tongue tie



This is a beautiful and raw piece that I think many women will be able to connect with. I love Elizabeth’s outlook at the end of her story and I could not agree more with her on her thoughts around supplementing with formula and pumping. At the end of the day we need to do what’s best for our babies , what is best for our relationship with our children and for our well being. I also think it is important to point out the real unexpected challenges that can occur after birth. Not only is this a sensitive time in a mother’s life but add in the physical and mental exhaustion and it is not hard for self doubt to enter the equation. Elizabeth you are one strong mama! Thank you for sharing your story with us.

Elizabeth will take it from here:

Throughout my pregnancy, I received a lot of well-meaning but intrusive questions and advice, including assumptions about my plans to breastfeed. I fully intended on breastfeeding but that was the extent of my planning. I knew that my mom had breastfed me for over a year and I figured we would be equally as successful. I naively assumed that since breastfeeding was the most “natural thing in the world,” it would come, well, naturally to us.

After a happy, healthy pregnancy and a relatively uneventful labor and delivery, I welcomed a beautiful, baby girl. The following hours were a blur as we got to know our sweet girl and tried to process all the procedures and information being thrown our way. Multiple lactation consultants (LCs) came to visit us in the hospital and my husband diligently listened along to their tips and suggestions so that we could both be armed with the requisite knowledge. I really only clicked with one of the LCs - the one who taught me how to pump, which would ultimately became our saving grace.  I remember starting to get stressed that my milk wasn’t coming in yet (I vaguely remember manually expressing a few precious drops of colostrum every few hours), but everyone reassured me that it would come in any time now and then we’d be off to the races.

By the time we were ready to be discharged, our daughter was losing weight, but we weren’t within the window of concern just yet. We were eager to get home and start our new normal, and assumed things would fall into place as we found our groove. My milk finally came in once we got home and I set up a little nursing station with my trusty breastfeeding pillow. My husband stood by, eager to help, and tried to coach me through the positions the LCs had taught us. After that, however, the wheels started to come off pretty quickly.

Still running on a swirling mix of adrenaline and anxiety, I swore I would stay up all night to watch her sleep. While my husband talked some sense into me and convinced me to get some sleep, our daughter would only stay down for ten minutes at a time before erupting in heartbreaking wails. We frantically tried to follow the 5 S’s and everything under the sun to soothe her back to sleep. I kept trying to nurse her around the clock, but each attempt ended with both of us in tears. I stood helplessly as we resorted to my husband finger feeding her via syringe with my small but growing stash of pumped milk.

At our first post-discharge pediatrician visit, we learned she had lost even more weight and were told to come back in 48 hours for another weight check. We headed back home feeling even more exhausted and dejected and decided to start operating in two-hour shifts so that we could each grab a few minutes of sleep. The next few days were awful - I dreaded feeding her, I was terrified of having to do this alone when my husband went back to work in a few days, and we were running on fumes. By the time we made it back for her next weight check, we were desperate for good news.

Our daughter had lost even more weight at this point and I completely broke down in the doctor's office. The pediatrician was kind but frank with us, telling us that our baby was quite simply starving and we were trapped in a vicious cycle where she was too hungry to sleep but too weak to nurse. We were hours away from having to take her back to the hospital to be hooked up on an IV. She instructed us to go straight to the grocery store to buy formula. She also told me to take a break from nursing since it was only causing me more distress and suggested I continue pumping each time we fed her. I flashed back to the doctor on call screaming at the nurses to get the formula samples out of all the recovery rooms and I broke down again in the baby care aisle, sobbing that I would be setting our baby up for a lifetime of health and academic failures by having to supplement. My husband brought me back to earth and reminded me that the most important thing we could do for our daughter right now was to feed her, any which way we could.

As we slowly but surely started to make progress with her formula and pumped feedings, I felt torn and conflicted.  When I was given the “freedom” to take a break from breastfeeding and just pump, I felt like an enormous weight had finally been lifted off my shoulders. At the same time, I couldn’t help but feel like a failure. This beautiful, magical, natural experience that we were “supposed” to have wasn’t ours and therefore there must be something wrong with me.

