The upper lip ideally fans out over the breast in order to help the baby grasp and latch deeply. Have you thought about that before? Babies hold the breast with only their mouths, although they often place their cute little hands on either side while nursing -- but those hands aren't holding the breast, their mouths are. Lip ties frequently come with tongue ties, and if you have been told your baby has one, make sure your provider knows how to check for the other. The baby pictured here was not able to nurse despite his mama's best efforts (she extended pumped for him), and at almost 2 years of age, his lip tie was noticed.

For more information on upper lip ties:

Advocates for Tongue-Tie Education's Fast Facts

Tell Me About Tongue Ties! Breastfeeding USA

Diagnosing and Understanding the Maxillary Lip-tie as it Relates to Breastfeeding, Dr. Lawrence Kotlow

Back in June when we took Ezra to see Dr. Jesse, it was just my husband, Ezra, and I. I had this picture on my phone, and on a whim, I shared it with Dr. Jesse to show the array of palates and tongues we had left at home:

"You see this here?" he pointed to my (then) 13 year old's picture, "His tongue-tie is pulling his bottom two teeth in." 

Now after my discovery of Ezra's mouth, and then our science project of comparing the other kids via pictures, I was amazed to see Jacob had a tongue-tie. He nursed with ease until the day he quit on his 4th birthday; well, I should say, after his stint in the NICU for 2 weeks, plus a couple of days figuring things out in our own time and space out of the hospital, he nursed with ease. I thought that was it, end of story -- nursing went well, so we didn't need to worry about it now. But I had before noticed in his otherwise lovely mouth of mostly-straight teeth, those two troublesome bottom guys...

In hindsight, a tongue like that could have caused a few issues we noticed earlier but were clueless about. Jacob was late to start solids. I offered him rice cereal at four months (it is important to know rice cereal isn't the best first food for babies, I was following mainstream guidelines and assuming since it was marketed for babies, it was best for babies; for more info about that, read here). He gagged so I figured he wasn't ready (again, I was uninformed and looking at the calendar and not the baby when determining if he was ready for food). I would wait a couple weeks and try again; same response with additional behaviors such as coughing, tongue thrust, clamping his mouth shut, and turning his head away. After a few more attempts, I lost interest and let my little sister (then 12 years old) eat it all. When Jacob was 9 months old (and still had no real solids experience) we were eating at our favourite Mexican restaurant. Jacob was large -- 9 pounds, 8 ounces at birth, 20 pounds at 4 months, 30 pounds by a year -- and because of that, we often placed him in the high chair while we dined to keep him at our level and engaged. He never acted interested in food, though. This particular night, he was madly waving his arms and shouting at us, so I offered him a bite of refried beans. Surprisingly, he took the food into his mouth, kept it in, swallowed, and wanted more! We were excited, but it still wasn't full-speed ahead with food -- he didn't really start eating food until about 14 months. 

Tongue-tied babies can often be slow to eat solids or have other food issues, but I just assumed he wasn't ready and I didn't worry due to his size. I do believe Jacob limited himself to foods he could easily eat and swallow and this shaped his preferences -- he is still a picky eater, and I fully attribute that to his anatomical make-up and how he compensated to ensure he didn't choke or suffer other discomforts while eating.

The second sign of how he was being affected by his tongue was the fact that he had extensive decay on his top teeth, necessitating caps at 18 months old. Having a tongue that doesn't move in a full range can cause decay, as the tongue isn't able to move between the teeth and the lips up at the gumline to sweep food out. Coupled with an upper lip tie (restricted upper lip), pockets can form and food and bacteria can become trapped, thereby causing decay despite the best oral hygiene practices. Again, at the time we thought it was a fluke, genetic thing, especially since he hadn't started solids until later. Now I see it makes sense. In light of his history, I recently scoured all the pictures I have of him to try and find evidence of his tongue-tie as a baby -- this is all I have come up with:

Ties, like black holes, continue to exert that force on the mouth and the teeth if they aren't resolved or released; case-in-point: my husband's parents spent thousands of dollars on orthodontics for him, to only have his bottom teeth move once the braces came off and stopped holding the teeth in proper alignment. I could further prove this with a picture, but my husband doesn't readily allow me to share the inner workings of his body on the internet :). 

