"will anyone check this baby for oral restrictions...?"

Disappointed would be a understatement....

My younger sister has just given birth to a beautiful healthy baby girl. 37 weeks, scheduled emergency c-section, a great set of lungs. My job as big sister was to help take care of the baby until my sister was out of surgery.

Tongue and lip ties, tethered oral tissues, it's what I do for a living. I'm a dental practitioner, an 'oral specialist', one of the few Orofacial Myofunctional Therapists in Australia.

My job is to assess oral dysfunction and then to treat it. This requires lots of rehabilitation of underused, poorly toned oral muscles as well as 'calming down' overworked facial muscles. The tongue, lips and cheeks should work in symphony with each other, taking equal shares of the daily burden to eat, swallow, speak, and assist with breathing. Unfortunately in our dysfunctional modern world, this doesn't happen naturally.

The first breastfeed for my niece was awkward. My sister was totally relaxed, the baby was hungry and willing. The midwife assisted the baby to latch but she 'couldn't stay on'. After several attempts the midwife decided 'a different hold might work'. This baby had been out of her mothers womb for less than 45 minutes and was thrown into 'how can we compensate' mode already!! Shocked. The football hold didn't work either, so the midwife started to 'hand express' my sisters breast and gather her colostrum with a syringe.

I had already made my diagnosis. I had checked my nieces mouth as soon as I met her. I knew she had lip and tongue restrictions. I'm the 'oral specialist' in the room watching this chaotic 'first feed take place. Nobody but me has looked inside this baby's mouth.

Why would you not do a 'suck test' and feel that her tongue cannot extend to latch into the nipple? I'm not a lactation consultant or a midwife but I can feel the power of those gums grabbing my finger and can tell that's not a baby who will latch.

So I ask, 'will anybody check this baby for oral restrictions?'. Blank stares all round. Three midwives, two of which just look away and the third tells me, "oh, the paediatrician will do that tomorrow". Tomorrow. Tomorrow?! After a whole sleepless night with a baby who cannot latch and no feeding specialist in sight?

Tomorrow came and the paediatrician said, "there's no ties, she just needs to learn to feed". Confusion starts right here. The SPECIALIST said there's no ties, my sister chose to hear what he said because her baby's health is in his hands. He knows all about babies right? He's a paediatrician, baby doctor, they know everything about babies right? Then there's the midwives, they are all helping my sister, they now have 'a plan' to feed this baby. This is the plan;
1. Express every couple of hours attach a hospital grade breast pump for 10 minutes on each breast, then 5 minutes on each breast.
2. Give the baby 40mls of formula to keep her belly full and so she doesn't get 'too upset' when we try to latch her onto the breast.
3. Give her the 1ml of colostrum that the 30 minutes of being attached to the pump produced, then compensate again with formula.
4. We'll only do this until 'my milk supply gets better', and by then baby should have learnt how to attach to the breast.

If I'm confused by this 'plan', how must my 30 hour old niece feel? What does her little brain make of the 'difficult to attach to the breast', but oh so easy to down 40mls of formula from the bottle, do to her? How do her Orofacial muscles know what to do?

Sucking from a breast and sucking from a bottle require VERY different muscle movements. Sucking from a breast, without oral restrictions, is how the perfect symphony of Orofacial development begins. Sucking from a bottle, COMPENSATING, is how DYSFUNCTION begins.

I'm the oral specialist but I usually only get a say once dysfunction has occurred. People bring their dysfunctional children to me for rehabilitation. Adults come to me for oral rehabilitation. People on the verge of suicide come to me for Orofacial rehabilitation, because THAT muscle dysfunction that began at birth, has impacted their whole life and caused pain in their heads that NOBODY could 'fix' until they came to me.....to US....I'm not the surgeon, the surgeon is another oral specialist, a dentist with a piece of equipment that cost over $100k. A laser that removes a lip tie or a tongue tie in 30 seconds without a drop of blood. A 'surgery' that requires no anaesthetic on a 26 hour old baby. A 'surgery' that ALLOWS that baby to attach uninhibited to the breast so she can suck in a functional manner.
Her palate can now grow to the shape of an unrestricted tongue that can latch freely to her mothers nipple. A lip that can flange to allow the breast to be tightly sealed so that she doesn't gulp air whilst feeding, causing 'reflux' or 'colic'.

Accountable. Who is accountable for the hundreds of thousands of undiagnosed babies that are thrown to COMPENSATION so soon after their births? Why is there no 'oral specialist' involved in this primal instinct to feed? Why do we get baby after baby who is 'failing to thrive'? Who is responsible for the path of muscle dysfunction that occurs at birth?

I'm upset. I'm angry. I'm frustrated. I'm the oral specialist and it's my niece that it's now happening to.

Paediatricians need to be educated in tethered oral tissues. They need to be accountable for this path of dysfunction and the ongoing lifelong effects. They are the 'gods' to these vulnerable young mothers. They need to become oral specialists if they are given this power to change the trajectory of a humans growth, a humans lifelong journey to the path of dysfunction, malocclusion, muscle imbalance, chronic pain.

This is my specialty. This is the reality I see every day and it's become personal now. I see the path my sister will travel because she's been given poor advice from someone, from many professionals, who are not oral specialists.

Postnatal depression, anxiety, the days, weeks and months of grief because nobody identified an oral restriction that could have been released in 30 seconds. I have the right to be mad because I'm the oral specialist but nobody is listening to me.

Palate issues in tied babies

Palate issues in newborns with tongue tie.

My observations as are as follows;

Babies born with any type of TT appear to have a 'high', 'bubble' or 'nook' palate.

I will use the term 'nook' because it seems to best describe what is going on.

Upon examination, I notice these babies have a little or large nook directly behind the upper gum line. That is the spot that is most comfortable for babies to put everything that goes into their little mouths! Be it a breast, bottle, paci or finger.

I think their tongues have rested there for their whole gestation helping to make the nook! This is their 'default' position and place for everything! This is why we hear the words 'pinching', 'biting', 'squeezing', 'painful', 'my baby takes over an hour to feed and is still hungry' and we see cracked, sore or bleeding nipples. We also see lots of crying.....

These are the poor moms who are told OVER AND OVER again that, "Everything looks good” because the latch LOOKS good but if you listen with a stethoscope, the pattern is suck, suck, suck swallow. Because really, it is bite, bite, bite swallow. The latch is REALLY very shallow and the mom is visibly upset by pain, frustration and lack of validation :-).

These are the babies who never relax at the breast, they fight to latch, they cry and fuss, they pop on and off lots, they will fall asleep at the breast but not stay asleep,  they either sleep too much or not enough. These babies would be described as 'unhappy, tense or colicky'

Often seen issues with this problem are; reflux, gas, green (frothy/mucous poops and or excessive hiccoughs. Until these babies have a proper latch/suck/swallow/seal, the ability to suck and swallow is not learned. These dyads suffer in many ways.

Once the tongue issue is resolved, these babies are ABLE to bypass their little default nook but we need to help them learn how.

In order to establish and maintain a proper suck/swallow/seal, the tip of the nipple, bottle, finger must be at the junction of the hard and soft palate (you can feel your own right now with your tongue). Then and only then will proper, efficient transference of milk begin. When training with a finger, you can FEEL the back of the throat, you can FEEL the change in the suck from bite to suck, you can FEEL the suction change and you can feel/SEE the jaw motion change to a nice deep suck swallow. You can SEE the baby relax right in front of your eyes. It is amazing and heartwarming and often times, more tears.

It is my observation that until these babies learn the proper way to transfer milk, to where there is a rhythmic suck swallow, suck swallow, suck swallow, suck swallow; pause, they will NOT produce the proper gastric juices needed to properly digest breast milk or formula and later solids.

Often times, these are the babies who never seem full, they will always eat. Often times, once the issues ARE resolved, they seemingly 'overeat' but, if you were an 8 pound baby and needed 20 ounces of milk in a 24 hour period but you were only getting 16 or 18 ounces per 24 hours for, let's say 10 days, that would be 20- 40 ounces of food you didn't get that you needed/deserved. Who among us wouldn't try to make up for that?

Suck training is relatively easy once the issues are resolved. I teach suck training with;

An INDEX FINGER placed at the soft palate with OCCASIONAL gentle/rhythmic downward pressure on the tongue until the tongue learns to DRAW milk out and the tongue rests FORWARD of the gum line. I like teaching this technique because this is often the moment at which the mom totally understands what it takes to suck/swallow. This is a powerful moment! Suddenly, it all makes sense!

NIPPLE SHIELD (large) as this forces the baby's mouth to open wider and makes it harder to push the nipple into the nook! Weaning from the shield is fairly easy once suck/swallow is established.
I already know all the 'stories' about nipple shields! (I love shields, have always used them, will always use them. Sometimes they don't work but they are a great addition to any LC'S bag of tricks.

