What I wish someone had told me before revision...

🌟For parents who haven't gone through a revison yet and are debating- I will say to you what I wish someone had said to me: ♡
- It is normal to have fear. Fear of your baby being in pain. Fear of the stretches. Fear of a bad outcome. Fear of the financial cost. Fear of an invasive procedure being done by a dentist. Fear of not being allowed in the room during the procedure. Fear of feeding problems not resolving. And other fears... Know that these are normal and reflect that you are a caring parent. But they are not reasons to not revise! Listen to the countless reasons TO revise. Listen to the many many many success stories.
- Not all providers are equal. Not even all so called "perferred providers". Do lots of research. Ask around. Ask tongue tie savvy IBCLCs in your area who they recommend. They see the results - good and bad. Travel if necessary. Pay out of pocket if necessary. Use Care Credit if necessary. Seeing a true expert with a high skill level makes ALL the difference! (My little one saw 3 providers. Two were "preferred", but only one was a true expert.).
-You are giving your child the gift of normal anatomy and function of the tongue and lip. Never lose sight of this. The post revision care is no joke. It is hard. It is gut wrenching to stretch a sore mouth and hear your baby cry.  It is arduous. Days can feel quite long. But, it is all so worth it. That first amazing deep latch feels like heaven. Watching your baby use their tongue in new ways is as thrilling if not more then watching their first steps.
- There is so much misinformation and incomplete information out there about tongue ties. You as a parent will have to shoulder the burden of knowledge. Read. Research. Read. The files section in here is great. Look at the infographics in this group. Read Dr. Kotlow and Dr. Ghaheri's facebook pages and websites. Search for them on youtube. Know as much as you can and then read even more. Seriously! But don't let this overwhelm you. Seek out tongue tie experts to get the support that you need. Ask lots of questions when you see the provider and ask how you can best reach them after the procedure. The great providers will make themselves very available though text and/or email.
-It is not always straight forward. You will likely need to work with a chiropractor, a cranial sacral therapist, a speech language pathologist who specializes in infant feeding and a lactation consultant. The support and expertise that these providers offer can make a huge difference!
Don't give up. 😊 Don't give up! 💗
- Margot L.

"Now I'm a believer!"

Prior to my daughters revision, I would see posts and memes about how the tongue is connected to a lot of other muscles and effects more in the body than the mouth. I had never heard of that before and was skeptical.

Now I'm a believer. My daughter is 11 months old and has been army-style scooting for almost 4 months very asymmetrically, only using her right leg to move and keeping her left leg straight. She was unable to stay on hands and knees at all and couldn't sit on her knees at a table toy. She has been in PT since 5 months old. 2 days after revision she got on hands and knees and after one CST session we have a crawling baby!! 😍😍

There is no doubt in my mind that revision and CST fixed an imbalance within her body that was restricting her movement. Her ability to move is night and day. She is pulling up on the couch into knees and standing, crawling (fast!). I am SO HAPPY!!

~ Megan Sheeley

"3 weeks out from revision and tonsils are almost completely normal!"

I started down this rabbit hole over the summer of 2016. My youngest was 2. Had been in speech therapy starting at 22 months (give or take). He was literally non-verbal. By age 2, he maybe had 5-10 words and you couldn't understand any of them. He was horribly tied.  6 months of speech therapy had not improved his understandability. He was revised at 2 years 4 months and immediately starting talking and frankly, hasn't shut up since.   He just turned 3 and is almost completely caught up with his speech.  Unfortunately, he does have some minor posterior reattachment and we will have to have him revised again - stretches were very very hard at this age.

After his experience, I started researching ties in my older son who's 6 (and even in myself). My oldest saw two preferred providers - one said he wasn't tied. The other said he was tied, but no reason to revise it as there were no speech issues. That was August 2016.  In December 2016, his tonsils blew up. He hadn't been sick, so we didn't know they were swollen.  They were swollen for 4 months. Took him to a different preferred provider and sure enough, he was tied and he offered to perform the procedure using Versed.  Current date 4/17 - he's 3 weeks out from his revision and his tonsils are almost completely normal. (He had ear tubes and adenoid removed at age 3 - way beyond normal age for those - and I wish I'd started with his tongue. But I didn't know what I didn't know).

Me - I am 43. I am 4 weeks out from revision. I have had immense success. I was horribly symptomatic, but didn't have speech issues. My TMJ is almost completely gone. No popping, clicking in my jaw. I still clench a little at night - but that's stress for me also. Headaches gone. Forward head tilt gone. My shoulders were always drawn forward - I compare it to the posture of constantly carrying a child - my shoulders are now back and I have perfect posture.  So don't think you are too old!! It's beneficial for adults also!

~ Kim Berbel

There is light at the end of the tunnel!