We decided to take yet another trip to see Dr. Jesse and have Jacob's tie revised. We made an overnight trip out of it, with an adventure to the La Brea Tar Pits attached.

Dr. Jesse welcomed our whole entourage into the treatment room. While we waited, he ran in to get the laser and said, wheeling it away, "Someone has a canker sore that's needs zapping!" and left, happy to remove this thorn in a patient's mouth.

Dr. Jesse came back in to greet us, look in the other boys' mouths, and then get Jacob seated in the chair. He visually and digitally assessed Jacob's tongue function, saw there was no upper lip tie, and explained what he felt we should do for optimal restriction release. Jacob received a numbing shot that needed a few minutes to take effect, and we waited and chatted. 

Since I held Ezra during the last procedure, it was Brad's turn to hold Jacob (just kidding -- Jacob is 6" tall and wears a 13 shoe). I did say that, though, and it got a good chuckle. What I intended to state was, since I held Ezra and wasn't able to watch the procedure in real time, I stood close to Dr. Jesse's shoulder to get full view of the lasering. It makes sense, but I wasn't quite prepared, that it took about 5 soild minutes to keep swiping the laser over, and over, and over the frenulum. Dr. Jesse would then readjust, regrip, and reapply the laser; soon I realized I didn't need to watch the whole thing. The other children were curious, and Dr. Jesse's assistant invited them over to both have a turn.    

After the procedure, Dr. Jesse made sure all the boys (minus Ezra) received popsicles. We took care of the billing ($80), and bid Dr. Jesse farewell. We went in search of lunch and ended up at BJ's Brewhouse. Jacob ordered pizza and ate like a champ, mostly...but as he neared the end of his pizza, his eating got slower. Finally he pushed the last bit away and said he was done. I looked at him an realized he was white as a sheet! That's when it hit me:  I should have given him ibuprofen before walking out of Dr. Jesse's office! I let the pain come at full-force as the numbing shot and laser affects wore off. I quickly offered him some analgesics and we hit the road toward LA.

We stayed in a hotel, and Jacob and I found a Target to get some provisions (popcorn, hot chocolate, snacks). I threw some Anbesol into the cart, hoping it might help. Jacob threw some popsicles in for good measure. Back at the room, we tried the Anbesol (it stung mightily -- he went and washed it out!), and he decided to keep up with the ibuprofen and popsicles. He had a hard time sleeping that night, but we were away from home, and the distractions were minimal.

The next morning his mouth really hurt, but he was able to drink some hot chocolate with his brothers: 

We headed off for the day and had a great time at the tar pits. Jacob did experience pain intermittently, and we kept up with the ibuprofen (see a theme here?). For lunch we went to the Cheesecake Kitchen. Jacob ate a hamburger okay, and then the five of us shared three pieces of cheesecake (he had no trouble with that!).

For the next few days, his mouth hurt. Looking back now and reading other adults' accounts of their revisions, I wonder if we could have dissected a bit more what the pain felt like to get to the root of what might have been causing that sensation. As in childbirth, when you throw all the "pain" together in bucket, it is read as PAIN, but when you break down where the sensation is coming from it not only makes it easier to cope with, it helps us to know why it's there. I am sure he was feeling soreness at the site, but was he also feeling tenderness as his tongue moved in ways it never before was able? Was any of that the after-effects of tensing during the procedure, which caused lactic acid build up he was feeling now? Referred pain signals to areas that weren't even affected? All we knew was, he called it pain, and we treated it as such. There is science behind controlling pain for speedier healing, so I am not opposed to doing what works for him. Being that he is the size of a grown man, his frenulum was thicker and required more time to release.

