of the poor kid's mouth because all of the stretching was probably what had caused the scarring. He felt like he had enough lift to make it work, and said he would figure out how to work for the milk when my supply settled, but if he started having trouble to come back and he could laser off the scar tissue and see if that would help.

    So we tapered the stretches off over the next month, going from 4x a day to 3,2,1 each week. We just did the last stretch on Sunday night. I didn't work on any suck training during this time to give him a break and try to avoid an oral aversion.

    He is in Occupational Therapy every week to work on his range of motion and his gag reflex, as he doesn't like anything further back in his mouth, though I'm not really having any pain nursing yet. He has great lateralization and can stick his tongue out past his bottom lip. When I was stretching his tongue, I could pull it back to touch the roof of his mouth, and after the stretches it always came up noticeably higher when he cried for a few minutes. But after that he wouldn't lift it much when he cried until the next night's stretches.

    We've seen the lactation consultant 3x- each time she tells me he's doing okay because of my let down and that he'll figure it out when my supply drops off. He's clicking some when he nurses, which she claims is him trying to handle my fast flow, but I've also heard him click a few times taking a bottle and at times when I've just pumped so my breasts are pretty empty so I'm doubtful.

    She worked with me on getting him to have a little bit deeper latch at the last appointment, though it's not super deep. He can flange his lips out if I do the flipple, but he'll try to curl them back down if he can.

    We do not want to put him through the lasering again with how badly it went the last time unless we absolutely have to and the LC told me the thinks he has "inherent scar tissue forming issues" and that the same thing might happen again if we redo it.

    In the past week my supply has started to regulate some and he's spending more and more time on the boob at night- when it's pretty empty he sucks and then tugs back and comes off, then goes right back on, rinse repeat for like 20 minutes. He's not crying like he's hungry yet but I fear that's coming if my supply keeps dropping.

    I feed him right before we drop off at daycare at 8:30, then at 10:30 I pump around 18 oz, then get 6 oz at 1:30 and another 6 oz at 4:30. I nurse him on demand at home all night and then pump one more time at 10 when he's gone to sleep and get 4-5 oz. We cosleep so he nurses lying down with me every 2-3 hours at night (whenever he wants to).

    I know I'm still at oversupply, but I'm freaking out about what to do when my supply goes to a more normal level because the LC said so many times he was living off my letdown and had a bad suck. With my daughter, I got so terrified that I took domperidone and pumped every 2 hours at work to keep my supply super high. I was hoping to not do that this time, but I'm so close to trying.

    And the final thing that's not really related- because of my son's condition, he is going to be prone to severe constipation and our surgeon has emphasized that breast milk is wonderful for IA kids because it's a natural laxative. So there is so much pressure on me to make this work.

    So I think this is the whole messy list of stuff going on:

    1) He never had to really work to get milk since the first time he really nursed I was already making full supply

    2) His tongue may or may not have enough lift? I can put my finger under his tongue where the scar tissue was and it feels softer and I've seen him lift his tongue up on occasion but I don't know.

    3) He doesn't like anything further back in his mouth and possibly has a weak suck- we're doing the pinkie suck training and he gags at first, but if I just go really slowly he'll let me put it all the way back in his mouth and he CAN do a good suck. It's just like I have to work him up to it.

    I've never had to break a latch on him once- he just kind of slides off if I pull back though he will try to suck it back in. But it's not really translating on the breast I don't think because of my let down? Even if I have him latched on further back, as soon as I let down he pulls more shallow. I have no idea if his tongue is making the right motion or not- I feel like it he was gumming or thrusting I would be in pain?

    He takes a paci when he's away from me at daycare- they said he tries to push it out at first and he'll suck on it after that, but within a few minutes he pushes it out again. So I don't know if he's just not maintaining the sucking motion or what?