I wanted to post our positive story of revision for those of you who are going through it right now!

When my son was born I right away noticed that his chin was recessed. Several people who came in during our hospital stay told me it was normal and not to worry. My son also had a very shallow latch. It didn't hurt me, and I had nursed my oldest until she was 2, so I figured I'd be able to trouble shoot his latch on my own. Because of that, when LC nurse came into our room I chatted with her but told her we were doing great and didn't need any nursing support.

My son was crazy gassy as a baby. He spit up all the time, and as he nursed I could literally feel bubbles in his tummy. As a result he was really fussy and a terrible sleeper. I was using a lot of gas drops and they weren't helping, so I knew something else was wrong. I had heard of tongue ties in my local LLL page so I called the preferred provider in our area for an assessment. Sure enough at 5 weeks we found a PTT and ULT. His latch was so bad that he was gulping air while he nursed. He was in the 95% for weight though which confused me, because I thought he would be having trouble gaining weight. The provider told me that because I had a fast flow he had figured out how to get enough milk even with his inefficient latch.

Right after his ties were lasered he nursed better, still very narrow, but better. His reflux symptoms completely went away. I hated doing the stretches, but I was diligent in doing them as the dentist had told us to. There were a lot of ups and downs the first 8 weeks after revision and there were days I regretted doing it too.

I also had to go see another LC because his latch was still shallow compared to what they say a latch should look like. I spent a hour with a LC who watched him nurse. I had no pain, and his latch was good, just a little more shallow than the "textbook" latch. She told me as long as he wasn't in pain and I wasn't in pain that I didn't need to worry about getting his latch to look like what everyone else was saying it should look like. Today he is 15 months old, still 95% for weight and is still nursing!

So this was a long story, but I remember how stressful our revision was and I just want everyone who is going through this now to know there is light at the end of the tunnel!

- Emily Jaramillo

Improvements even with a partial revision!!

I know some have asked if correcting a tie will bring the lower jaw forward. I think the general consensus from practitioners is that it may. The reason I have asked in the past is that I have a child with Pierre Robin Sequence (PRS). He was born with severe retrognathia in which his chin was virtually nonexistent at birth. Despite doing an incomplete revision due to my son's anxiety kicking in and he clamping his jaw down so the provider could not complete the revision we have had phenomenal results.

Before photo February 22, After March 9. Revision done March 1st.

This is my "classic" PRS son (5) we have tried to be minimally surgically invasive. He hasn't had a Jaw Distraction (JD) despite it being recommended. He hasn't had ear tubes despite it being recommended for constant fluid and was a minimally invasive procedure. We did Craniosacral Therapy (CST) to naturally relax the fascia and muscles along the sides of the mandable and under the jaw at the hyoid to avoid both of the two previous mentioned procedures with great success.

We have been wanting to get his posterior tongue tie corrected despite requesting it be corrected at time of palate repair. His first team said he was not tied. His second team said he was "mildly" tied. This past week we took him to get the tie corrected by a knowledgeable posterior tongue tie practitioner. The tie was not "mild" as his team had suggested it was about as severe as they come. He had no ability to elevate any portion of his tongue and the tip was actually curled under. He also had no lateral movement of his tongue.

We had talked with him, he said he was ready and was asking how soon we could get it fixed. However, once we arrived and got in the room he didn't like the sensation of the topical numbing medication that he knew they were going to use and started to panic. He didn't like the pressure of the spatula used to hold his tongue up in order to do the procedure. He did allow the practitioner to partially do the revision, but it was incomplete.

Despite an incomplete revision we have seen phenomenal improvement in speech, eating, breathing, suction, and reduction in pain. He has come to us at different times to tell us how each of these things are easier and don't hurt him as much. We feel that his jaw has also come forward as well, but I haven't taken pictures yet to compare. He sounds much less nasal than he did a week ago. He is not enjoying the wound care stretches that are required to be done after this type of revision. But as much as he hates them and fights them he reminds me to do them because it's easier for him to talk after I do them, which he has been saying "now I can talk again". He never complained of pain or difficulty while doing anything he is now saying is easier or less painful. He didn't know because that's just the way it had always been.

Last night at church his teacher of 6 months remarked that she could actually understand him for the first time. To me, this was huge because his speech has been 10% intelligible to most people. Closer to 30% after frequent interaction with him. I didn't hear any of the children say "what?" when he spoke to them and he was able to converse with him much easier!

His revision was not completed because he didn't allow the practitioner to finish. He still has no elevation at the tip of his tongue, but it's also not curled under at this point. He does have about a 30% improvement in lateral movement and just that small movement ability has improved his speech tremendously.