I am trying to get him to write up his experience in his own words, but that may take some bribery on my part, or extra credit on his English teacher's part. But who knows, maybe it'll turn up and you can read how he felt about being tongue-tied and then released?

We decided to see Dr. James Jesse in San Bernardino, CA. It was a four hour drive for us, and to ease the stress of travel, Brad, Ezra, and I drove down the day before and stayed in a hotel.

During my Virtual Adventures in Tie-Land, I met a LLL Leader and IBCLC who lives about an hour south of me, Julie Huisjen.    She was the one who really planted the idea of visiting Dr. Jesse and seeking laser revision for the ULT and PTT, as opposed to scissors for the PTT alone. As much as I didn’t want to travel that far, I came to the realization that a trip to Dr. Jesse was the way to go. As a bonus, Julie asked if she could come and observe the procedure, and I was pleased for the opportunity to meet her and have additional support.

Julie was waiting for us when we arrived at the office, and although we just met, I was grateful for her presence. When Dr. Jesse came to our room he was friendly and up-beat. He examined Ezra and agreed that we could benefit from having the ties revised. He explained the procedure, answered questions, and was appreciative of Julie’s and my breastfeeding background.

I sat in the dental chair with Ezra’s head on my left shoulder. I held my arms over Ezra’s chest, thereby pinning his arms but allowing his feet freedom to kick. Dr. Jesse numbed Ezra’s mouth, and then we sat and chatted for a few minutes to allow the anesthetic to take effect. Dr. Jesse was very personable with a great sense of humor. We asked to video the procedure and Dr. Jesse welcomed it -- that way I could watch it later.

Two assistants helped, one holding Ezra’s head behind us, and another to the right of us who was holding the spit-sucker (I am sure there is a technical term for that!). Once started, the actual procedure took less than 5 minutes. Ezra cried and moved a lot, but I knew he was probably more bothered by the restraining of his head than the laser surgery happening in his mouth. There was a little blood to be blotted with gauze, and that was it! 

I sat up and looked at my fat-lipped baby as Dr. Jesse said, “From here on out things will get better.” I asked how soon I could nurse him, and smiling Dr. Jesse answered, “Moms like you nurse right away.” We tried, but Ezra’s numb mouth made latching difficult. I decided we would try again later. Dr. Jesse said babies cry for about 8 minutes post-revision, and then they are usually okay. We happened to have the appointment before lunch, and Dr. Jesse was kind enough to talk to us for another 30 or 40 minutes, generously sharing information, stories, and jokes.

We went to lunch and I nursed Ezra for the first time. I could already see a part of his upper lip turned out that I had never seen before – it wasn’t a huge flanging or anything, but it was something. I didn’t notice relief, though – if anything it felt a little tighter (read: worse).

Ezra was acting fine when we hit the road and headed for home. 30 minutes from home he began crying inconsolably. We stopped at Costco and I tried to nurse him in the car. He would attempt to latch, but then he acted like his mouth hurt (which I could believe!). I was worried about him not nursing, but they told me at the office he might not want to nurse too much in the first 24 hours, so it wasn’t a surprise. I decided at that point to give him Tylenol, we walked around Costco for about an hour, and then he settled down to nurse. I still couldn’t tell a difference in my pain level.

I gave him one more dose of Tylenol later that evening, and by the next afternoon, he seemed back to normal. Dr. Jesse’s office instructed us to stretch the upper lip and sweep under the tongue once every hour Ezra was awake. We went to a chiropractor the next day, and I have never seen Ezra so melty afterwards, if that’s a word.

Ezra’s “reflux” stopped almost overnight. He would still spit up, but it was nothing like it had been before. His clicking was mostly gone. That strange (cute) way he had of chewing up to latch on the nipple with a grimace on his face was gone, as was his way of sliding off the nipple while nursing. He seemed to be doing better, but I was still waiting…

Sometimes he didn’t mind the stretching, other times he hated it. One thing I figured out was to do the stretches as far away from a feeding session as I could, or we might have a hard time nursing afterwards. 