These mommies and babies deserve our (IBCLC's, HCP's, LC's and support people of ANY kind) unwavering help and dedication. It is my hope these determined mommies are HEARD. If both mommy and baby are miserable about feeding let's give or get help. Even if it means admitting we don't know what's going on and we have to refer them to someone else, they deserve the best!

Annie VerSteeg IBCLC, RLC

Sleep issues resolved immediately!!!

My 3 year old was never able to sleep through the night. Mouth breather, snoring in the back of the throat, soak beds with drool, thrash around like a drunk ninja, and sweat ALL night long, even if sleeping with just a diaper, he would wake hair soaked in the morning. Instantly gone after revision. He was revised at 5:00 in the evening. That night he did not snore, sweat, or move. My husband and I stared at him in disbelief for several nights. Looking back it's very worrisome to me that babies sleep like that, it doesn't seem safe. I bed share with my babes and there was noway I even thought about him sleeping away from me. This procedure could have changed him completely. It boggles my mind because he even had an anterior tie, how did no one, me included see that! ~ Amy Miller Barry

"Best decision I ever made....."

Best decision I ever made was get this little munchkin revised at 3 days old. My son was 2 before he was revised (not by choice) & through all we had to suffer w/ him We decided not to go down that path if we didn't have to wth her. She had the same level 4 ULT, & type 2 ATT, & I believe b/c we got her revised so early it has made the WORLD of difference. My son has SPD, many many delays in language, gross motor, chewing/swallowing problems... the list goes on. He has been in speech & OT for a year & is FINALLY getting caught up. But this little girl hasn't had ONE SINGLE PROBLEM (as of yet haha). She walked at 9.5 months, eats every single thing I put in front of her, & is Talking at 11 months. I had no clue kids could talk so early, but I teach her a new word almost every other day. It's just the most amazing thing. Ties affect much more than breast feeding, & I'm so so so so sooooooooooooooo thankful we were able to make her life easier than her brother's. They are both awesome kiddos in spite of it all, & today w/ 2 revised kiddos I am able to see the light. GOd bless the doctors that are fighting for us parents w/ kiddos w/ ties!!! ❤️
~ Amy Smith

"He couldn't use his tongue to swallow...."

Austin had a very tough first 6 months of life. He was extremely fussy, took in tons of air while nursing and finally started to refuse the breast. I used to have to swaddle him and rock back and forth while standing to get him to eat at all. It was heartbreaking. When it came time for solids at 6 months he would gag and vomit, he couldn't use his tongue to swallow. He would only sleep swaddled too. It took 6 months of questioning the pediatrician, taking him to the chiropractor and other doctors before we finally figured out he had a PTT and a lip tie. He was revised by a PP at 6 months old. There was immediate relief and he slept that night without a swaddle for the first time in months. Those first couple weeks were difficult, the stretches were a nightmare, every feeding was different. Sometimes he ate well and other times I questioned if he had improved at all. Between the second and third week things got a lot better. He was eating and sleeping well and I quit the stretches after 15 days. He was also able to eat solids without vomiting! By 4 weeks post revision many on the symptoms had returned. I went back to the PP to find out that his tongue had reattached. So at 7 months old he had his second revision. I was much more diligent with the stretches that time. We are now 2 months out from his second revision and he is doing wonderfully!! He is so happy, relaxed while eating, sleeps better and is putting on some weight. My only regret is that we weren't able to figure out sooner what was causing all his problems. He still goes weekly to the chiropractor just as a precaution. To all you Mama's still in the trenches, I know it is tough, I know the heartbreak, I know the roller coaster of emotions. It can and will get better. Stay strong!!
~ Alicia Rice

My 16 month old is finally eating real food!!

My 16 month old boy had a tongue/lip/buccal tie revision procedure two months ago. The procedure and the stretches were traumatizing for us, probably due to his age, BUT he is now eating real food (he was exclusively on formula since 8 months) with no difficulties and his severe GERD  just disappeared, only three weeks post procedure. He is no longer on medication. It is amazing.
PS: we also started seeing a chiropractor before the procedure and continue to do so after the procedure and would highly recommend it.
~ anon

It's always better to get the release done as soon as possible..

Just want to share my story.  This week 3 of my 4 kids had their tongue ties released, at ages 10, 10, and 5.  I EBF all of my kids when they were babies, and they all gained weight and thrived.  As babies, they all had excessive gas, spit up after every feed (a couple of providers considered it "reflux," but I refused medication), 2 of them couldn't sleep well, couldn't settle, and I had moderate nipple pain, although it never occurred to me or any of their providers that there was anything "wrong" with breastfeeding.  After weaning, the twins developed recurrent ear infections, and continued sleep issues.  One of my twins had an h. Pylori infection in his GI track, both had continued mild respiratory issues--snoring, upper respiratory infections, which then developed into asthmatic symptoms (not "true asthma.")  The twins still, at age 10, wet the bed nearly every night, which, after extensive tests to rule out all other causes, have been attributed to likely sleep apnea--likely due to their tongue ties.  This has impacted their social development, as they don't like to have sleepovers, and last year they didn't want to go away on a school trip because they were embarrassed.  My middle son wasn't nearly as symptomatic, he only had issues with frequent URIs and dental caries.  He had his tie released first, (age 5) and he did great.  Our provider used nitrous, topical anesthetic, and electrocautery to make the release, which minimized the bleeding.  My 10-year-olds freaked out.  The nitrous didn't work because they wouldn't breathe it in.  They both had to be restrained.  They screamed bloody murder.  In retrospect, if I had known their anxiety levels would be so high, I would have asked for an anti-anxiety pill to pre-medicate them.  Now, it's likely they will need anti-anxiety medication for any future dental procedure.  Our provider and his tech were very kind, gentle, and understanding, the ties were completely released, and all 3 of them are healing perfectly.  But the ordeal was so traumatic for my older kids, and their health suffered for so long, if I had it to do over again, I would have had them all assessed and released in the first few weeks after birth.  10 years ago, that wasn't really an option, no one even mentioned TT to me.  5 years ago, I had become a lactation professional, but my middle son's breastfeeding symptoms were so mild, I didn't think it was possible that he had a TT.  In the past few years, as I have taken more training on oral assessment and become more educated about TT/LT and the lasting effects, I've seen what a huge difference having a release makes.  As an LC, I've even held babies while providers performed the release, then helped mom put the baby right to breast and seen the relief that comes immediately to both mom and baby.  The procedure was so simple and fast, but my kids' older ages made it so much more traumatic than infant release.  As an LC, I always tell my clients that it is completely their decision about whether or not to release, and I fully support them in whatever decision they make.  But having seen what problems follow tied kids through their lives and into adulthood, I definitely am of the opinion that it's always better to get the release done as soon as possible!
~ Amy Smolinski

A post of encouragement

A post of encouragement 💜 I feel like I've read a lot of panicked post on this page lately and I just wanted share what I hope to be some strength or even a glimmer or hope of some of you. I was in your exact shoes 2 months ago! I think I posted everyday for the first week or so. Looking back at our 2nd revision, it feels like ages ago. We now have a happy, healthy, chubby little boy 💙 He had a severely restricted tongue tie and lip tie at birth. The tongue was clipped before we were discharged and we were given no aftercare instructions. Well.... scar tissue formed and it reattached. It caused SOOOOOO many issues.... weight loss, pain in the car seat,

gas, a severe case of mastitis for myself... YOU NAME IT! My LC caught it and sent us to an ENT. He caught the lip tie and wanted to address both by putting him under. NO NO NO NO! I had a gut feeling that it was too early of an age (10 weeks at the time) and unnecessary so I sought guidance from these support pages! And thank goodness I did because I was referred to a great dentist who did the procedure without anesthesia and was extremely thorough.  The first week was hell! We were all in tear. BUT it only got better after that. He is packing on the pounds, doesn't scream in pain while riding in the car, and is overall just a really happy baby! I caught myself 2nd guessing the procedure countless times a day during the 1st week but after seeing results, I knew and felt confident I did what was best for him 💙 Hang in there Mommas! You are all amazing!

~ Stacia Schluttenhofer

Her vocab and enunciation increased dramatically

Can you see the difference in her face? Left is 7/16, 1w post revision with a pp. Right is 9/1. She'll be two and a half this month - within a week of revision, her vocab and enunciation increased dramatically. She no longer spits out large bites of food. And I think she generally acts happier! Her bottom incisors had already started to turn in - both tongue and lip tie were corrected.
~ Stephanie B

debilitating migraines for as long as I remember...

Get them done. I can tell you about the thousands of dollars, and specialist after specialist I saw over the years I had debilitating migraines... Oh the meds I tried (and spent money on) of course not without side effects, and the fact that nothing really worked. Want to know why I had debilitating migraines for as long as I can remember? A tongue tie. I had very mild speech issues as a child, and while my mom said she had some nursing issues and gas problems with me as a nursing baby, she "powered through" I had some dental issues that were related to ties for sure, but tore the lip tie when falling off my bike as a kid and had thousands of orthodontic/dental work courtesy of my parents. 