His team had wanted to do a Furlow Palatoplasty or Z-plasty to improve his speech because it had become more nasal. However, we once again chose an alternative route with amazing success despite only completing about 10-15% of the procedure. The healing time is about the same as the z-plasty of 4-weeks. There are absolutely no food texture restrictions and he was eating normally minutes after the procedure. The hardest part is the wound care stretches every 3-4 hours through the day/night.

Disclaimer: If you have chosen to do any of the procedures we declined to do, this is not a post saying you should not have done them or they weren't the correct decision for your child. I'm stating we didn't do these procedures for background purposes for my particular child so you have the whole picture of what we have and haven't done. I have also found that most teams are not open to revising tongue ties, especially posterior ones due to possible occlusion of the airway. We too have been repeatedly told this same theory, however it has not been the case for our son, nor our non-cleft affected ultra mild PRS daughter whom we revised her anterior tongue tie at 3 days old and her posterior tongue tie at 3 months with one of the experts in posterior tongue tie Dr. Bobby Ghaheri, ENT in Portland, Oregon (www.drghaheri.com)

This post is for alternative treatments not suggested or supported by our team that we have had phenomenal results from and that we have submitted to our team who begrudgingly acknowledged they "may" have had a positive influence on his improvements.

Tips for a toddler going through revision

Basically, we watched a couple of Daniel Tiger Episodes where he goes to the doctor the day before. I told her that the doctor was going to look at her lip and tongue, and try to help her be able to eat  better and speak more clearly. When we got there, I said, "This is where the doctor will look at your tongue." Then, when we got into the room I told her that she would sit in the chair, and the doctor would look at her tongue. Then there would be an owie, but the owie, would be fast and I would be right there. I told her she would have a popsicle when it was done. She noticed the laser in the corner, and I took her to look at it and said the doctor would use it on her tongue. I sat at her feet and patted her legs while I held them still. When she started to say "Owie" and cry I said, "Yes, it's Owie, but I'm right here and it will be done soon and you will have a popsicle."  I started to sing her the ABC's, but then decided she might hate them forever, so I just started singing, "It will be all done in just a minute. You're so brave and it's almost done." It only took 2 or 3 minutes, that of course seem a lot longer when she's screaming, but when it was done. She just sat up, and hugged me really tight. I asked if she wanted a popsicle and she wiped her tears and said yes. After she got it, she hopped off the chair and followed the nurse to the treasure chest to pick out a toy. She fell asleep in the car after a second popsicle and slept two hours. She woke up crying and pointing at her mouth, so I gave her another popsicle and she calmed down. I dosed with ibuprofen as soon as we were leaving the office and every 6 hours since. She is a little sore and tells me when it hurts, but over all doing really well. She hates the stretches, of course, but is figuring out that if we just do them quickly it goes faster, and she is done. She has already said like 10 new words today, clearly, and can eat better. She also has much improved movement of her tongue.
~ Kara Hernandez-Darling

Should I stay in the room when my baby is having a revision?

Will you, the young mothers of babies about to have their TT, LT, etc., revised, please consider some advice from someone that has been around dental offices since long before you were born?
Please, Do NOT go in and watch the procedure being done.
My reasons for this advice are as follows:
1. It is very different to be involved in a procedure versus just watch the procedure.  I began in the dental field in 1969.  I have done and assisted with countless procedures.  That never bothers me.  But to just watch is a totally different issue.  It affects the brain and emotions differently.  If it makes me feel bad (weak, helpless and concerned about what is happening) can you imagine how you will feel?  Don't look.  You need to not be stimulating the "fight, flight or freeze" mode in your body.  You need to be calm, with no adrenaline pumping.
2.  There is every possibility that you might be feeling emotional responses stronger just after giving birth than at other times in your life.  Your response might be greater than it would normally be--out of proportion to the situation.  Don't look.
3.  Unless you are a trained medical professional you really cannot assess what is happening.  All of your response will be emotional and not based on fact.  Your baby may cry because it doesn't know what is happening.  How could it?  And how could it respond differently?  Those tears will not be for pain.  But unless you are trained in the oral cavity, you don't know that.  (FYI, I have also had a tongue tie release as an adult and it didn't hurt to have it done.  Discomfort came later.  Frustration also came as I re-learned to use the muscles of my mouth.  That wasn't pain but if I was a baby I might have been tempted to cry.)
4.  For many years you will be making decisions that your baby will not understand and must accept.  You have to accept that you have to be the strong one.  This may be your first practice at the difficult part of parenting this child.  You can do it! That's why this page is here--to give you factual information and encourage you in what is best for your child based on those facts.
5.  I've seen some say they have to be in the room in case something goes wrong.  Rest assured that if something actually does go wrong the first words out of the doctor's mouth will be telling you to leave the room so that you are not a distraction as they deal with any problem.  But the odds of that happening are so small as to be almost non-existent.