One week passed and although Ezra seemed happy, I wasn't noticing anything much more than not having to hold the breast for him every time he nursed. I am so grateful for Tongue Tie Babies Support Group, there I received realistic ideas about how things might shape up for us over time. Although some women note instant relief after their babies' revisions, it seemed to me for every one who had that experience, there were 4 women who said it took many weeks for full effect.  If I hadn't known that, I would have felt the surgery was a waste of time and money.  So I kept up with the exercises and tried to encourage wider and deeper latching.

Speaking of money, in my haste to get this done I didn't ask Dr. Jesse's office the price of the procedure or what my insurance might cover. As Ezra was a newborn, I hadn't thought to sign him up on our dental plan, which would have covered the surgery. I was surprised to have to pay out-of-pocket for the surgery -- it was $400. I was happy to do it (although I will be even happier if our medical insurance reimburses us some!).  Realistically, that is an affordable price for this procedure, in my opinion.   

Two weeks passed and I wasn't feeling better.  The nipple shape still showed some compression stripes after nursing.  Before the revision, it was more painful to nurse on the left side; after the revision, it was more painful on the right side.  This was not a miracle fix for me.  Again, I was uplifted by the stories of other mothers; I tried to be patient, continued with the stretches, and kept correcting shallow latch-attempts.

Around three weeks, I started to feel a shift.  One thing I have done since the very beginning with Ezra was talk him through our nursing sessions. Although this may seem silly, as in our family we already decided our dog is smarter than our baby (for now!), there is evidence that shows babies can learn when moms talk to them (parent–infant synchrony, or affect synchrony).  The left brain is the technical, watch-the-clock, math side, while the right is the emotional, easy-breezy side. It isn't really possible to get our babies to learn algebra or memorize a linear sequence of events, but it is possible for babies to absorb behaviors and coping strategies connected and displayed by their mothers or other caregivers. It's like a baby's first positive self-talk -- I let him know, not only with words but also with emotions and facial/body language, how we can improve our relationship.  It can't hurt, right?  I am not attributing our breastfeeding success entirely to this concept, but I feel it certainly can't hurt!

How this looks:  When Ezra would latch well, I would praise him and relax and smile.  If his latch needed adjustment, I would say something like, "Okay, let's try that again.  Open you mouth wider so it doesn't pinch." 

The most fun for talking and nursing was in a laid-back position while I was on my bed.  I would lie in bed and prop Ezra's upper half on my upper half, with his legs basically standing on the mattress. Babies have about 20 reflex responses that kick in when they are on their bellies as opposed to their backs, and one of these is called, aptly, "stepping."  As Ezra would step to get closer to the nipple, reaching it chin first and then latching over the nipple with his upper jaw, his upper lip would naturally be in an ideal position to flange open. We were also en face, ready to engage and exchange smiles, head bobs, and happy eyes. 

By four weeks (two days ago) I could safely say I believed we were cured.  So inappropriate in an essay, but I feel that statement deserves a smiley face.  This is where I go all Dorothy on you to figure out what I learned from my journey:

1. Find support.  It wasn't until I connected with the Facebook group that I found experienced, real-life helpers in my area.  Not only was this beneficial in assessing our situation, it also led me to the best practitioner for the job. If you haven't already met with an IBCLC experienced in ties, a group like Tongue Tie Babies Support would be a good place to ask for referrals in your area.

2. Get a second opinion -- and a third, and a fourth -- until you feel your gut agrees with what the professional is telling you. You have inner wisdom -- use it!  Everything we are told is filtered through someone else's perception and experience. The first idea to pop into one practitioner's head may not be the same thing to pop into another's. In healthcare, the difference between wrong and right can sometimes be a simple difference of opinion.

3. Don't judge a book by its cover.  And don't let your healthcare practitioner do the same.  This means, the appearance of the tie/s shouldn't be more important than how the tie/s affect breastfeeding for mom and/or baby. The first doctor we saw (who was also an IBCLC) said Ezra's tongue-tie did not look severe, but due to the clicking, sliding, and pain, warranted treatment.  If your practitioner doesn't value function over form, you may want to seek another opinion.