    My worry is that he's not learning with my supply regulating as he only seems to really swallow and try when my let down happens. He doesn't really work for any milk after that. I know he may not be hungry for more, but since my supply is dropping I'm worried it's going to keep dwindling due to him not being able to extract the hindmilk after let down and then he'll not stay on his curve (especially bc he's in the 78% due to my oversupply).

    I also worry I didn't get enough prolactin receptors laid down in the first 6 weeks due to my oversupply and his weak suck, as the LC said I probably wasn't getting too much stimulation. I pumped twice a day the first 11 weeks for like 10-15 minutes each but that's it, so I don't know how much that would have help. When I asked about this she just kind of shrugged.

    At our last appointment with the LC a month ago, she said he'd get the hang of it when my supply regulated. But when I spoke to her last night to set up an appt to see where his tongue ended up after we quit the stretches and asked again she said "Some TT babies can get it figured out eventually. There is no time line though and there are many variables. We can do a weighed feed when your supply is lower so maybe I can get a good luck at function when he's not drowning".

    It seems like the LC is walking back her initial "He'll figure it out" statement. She kept telling me to let my supply regulate some so that he could practice, which I've done, but now she's saying only "some TT babies can get it figure out eventually". That's far from the "He'll figure it out" she was telling me before. We have an appointment Monday evening to see her, but I think this will probably be the last time.

    I know there's no one else on here that's had this situation, but has anyone had the tongue tie not heal exactly right and still been ok? Or had to deal with a weaker suck due to quick oversupply after birth and had it turn out okay? I'm just not sure what else to do and I think my LC hates me at this point for freaking out over this so much, but her group has a lock on our market so there's not really anywhere else I can go.

    Thank you.

  2. #2
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    Default Re: NICU + Oversupply + Tongue Tie + Birth Defect

    Hi. Sorry you are having these concerns, you have certainly had a time of it! I just have a few questions and also some thoughts, please let me know where I have anything wrong or you have a continuing concern.
    I feed him right before we drop off at daycare at 8:30, then at 10:30 I pump around 18 oz, then get 6 oz at 1:30 and another 6 oz at 4:30.
    18 ounces? Or is that a typo?

    1) He never had to really work to get milk since the first time he really nursed I was already making full supply
    Ok, but OP is a very common occurrence in the early weeks/months and does not necessarily mean baby will have any trouble when they do need to "work hard." Also they never really have to work hard. Nursing is actually pretty easy.

    2) His tongue may or may not have enough lift? I can put my finger under his tongue where the scar tissue was and it feels softer and I've seen him lift his tongue up on occasion but I don't know.
    What is "enough?" I am pretty certain this has never studied/quantified. A baby who can get enough milk out of the breast without hurting mom has enough - everything.

    3) He doesn't like anything further back in his mouth and possibly has a weak suck- we're doing the pinkie suck training and he gags at first, but if I just go really slowly he'll let me put it all the way back in his mouth and he CAN do a good suck. It's just like I have to work him up to it.
    Why should he want anything further back in his mouth? A pinkie is not exactly like a nipple, as a pinky has bones (eventually cannot be compressed any further) and a nipple can be compressed a great deal. So, it makes sense that a pinkie might be more likely to gag baby than a nipple. How far back does your nipple need to be? This is not quantified. A baby who can get enough milk out of the breast to grow normally without hurting mom is taking enough of the nipple into his mouth. And what is a weak suck? Not anything that has been quantified. A baby who can get enough milk out of the breast without hurting mom has a strong enough suck.

    My worry is that he's not learning with my supply regulating as he only seems to really swallow and try when my let down happens. He doesn't really work for any milk after that. I know he may not be hungry for more, but since my supply is dropping I'm worried it's going to keep dwindling due to him not being able to extract the hindmilk after let down and then he'll not stay on his curve (especially bc he's in the 78% due to my oversupply).
    Ok first off, there is absolutely NO reason your baby needs to stay on a 78% growth curve. Most babies whose mom had OP grow faster at first and slower later- meaning they go down on the growth curve eventually. It is entirely normal for this to happen. Anyone who is telling you that a baby needs to stay at the same % to be healthy does not understand growth charts.