I knew that I should be celebrating each weight milestone (she stopped losing weight, started gaining, and finally climbed back up to her birth weight) but instead I was wracked with incredible guilt for not being strong enough to give her what she needed on my own. Our pediatrician didn’t try to force the issue of switching from pumping back to nursing, but I agreed to get help from the LCs at our hospital once more. It was an exhausting evaluation throughout which I still felt like I was doing everything wrong, but it did confirm an underlying tongue and lip tie (this experience requires an entirely separate post, you can read Mrs. Nipple’s experience with that HERE ) was preventing my daughter from effectively transferring milk. Again, this should have brought me some relief but I was almost too overwhelmed to process it.

Shortly after that consultation, I took a step back to consider our options, keeping in mind the ultimate goal, feeding our baby. I could suck it up  and try to power through nursing, despite the anxiety it caused us both, or I could choose a different feeding journey of supplementing and pumping that seemed to alleviate tensions all around. Close friends shared similar experiences with me, and their reassuring words and guidance convinced me we could choose this path instead. My supply was steady enough that we were able to stop supplementing within a few weeks and I furiously tried to research everything I could find on exclusively pumping (“EPing”). I tried not to get discouraged by the limited research and naysayers, and forced myself to take it one step a time - could I make it to the end of the month? Her 1 month birthday? 2 month birthday?

I soon became a pumping machine, scheduling pump sessions around her feedings, appointments, and outings, and quickly grew to love my pump time. It forced me to slow down and stop trying to do everything at once - the extent of my multitasking was playing with her or catching up on Instagram if she was napping. When it was time to go back to work, I mastered my new pumping schedule and schlepped all of my gear back and forth. I pumped at the airport, in the car on long roadtrips, and put my “PackIT” freezer bags to the test safely transporting milk across town and up and down the East Coast.

I had set an arbitrary goal of making it to her 6-month birthday and as at that date grew nearer, my love for pumping started to turn. It was the first thing I did when I woke up and the last thing I did before I went to bed and it was growing tiresome and somewhat isolating. I mapped out a weaning timeline and gradually started decreasing my pump sessions. I worked out a (perhaps unnecessarily complex) system for working through my freezer stash and reintroducing formula. I started to beat myself up again, feeling guilty that I was stopping pumping for selfish reasons and nervous that she wouldn’t adjust back to formula. My last pump session was filled with mixed emotions - I remember feeling proud of myself for having made this option work for us for as long as it did, relieved that I could go about my day without factoring in pumping logistics, and sad that this particular chapter was coming to a close. I didn’t know whether to laugh or cry at this point, but she handled the transition like a champ and happily gobbled down whatever bottle was given to her.

I still cringe when I hear comments implying that the only way to bond with your baby is by breastfeeding. While I have no doubt that breastfeeding your baby is a unique, strengthening experience, I also know that pumping and supplementing allowed me to be the best mother to my sweet girl. I gained confidence with each pump session and I loved holding her while feeding her - two things that eluded us in our early days. Further, it provided a wonderful opportunity for other family members to bond easily with her, a win for everyone.

My daughter is days away from her first birthday and as I watch her thriving now, our early struggles seem like a lifetime ago. I wish I could go back in time and tell myself that we were doing an amazing job and everything was going to be okay. Since time travel is impossible, there are a few suggestions I’d like to pass along to others who may be in the same boat.

  • Be Kind to Yourself: One of my friends who gave me the courage to try EPing shared a phrase that really stuck with me: Motherhood =/= Martyrdom. No one was going to win if I stubbornly (and unsuccessfully) insisted on breastfeeding just because that’s what every other mother did. I became a different mother when I stopped beating myself up and I firmly believe that my relationship with my daughter fundamentally shifted for the best when we chose to supplement and pump.