My son was revised and it was a huge game changer for us, the biggest problems we faced were around 4 months when supply will naturally regulate, my supply started to tank and fortunately after revising he was able to nurse great and get it back up there. He went from screaming in the car seat to liking the car and falling asleep, and he also started sleeping SO much better. For me? I learned about my having a tongue tie from debating whether or not to go through with the revision for my son... I was shocked! And had mine fixed, even though I was rather unconvinced that was my problem (wouldn't ANY of the dozens of MD's I saw over the years at well reputed institutions like the mayo clinic and also a well regarded university research clinic have figured that out?) it's been a year and a half and I don't have migraines anymore. It's legit changed my life. 

I went from being on the fence of fixing my son's (and definitely cried the whole time before/during/after the revision) but I'm currently due with my second and I'm getting this baby's mouth assessed by the provider that helped my son soon after her birth. I don't want any child of mine to suffer like I did for years for a tiny damned flap of skin in their mouth!!! (Which btw I've had mosquito bites that are more traumatic/hurt more)

~Trischa Heitman-Ochs

What is your "norm"??

With my tongue tie revision coming up tomorrow, I've been doing a lot of thinking. We've been having some good discussions in my tongue tie group about what is "normal" for a child with an unrevised tie to experience and what is not. Here's the thing: If it's something you've experienced all your life and you've never had the opportunity to experience differently, how do you know what's normal and what's not?

All my life, I've had these issues - grinding/clenching my jaw, frequent tension headaches, neck pain, back pain, tension in my whole body, getting tired easily while chewing/sucking/swallowing, mouth breathing, congestion etc. I just shuffled it off as being part of who I was. I never really thought about it, and no one had ever mentioned to me anything that might have made me think that it wasn't a "normal" thing that everyone experienced.

It wasn't until my daughter's ties came to the forefront and I started researching into them that I found out that there is a huge group of adults who have lip and tongue ties and have found relief from all of the symptoms that I listed. This WASN'T normal?? I could likely have some relief from some/much of this?? Why hadn't I been told? Why hadn't my parents been told that I had ties? Why in 41 years of life had not ONE single dr or dentist noticed and mentioned to me that I have ties?

And the biggest question of all: If you don't know what "normal" feels like, how are you supposed to vocalize to anyone that something is wrong? How are you supposed to know what's normal and what's not?? In my adult ties group, I would say that the most common reason why the adults are getting their ties revised is because they want to know what they will (are/have) be putting their child through. They don't get them revised because they know they have issues stemming from it, they just want to know the pain/experience to expect. And you know what? The most common thing I read from people after the revision is "I had NO idea I was holding that much tension before." "I had no idea that swallowing and chewing could be this easy and pain free" "I had no idea that breathing could feel this good and easy."

Something to think about. If you don't know what "normal" is, you don't truly know how something is affecting you.

~ Teri Geurts

An adult's response to why ties should be revised in babies...

I am 40 and had my posterior tongue tie revised recently. It went well and I had immediate improvements. My mom couldn't find support when I was little to revise the lip and tongue ties right away. She developed mastitis soon after I was born and had to have a surgery. I was put on formula when a month old resulting in severe allergic reactions. 

Then I had severe ear infections until I was almost 10 y. o. (they didn't do tubes back then). I now get comments on scarring inside my ears all the time. I still remember how unbearable the ear ache was and sleepless nights from pain. Just having a chance at avoiding ear pain would make me run for a revision for my child. Unfortunately my late revision is not going to change my significantly underdeveloped lower jaw which was pulled backwards by the tie resulting in what is called a "weak" or receded chin. It is also not going to return thousands of $ spent and has yet to be spent on orthodontia, mostly due to the tie which led to lack of breastfeeding and subsequently misaligned jaws (See Dr. Palmer research among other things). Multiple orthodontist told me I had to break my jaw to extend it, there was no other way to fix significant underbite and overjet. It is a complicated surgery with a lot of things that can and do go wrong. I had to decline the surgery, so they extracted 4 teeth to pull the teeth back with braces which made my mouth even smaller leading in part to exacerbation of digestive issues, food allergies, teeth grinding and clenching, suspected sleep apnea and resulted tiredness. Now instead of spending my time with my kid and family, I am tired dealing with fatigue, sleep disturbances, TMJ... (obviously there were other factors besides the tie, but there are plenty of stressors on the body and one more eventually would break a camel's back).  Why would you want a properly developed jaw? You don't see many athletes with receded or "weak" lower chin and jaw lines. You need to be able to breath unobstructed to obtain best results in sports and there is also a social stigma especially against men with receded jaw line. The tongue is the first and main orthodontic appliance. It is a muscle capable of applying "500 grams of pressure on teeth, yet only takes 1.7 grams of pressure to move a front tooth." You want the tongue to apply the pressure properly. No matter how much ortho you can do later in life, if you don't fix the tie, the tongue is going to continue push them the way it is tied, not the way your orthodontist want your teeth to go. To be afraid of the procedure, especially on a small baby is very understandable. It is good you both taking the time to weigh all the pros and cons. I hope you will be able to reach an agreement. You both are trying to put the baby in the optimum conditions for his development and ensure a healthy and happy baby.

~Anya Rumi 

It takes a village...

Success Story / Long Post: With my son, we had a tongue tie diagnosed too late and it was only partially revised, so I was never ever able to fully breastfeed him and I instead pumped 8 times a day for a year, while constantly battling low supply. This time with my daughter, I felt more prepared on the tongue tie front and my plan was to get it corrected early on with a laser and then our breastfeeding journey would be much easier than with my son, and hopefully successful. Unfortunately she was born with a very severe tongue tie. Scissors were used when she was born to clip what they could, when she was 4 days old we had someone in town try to correct it with a laser, but it was so thick and vascular, it was only partially revised, though her lip tie was able to be fully corrected. 24 hours after the laser revision, my daughter became lethargic and stopped eating, so we ended up at the ER due to dehydration. No one was able to get an IV in her, so we were admitted into the hospital where we ended up staying for 5 days (probably would have been shorter if Memorial Day wasn't thrown in the mix). At this point my daughter completely stopped nursing and I had to resort to pumping full time and trying to finger feed my daughter with a syringe. It was a very stressful 5 days just trying to get her rehydrated and hoping that she might start breastfeeding again. But thanks to the amazing lactation support at UNMH, even though everyone else was telling me how insignificant that tongue ties were and their effects on breastfeeding, lactation was my advocate and they forced the issue on getting speech and ENT involved. Finally, ENT looked at her tongue and agreed to try and correct it under general anesthesia. So we went home thinking her tongue tie was fully revised. We did the recommended stretches and kept on trying to get her back on the breast. After 2 weeks, she finally started nursing again. Over the next month we slowly worked her up to breastfeeding full time and started to wean out the bottles little by little. After the ENT procedure had fully healed, we still noticed a very significant tongue tie, so we decided to go to see Dr. Bobby Ghaheri in Portland to get her tongue tie fully corrected once and for all. So last week, her tongue was completely corrected and we are now fully breastfeeding and she just took a full weighted feeding within 20 minutes this morning and she is now 12 weeks old!!! It has been a long road and I honestly thought we might never get here, but I am finally breastfeeding one of my babies!!! So for those struggling, it is possible with the right team around you and lots of support. It truly takes a village and I am so thankful for everyone that has helped me get to this point :-)

~Carrie Jung 

"No more Zantac!!"

We went to our local breastfeeding support group today for a weighted feed and check with My days LC. We are currently 11 days post release #3, a little history- the most he has gained in 3 months was an ounce a week. In 11 days Judah has gained 11 oz! His transfer in 10 minutes was 6.2 oz! Completely off zantac since day of revision and no longer symptomatic. He is sleeping for longer, uninterrupted cycles. And babbling where he wasn't trying to babble at all before. His mouth is almost entirely pink, the wet scab has nearly healed completely and remained entirely open. One more assessment with occupational therapy and we hope to graduate treatment. Assessment with an SLP is coming soon to rule out need for myofunctional therapy or early intervention. His latch is not painful anymore. My supply is back to 100%. No tongue clicking. No gagging. I think this one has stuck!

~Jessica Mays

A year on...