    Yes a baby who is getting plenty of milk is not going to work hard for more. Again, this is normal and not usually a problem. Normally, nursing is not really hard work- ever.
    Why should your baby extract more milk than he needs? No baby does this. (Well, some do, and then they spit up.) If you are concerned about your production, you can pump after baby nurses, but that would be a huge pain in the rear and also probably entirely unnecessary. Another option would be to encourage baby to nurse more often. This never hurts and might help but again, I am not saying this is required.

    Pacifiers are convenience tools for caregivers, not a measure of how well a baby can suck. Many babies who nurse perfectly well have little to no interest in sucking on a pacifier and will push it out. (assuming they let it into their mouth in the first place.) There is evidence that pacifier overuse causes breastfeeding problems, including poor suck and breast refusal, and only in rare specific situations that are different than your situation might they be used to assist breastfeeding. In other words, no need for your baby to take a pacifier. I would suggest talk to your baby's caregivers about what other comforting methods they might try other than a pacifier.

    I also worry I didn't get enough prolactin receptors laid down in the first 6 weeks due to my oversupply and his weak suck, as the LC said I probably wasn't getting too much stimulation. I pumped twice a day the first 11 weeks for like 10-15 minutes each but that's it, so I don't know how much that would have help. When I asked about this she just kind of shrugged.
    I have no idea what this is about. Milk production depends entirely on having enough milk removal frequently enough to tell the body there is a live baby who needs milk. You have and continue to have OP. This would indicate you had all the stimulation you needed and then some.

    I disagree your LC is walking back on anything and I very much doubt she hates you! But maybe she is wondering what else she can do for you at this point. Unless I am totally misunderstanding something, your baby is 3 months old and despite a really rough time with his tongue tie (mis?)treatment, on top of other health issues, he is currently entirely breastfed except when you are at work and gaining very well! In other words this sounds like an amazing breastfeeding success story to me. I am not sure what else your baby needs to figure out. However, if your instinct is telling you there is an ongoing or looming issue that is not being addressed, please let me know and we can definitely talk it through more, also, maybe you can see a different LC via Skype?
    Last edited by @llli*maddieb; November 9th, 2017 at 09:26 PM.

  3. #3
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    Default Re: NICU + Oversupply + Tongue Tie + Birth Defect

    Hello-

    Thank you so much for the reply!!

    I could basically answer any of your "why are you worried about this" questions with "Because the LC has said he's doing it wrong" :/ Most of my fear is just coming from the stuff she's said, not any internal feeling of my own. She sends me a sheet after every meeting that assesses everything (suck, palette shape, gag reflex, how my nipple looks after coming out, etc) and it's basically just a list of stuff that he doesn't do perfectly and totally psyches me out every time :/


    18 ounces isn't a typo I still get a ton on my first pump of the morning. So yes, I'm still overproducing- mostly because the LC has told me over and over he's "living off my letdown" and I'm terrified he won't be able to figure it out if it dies down. She's just told me so many times that he has a weak suck and his tongue didn't heal optimally that I'm terrified he won't be able to feed effectively without it. In all honesty, at his OT today, he took her finger and sucked perfectly on it and she said she has no idea why the LC thinks he has a weak suck. I'm wondering if part of her saying that is because he was so upset with anything being in his mouth that he'd immediately push her finger out because he was so angry from all the stretching. So OT thinks he looks great?

    The "enough" lift is just coming from the LC. I thought it seemed okay until she said it was too tight and he didn't have enough lift and suggested we continue the aggressive stretching of the scar tissue to try and make it better. Same for my concern about the prolactin receptors- she told me I hadn't been getting much stimulation because he had a weak suck, and I knew frequent stimulation was important for them. But if I'm okay then I won't worry about that.