  • Lean on your Partner: My husband has long been a partner in every sense of the word, but I’m eternally grateful for the way he jumped in to try to understand the mechanics of feeding. He knew that even though he wouldn’t be the one to physically nurse her, he could follow along with the instructions and support me from the side. When we had to try other forms of feeding, he was right there trying to figure out the best position for holding her. He listened to my frustrations, encouraged me when I was too hard on myself, and kept us focused on getting our daughter healthy and strong, and it really helped me feel like we were in this together.

  • Talk About It: Whether it was because I was feeling vulnerable or too exhausted to filter myself, I was brutally honest when friends would check in on us. If I had swept our challenges under the rug, I don’t know that our friends would have been equally as honest with me in sharing their own challenges. I had felt frustratingly isolated until I learned that other women had been in this exact same position. Their words of support and reassurance brought me to happy tears and gave me the push I needed to choose our own feeding path.

  • Trust Your Gut: This is easy for me to say with nearly a year of parenting under my belt now, but I do wish I had spoken up sooner and more forcefully. One of the LCs who first met with us (and later the first pediatrician) made a passing reference to the tongue tie, but it didn’t really register. I wish that I had flagged that (or at least asked more questions) when we were still in the hospital, since we could have had it addressed on the spot. There were a few other warning signs in those first few days that I wish I had pressed as well.

Focus on your Journey: I wish I could have spent less time worrying about what we were “supposed” to be doing and more time focusing on what worked best for us. How other moms were feeding their babies is frankly irrelevant. Their opinions of how you are feeding your baby is irrelevant. We got there eventually, but it took a lot of pep talks from our doctor and my husband to remember that fed is best. Period.


Ford's story 

I've been putting off writing this blog post all day. I'm not really sure why but I suspect it's because I've tried not to think about how the last three months really didn't turn out like I thought they would. I remember when Charlie was a newborn I wanted time to stand still. He would sleep on my chest for hours during those first three months. He was the happiest and most predictable baby. I always felt comfortable bringing him anywhere, even the library in the quiet section :) If he was fussy he was hungry and that was it. He could even sit in a dirty diaper for hours with not a peep.

Then Ford came along. From day one he seemed so uncomfortable and I had an overall feeling something was just not right. I couldn't put my finger on it. During our one week check up I told the doctor that he was fussy, seemed uncomfortable after feedings and had bad gas. He was 100 percent breastfed so I knew this wasn't supposed to be the case. The doctor didn't think anything of it and told me if he was even colicky that wouldn't present itself until week two or three. I then said there also seems to be something  off about his face. It seems stiff.... The doctor looked at me like I had three heads. As I was leaving the office, he asked me, "Are you OK?"  I just couldn't shake the feeling that something was just not right with my baby. When I left, I took ten minutes in the car and just sat thinking .... am I going crazy?

Instead of deciding, YES,  I am crazy, I headed right over to the ENT specialist thinking what if he had suffered a trauma to his face during delivery. Ford's arrival was a very intense, but quick delivery. The ENT examined him and determined that everything was fine. So, I took a breath and chalked it up to fourth trimester fussiness. However, I still couldn't shake my gut feeling that something wasn't right and found myself searching on the internet late into the night, still unable to find anything that made sense.

After 4 weeks of countless hours of fussiness, crying and one very uncomfortable baby, I decided enough was enough. Instead of feeling like wanting time to stand still, I was sitting in the living room one day praying time would speed up. I couldn't take it anymore. Seeing Ford in pain and also being around a fussy baby all day was just torture. No cuddles, hardly any smiles or interaction. I felt guilty but when people were around, I would immediately hand him off. 

I then decided no matter what, I had to figure this out. When I googled colic, it seemed like "colic" is just not really ever figuring out what is wrong with your baby but having to wait a few months for it to clear up.

I brought him to a GI specialist. You can read that post HERE. She had me cut out dairy and at first I thought it was really working...but it ended up not making much of a difference. I had trouble picking a photo for the GI & Colic post. I wasn't sure what photo to post on instagram. Should I post the picture that summed up my reality? My baby screaming in pain? Was that picture too intense ... too real? I thought in that moment I needed to admit to myself that this is my reality. The night that blog post above went live, something beautiful happened. Mothers from all walks of life commented with their similar stories of living with a fussy baby. Some moms had questions and other shared their personal stories.