Rest assured, the doctor and staff want your baby in your arms even quicker than you do.  They will bring him/her to you ASAP.  They like your baby and will do the very best for your child--but they also want to get done for the day and get home to their own family.   No dawdling will be done by those caring for your child.  You can help them by waiting where they ask you to wait.

I sincerely wish you all the best as you make the best decision for your child.   Just a more experienced viewpoint.

~ Mira Kirkland Musser

Supply Issues in the Baby With Tethered Oral Tissue (TOT)

Supply Issues in the Baby With Tethered Oral Tissue (TOT)

(This is turning into more of a book then a paper, I think I need chapters, page numbers and a table of contents! Thank you for bearing with me and to all the couples out there who have helped me to see the whole picture)

 NOTE ....The words compensation and compensatory behavior will be used frequently. This only means that your baby and you are figuring a way around the issues. These suggestions are an attempt to get back to 'normal', non-compensatory behavior. 

A good example of compensatory behavior is mouth breathing. If the only way I can breathe at night is thru my mouth, so, of course, I snore, even though it should be thru my nose, I'm going to breathe thru my mouth. I am compensating for my inability to breathe thru my nose while sleeping.

Another good example is riding a bike with one flat tire.... you WILL get there, it won't be fun or scenic, you will be exhausted and not looking forward to your next ride.

Also, in this paper, I am ASSUMING the TOTs (tethered oral tissue, as in tongue or lip tie) have been addressed AND taken care of. Take the time to find a person who KNOWS TOTs and have your baby examined by them. If your HCP says "TOTs ARE A FAD". don't waste your time arguing, just get up and leave, go home and find the list of preferred providers in your area and go see them. Don't waste your time or $$$ on the naysayers. Things will only get worse. 

AND Most importantly, remember that fixing the TOT is only 1/2 of the fix. We have to fix the flow issues as well or YOUR baby will be one with multiple tearful revisions. Supply issues are AT LEAST as important as the stretches (if not more important) because with a flow that is compensated, your baby will not have a chance to learn proper suck/swallow and the misery continues. Just like going for another ride on that bike with one flat tire!

I do not think the frenulum will stretch or change. If you are of the belief that your baby only needs a few sessions of body work, without an actual procedure to fix' the TOTs,  I am NOT your gal! I like happy, rolly polly babies who's needs are met on demand.

I see mothers compensate for TOTs in two major different ways. One, OVER SUPPLY(OS) so the baby doesn't need to learn to suck/swallow. They basically live off of 'easy' 'bite milk'. Although these babies gain well and milk appears to be copious, they are pretty miserable with reflux, gas, fussy, colic, restlessness, sleeplessness, constant wanting to be held and, at some point (3-4 months) the copious milk supply WILL tank. These moms can pump extra milk like crazy and build a big stash which, in general, does not help with the issue at hand.

OS and OALD [Over Active Let Down] and OMER [Overactive Milk Ejection Reflex] are ver different issues. OALD and OMER are hormone driven, RARE and could be an inflammatory response to birth, diet, or life style.

It took me a long time to see, learn and label the differences. OS is a survival response. Make lots of easy, free milk for a baby who, at one point in evolution may not have made it without their mama's milk.

Or TWO, they don't produce enough milk for the baby. This is UNDERSUPPLY (US) These babies are pretty miserable too.. and hungry.

Both conditions produce fussy, restless, miserable babies. Many of the behaviors are the same for different reasons. The flip side of the same coin.

Examples.... OS babies feed frequently and rarely settle. US babies feed frequently and rarely settle. The OS baby feeds frequently from the exhaustion of trying to keep from choosing to feel like they are drowning or letting go so they can breathe. The US baby feeds frequently from the exhaustion of trying to get enough milk to survive. Both issues are exhausting for different reasons. Neither of these babies ever has the satisfaction of that nice warm full feeling. Every feed is a struggle.

Herein, I am going to attempt to explain whyand how to help both conditions.

Be patient and read the parts that pertain to you many times, quickly or slowly, it will make sense and you will all be better for it!

The constant message of efficient milk removal is what puts the mother into normallactogenesis lll. (Baby or pump driven supply). Lactogenesis lll happens about day 8, 9, or 10 and continues until weaning takes place. During Lactogenesis lll, the prolactin levels drop off, so having your prolactin level tested at, say, day 21, and having your HCP or IBCLC say they are too low is bunk because prolactin IS low now. Prolactin levels are highest during the immediate postpartum stage as Lactogenesis ll begins. When the progesterone levels drop due to the delivery of the placenta and prolactin kicks in to get the milk making business going. So, typically, on day one and 2, very little milk is present but there is the very important colostrum present. Then by day 3, 4, or 5, here comes the milk, and Lactogenesis ll is here. The start of which may be greatly influenced by the birth. The more trauma, fluids, length of labor, inductions, retained placenta, etc the longer it can take. Which will in turn, delay Lactogenesis lll (That's another article all together, but I will touch on it!)