4. Continue to work with your baby patiently. It stands to reason the longer your baby has nursed with the tie/s, the more time he may need to get to a better place after revision. Resolution of the ties themselves is only the first part of the process; for continued progress, stretches help avoid reattachment that could come with normal healing. Your baby may also need to relearn how to breastfeed with this new and improved equipment, and that is where working with an experienced IBCLC can be integral, as well as getting bodywork done for your baby. I also chose to do tongue exercises with Ezra that are found in Breastfeeding Answers Made Simple: "Walking Back on the Tongue," and "Pushing the Tongue Down and Out."
   
5. Add your baby to your dental insurance. Or, be prepared ahead of time.  It may just be me who makes that mistake ever, but still, I wish someone would have reminded me of that 4 weeks and, oh, 3 days ago. :)

So in April I had a baby -- a sweet, gorgeous, pink little baby.  He is my fourth baby, fourth boy in fact -- and what a scrumptious, squishy baby he is.  I love him.  We named him Ezra.

Out in the world and on my chest, I soon began to see if he would nurse.  And he did.  Victoriously.  I was happy, and he was happy.  My midwife and I watched as his tongue passed his lower gum line and came out of his mouth, and we both hoorayed, "He's not tongue-tied!"  I have not previously had a baby who was tongue-tied, but my sister has, and it was a lot of trouble to get diagnosed and treated.

Fast forward to day three:  it's 10:00 at night.  I am perched at my computer, Ezra screaming on my lap as I watch how-to-latch videos through tearful eyes.  Each extra-pink nipple bears a horizontal stripe of raw, rubbed openness coupled with tiny scabs, and with every suck, I tighten and cringe and cry.  I hate this.  I label him.  He is a bad nurser. 

At this point in my life I have logged 11 years breastfeeding 3 different children.  I have been a peer-breastfeeding counselor for 10 years.  I have a pretty well-rounded knowledge of all-things-breastfeeding, both experiential and educational.  I have helped countless women in similar situations figure out how to better nurse to ease or eliminate pain.  And here I sit, alone at my computer, because he just can't do it right.  Because he is a bad nurser. 

Being new to the area, I don't have a clue who would be a good person to call for help.  I left an army of good friends and trusted resources -- IBCLCs, LLL Leaders, midwives, doulas, and nurses -- years in the making.  Okay, troubleshoot:  I try dragging the nipple down his face and over his nose.  I try teacup hold of the nipple.  I try the "flipple."  I try laid-back breastfeeding/biological nursing.  I keep my finger taut to the nipple to try and push/shove it further back into his mouth.  I try asymmetrical latch, symmetrical latch, sideways latch, and all-around-the-clock-face latch ("would you, could you in a tree?").  I even have my husband buy me a nipple shield and we try that (incidentally, that seemed to hurt even more, as Ezra couldn't latch to the shield so he would just chew my silicone-covered, damaged nipple).  Nothing works, for weeks.

I was still in great pain, but the physical damage to my nipples was not getting worse, and that made me
hopeful.  I found some Hydrogel Pads I had gotten as samples once, and they helped with the healing.  I figured out by latching him in football hold, nursing sessions became bearable.  We would also nurse lying down at night, turning on a small light to latch, stopping to make him try again when it was really, really painful (because it was never not painful).  I kept looking for answers for my bad nurser.

Aside from the pain I was dealing with, Ezra gained weight exponentially; at one stretch between weigh-ins, he gained 38 ounces in 21 days.  He did spit up a lot, like a lot A LOT -- overzealous amounts of milk, often flying out of his mouth in arching streams of stinky frothiness.  Keeping the nipple in his mouth was difficult, as it would constantly slide out unless I held my breast in place.  Once in a while when the nipple neared his lips, this disgusted look would appear on his face, as if I had presented him with something rotten and spoiled, and he would slowly chew his way up the nipple to latch.  And as he nursed, he clicked like a horse trotting on pavement.