A year ago I took my 5 month old to a pediatric dentist to see if she had a tongue and lip tie. I remember it clearly because I had decided I was going to give up nursing if I  got told again there was nothing wrong (pediatrician and previous specialist had said there was nothing there) I was having such a tough time. It was summer time and I wanted to be out having fun with my baby. But instead I was stuck at home because I felt guilty if I missed a pumping session. I was pumping to supplement and increase my supply. And honestly I was terrified of nursing in public because my baby cried every time I nursed her. I felt so selfish about quitting but I just didn't think I could do it anymore.  Fortunately this story has a happy ending...the dentist diagnosed and revised the ties and I am so happy to still be nursing my thriving almost 18 month old!   I'm so thankful to the LCs who first found the ties and to the ones who strongly encouraged me to get another opinion. My best advice is trust yourself! I knew there was something wrong and I wish I had pushed harder to get help sooner. My second piece of advice is to remember that with older babies it might be a while before you see the improvements. Fortunately my daughters weight gain increased and fussiness decreased in about 3 weeks but developing a comfortable nursing relationship took a really long time. I had been worried about my supply and feeling like a failure for so long that things didn't start feeling easy and natural for months. Now I love it and nursing is my special time to cuddle my busy toddler! I wish good luck to everyone who is thinking about having a consultation or doing the revision and to those who have just had it done! In our case it really made a tremendous difference!

~Sara Gagliano

Wow!

Had my tie released Friday by laser. So far all I can say is wow! My jaw pain has gone away, my neck and shoulder pains have gone. I can raise both arms above my head, I can turn my neck from side to side. My sinuses have been draining like crazy. My middle bottom teeth are also uncrowding a bit. I could feel them moving yesterday. I have not had a headache since Friday. Only downfall is my ears hurt but they have been popping like crazy, and of course my tongue hurts. I have quite the gaping hole under my tongue, but it feels just fine with the odd tylenol or advil. I have been massaging the area and doing the stretches. I went for some craniosacral yesterday and chiropractic adjustment. I slept like the dead last night! Both the chiropractor and massage therapist could tell the difference. I followed up today with the dentist- he thinks it's looking good. I had some concerns wondering if he clipped enough as I don't feel my elevation is as good as it should be, but his tech also looked at it and she said it's good. It will come with more stretching and healing. Not enjoying having to open it back up every morning, but it's been light enough healing that it opens with a good jaw stretch. 

~Melissa Cameron 

The bloat is gone!!!

So here's the difference in just a week after tongue tie revision has been done! I never thought you'd actually see it! This was her 2nd revision as the first reattached..I wish we hadn't waited so long to do it!

~Samantha Flint 

"I will never regret revising her tie..."

So my "baby" is now a big 2.5yr old toddler. She's #5 and we had a really rough start to nursing. For MONTHS I suffered in agony with vasospasms, pain and misery nursing. I am a LLL Leader and had a lot of access to IBCLCs. More than your average person anyways. But 7 IBCLCs, a couple pediatricians, an infant feeding specialist and a few more "experts" all really let us down with not one suggesting tongue or lip tie. 

At 7.5 months old someone random suggested it to me leading me to another IBCLC in the area who then directed me to Dr Ghaheri, the nearest provider to me but still 450 miles away. Long story short we flew at 4 in the morning to Portland when my baby was 8.5 months old. Took the MAX to his office for an appointment at 10:30am. She was revised and we were on a plane home by 2pm. 

We had gobs of bodywork before revision (from literally 2 days old) and some afterwards as well. I religiously did the stretches but I also was as gentle as I could be and worked very hard at making it a game for her. And slowing within a couple months the pain improved. It took about 10 weeks to be entirely pain free. More amazing is the other changes in her because of revision. Her whole body used to be like picking up a wooden plank! Her neck stiffness went away, her whole body loosened. She even just seemed more comfortable in her own skin. It's stunning! 

Since then she does have occasional regressions were her body or mouth will tighten up for a couple days. During that time it usually becomes a little painful for me to nurse but never like it was before revision. It's quite mild. And it always passes in a few days. Keep in mind this is now 1 year and 10 months post revision.

Her revision led to me thinking about ME. See I suffered from chronic migraines. Chronic like 28+ days per month, almost daily migraines. It was horrific. Low and behold we went back 13 months ago all the way to Portland for my own revision. Immediately following revision I had TWENTY ONE DAYS STRAIGHT migraine free. Seriously....3 full weeks when I generally never went more than a day or two at most without one. More amazing is the other symptoms it solved for me too that I didn't even know were because of a tongue tie. Insomnia for example. Heck it's even lowered anxiety, it fixed digestive problems, neck and back tension, and more. It's truly astounding. I do get migraines still but I have way more days without than with one. And they are way easier to treat. One dose of meds almost always knocks it right out. I too have regressions which are getting milder and further between. 

A lot of people here say the stories posted here are scary. My goal in posting is for you to see there are good stories too. My baby did not scream and cry post revision. She did not refuse to breastfeed. She was a little whiny for a few days. Days 5-7 were the worst but she still wasn't crying. She was just clingy. By day 10 she was back to normal. She did hate the stretches. That wasn't fun. I made it a game as much as I could which honestly felt laughable at first. I sang a song I didn't mind ruining for her while I did them....no Row Row Row Your Boat in this house anymore. And the game did become fun for her within two weeks. In fact she still likes to play it today! She admittedly is still wary of men with facial hair and white lab coats. Sorry Dr Ghaheri. And she definitely didn't like going back to his office for my revision. LOL! But she was fine. My revision was not painful. In fact I took ibuprofen exactly once and that was more because I thought I would need it. Bedtime the day of revision. I never did "need" it. Pain isn't a word I would use to describe my revision or recovery. My tongue was uncoordinated and that was super annoying when I ate for a couple weeks. And I yawned a lot for like weeks. *shrugs* Go figure. LOL! 

So just know that my experience is not unique. It's not rare. It's just that we don't always come back to post because when revisions go well we just move on. I would do revision again monthly if I had to. I am saving money to take kids 1-4 back to Portland some day. If you're on the fence remember my story. It was worth it. I still nurse my "baby" as she runs from thing to thing these days. She still stops to climb into my lap and ask for "nuh nuh Mommy". It's still her favorite thing, what she needs when she's tired or get hurts. We have that connection every day. My baby will wean.....we are likely more than half way thru our nursing relationship. And I will certainly cry at the close of this stage of my life. But I will never regret sticking it out those 8.5 months. And I will never regret revising her tie. Never.

~Jen Montz 

Huge improvement in the latch!

Latch pre tongue tie and and after, huge improvement for anyone considering having it done! No colic either as air was getting in through the bad latch!

~Zowie Burge

"Will revising an older baby affect breastfeeding?"

I had a preferred provider revise my 19 month old. He hasn't had any issues continuing to breastfeed, I've never really heard of that as an issue? If anything for many people it helps with the comfort of it. My son had acid reflux and gagged on a lot of things that weren't puréed. He was getting to the point where he would refuse to eat things he liked because he gagged on them, hasn't gagged since revision. His acid reflux is gone. I've also noticed a huge improvement in a few things I didn't even know if would affect, he now sleeps so much better and is a lot less clumsy. He used to fall a lot, say at least 20 times a day. Overnight after revision that stopped, now he hardly falls at all, because he lifts his head up when he runs.

~ DeAnna Reed Preciado 

It's made a HUGE difference in our nursing relation and his temperament...

I nursed Nolan for 3.5 yrs, yes YEARS so I assumed nursing Oliver would be a piece of cake, I was wrong. I kept saying something was different, it didn't feel the same, but I couldn't place it. Oliver had colic symptoms, would pop on and off the breast screaming at times, but eventually did nurse fine each time. He was a TERRIBLE sleeper and nursed constantly night and day. I never realized all of these things pointed to 1 thing. Finally, around 12 months of this I Googled it all and read an article I had read 8 months earlier, but bypassed it as I didn't think it was our issue. I assumed if there was a medical cause to all this surely our Dr or the 2 hospital lactation consultants would've seen that looking in his mouth. The next day I looked in Oliver's mouth and as clear as anything there was his lip tie. I took him to his Dr who looked and agreed he had a lip tie, but tongue looked fine and sent us to an ENT. The ENT saw a lip tie and also said tongue looked fine and told me about the procedure-Oliver would need general anesthesia and done in the OR. A week later I found the FB group for tongue and lip ties. I then learned that lip ties are accompanied by posterior tongue ties 98% of the time, but are easily missed. I also learned not all Dr's are highly trained in ties. Luckily while reading information I learned that one of the leading pediatric dentists in the world for ties is in Albany. Oliver got his lip and posterior tongue tie revised in January at 15mo by a laser, completely awake and was back in my arms nursing within 5 mins. It's made a HUGE difference in our nursing relationship and his temperament, he's a much happier boy without tethered oral tissue. I shared our story because I know a lot of people struggle needlessly with breastfeeding and if we can help just 1 Mama and baby by sharing our story then that makes us happy. If you think a tie is the issue, contact Dr Kotlow in Albany, you'll be wasting your time otherwise.

~ Nicole Miller

I was teased and tortured in school...