I have no idea why some mothers respond with too much milk. In the case of too much, could it be the 'survival' mode of the mom??? I truly don't know. In these cases, we do not 'assume' TOT because the baby is gaining, pooping and has lots of wet diapers. But the mom knows something isn't right. Get your baby checked!

It makes more sense that the supply is low due to inefficient milk removal. These are the babies that we 'assume' TOT. These are the babies where the mom is heard and supplementing is usually recommended.

In both instances, the mother's will complain of sore, cracked and or bleeding nipples, Crying, fussing, miserable babies. (Big red flags, these symptoms are NEVER ever ever 'normal')

I will attempt, herein, to explain both issues in depth. Please take the time to read this a couple of times the go over the areas that seem true for you and your baby.

For the Under Supply

For the sake of understanding, let me clearly state this is about low supply in relationship to TOTs, not PCOS, IGT or other inherent issues. There are other amazing women, Diana West and Lisa Marasco, both IBCLC's who specialize in this! 

Because I am of the belief that an underweight baby is a hungry baby and a hungry baby is a baby that could be experiencing both emotional and physical pain, I think the most important path to take quickly is the one where the baby starts to feel full and the baby has the ability to build trust around feeding and food. Healthy eating habits and trust around feeding and food starts at birth.

First, a complete PROPER oral exam is required by a preferred provider. If your gut is telling you something is wrong, listen to your gut, don't take no for an answer and keep looking until you find the answer you need. Or at least the answer that makes sense. If you walk away with more questions then when you went in, please, find a new provider.

If we are asking these babies to build trust around food then we need to give it to them in a way in which they can have a relaxed enjoyable feed over and over again (no tight fists, no popping off, falling asleep, fighting going to the breast or crying unconsolably. When the baby gets stronger ie: weight gain and the milk becomes more prolific, these babies seem to do a lot better, plus they are a lot happier.y

When you think that a baby eats about 10 times a day which is 70 times a week, we may need to change their eating patterns for a few days before they (we) get the hang of it. Patience and help are highly recommended.

The US baby may suddenly sleep a lot, weight may start to tank along with the supply. These are the babies starting to fall into the FTT spectrum. They need to be fed, the milk needs to be recovered.

My thought is that if these babies need to use a slow flow bottle or finger feed with frequent feeds to put the weight on and get them out of misery then they deserve to use a bottle or finger for a while. Suck training and finger or bottle feeding while supplementing with EBM, donor milk or formula may still be required to get back to the breast. They will go back to the breast!Maybe not tomorrow, but at some point. Maybe a week, maybe a month, maybe 3 months. I have seen it all!

That old myth that a baby MUST go to the breast frequently or they will never breastfeed, is just that; an old myth. First we must establish a healthy milk supply/flow and a baby who knows how to suck/swallow. THEN and only then can we get them together again! We can have lots of practice sessions but unless we establish supply and suck, it will all be for naught.

Also, we read all the time that a baby has a better suck then the bottle. Even IBCLCs, HCPS, LLLs still say this which is true if your baby has a proper suck. If not, the pump, while the milk supply is being established, is better.

I also believe that these babies are suffering physically and emotionally because of their hunger and whether they are under or overweight, it is a sign of compensatorybehavior. 

The most important thing is to get the baby eating properly and un-doing the compensations. Re-learning behaviors is easier the sooner it is started. 

In the case of US, it's very important that the mother hook up to a hospital grade pump every three hours so that there is no doubt in her brain (not body) that she needs to make a regular supply of milk. This is where galactagogues come in very handy. Although outside my scope of practice, I really like motillium/domperidone at this point and I recommend the protocol of JACK NEWMAN MD for its use.

These babies cry frequently, want to be held 24/7 or just 'happily eat enough to maintain', (not grow or gain) and sleep 'well' for short spurts. Unless you have a very savvy HCP, by the time they notice the drop in weight and the falling off of the growth curve, the problem could be huge.

Of course the mom has already known this since at least day 4 which is roughly 40 feeds! Add 10 un-satisfying feeds a day, every day, it's no wonder you feel like you are losing your mind. HCPs who say 'everything looks great' or 'just switch to formula are not worth your time. Find someone new! Often times it is well meaning family members who will make this suggestion as well. Set boundaries now!!!! Tell them, "I love the food you are bringing to us, not so much the advice. This is important to me and I need your support".