    I didn't know that about pacifiers! I'd seen the videos of sucking exercises where they encourage the baby to suck and then tug it a little to get them to pull it back in to correct a weak suck. So that's why he has them at daycare. Also because I nurse him to sleep and created a little monster so he was having trouble going down for his naps without it. There's no paci at home at all.

    I guess I'll try and just let him do his thing and see how he does? I'm thinking of cancelling my Monday appointment with her since it always seems to involve hearing everything he's not doing perfectly and stresses me out. If OT seems happy maybe that's enough?

    Again, thank you so much for talking me down. There is just so much pressure on me to make this work for his IA and with a 3 year old at home and working full time I'm kind of at my limit...

  4. #4
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    Default Re: NICU + Oversupply + Tongue Tie + Birth Defect

    I could basically answer any of your "why are you worried about this" questions with "Because the LC has said he's doing it wrong" :/ Most of my fear is just coming from the stuff she's said, not any internal feeling of my own. She sends me a sheet after every meeting that assesses everything (suck, palette shape, gag reflex, how my nipple looks after coming out, etc) and it's basically just a list of stuff that he doesn't do perfectly and totally psyches me out every time :/
    wow, ok, so that makes sense. Because the whole time I was reading your story, I thought "this sounds like this mom has way more information than she needs, and it is causing her to panic."

    Breastfeeding is really not all that complicated, and frankly we (meaning breastfeeding helpers including LLL Leaders and IBCLCs) can screw up moms by offering WAY more info than that particular mom needs. With my kids, I have seen professionally four different LCs for pretty severe breastfeeding problems- and I never got anything like the sheet you are describing assessing every bit of minutia about how baby nurses! That just sounds confusing and likely to increase your concerns, rather than reassuring. I think those sheets may be designed for communicating with other LCs about a case...I cannot see how else something like that would be useful. What you could expect to get from the LC is a written out plan of action to do at home for whatever the issue is that you are having...assuming there IS an issue.

    18 ounces isn't a typo I still get a ton on my first pump of the morning. So yes, I'm still overproducing- .
    Honey, that is not just overproducing. That indicates EXTEME hyperlactation and also indicates a very high breast storage capacity. 18 ounces is more than half what a baby needs in a day! With this much milk production, it may be that the sucking or latch issues you or LC are seeing are at least in part because all of his attention is on controlling (slowing down) the flow!

    Here is what I suggest. Start to reduce how often you pump- you probably want to so gradually so as not to get engorged. Probably you want to gradually reduce your pumping to the point you only need to pump when you are at work, about once every 3 hours. (although exact optimal frequency will vary.) Also reduce how MUCH you pump at a time. Your baby would never take 18 ounces out of your breasts in one sitting so there is no need to remove that much milk when you pump. You are probably pumping until you are "empty" or close? That is a milk production increasing technique, so if a mom is already overproducing, it will cause her to make more and more milk! It is not how babies normally nurse. Babies take what they need- they do not care whether the breast is "empty" or not! It is perfectly fine to leave some milk in the breasts when pumping, and doing so will tell your body to cool it on that production. At this point, you could reduce your production quite a bit and still be overproducing. But if you can get your production down to a manageable amount, baby may have a chance to learn how to nurse better (assuming he needs to, which I am not sure about anyway.)

    At the same time, encouraging frequent nursing is very helpful when a mom overproduces. Because the longer milk sits in the breasts the faster the flow, so the shorter milk sits in the breasts, the less the flow. Nursing more frequently and letting baby take as much as baby wants will help stabilize milk production. Pumping extra or "emptying" the breasts with the pump will act to increase it.

    mostly because the LC has told me over and over he's "living off my letdown" and I'm terrified he won't be able to figure it out if it dies down
    But the LC is also telling you that you need to reduce your production, right? So there seems to be a miscommunication there.