There are many types of procedures that people need in their life. Most of the time they are not pleasant. Recovery from surgical procedures can be unpleasant as well. But you just have to weight the risk vs reward. I have oral ties that cased major mouth deformities. I have struggled my whole adolescent life. I was teased and tortured in school. I would have rather had uncomfortable stretches as a young person than dealt with everything i did in my later years. If your child needed their appendix removed, would you not do it because it could be traumatic? I know it's a different thing, because ties are not life threatening. But it's still beneficial in a lot of cases.

I had a gap between my front teeth. I could fit and popsicle stick through it. Laying flat. I had a very narrow palate. It forced my teeth to grow on top of each other. Some of my teeth came in backwards. I had a terrible lisp from the tongue and a speech impediment. I had a hard time eating and couldn't drink from a straw at all. I also had a lot of gum inflammation and tooth decay. ALL of these things were a result of the tongue tie and upper lip tie. I had braces for 13 years and several oral surgeries. I had to wear a palate spreading device that was basically a torture device. I had to stick a key in it and crank it myself and it slowly pushed out my palate and broke it so it would be bigger. I still ended up getting the revision done as an adult. And I had to do the stretches. My mouth isn't perfect but it's better. I wouldn't have had all those issues if I had been revised. At the time it wasn't very well known about.

The stretches weren't painful. It wasn't pleasant. But not painful. I think babies don't like being held down and messed with and that's why they get so upset. Not because it's super painful. I think you just gotta try and make it a bonding attention filled minute instead of a "I have to do it" thing. If you are freaking out and worried and dreading it, they are going to react more negative. If you are pleasant and calm and make it a special moment, they will be more comfortable.

~Allie Maxey 

An adult's account of the post revision journey

I am now 6 hours post revision and the differences I'm feeling are already showing and surprising me! Those of you on the fence with revision your little ones because the doctor says it's "minor" and you might not see much improvement.. don't listen. Tied is tied, the symptoms are what matter. The doctor said mine was minor and I wouldn't see much change in elevation although looking at the before and after I can see significant difference and as the last 6 hours have gone, I seem to be gaining more and more extension and elevation as things loosen up. My revision was not quite complete as he felt my blood vessels were too close to the surface and he didn't want to risk hitting them, but even with that, the revision was 100% worth it (this was a preferred provider).

I can breathe easier (and I never even thought I was restricted before!) 

My jaw is looser and more forward. 

The tension in my jaw and neck are gone as is the slight headache I've had all week. 

And I haven't once yet caught myself clenching my jaw which is something I normally catch myself doing on an hourly basis. 

The procedure itself was simple. It didn't hurt even remotely and I took one Tylenol immediately after my procedure. It is sore but not painful. I'd say overall it just feels weird. My tongue and jaw feel like they have been pulled forward quite a bit and drinking water is interesting lol!

***

UPDATE - 16 hours post. I took a Tylenol before bed 8 hours ago because my tongue felt a bit stiff. 

The night went well, I feel like I slept deeper and my tongue definitely made more contact with the roof of my mouth. Hubby says I didn't snore!! 

Pain wise I feel great!! The wound itself does not hurt at all. Little sensitive if I touch it but moving my tongue and stretches do not cause any pain at the wound. The slight discomfort I am feeling is towards the back of my tongue. The best way to describe it would be when you work out really hard and then your muscles are sore and stiff whenever you move. I'm assuming this is from using muscles in my tongue that aren't use to moving so now they are getting stiff as they get exercise.

***

UPDATE - 4 DAYS POST 

I had a bit of reattachment over night.. you can see the red spots where I broke it up. I think I'll add in a night time stretch. 

Still going great. That stiff muscle feeling has largely resolved and the only discomfort is now a bring sting feeling while doing the sweeps. Other wise I feel great.  My jaw feels incredibly better. Headache still gone and still no teeth clenching!

***

I'm on day 8 now. The white scab is starting to disappear and nice pink flesh is under neath.

Days 5 and 6 HURT... I accidently scratched myself with my fork(not sure how lol) and it lifted up part of the scab on the right.. my entire right side of my tongue and jaw HURT with every movement lol.. 

Day 7 was back to normal. 

I am still doing stretches.. I do them about every hour. Just lift my tongue all the way up and touch all 4 molars and then try to tough my nose with my tongue. And then every 5 or so hours I do sweeps.. I've found my teeth make it hard to do sweeps side to side and have actually found small circular massaging seems to work better at breaking up and strands of reattachment and actually stings less. 

I slept weird last night so my neck is sore but I'm still not clenching my jaw and feel soo much better. Hubby has commented on my improved posture as well!

***

Day 12? I think.. lol

Still great. Last couple days have felt a bit tight.. I believe that's from the scar tissue so I'm stretching and moving often.. 

Pain has been completely gone since about day 9/10 unless I push too hard doing stretches..

***

2 weeks post. No chance since last update 😅 healing perfectly. Still doing stretches and massages.

~ Jocelyn McKervey

One week post revision updates

One week post tongue and lip revision. 

Henry was -

Crying non stop in his car seat 

Waking every 20-45 at night 

Sleeping 2 x 20 minute naps ALL day on a good day 

Terrible latch with bf

Feeding all the time 

Sick all the time 

Henry now -

Laughs and giggles in the car seat 

Wakes 3 times at night 

Sleeping 3-4 hours in the day

Far better latch 

Feeding less often but more effectively 

Still being sick 

He also now has a top lip rather than a line

~ Chloe Van Den Bussche

"Now he's my chunky little monkey!"

So it's been about two and a half months since Brayden got his tongue tie and lip tie fixed and the difference is amazing to see. Before he had so many issues drinking out of a bottle and nursing. Now he doesn't drink out of a bottle, but he is a pro at nursing and his weight finally started going up after having the revision. Now he's my little chunky monkey! ❤️ 

~ Kelly Foley

"I know something wasn't right..."

We began our story with misinformation, pain, and a lot of frustration.  From the very beginning I knew something wasn't right, but I was reassured that things would get better.  Some truly had the best intentions for our breastfeeding success, but it wasn't enough.  

I've gone through the stages of grief and have finally come to terms with that most of the problems we encountered stem from lack of provider education.  You don't know what you don't know.  When I sought advice within my immediate medical community, I was given an array of answers as to the root cause of our disfunctional breastfeeding.  Within the past five and a half months I've been told: she'll outgrow it and things will get better.  She has a small mouth. I'm not spacing her feeds out long enough.  I'm allowing her to use me as a pacifier.  I hold her too much/coddle her.  She's tight.  Things will get better at day 2, week 2, week 6, month 2, month 3 and then month 4.  She's 5 months, just start her on solids.  She is gaining weight just fine.  Pump more.  Bottle feed.  Allow her to skip a meal and she'll figure out the bottle.  Give her a pacifier.  Use a Haberman nipple bottle so she can gum on that instead of the breast.  Give her rice cereal.  If 100 kids were lined up, 50 of them would have a lip tie and her's isn't that severe to be causing a breastfeeding issue.  Why are you still breastfeeding?  You know you can stop breastfeeding, right?  This isn't the worst case I've seen.  Why don't you want to use formula, there's nothing wrong with it.  She has a lip tie, but not a tongue tie.  What's a posterior tongue tie?  Who told you she has that?  Let me clarify, what medical professional told you that she has that?  I took an oath to do no harm and cutting her lip tie would cause her harm and only benefit you.  There isn't enough proof that correcting her lip will improve breastfeeding.  [Insert awkward chuckle] - I have no personal experience with breastfeeding (male provider).  Her lip tie can be corrected with a snip of a scissors, but under general anesthesia because I've only done 4-5 of them because I was bullied by Lactation consultants at my last base.  She has a large lung capacity that creates a lot of negative pressure, which is why you're having so much pain.  You're almost done breastfeeding anyway.  She senses your anxiety at the breast and that's why she's so tense.  Is there really blood in her stool?  Show provider a photo of the poop - Wow, that's a lot of blood!  I'm not well versed on ties.  Only offer one breast per day and put zinc ointment on the other (pump and dump that side) - then switch the next day.  But she seems like such a happy baby.  If she were younger I would've corrected the tie, but she's too old now.  Why do you force yourself to breastfeed?  I can't believe you're allowing her to damage your breasts.  I would never allow her to do that.  I would've stopped a long time ago.  Are you really going to keep going?  How long are you going to put up with it?  Put warm compress on your breasts.  Use cold cabbage leaves.  Eat this, avoid that.  You should've roughed up your nipples while you were pregnant.  You're clearly exhausted and it's having a negative effect on your energy and ability to bond.  If you keep this up you're going to get depressed.  You're going to feed her again?  She just ate.  If you have the lip snipped now, she'll still need a revision when she's older.  Only allow her to eat for ___ minutes.  Try this position, try that position.  You have soft nipples.  Exfoliate your nipples.  Compress and massage your breasts.  Pain is normal.  Kids are hard work, that's why I don't have any.  You're still having problems breastfeeding?  