This is where 'dream feeding' is a life saver for all. You do not need to wake a baby up to feed them! You can offer a baby food (again EBM, donor milk or formula) via finger or bottle every 90 minutes while they are asleep! After about 24-48 hours of this, they will wake and ask for food. It's miraculous. I love it. This can be done by any of your helpers. Your SO (significant other) can do this and you can sleep or pump. No need to wake the baby, they will happily dream feed. Babies will readily respond to a bottle or finger feed while sleeping. Just wiggle the bottle or finger in their mouths, twist it about a bit and usually, they start to suck. They can be burped while sleeping too. They need the rest and recovery time. Yes, you may use a cup or spoon, I happen to think they involve more work and for the sake of exhaustion in the parents, I recommend a finger or bottle.

It is great to discuss a 2 day feeding plan with the family. i.e.: mama pumps every 3 hours while someone else feeds the baby. I encourage these moms to put the babies to the breast when they really want to, but not in place of a pumping session (this is the hardest part to explain to a struggling mom). With these weaker babies, a nursing session is not nearly as good as a pumping session. Although, I am quick to remind them that our goal is to exclusively breastfeed soon. I can't emphasize this enough. Even if your baby has been hanging out at your breast for an hour, you need to PUMP. A baby with a weak suck is sending the message that 'no milk is needed' a pump is sending the message.... YES, WE NEED MILK. I often hear moms say they are feeling they are bonding with the pump instead of the baby. Put your baby to your empty ( they are never really empty!) breast and do some comfort feeds. But not at every feed NO MORE TRIPLE FEEDING .  ITS TOO EXHAUSTING.

Make all plans doable. Like 2 days at a time and then re-evaluate. Make the plans at a reasonable hour (not 2 am!) and stick to your plan. If your partner agrees to do the night feeds, they mustn't fight it at 2am! If they are doing an OK job, try not to micro-manage, just get thru that pump, that feed!

Switch up what needs to be changed (frequency of feeds, amounts of food etc but not the pumping)! In 2 more days, re-evaluate, switch things up again, if you've been using finger feeding, try a Dr Brown's Preemie bottle. If your milk supply is recovering, perhaps go 4 hours between pumping AT NIGHT ONLY! During the day, it's back to every 3 hours. (I know, it's tedious, boring and it feels like you aren't bonding with the baby but with the pump. The pay off will be great! It is a short term commitment to what could be a long term problem.

Once the baby's weight is back up, the feeding/pumping must continue while the mom recovers her supply. This takes a lot of pumping, galactagogues and family support.

They generally put on 8-12 ounces in a week (sometimes in a day!) depending on how much they have lost.

These babies recover quickly with calories on board and usually within 24-48 hours you will notice changes!  Often times they are back to asking for food every 2-3 hours, more pees and poops, sleeping better and happier. It's a beautiful sight to see.

I do think that a baby at the breast is optimal and it IS my goal but only when it's working properly and the supply is efficient. If a baby is unable to suck properly, the message will not get to the brain in which case we need to use the pump until the baby gets strong enough for the brain to clearly get the message and the supply comes in for the first time or returns. Then do the happy dance 💃🏻.

The old saying goes, "the baby is better than the pump". This is ONLY true when a baby has a good, strong, vigorous and proper suck. A weak baby at the breast is a sure way to lose a hard worked on milk supply. That is why, even if the baby is going to the breast, but mostly for comfort, pumping MUST continue on a regular basis.

In both of these situations I encourage lots of skin to skin, bathing, cuddling, tummy time and rest. Even if they are at 6, 8, 10 weeks... they need to rest and recover. Mom needs to be brought food and liquid on a regular basis... every 2 hours. Don't ask her what she wants, just give her food, if she doesn't eat it, don't take it personally, just bring something else. The last thing many of these moms want to do is make another decision. They are no doubt exhausted, defeated and could be seeing all of their decision making as 'bad' decisions that got them both into this place, so we need to tread lightly! Add in a birth they didn't plan for and we have one defeated feeling mom!

Over supply(OS)

A mom who is producing an excessive amount of milk, if that is how her body is compensating for her baby's inability to learn a proper suck/swallow, this too may be part of the problem and not part of the solution.

First, a complete PROPER oral exam is required by a preferred provider. If your gut is telling you something is wrong, listen to your gut, don't take no for an answer and keep looking until you find the answer you need. 

In the case of oversupply, these babies are the most likely to fall thru the cracks because they are usually gaining weight well so "what could possibly be wrong"?

These babies are also really miserable. They are fussy, gassy, hungry all the time, don't sleep well, spit up after every feed, have green frothy poops and want to be held lots. (I look for 2 or more of these signs). These are the babies most likely on 'reflux meds' or diagnosed with 'COLIC'. Believe me when I tell you that colic is a symptom, not a diagnosis. Nobody cries for hours on end because they are happy...

