Another Tongue-Tie Story -- The Other End of the Spectrum

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. 

A few days old, sticking his tongue out

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.

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Newborn

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.

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2 months

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.

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2 months

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.

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Getting chubby!

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.

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Christian, 7 months old

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. 

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Ezra's Story