I know I missed a few comments, but in general it's been an uphill and infuriating  battle.  Everyday I choose to breastfeed my daughter.   It is a conscience choice that has unfortunately required a lot of mental and emotional sacrifice.  Physical pain is also real, but can be categorized and explained.  The impact of a traumatic breastfeeding experience is hard to define and I think even harder for some to empathize.

I spent a lot of time trying to figure it out... And once I felt like I found the answer I held onto my motherly instincts and kept seeking out a provider who would listen and look.  During my research I found Dr. Ghaheri.  He's an ENT who's devoted to breastfeeding medicine.  I sent him our story and photos of Avery.  He reassured me that she did have ties and that he would open a spot for her if I could get her to Portland.  We were on the next flight...  The naysayers in my local community were confused and shocked as to why I would go to such great distance, expense, and inconvenience to get the procedure.  I squashed any looming self-doubt and packed our bag and kissed my boys goodbye.  We landed on Thursday and we met with Dr. G. On Friday at 8 am.  We met with him and 3 other medical professionals who were shadowing.  They asked to hear our battle story.  It was therapeutic... a purge of doubt and immense frustration.  Then they carried her to the procedure room and I could hear her cry.... The procedure took less than 5 minutes and she was returned to me - we were given 15 minutes to nurse.  She needed to calm down, but latched within two minutes and I almost fell out of my chair.  Tug, tug, tug...   this is what nursing should feel like?  I  could barely comprehend it.  She nursed for about 10 minutes and then fell asleep.  Dr. G. and his colleagues came in to see how things were going... I couldn't have been happier to know that even with a projected honeymoon phase, this was it... Our nightmare of a breastfeeding story had climaxed.  Not only would we would get through this, we would be successful.  We thanked him with a bag of various goodies from Japan and headed out the door.  I've never walked lighter...  Later in the day we met up with Melissa Cole, IBCLC, RLC.  She was so patient and reassuring.  She showed us her version of stretches, which are tailored to an older baby... making things fun and playful.  She offered support and guidance on how to manage my breast pain.  She was icing on the tongue/lip tie release cake.  We left and I felt confident in my ability to continue our breastfeeding journey...  By the time we got back to our place, I was as light as a feather - doubts, worries, and negative self-talk were gone.  I released the pain and we fell into deep sleep together.

Less than 48 hours post release she made maintained meaningful eye contact for the very first time while breastfeeding.  I waited 172 days for that moment and my heart exploded.  I'm not a new mom, but in that moment there was a rebirth - now I get to enjoy being a mom.

~ Jennifer Jones 

The pictures probably say enough...

My Little Sweetpea was born in July. I was so confused right after her birth when she couldn't seem to nurse. With her being my first one, I had no idea how nursing was supposed to feel, but I was pretty sure there was supposed to be some sucking going on, or at least the ability to get my nipple in her mouth, somehow. One of the OB nurses tried to encourage her to suck with a squirt of sugar water and showed me how to use a nipple shield. We kept trying and I just decided she MUST be getting something, right? Just for peace of mind, an IBCLC on staff with the hospital came by to observe us nursing. She couldn't really tell what was going on, but said she thought Baby would probably get it figured out soon. 

Our first night home, I was up almost every single hour with my screaming baby. I finally decided "alright, I'll just sit here and nurse until she is totally satisfied." For two hours, we sat on the couch and she struggled with my breast. Finally she fell asleep. I was so discouraged. I knew nursing could be hard to learn and that new babies needed to eat frequently, but I couldn't tell that she was getting anything out of me. Sure enough, after a little sleep, she was screaming again. 

The next day, we took her to the pediatrucian's office, where we were informed that she had lost - in two days - 12% of her tiny birthweight. My baby was starving at my breast! I was heartbroken, and broke into tears in front of the nurses. They brought her a bottle of preemie formula and she downed a lot, and finally fell into a happy sleep. We continued into the lactation office. Weeks and weeks followed of weights feeds, pumping every three hours around the clock, finger feeding, and finally switching over to bottles with pumped milk. My life revolved around feeding my baby, with almost no time for anything else. 

Our excellent IBCLC had early on brought up that our baby might have a tongue tie, with her super high palate, clicking at the bottle, inability to latch, and the lipstick shape she left my nipples in after a nipple-shield-covered chomping session. At first my husband and I balked at the idea of any kind of surgery in our tiny daughter's mouth. After a few more weeks and research, though, and learning that it usually wasn't too painful, we were ready to consider it. Two doctors in town poked around in our daughter's mouth, said there could be a tie, but that they couldn't help us because at five weeks old, she was "too old" and would have to be put under general anesthesia (both of which points I now know to be nonsense!). During this time, our health insurance from my job, which I had quit to stay home with her, ran out. We decided to bite the bullet, fly thousands of miles to Portland, and pay out of pocket to have Dr. Ghaheri do the revision (he confirmed in an email that she had a PTT and probably a ULT as well. We were always impressed with how quickly he got back to us!). Our experience at his office was wonderful. He explained things thoroughly to us, was gentle with our baby, and the whole procedure, including taking her to the laser room, swaddling, and goggling her, took three minutes or so. She hardly cried, and I was able to nurse her instantly. What a different feeling it was. She was in some pain later that afternoon for about a day, which was hard. We used baby Tylenol, which helped.

Half a week of good nursing followed. A weighted feed at my IBCLC's office showed her transferring a lot! Then, as her mouth healed and soreness set in, she became resistant to nursing. She wanted nothing to do with my breast. She nursed for a little bit in the bathtub with me, but I could tell it was stressing her out. On my IBCLC's guidance, I kept offering the breast in a low-pressure way, trying to keep it a "happy place." Two weeks went by. I was close to giving up. I read on Dr. Ghaheri's blog about how the healing process takes place over about a 21 day period, and about how the area under the tongue will get firm and sore after 5-7 days, then loosen back up around day 21 post-revision. This encouraged me that things might get better shortly. We did our stretches around the clock - they were hard!

About three weeks after her revision, we tried an SNS feeder, and got her to latch momentarily. The next day, while lying down at home with the SNS feeder again, she finally latched for real. And then she didn't need the SNS feeder. Gradually, she got used to latching and nursing, and within a week or so and after some weighed feeds that confirmed she was transferring 4 oz., we had given up the pump and bottles and started exclusively nursing.

My husband and I got our lives back. I sanitized the pump and put it in storage. And my baby got to eat in her mommy's embrace. She LOVES nursing - though now, let's be honest, she would also love to get her mitts on whatever's on our plates. Last night, we let her spend some time squishing and smearing avocado on her face.

I am so grateful for how things worked out for us, and for the dedicated medical team we had on our side. I bring up tongue tie whenever I feel it might make a difference in someone else's life, and am committed to sharing with other moms. Please, if you're having a hard time with this, don't give up! It can get so much better. And don't waste your time and money, and most importantly, don't risk your baby's well being going to a doctor unless you're positive they understand tongue tie!

~ Emily Gebel 

100% worth it

I wanted to share a post TT surgery success story for any Moms that are out there wondering is it worth it. You rarely hear the positive outcomes and question the process in the beginning. 

YES!! 100% worth it. Only from a doctor that knows what they are doing. We went to Dr. Brian A McMurtry who was amazing. He is very knowledgeable on the topic. Lessened our fears and encouraged us to continue with the process. He is in the Charlotte NC area if anyone needs assistance in the NC/SC region. 

My son was a "slow eater" from the moment our BF relationship started. He was sent to the NICU immediately after birth because my water broke and I was 11 days late. There was a trace of meconium; they wanted to make sure he didn't inhale it into his lungs. We didn't get him until 5 hours later. That prevented the instant skin to skin contact I was dying for and made our first time BF pretty hard. The lactation consultants at our hospital never checked his mouth so we were sent home struggling with him eating. Two days later we had a 24 hour round the clock nursing session feeding him every hour and half because his weight had significantly dropped. Mind you he ate for almost 50 mins each time...chomping instead of sucking. It was absolute torture. I would not wish that type of pain on an enemy. I deal with pain fairly well but this was insane. I contacted my local La Leche league for help. Still no mention of TT. Just various random tips. Wake him up, burp him between, switch sides more often, nudge his cheek, blah blah. 

At 7 weeks I was on the verge of giving up. Every nursing session was incredibly painful and I was so mentally and emotionally drained I was at my wit's end. I dreaded him eating. I finally made an appointment back at the hospital with a certified lactation consultant and the moment she looked at my destroyed nipples she knew. She checked his mouth and sure enough said he needed to have the TT surgery. She referred us to Dr. McMurtry and luckily they had a cancellation with an opening the next morning. 

