Much appreciation to Dra. Kelly Marques Oliveira, IBCLC, for translating this into Portuguese.
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?
Did you know a parent or caregiver can pass the bacteria that causes cavities to their babies? As I feed Ezra more of what I am eating, I realize we end up sharing the spoon. If I have untreated caries in my mouth, I can pass the Strep mutans (believed to be the primary bacteria that causes cavities) to Ezra and colonize his mouth and teeth so he could potentially "catch" cavities from me.
We know Strep mutans are not present in babies' mouths at birth. "Research shows that caries can be infectious. When an infant is born, its mouth is basically sterile. It does not
have decay-causing bacteria in its mouth. The decay-causing bacteria is 'acquired' or 'inoculated' at some point in its life. It may be the timing and amount of the inoculation that determines the risk of decay. The infant could be inoculated by Strep mutans in many different ways -i.e.- kissing, using same spoon, etc. Once exposed to Strep mutans, the critical issue then becomes how often the infant is exposed to sugar. Frequency of exposure to sugar is more important than the amount of sugar. A low bacteria count with many sugar exposures can be just as cariogenic as a high bacteria count and less sugar exposure." The late Dr. Brian Palmer was a leading researcher on breastfeeding and oral development and health, and that quote was his, taken from a presentation on his website.
Dr. Palmer also showed us breastmilk is anticariogenic in nature -- meaning breastmilk alone will never cause decay. Now as soon as you add a Goldfish cracker or a slip of dried seaweed -- anything that has carbs in it -- you have the makings for caries. But his research showed teeth soaked in breastmilk did not decay. This is important in light of night-nursing. When babies start to get active and busy, they often shift the majority of their eating from the daytime to the nighttime (we call this reverse-cycling), yet night-nursing is often blamed for infant caries. Wiping the teeth with a clean cloth at night is something some parents do, but admittedly not every parent is awake or aware enough to see this through. Others choose to brush their babies' teeth after dinner and only allow breastmilk or water until morning. Whatever you choose, it is important to be mindful that as soon as your baby's teeth erupt, it is time to start taking care of them.
As parents there are things we can do to help improve our babies' dental health:
There is much joy in feeding that little baby of yours "real food" once they can really go for it. With a little bit of knowledge, and a tiny toothbrush, you have the tools to help protect those teethies while also building lifelong habits of proper dental hygiene.
Through Tongue Tie Babies Support Group, I "met" Jen, and then we were able to meet in real life. While Ezra and I struggled with common tongue-tie issues related to excessive weight gain, reflux, "oversupply," and all with a happy baby, Jen and Christian were at the other end, experiencing intense colic, nursing around the clock, failure-to-thrive, reflux, and diminished milk supply. I asked her to share her story, and it is extreme. I am grateful for her willingness to upturn all of these feelings and emotions, and I know she does it to help other families.
Even though it has already been six months since we went through our revisions, I still find it hard to think about what my son Christian and I went through with his undiagnosed tongue and lip ties. I should include my husband, Scott, in that statement as well, as he had to be there for all of the problems we were dealing with. He spent his time home with us soothing a screaming baby -- a baby who we thought had reflux, gas, and colic. He helped me cut out every offensive food in my diet that could have been making him sick (according to all of our baby books and the websites I read, Christian was probably upset all the time because of my diet, the gas that infants naturally have, and because he was just a “colicky” baby). For his first two months of life, we spent 8-10 hours a day laying on the couch nursing. He would fall asleep a few minutes in, and I would try to get up to do something around the house or grab a bite to eat. As soon as I moved, he would scream until I nursed him again. I would see a little heart-shape at the end of his tongue and a piece of tissue going halfway up his tongue that I thought was suspicious, but I didn’t think too much of it.
Let me backtrack. I was supposed to have Christian in a birth center until we had complications three days into my labor. He went from the right position to the wrong position and I couldn’t dilate due to horrible back labor. I was not planning on spending time in a hospital, but during our overnight stay I must have called the nurses every hour to help me with breastfeeding a baby that couldn’t latch well from the get-go. I was told that not being able to latch was normal and we both had a lot to learn with each other. The advice didn’t sit well with me because it seemed extremely hard to breastfeed him. A nurse supplied me with a nipple shield and we “kind of nursed.” It still hurt, but I had a tool that helped a little.