Armed with a digital camera, I took pictures of this baby every day for sport -- ahh, the joys of the Digital Age!  When he was 3 weeks old I was scrolling through the latest batch, and suddenly, there it was:  Ezra was crying, eyes shut, mouth open, with a tongue that curled and cupped up.  Wait, I have seen that tongue before!  That's a posterior tongue-tie (PTT)!  Soon after birth I knew Ezra had a thick labial frenum (upper lip-tie, ULT), but I didn't feel this was the root of our pain; one of my other babies had one and it wasn't an issue, so I dismissed it without investigating the anatomy of his mouth any further.  Once I saw this picture and that light went on, I began searching online, I posted the picture on Facebook to an IBCLC friend, and my thoughts about this baby shifted:  Maybe he's not a bad nurser!?

I found Cathy Watson Genna's website incredibly helpful (http://www.cwgenna.com).  We had met a few years before when she was a keynote at our local breastfeeding conference, and I decided to share this picture with her.  She used the term "stingray tongue" to describe his posterior tongue-tie (PTT).  From her site I found a link to practitioners around the country who diagnose and treat tongue-ties.  I called to make an appointment at a clinic about 90 minutes away and was scheduled about 3 weeks out.

Although I have been working with breastfeeding moms for ten years, I had not heard the term "posterior tongue-tie" until about three years ago; even then, I had not helped a mom with a PTT -- it had all been hearing and reading others' experiences.  When we spoke of tongue-ties, we meant anterior tongue-ties, the obvious tethered (often heart-shaped) tongue, easy to spot, that could be clipped in a simple office procedure. While lip-ties I was familiar with, there still wasn't a lot of focus on it other than just getting babies to flange their lips out to latch.
 
By the time we met with the doctor (pediatrician and IBCLC), I was certain Ezra had an ULT, PTT, and high-arch palate; all three of my suspicions were confirmed.  This doctor agreed to fix (release or revise) the PTT but is not a believer in touching upper lip-ties.  By using scissors, a diamond-shaped cut under the tongue would give it more mobility and hopefully make breastfeeding better for us.  We had Ezra at home with a midwife, and as such, I chose to decline the Vitamin K shot.  This doctor wanted him to have that shot first as PTTs tend to bleed more than anterior TTs.  Ezra also had a cold with an impressive cough, so it was decided we would make an appointment to have the procedure done at a later date.  I left satisfied with the diagnosis and proposed treatment.

While waiting Ezra's cold out, I was hooked into an amazing network of parents and professionals who have experience, knowledge, resources, and often a unique understanding of all-things-tied-in-the-mouth:  Tongue Tie Babies Support Group on Facebook.  There I have learned not many professionals know how to identify ties (especially PTTs); not many professionals believe in correcting ties, especially in infants; not many professionals believe ties can interfere with feeding, speech, digestion, etc.  I have seen that many different kinds of professionals treat ties, from pediatricians to dentists to ENTs and GPs -- there isn't one kind of doctor who specializes in this area, it seems to be more about education and awareness than specific training that would come with a particular area of study.  While some doctors fix ties with scissors, others prefer to use lasers.  Some breastfeeding moms notice immediate relief and change, and others report it took weeks for things to feel better.

Having more information and more time to think, I began to second-guess taking Ezra back to the doctor we saw.  It had been brought to my attention by many people that Vitamin K, at this point, is most likely unnecessary because of his age.  And I learned I might have dismissed the role of Ezra's ULT a little too quickly; at the time I didn't think to ask about the Vitamin K and the ULT as I was a bit overwhelmed by my crying baby and the (unexpected, male, older) resident shadowing the doctor as she examined not only my baby, but also my breasts. 

I found a second choice, three and a half hours away, where the treatment is done with a laser; not only could we get the PTT taken care of, we could also have the ULT revised as this doctor (a dentist) does both.  I am not sure what to expect, but I am hopeful this is the right step for us...our appointment is next week.