This is why I'm posting to encourage you to push through and do what you are told exactly after the surgery. The stretches are hard. It seems like you are really hurting your baby when they cry. Keep going. You do not want to put your babe through the surgery again. I did not notice great latch improvement until about 15-16 weeks. He did immediately nurse faster because he was able to successfully suck and transfer the milk properly. It took much longer than that to nurse with no pain at all. 

We are now 21 weeks exclusively breastfeeding and I'm so glad we had the surgery and fought through the pain. He still nurses 5-7 times a day depending on my work schedule and it is now 100% pain free for me. I can actually fall asleep while he's eating now. I'm so happy we pushed through as a family. Stay positive and keep positive family and friends around. This page (https://www.facebook.com/groups/tonguetiebabies/) and the support from all the Moms and doctors was very helpful for me too. 

Adding photo for cuteness and attention. Good luck Mamas!! 😊❤️👍🏼

~ Meredith Lowder

"More beautiful than any painting..."

When my son was born, he had problems regulating his blood sugar and I was told that I either needed to allow him to have a bottle of formula or he would be sent to the NICU.  Of course, I wanted to keep him out of the NICU so he was given a bottle. When I was finally given the chance to nurse him a few hours later, he wouldn't latch.  Every doctor, nurse, and lactation consultant told me that the reason he wouldn't latch to my breast is because I had given him a bottle and now he didn't want to work for my milk. I was never able to get him to latch, so for the first 2 months of his life, I exclusively pumped. 

Unfortunately, he still struggled to eat. He would scream and gag and cry and throw up every single bottle. EVERY.  SINGLE.  BOTTLE.  For 2 months straight, I watched my tiny little baby legitimately screaming in pain to do something as simple as eat. After countless trips to the pediatrician, he was finally diagnosed with acid reflux and put on zantac. Three weeks later, he hadn't gained a single ounce.  This is when our pediatrician told me that he wasn't tolerating my breast milk and needed to be on formula for acid reflux. We made the switch and he was also put on prilosec in addition to the zantac. 

He slowly started to gain weight, but would still cry and scream at every feeding. Everyone I talked to... Our pediatrician, my sisters, my own mother, made me feel guilty. "Babies cry. You're just being dramatic." They said. Every now and then I'd start to doubt my instincts and begin to think that maybe they were right. Maybe I was just a terrible mom who couldn't handle a little bit of crying. 

But I'd snap out of that quickly, usually at the next bottle, as I watch my beautiful, innocent child gag and choke and wither in pain while he ate. His beautiful blue eyes looking into mine begging me to help him. I couldn't handle it anymore. At 4 months I switched pediatricians.  

Our new pediatrician seemed much more concerned and sympathetic as I told her what was happening. She instantly maxed out his doses of zantac and prilosec. It actually helped, and by the next month, my little dude had a huge weight gain. The crying and struggling to eat was still happening, but not as intensely and not as often. 

However, once he turned 6 months, it was like we were back at square one. He'd fight me through every bottle. He absolutely could not handle solids or purees.  Again, my family, unintentionally, made me feel like it was my fault. "Kelly you hear you feed him purees, that's how he's going to learn to eat. He's so bad at it because you won't feed him." So I kept on trying. His evening meal (a 6 ounce bottle and a small plastic tub of some type of baby puree) would take about an hour and 45 minutes. About 45 minutes for the 6 ounce bottle, and another hour to TRY to get that baby food in his tummy. It wasn't that he didn't like the food. He seemed to love it. He'd open his sweet little mouth up wide every time that spoon got close. But as soon as the food went into his mouth, it would slowly leak out his lips.

Fast forward to two weeks ago. A very dear friend of mine, who's beautiful baby had been having some of the same symptoms as Harrison, took her daughter to a pediatric dentist who discovered and lasered her lips and tongue tie. After talking to her about it, I decided it wouldn't hurt to have Harrison checked out, so I called and made an appointment with one of the preferred providers.  

Last Tuesday, almost a week ago, Harrison, at 7 months old, had his class 4 lip tie and class 3 posterior AND anterior tongue ties lasered. By that evening, our lives had changed. He is now drinking 8 ounce bottles in about 5 minutes. Not a single tear. Scream. Cry. Gag. Back arch. Choke. Vomit. Not once. 6 bottles a day.  For 6 days now. 36 absolute perfect, beautiful, wonderful bottles. You can never realize how beautiful it is to watch your son eat painlessly unless you watched him struggle for 7 months before. It's more beautiful than any sunrise or sunset. More beautiful than any painting. 

Last night, for the first time since the revision, Harrison had some pureed carrots.  He ate them as tears heavily flowed down my face while I watched him take spoonful after spoonful, and easily swallow them down, with nothing spilling out of his perfect little lips, this time his eyes thanking me, instead of begging me for help.

~ Kelly Kulak

A tale of three boys

Once upon a time there were three sons named A, J and T.  A was born in 2007.  I was born in 2011 and T was born in 2015.  A, J and T have very similar birth stories.  Each were born a week late, induced, epidural.  A and T were vaccuum assisted birth and had jaundice.  Otherwise, births were unremarkable.

All three boys had very similiar feeding stories too.  Mom wanted to nurse more than anything.  Each son struggled to latch, weak suck, poor milk transfer.  Mom finger fed, used an SNS, nipple shield, pumped, bottled fed and used bottle therapeutically to strengthen suck, saw IBCLC repeatedly, working with feeding OT.

All three boys struggled to gain/maintain weight and had regular weight checks.

All three boys had "silent reflux"

All three were "floppy babies" with low tone.

A and T had torticollis

Mom battled thrush and mastitis twice with each son.

Mom was stubborn and refused to give up.  A finally learned to latch at 3 months old.  J learned to latch at 2 months old and T learned to latch at two months old.

We'll get back to Ts story in a minute.

A and J continued to have low weight even as they got older.  A is in 15 percent and J was FTT at a year.

A weaned at nine months and was supplemented with formula.

J weaned at 28 months, no formula.  However nursing rewuired alot of effort and he was burning more calories than he was taking in.

A and J achieved physical developmental milestones later than average; rolling over, sitting up, walking, etc.

As he got older A had troubled with recurrent fluid in his ears, and noisy breathing both of unknown origin.  A also has never been able to say L or TH sound..  He snored and breathed with his mouth open

As he got older J was a picky eater.  He gagged, held food in his cheeks, spit out chewed up food and flat out refused to eat other things.   He was a messy eater.  He couldnt remove all the food off his spoon and didnt open wide to take bites.   J also struggled to speak.  He could only say vowels and glotteral sounds.  Additionally J developed some sensory sensitivities to light and sound..  Joey was always super sweaty when he slept.  He snored and breathed with his mouth open.  He battled frequent constipation

Mom couldnt shake the thought that she was missing something.  Mom stumbled into a website about tongue tie.  Multiple provides (ENTs, dentists, pediatricians, OTs, IBCLC, dentists, etc) had checked both A and J over the course of their lives and either told mom they were not tied, or said their mouth, tongues, etc were fine..  Mom had taken them at their word.

All that changed in 2014 when mom clicked on a support group about ties and read the symptom list.  All thr pieces fit.

J had his posterior tie revised at 3.  Immediately his gagging and spitting out food stopped.  Immediately the night sweats and snoring stopped.  Immediately his speech sounds increased.  Immediately his digestion improved.

J began speech therapy right after revision.  Later he also began OT/CST for low muscle tone.  He also just began feeding therapy.  His recent speech assessment showed that he does not use his soft palate to direct airflow.  It is possible this is a compensation that occurred from not being able to lift his tongue for so long.  His palate is also high and hard...again likely from his tie.  OT has helped him overcome his physical weakness and tension throughout his body, tension that likely was at least in part due to his tie.  Today his in feeding therapy to overcome food aversions that developed from eating being unpleasant, gagging him and even causing him pain while he was tired.  Additionally, he has poor oral tone from not being able to use or move his mouth properly for so long.  He now has good tongue movement and continues to make improvements in therapy.. Revision has greatly improved his life.   But mom can't help but wonder how different things would be if his tie had been revised earlier, especially when she watches T.

Know better, do better.  When T was born mom knew what to look forward.  Even though only 1 of the 3 IBCLCs she saw agreed with her that he had a posterior tongue tie, mom insisted on a referral.  When T was a month old he was revised.

Just like A and J, T had weak suck, poor latch, poor transfer, low weight gain, snored, open mouth breather., thrush, reflux, floppy baby.

T sweated at night and was so congested mom slept sitting up with him because hed cough and gag and struggle to breath at night.

T was 15 percent for weight the week before revision.  One month after revision he was 90 percent for weight!  T went from mainly been bottle fed to one month later exclusively breast feeding.  The snoring stopped, sweatting stopped and congestion stopped.    T began CST a month after revision.  