The mother's of these babies are also miserable. The mother's will complain of sore, cracked or bleeding  and mis-sharpen nipples. (Big red flag, AGAIN, this is NEVER ever ever normal).  because their nipples are badly damaged by the baby trying to stem the flow of milk by pushing the nipple into the nook in their palate (see article on PALATE ISSUES IN THE TOT BABY) or pinching off the milk flow with their tongue pushing the nipple into the gums (ouch). These babies cry unless they are being held, rocked, bounced or changed.  They tend to want to feed constantly, even though they just ate. They spit up, fuss, belly ache and can't be soothed. Feeds take forever with these babies too because they are living off of what dribbles out, (what I like to call 'bite milk'). They don't dare suck and swallow for fear of drowning. It's tough when your baby has to choose between eating and breathing. AND it's exhausting. Theses babies just take catnaps and try again. Their little fists are in balls and they are tense. The nipples NEVER get a break! I consider 2 or more of these symptoms a red flag when I am taking their history. These are the mom's who proudly tell the group, "I can pump 4 ounces in under 5 minutes and I have a freezer full of pumped milk" never realizing this is a big part of the problem

In both of these situations I encourage lots of skin to skin, bathing, cuddling, tummy time and rest. Even if they are 6 weeks... they need to rest and recover. Mom needs to be brought food and liquid on a regular basis... every 2 hours. Don't ask her what she wants, just give her food, if she doesn't eat it, don't take it personally, just bring something else. The last thing many of these moms want to do is make another decision. They could be seeing all of their decision making as 'bad' decisions that got them both into trouble so we need to tread lightly!

So, how do we fix OVER SUPPLY (OS)? First, like US we need to fix the obvious things like TOT. We need to slow down the flow/supply, AND, we need to help the baby relax, trust food and trust us that feeding at the breast is a safe, comfy and warm place to be

I have never found block feeding to be a very good solution to this issue. I realize it is highly recommended but the info is a bit dated and it doesn't usually work... 

This is where I run into resistance! But trust me here!

Most babies born with TOTs also have high, arched or bubble palates or as I like to call them, palates with nooks! They can be referred to as 'a bubble palate'. A nook is like a safe place where we like to put things. It is easy to feel in your baby. It is right inside the gum line and the minute you put your finger there, they will push against it with their tongues. For an orally compromised baby and a mom with an oversupply, this nook becomes a very safe spot for the baby and a very painful,spot for the mom. This is the 'default' position. This is where the tongue will often go to. This is the spot where they try to pinch off the flow of milk. This is where the 'lipstick' shape gets made, this is where the nipples get cracked, blistered and bleed. Generally these babies have a very shallow latch, they gag when anything gets near the soft palate. There is a good reason for this, and it is pretty easy to remedy! 

Right now, stop what you are doing and with your tongue reach back to find the soft palate. See how nice and soft it is? If your baby was able to maintain the tip of your nipple there, you wouldn't feel any pain! No more cracking, bleeding or misshapen nipples. 

For the mom with OS, this is a very scary place for the baby. The TOT is revised, the baby can finally suck/swallow properly and when they try, BAMMO, it feels like a flood. They immediately default back to putting that nipple in the nook. They don't want to drown, they don't want to chose between breathing and eating. 

So we start to help the baby build trust around feeding properly. There are a few ways to do this:

1. Laid back breastfeeding
2. Use a Dr. Brown's preemie or ultra preemie bottle for a couple of days
3. Finger feed by placing your finger to the soft palate first, then insert the tube. If the baby starts to gag, move your finger back a tiny bit but not out of the mouth. These babies are not choking, but gagging which is a common reflex. With a few tries you will get closer and closer to the 'sweet' spot where proper feeding can take place. You will notice that the baby starts to relax and un-clench their fists. The get in a full feed! They get milk drunk and happy. They 'sleep like a baby' they don't cry, bellyache, throw-up, have green frothy poops, hiccups or restlessness. 

Now, we need to get your brain to realize that the baby is ok and can regulate the milk. This is the frustrating part! 

Most people with OS due to TOTs will suddenly notice their supply tanking between 4 and 6 months. You have heard it many times before... "suddenly my milk just dried up, so I had to quit". 

If you are still in the first 3 weeks post partum, the shift will be relatively easy, beyond that it becomes harder. 

I highly recommend using a bottle or finger until the baby gets used to a rhythmic suck swallow, no choking, sputtering, gagging. If you are feeling a burning need to breastfeed, try the baby on an 'empty' breast, the breast is never totally empty, it just feels that way. 

If your baby is finally building trust around feeding and you put her/him to a full breast, flooding will happen again and the old behaviors will come back. This is (IMHO) very scary for babies. 