And then, a few hours later, I checked my instagram and found this..."He looks like he has a lip tie from this picture. Seeing a specialist would probably be helpful. My son had a lip tie and it caused so many issues, from gas to not getting full. His dad also has one and it created a gap between his teeth." 

Oh my goodness!   WHAT I thought, is a lip tie? I had never even heard of a lip tie.

More comments flooded in....

Did you check him for a lip tie? ..then another "Have you had him checked for a lip tie by any chance? Looks like he may have one from this pic. I know that can cause fussiness as well." Then another, "Has he been checked for a lip tie? My daughter had one and was miserable acting (tons of screaming) until we had it reversed by laser. It can cause reflux, gas etc." 

Ford was asleep and for the first time I anxiously waited for him to wake up. I googled lip ties for hours. I thought there's no way he could have one. He was looked over at the hospital and he's been seen by two specialists and our primary care doctor multiple times. Someone would have obviously checked for it.  

The moment he woke up I opened his mouth and OMG!!! THERE'S A LIP TIE!!!

It all made sense. EVERYTHING came crashing together along with a wave of anger and guilt. I knew I would never get that time back with him. And all of these could they possibly over look such an obvious thing??  

After being up all night, I needed answers. I showed up at my primary care doctor unannounced. It was immediately confirmed. I couldn't see our regular doctor,  but another doctor at the practice examined Ford. "Yeah, it looks like he has a lip tie." That was it??  She didn't seem very concerned. Should I see a specialist? The doctor basically shrugged her shoulders and said since he's gaining weight I shouldn't worry.  What?? Weight? That's all you care about? What about the fact my baby is in constant pain? 

I asked to see a specialist and was sent back to the ENT. That appointment didn't go so well either. "Yes, he has a lip tie and a little tongue tie. He's gaining weight so I wouldn't worry. Are you sure it's not reflux?"  NO!!!  I said I've been to a GI specialist and it's NOT reflux!! I  couldn't believe what I was hearing! "Are you sure?", he pressed.  "You should try reflux meds. And these lactation consultants are sending me way too many lip and tongue tied patients. They so over react." I felt like I was taking crazy pills. So many moms said their babies lip and tongue ties caused gas pain, fussiness and colic like symptoms. 

My next stop was to an oral surgeon. I couldn't believe I was having the exact same conversation. Since the baby was gaining weight, he advised it might be a good idea to wait a few years. Weight again seemed to be the only concern. He also gave me very incorrect information. He said if he did not stitch the muscle together after the lip tie, it would definitely reattach. He said he would have to put him under in the hospital to perform the procedure.  I left that appointment so upset! I immediately called my primary care doctor with whom I couldn't get an apt earlier that week. He said he has seen many babies in his practice who have had great experiences and never needed to be stitched or go under anesthesia. I was given such horrible misinformation. 

My husband's co-worker then gave me the name of a specialist, Dr. Siegel, in Huntington that successfully helped his baby. Dr. Siegel is the first and only Oral and Maxillofacial Surgeon in the United States that was awarded a fellowship in the American Academy of Pediatrics. I made an appointment for 2 weeks. My husband walked in that night and found me staring at Ford and basically sobbing. I just wanted to feel a connection and it was so hard for me and him. We decided to call back and basically beg for an appt. They got me one the next day. I walked in and he told me Ford had a stage 4 lip tie (worst level) and a tongue tie. All of the air I was hearing him swallow during breastfeeding was due to the fact that he couldn't properly latch. I had such an aggressive let down that he was gaining weight despite all his challenges. His lip & tongue tie paired with an aggressive let down resulted in one fussy baby. 

The doctor then proceeded to swaddle Ford, put little glasses on him and in less than 2 minutes lasered off both ties. Two minutes and it was all over. That was it.