T graduated CST at 9 months old.  He shows no signs of torticollis.  He is incredibly strong.  Palate is low and spread.  He had perfect balance.  His facial symmetry is good.  Hes hit all physical milestones early.  He skipped purees and moved straight to solids.  He easily and joyoustonguewhatever mom eats.  He never gags.  Hes a clean eater who eats every drop.  He doesnt snore or mouth breath.  No sign of reflux.  Good digestion.  No sensory sensitivities.  He vocalizes non stop and can make all sounds.  He has great tongue movement.  And he loves to nurse.

In this tale of three boys who started life with similiar stories, it is clear to me the revision plus CST has made all the difference.  It is literally life changing.

First picture is right before revision.  Note the skinny legs.

Second picture is a month after.

Last is diamond wound.

~ Michele Pilon

"Don't quit on a bad day..."

"SUCCESS STORY

Disclaimer: Long post ahead

We had our third daughter on leap day this year. I had breastfed my other two children for about a year each with relatively little issue…I had mastitis twice with #1, thrush with #2, but nothing too crazy. I felt breastfeeding would be easy with #3 since I’ve done it twice already- in other words, I felt really prepared.

PROBLEMS WITH WEIGHT GAIN AND TRANSFER

When baby was about 10 days old, we took her to pediatrician to weigh her and she had lost weight and wasn’t really close to birth weight. We were advised to come in two days later and again, she had lost weight even from the last visit. I was told I needed to meet with a LC to observe a feeding and she took a total of 1.5 oz in 25 minutes. 

The hospital LC also noticed her shallow latch (even though her lips looked good) and NOTHING I was doing could keep her awake. I was told to bottle feed her either formula or pumped milk and I remember leaving the appointment feeling discouraged. I distinctly asked “If my baby takes a bottle at this age, is there a good chance she would eventually get back to nursing?” Her response: “Not that I’ve seen.”

We followed up with our pediatrician again a few days later and I let her know about the potential tongue tie the LC spotted, but our pediatrician didn’t seemed concern about fixing it and said that a revision “probably” wouldn’t help. I had the opportunity to fix this issue at 2 weeks, but cancelled our appointment because I felt it was unnecessary per our pediatrician’s guidance. I know she meant well when she said it, but she had essentially said “Your baby has a laid back temperament, is a lazy nurser, and you’ve tried really hard, but formula is just as good”. (Note: We did end up using formula and I have nothing against it. I personally didn’t want to quit so soon)

TRIPLE FEEDING

I wasn’t satisfied with what we were being told because we were still having issues nursing so we met with an IBCLC outside of the hospital for a weighted feed and she noticed the same issues. At this point, we were advised to do “triple feeding” because she wasn’t gaining well and for those who aren’t familiar…it’s literally 3x the work. Our triple feeding consisted of 30 minutes of nursing, 15 min of feeding an extra 2 oz via bottle, then 15 minutes of pumping to maintain my supply. I did this EVERY 3 HOURS. I literally had no life except feeding this baby…all the while, my older two daughters needed me. I was getting no sleep, my nipples hurt, I couldn’t go anywhere because I felt stuck to this machine….I was, in short, SURVIVING.

At this point we went to see another IBCLC and again did a weighted feeding. At 3 weeks old, she took about 40 minutes to transfer 1.75 oz. My supply had tanked because baby wasn’t transferring so she suggested I power pumped to build it back up. I spent 3 days pumping around 10-12 times a day…I literally did nothing but pump for 3 days and I felt miserable, on the brink of PPD. This IBCLC also noticed a potential tongue tie as well so I started researching like crazy and ended up finding the Tongue Tie Support group on Facebook.

REVISION AND SHORT TERM GOALS

After spending a significant amount of time reading old posts on the support group, I had decided we needed to do a revision. We had the revision done when baby was 5.5 weeks old and I had truly expected things to go much better after that time, but they still didn’t. Her latch still hurt and she still wasn’t transferring well. I was convinced that with her tongue unrestricted, she would stay awake during nursing because she didn’t have to exert so much energy to draw milk out. NOPE. During this time, I was only nursing once a day because that’s all I could tolerate in regards to pain and I remember thinking that I needed her to still remember what nursing was.

I was still pumping and we were still bottle feeding (using paced feeding and cold breastmilk to help her differentiate between mom and bottle). I remember wanting to quit EVERY SINGLE DAY, but I told myself “don’t quit on a bad day” and believe me, there were a lot of bad days between all the exhaustion, hormones, mom guilt, hubby out of town, etc.

I remember making short-term goals because that was the only way I could persevere- I told myself “I can make it until 6 weeks of this because babies normally have a growth spurt around 6 weeks”. Still no major changes in nursing at 6 weeks (it still hurt and caused vasospasms and baby was still falling asleep)

I purposely made appointments with an Osteopath for CST and IBCLCs just so I had something to look forward to as my goal. After talking to another mom who had very similar issues, she mentioned that “most” babies will nurse by 3 months if you can keep pumping and manage your supply. Through her advice, 3 months became my new goal.

PUMPING GOT EASIER…ERRR…MORE TOLERABLE

Pumping was my new reality and I really had to make the best of it, so over the course of 3 months I had done a lot of things to make it more efficient including:

1. Refrigerating pump parts each time and therefore only washing once a day.

2. Using a hands-free pumping bra so I could work on the computer and pump. 

3. Rented a hospital grade pump so it wasn’t as loud and I could talk to clients on the phone while pumping. (Side note: For me personally, the hospital grade pump didn’t draw out more milk or draw it out more quickly, but it was a LOT quieter)

4. Learned to pump while driving- This consisted of loading my car up with pump parts, cooler, pumping bra, and hooter hider.

5. Eventually, I was pumping while simultaneously bottle feeding which made feedings only 20 minutes long (as opposed to 1 hour when I was triple feeding). I would situate the rock n’ play next to my pump, then set up, then pick up baby and fed her awkwardly while avoiding all the tubing and bottle/flanges.

As much as I hated it and still preferred to nurse, we were in a good rhythm. I was producing about 35 oz/day and she was eating between 20-24 oz a day so all that surplus eventually led me to a freezer stash of around 600 oz. I felt ok about quitting at 3 months because I knew that I would have enough frozen milk to give her some breastmilk until she was at least 6 months old. Plus, I feel I had tried every single thing by that point.

THE 3 MONTH MARK

We were inching in on 3 months and I had told myself that I would switch over from pumping/bottle feeding to nursing cold turkey. When I set out to quit pumping at 3 months, I was dead set on it and so the day couldn’t have arrived sooner.

It’s amazing how one nursing session that goes really well can encourage you, while one not-so-amazing nursing session can crush you.

It was on a Sunday and I just went for it…stopped pumping. At first, she was eating well because I was so fully engorged, but as my supply dwindled down, she stopped trying as hard. There were SEVERAL times where I thought I might go back to pumping to try to build up my supply again, but I had to talk myself out of going down that vicious cycle.

It was about 8 days into quitting where my supply had reached the lowest it had ever gotten. We were alternating between nursing and formula feeding. I could feel myself weaning and though it was sad, I was ready to be done with torturing myself. Then at some point over the next few days…something changed.

She started to nurse better and I think it helped that when she woke up in the middle of the night, I nursed her simply because it was easier than making a bottle. Even among nursing, there were still several instances where I would have to squeeze milk in her mouth to get her to actively eat, but she was transferring enough. We slowly started to use less formula while she simultaneously started to nurse better. I also noticed that when she was “nursing” in her sleep, her chin looked like it was suckling correctly vs. the chomping method she had for the first 2 months of life which caused me so much pain!

I was so excited, but I knew we weren’t out of the woods yet. I still hung onto the baby scale and mostly nursed her at home so I could monitor her intake.

She will be 4 months at the end of the month and for the last 12 days she has exclusively nursed…as in no bottles. I’ve even started to venture out and nurse her in public knowing that she is transferring and eating well which has brought me a great sense of freedom.

CONCLUDING THOUGHTS

1. I think the tongue revision helped, however, I think age made the biggest difference for my “lazy nurser”.

2. I learned more about breastfeeding than I ever did with my other two combined including vasospasms, paced feeding, symptoms of tongue tie/lip tie.

3. The online support groups via Facebook are the reason I made it this far. Ask for help if you need it- I did!

4. I’ve never worked harder for anything in my life, but now that we’re on the other side…the reward is so sweet.

5. I seriously often doubted if my baby would nurse and it was hard for me seeing other moms with easy nursing relationships- I struggled a lot with this, but I want to encourage other moms who are going through this stage currently….I see you, I get it, and if you have it in you, press on!

6. My nursing relationship with this baby still consists of me having to squeeze milk in her mouth to encourage her to eat, but at least I’m not pumping.

7. Us moms are trying our hardest so don’t beat yourself up if you can’t get your baby to nurse. We were fortunate enough that we had the money to spend $700 on the revision procedure, but I know that for some people, that’s not a possibility. 

Thank you for reading and for your support, I hope this encourages someone out there!"

~ Cam Vacek