I left the hospital with my baby and my shield promising to appear at our pediatric follow-up the next day. When Christian was weighed, we saw that he went from 8lbs 5oz to 7lbs 12oz overnight. The doctor didn’t seem concerned and arranged for us to come back a few days later -- he was barely at 8lbs at that visit. She said that since he was gaining weight, even though not quickly enough, she wasn’t too worried and I should just come back in for our two month appointment. She chalked up the weight loss as being a normal symptom of jaundice and that some time in the sun and feeding him constantly would clear him of it.
We spent the next seven weeks nursing all day and all night. I had bruised nipples and the baby had blistered lips. I had heavy letdowns in the morning and he would spit up most of what he drank. I was irritable, frustrated, and would spend the five minutes a day I had alone crying in the shower. My husband learned all kinds of tricks to calm the baby, although now I’m realizing that we made him cry it out and he just gave up and slept because he realized he wouldn’t get any food. That’s my best guess, anyway. I don’t think our gas moves were helping him. Being new parents, we figured that we had to work out the gas and when he would fall asleep we figured we did our hard jobs as parents. We had no idea how hungry he was.
When two months rolled around, Christian looked really thin and I started to worry about him. His head was huge, his arms were tiny, and I could see his ribs clearly. My best friend said he didn’t look any bigger (but I didn’t notice how skeletal he was until I looked at pictures I had taken). She noticed him falling asleep while eating and thought he didn’t have a deep latch.
I heard of a breastfeeding group that was part of a local hospital and I decided to go in for support to figure things out. The first time I went, the lactation consultants thought he was a newborn. When they saw him eat, then told me that he was just a lazy baby and they see lazy babies all the time. I was told to constantly make him uncomfortable so that he would
eat. They said he was “happy to starve” and he “circled the drain” -- whatever that meant. Basically, they told me that he preferred just to eat enough to be comfortable and then go to sleep (from my own research, I found that he was working so hard at eating that he fell asleep out of exhaustion). No mom wants to hear these words about their child and instinctually, the situation didn’t sit right with me. I showed her the ties and wanted her confirmation that they weren’t normal (at that point I read a little about posterior tongue tie and upper lip tie in the Facebook Tongue Tie Babies Support Group) and she told me that they were normal, they see them all the time, and that they would stretch. She told me that my bruises were normal and his lip blisters were normal. I wanted her to tell me what my gut was telling me: the ties were the problem. Instead, the baby was blamed. Unfortunately, he was diagnosed failure-to-thrive by the lactation consultant who told me to go see the pediatrician right away or else they would make sure he would be admitted to the hospital. I was told to take fenugreek, pump, and give him as much formula as he would take.
When we went to his pediatrician, she told me that he was fine, not yet failure-to-thrive, and I probably just didn’t make enough milk for him. I pointed out his posterior tongue tie and upper lip tie and she said that those are normal and they would stretch in time. Both pediatrician and lactation consultant agreed I should rent a hospital-grade pump and pump/bottle feed for every single feeding. The lactation consultant sent me home with a case of formula since I probably didn’t have enough milk for him and by that point, she was right. We had two months of bad latching and breastfeeding and my milk supply, although there, was hardly established. I went through the next month pumping, bottle feeding, and “sneaking in” breastfeeding sessions to make sure we kept our closeness and he didn’t decide the bottle would be better for him.
As if pumping, bottle feeding, charting weight and diapers (we bought an infant scale and weighed him six times a day) weren’t enough, there was a huge strain on me feeling like a failure. I could not wrap my mind around my baby being lazy and happy to starve. My instincts were telling me that this baby would do anything he could to survive, and that something had to be an issue. I originally found out about the Tongue Tie Babies Support group through another breastfeeding site where many of the moms were also telling me that all of these things were normal and that we would just work through them. I was told to take fenugreek, eat oatmeal, have a beer, drink a ton of water, and try all kinds of positions. Where some of these things helped a little, I thought they were more like bandages and not cures. After reading through most of the posts, I came across one from a mom who described my story exactly: feeding the baby all day, baby falling asleep, waking up crying, gas, colic, reflux, failure-to-thrive.