    Milk production can be reduced or increased at any time. Yes, of course it is usually much harder to increase production than to reduce it- but when a mom has already shown she is prone not only to normal but over production, and also milk production is firmly established (baby is older than about 6 weeks and mom makes enough) then mom is very likely to be able to raise milk production at least some degree later if needed. In other words, reducing your production by pumping less and less often will take a little time, and if needed, you can stop doing that at any time if a problem is arising. If needed, you can add more pumping into the scenario if you actually needed to re-increase production. But at this point, you really have no idea if baby can nurse normally or not and won't until you at least get production down to a closer to normal level.

    Obviously I cannot guarantee anything, but my suspicion is that baby will figure it out as your production and flow naturally reduces, because actually, handling a fast flow as well as your baby does takes a good latch and a baby who can organize their suck patterns very well. When a baby whose mom is way overproducing like this cannot latch or suck normally, they often begin to refuse to nurse or have really hard time with choking at the breast, because they are so upset and frustrated by the flow.

    The "enough" lift is just coming from the LC. I thought it seemed okay until she said it was too tight and he didn't have enough lift and suggested we continue the aggressive stretching of the scar tissue to try and make it better.
    Here is the thing about tongue tie treatment as regards breastfeeding, including exercises. Aside from the fact that tongue tie is real, and the fact that tongue tie SOMETIMES (but not always) interferes with a baby being able to nurse normally, and that sometimes (but not always) frenectomy helps the previously tongue tied baby nurse better- aside from that, pretty much nothing else about tongue tie and breastfeeding is well proven or certain. Not diagnostic tools, not treatment options (laser v. scalpel) and not exercises. In other words you are going to get a different recommendation about tongue tie from just about every practitioner. So I have no idea if your baby ever needed tongue tie treatment, any of the re-treatments, or whether the exercises are helping or hurting or neutral. I would suggest that oral aversion is real, and messing about with a baby's mouth too much could cause a problem there. Luckily it does not sound like your baby is having any issues with that, at least not at this point.

    Same for my concern about the prolactin receptors- she told me I hadn't been getting much stimulation because he had a weak suck, and I knew frequent stimulation was important for them. But if I'm okay then I won't worry about that.
    yeah, take that off your list of worries. Absolutely. This is info that has no application in your situation.

    So that's why he has them at daycare.
    Unless his caregivers are also physical therapists trained in promoting sucking, this is not why he is getting them at daycare. The sucking exercises you are seeing may or may not apply, I tend to think not, but in any case they would have to be exercises purposefully done by someone who knows what they are doing. If they need him to take a paci for naps, then that is why they are giving him a paci. If that is the only time and it is working, it is probably fine, however there are other ways to comfort a baby to sleep.

    Also because I nurse him to sleep and created a little monster so he was having trouble going down for his naps without it. There's no paci at home at all.
    Nursing to sleep is normal and all babies are born wanting - actually needing, to nurse to sleep. So no, you did not create this biologically normal and instinctual behavior. Encouraging a baby to nurse to sleep and to otherwise nurse for comfort helps ensure a normal and long nursing relationship. Preventing a baby from doing this is likely to shorten the breastfeeding relationship.

    As far as seeing LC again- your LC is a professional and she has actually seen you and your baby. I am not a professional and I have not. So she is way more practiced and familiar with your situation than I am. I do not know if you need to see her again or not, but if you do, I think it is fine to ask her about your concerns, explain to her you feel more worried after seeing her, and see if perhaps there has simply been some miscommunication. I think there may be some misunderstandings going on.

    Of course you are overwhelmed. I have had a baby plus a little one, I have had really severe breastfeeding problems. But I have never had a baby who required surgery and hospitalization on top of that! I cannot imagine. You sound like a super mom, but stop trying to be SUPERMOM - no one can be that. Know what I mean? Take the pressure off yourself, I think you are doing awesome.
    Last edited by @llli*maddieb; November 10th, 2017 at 04:26 PM.

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