I was supposed to immediately feed him, so I did. I know some babies have trouble latching after the procedure, but not Ford.  He fed beautifully and as I put him down to learn how to do the mouth exercises that I would have to do for two weeks to make sure the ties did not come back, he smiled!! I could never put him down ever without him screaming bloody murder. I would have to rock him with the noise maker going full blast just to get a minute. Not this time! He smiled at me with a really long cute smile and all that time that we didn't bond just melted away. So many thoughts ran through my head but the one I remember the most was, "There you are...I knew you were in there somewhere". 

It will be two weeks this Thursday, July 19th,  and for the last two weeks every 5 hours around the clock I have had to stretch out his upper lip and tongue to make sure the ties don't grow back. Even with stretching out his wounds, he's a much happier baby. The first week he was definitely still fussy, but a different kind of fussy. I could tell it was from the procedure. I never thought I would be able to say this, but this past week Ford has been the easiest baby, just like Charlie.  We recently started building a beautiful relationship and it is the best feeling in the world. It's like we are making up for lost time. 

I keep thinking what if I never posted that picture, what if I never shared my story, what if those mothers felt it might be too forward to post their intuition, what if I listened during those first few drs appointments, what it I didn't trust my motherly intuition?? 

Two seconds. Two seconds is the amount of time it would take to check if a baby has a tongue or  lip tie. It would take 2 seconds to change the first few months or years of a child's life, of those early bonding days where new mothers are in need of that connection with their babies to get them through the day. Two seconds. Lip and tongue ties go overlooked way too often. I'm not sure if doctors don't take them seriously or don't believe they really cause anything but all it would take is 2 seconds. 

After talking to multiple mothers with the same exact story, I know its not just me. Dr. Siegel was a wealth of information. He explained that not only can lip and tongue ties cause so much discomfort for the child during feedings and after feedings, but it can also cause speech issues, dental issues, sleep apnea and even can significantly change the way a child's face develops. We are talking about lifelong issues. 

Many times they go undiagnosed until kids are getting braces. One mother told me her daughter had been going to a speech therapist for years and the therapist had overlooked her lip tie. The dentist caught it. They had it lasered, and she stopped speech therapy. One mom had a child that was not talking at two and a half year old. After multiple specialist and no answers they eventually discovered he had a lip tie. After the lip tie revision his vocabulary exploded.  Another mother told me her daughter was misdiagnosed with reflux. They had her lip tie reversed and she came off of reflux meds shortly after. Story after story.....

I just hope this reaches as many moms as possible. If you have had a similar story please go back to instagram and share. If you have questions go back to instagram and comment. I feel so grateful for this platform. I want to scream our story from the mountain tops and spread the word. I feel like I need to pass the gift of bonding on to other moms  that those  three mothers gave to me. Never ever question the strength of a mother's intuition. 


A few other things: 

-You can see a chiropractor that specializes in working on babies right before & right after the revision. Many mothers told me that body work really helps after this procedure. 

-There are occupational therapist that also help babies and children after a tongue or lip tie revision. One of the therapies is called Craniosacral Therapy. This website HERE is a great resource to find an OT near you that specializes in ankyloglossia (tongue tie) & lip tie therapy. There are also a bunch of very useful resources for the parents, you can find them HERE. 

-Visiting a lactation consultant is always a good idea.

-You can find the benefits of body work after a revision, HERE. 

-We used infant Tylenol to help manage Ford's pain. 

-I also put organic coconut oil on my fingers while doing the lip & tongue exercizes every five hours. 

-One mom swore by this homeopathic solution she gave her baby. See below. 

Homeopathic recipe 

2 tablets of arnica, 2 tablets of chamomile in one ounce of purified water. ( check with your doctor first) Just mix it up in a dropper and give the baby a drop or two when he/she needs it. 

-There are also facebook support groups. Many mothers found these so helpful. 

-This website has a bunch of good post procedure information along with video tutorials of the lip and tongue stretches to prevent reattachment. HERE and HERE