She spent the next few hours communicating with me back and forth and encouraging me to go to the support group. There, other parents were telling me almost the same exact story. When I asked why I was told it was my fault or my baby’s fault, they explained that doctors and lactation consultants usually aren’t taught these things in school. I read Dr. Kotlow’s breastfeeding publication and looked through all of the articles I could get my hands on. Finally, the mom who originally linked me with the group told me to go see Dr. James Jesse who only lives an hour away. I made an appointment for the first available opening which was a week away. When I went to tell my midwife, she told me to see someone closer to us and although I agreed, I kept my appointment with Dr. Jesse.
When I saw the pediatrician who clips lip ties, she told me that his tongue tie was very minor and although she would clip it, it probably wasn’t really causing us that many problems. She said his upper lip tie was “too thick” to clip and that I should just wait until he broke it on his own or was old enough to go under general anesthesia and could have it stitched. She watched him eat a bottle and told me that I could just bottle feed him, but I probably just wanted the closeness. As a mother determined to breastfeed, yes, I wanted closeness. I wanted so much more than that. Her lack of knowledge and incomplete revision (both of not revising the upper lip tie and also not cutting enough of the tongue tie) discouraged me but the support group assured me that Dr. Jesse would take care of both issues. When I called his office to confirm, the receptionist said that there wasn’t a tongue or lip tie Dr. Jesse couldn’t take care of.
I took Christian into see Dr. Jesse and within ten minutes he was diagnosed and revised via laser. I couldn’t believe the difference I saw in his mouth, and although he had a hard time breastfeeding right away, he ended up napping which gave me time to allow him to heal.
Our story didn’t end with the revision. After a traumatic birth and two months of bad and overcompensating latch, we had Christian go through craniosacral therapy and chiropractic adjustments. After working with him on his latch and suck, we finally have a good, pain-free breastfeeding relationship. Sometimes I think his suction is a little too good -- creating quite a seal when he latches. I never saw or felt that before when he had posterior tongue and lip tie! After trying an SNS for feedings, I couldn’t really get the hang of it and decided to opt for bottle feedings for supplementing. Some women can boost their milk supply up in big ways after revisions, but mine never quite got to where it needed to be. He wasn’t gaining enough weight still and so I had friends who donated over 150oz of breastmilk to me and we found a formula that he liked. I have to say my milk supply did increase a lot, and with that I have been able to go from supplementing 15-20oz a day to 0-6oz a day, depending on Christian’s needs. He has been gaining weight steadily and his gas and reflux have not been an issue since his revisions. I haven’t worried about the types of foods I eat, nor would I label him colicky. We even took a trip to Colorado for a friend’s wedding when he was three months old and he was not the same frantic baby he was at one or two months old. I enjoyed his first laugh without looking at the fragile, skeletal sweetheart that I would have done anything for.
Even though he is currently behind in weight (tenth percentile), he is healthy, happy, growing, and meeting major milestones. I am just following his lead in providing for him, and it is working out well without a lot of stress. We know that one day this will really be behind us with Christian. We know that we will take our next babies in for revisions as early as a day post-birth if they have ties, and chances are, they will. When I went back to visit the lactation consultant I worked with, she didn’t seem to want to listen to our story, but I plan on going back in with information and resources hoping that she and her colleagues will see this common problem that many moms face and learn the ways they can support them so that no baby will ever be called lazy again. Because of our experience, I want to save other moms the pain of going through what we went through with an issue that is so easily diagnosable and treatable. I hope that my friends can learn from our experience and realize that with their similar issues, their doctor may not have all the answers. I am also thankful that I was proactive in preventing adult issues with tongue and lip tie such as speech problems, digestive issues, tooth decay, and other symptoms that I struggle with as an adult as I have an undiagnosed posterior tongue tie myself.
Even though having a baby diagnosed as failure-to-thrive is devastating, I am thankful for going through the extreme end of the issues because I can use our experience to help other mothers who are struggling. I don’t regret the revisions at all, and would do it all again in a heartbeat knowing that it is fully benefitting Christian.
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.
♥ four young boys and a boy dog (offspring)