Depending on the age and severity, the first day I recommend one full, pump-till-empty pumping. You may get 12+ ounces. For the next 2 days, I  would pump to comfort or baby's needs, whichever comes first. No need to build a stash now. You can do that once all is back to normal! Plus, you no doubt have a huge stash already. As soon as your breasts start to feel full (not all the way to engorgement which leads to mastitis and plugged ducts (which you have probably already had too), pump for about 90 seconds or until comfort, then at the 3 hour mark, pump enough for a feed. Do this until you no longer need to pump between feeds and your output is similar to your baby's intake. This may take days or weeks but each day will be better.

If your baby is fearful of the breast, or no longer recognizes it as a food source, try using a nipple shield. It's not the shield the decreases milk supply as is stated in so many places, it's the baby's inability to efficiently transfer milk. As long as there is milk in the shield every time the baby comes off, your baby are working well! Also, the shield is a little firmer and kelps the baby to open wide and not clamp down so easily, it helps get the nipple further into the mouth and it keeps you, the mom, out of pain.

When you do put the baby to breast, you may start in a sitting up position and then roll back to a very reclined position. A place where all the baby needs is support across your chest and gravity will hold her/his little head to the breast. (Perhaps a pillow under the arm on the side where the baby's head is). In this position, gravity also helps to slow the milk down. If it starts to go too fast, your baby may easily let go and you can just let that milk run off and the baby will no doubt put his or herself back on all by themselves. Sometimes they get frustrated and need a little guidance but each time it gets less awkward and easier for the baby, and the position will seem easier for you, to the point where you can startin a reclined position. There are some great articles on line about this positioning with videos on you tube. It's called LAID-BACK BREASTFEEDING or BIOLOGICAL NURTURING. I know you can't do this forever and as soon as that milk slows down to where your baby is regulating the flow, you will be like all those other mamas who make it look so easy! Standing, sitting, lying, walking, in a carrier, in the car seat... ALL OF THAT!

The side-lying position may still be too much for the OS baby and mom as gravity may still push the milk out too quickly. You will get there! 

Your body has been beautifully working overtime to help your baby survive... This too shall pass. Things will change pretty quickly.

I try every bottle I recommend. A proper suck swallow is pretty difficult. Try a couple of bottles, see if you can do it, work those muscles in your tongue. I was shocked by the difficulty of it. When I had my tongue released, one of the exercises I did was to learn how to suck swallow properly and I used a Dr Browns preemie to learn! I also made myself lick things our of the bottom of a bowl to stretch the muscle. 

I am not a fan of AWM (Active Wound Management), I'm a fan of proper breastfeeding! I will not ask a parent to inflict pain on their baby. Instead, I teach proper breastfeeding. What better exercise is there then using the tongue properly every 2-4 hours 8 to 10 times a day? Will stretches or AWM ever be needed? They might, on occasion and very gently, but I'd rather follow this protocol then have a baby develop breast or bottle aversion.

The things I haven't covered in this extremely long article are:

TUMMYTIME! does every baby need it? YES, YES AND YES. Please look this up and or take a class! It works wonders and the creator of it, Michelle Price Emanuel KNOWS HER STUFF!!!! 

Lip blisters (no they are not 'normal')! 

Car seat aversion.. often a sign of TOT because TOT is a mid-line issue

What have the parents been thru, how can I be part of the solution and not the problem?

Body work? Does every baby need it? 

Torticolis 

Pooping at least once a day (not pooping is NOT normal).

I hope this helps all of you,

Annie VerSteeg IBCLC, RLC.  

Annieibclc@gmail.com

January 23, 2017

May be reprinted with permission and credit.

She can take a bottle now!!!

I got my daughter's PTT, ATT, & lip tie revised at 3 months and she is now 5 months today! Since the day she was born, she was unable to take a bottle or pacifier and today she took and finished her first bottle ever! I am so happy to know that all those late night stretches and heart wrenching cries were worth it! She's a happier baby now 😌 Her reflux is gone, she loves her carseat now, and she sleeps from 10-8 every night! I am so happy that I got her revision done and wish everyone luck.
~ Ezze Marin

No regrets!!

Six weeks ago today we had our son revised for class IV lip tie and posterior tongue tie. He had 0-5% tongue elevation. He was 11 weeks old. Our IBCLC figured it out at 11 weeks when we met with her for the first time. Immediately following the revision, the worst symptoms stopped and haven't come back. He would choke on letdown when BF and started rejecting the breast. He couldn't create a seal on the breast and had horrible reflux. He would cry inconsolably for several hours every night. We did stretches every four hours for four full weeks. We dropped night time stretches in the fifth week. And now in the sixth week we stopped altogether. There are signs of a small amount of reattachment but given the symptoms haven't returned we aren't worried. I've learned so much from this support group and am so grateful for all your collective wisdom. I have no regrets. He is now 16 weeks old and our happy little guy.

~ Carla Terre

(Originally posted in "tongue tie babies support group" on Fb.)