The Lip Tie Tongue Tie Nightmare

Less than 24 hours after having my son, I was home with my husband, my two girls (one of whom had a birthday the day we came home), and my parents. It was a Thursday afternoon and I felt amazing. Tired, but amazing. I couldn’t remember the last time I’d slept and I was so high from the natural birth and the thrill of my perfect baby, I just continued to be awake, chatting with my family and staring at my baby’s perfection. 

The newborn blur began as soon as we walked in the door. Diaper changes. Clothes. Getting the bed ready for us all. Breastfeeding around the clock. Working on a proper latch. And resting whenever I could. On Saturday we were having my youngest daughter’s 4th birthday party. I am pretty sure I was delusional when I thought I could have a birthday party for her, complete with snacks and decorations. But I did…

Some time on Saturday, between the stress of decorating for the party, the cramps and bleeding from being 2 days post-partum, being dressed and “on” for company, and taking care of a newborn, while trying to shower my birthday girl with attention, I began to notice something was wrong. Breastfeeding could hurt in the beginning. I’d experienced pain those first few days of nursing with my oldest. But I wasn’t finding any relief. The pain just continued and my brand new, perfect son, was not acting content after feedings. He would sleep for 5-10 minutes and then begin crying. 

I kept feeding my baby, watching him drift into sweet sleep, handing him off to family members and visitors to hold, only to have him crying within minutes. He would be handed back to me and I would feed him again. The pain of latching wasn’t improving and he didn’t appear to be getting comfort or nourishment either. I thought, perhaps, when my milk came in things would get better. 

I was wrong. 

The Sunday that followed was dark. It was a dark day that led me down a dark week, and into a dark month. On very little sleep, I nursed around the clock. I felt my milk come in. I hoped it would help, but it didn’t. I nursed my baby everywhere. I started hearing a distinct clicking noise that I’d never heard before. I took videos and sent them to friends. I start asking La Leche groups and moms groups on Facebook what could possibly be happening. Tongue tie. Lip tie. Terms started flying at me and I wanted to dismiss them. But as I nursed him for the 5000th time that dark day, I began to crumble. 

Though we had company, I could not get out of bed. I just laid there nursing every few minutes, in extreme pain. My nipples had started to bleed and I couldn’t find relief. I was clenching my jaw so tightly every time he latched, I felt like I would go into a panic if the pain continued. Meanwhile, the milk in my breasts continued to come in but I didn’t feel like any was going out. I cried and cried, alone in my dark bedroom, listening to my girls play and talk with family, wondering what I was going to do. 

In a panic, I messaged with my doula who said she would be over as soon as she could. With authority, she said we needed privacy and our guests needed to leave. She said the last thing I needed was to be dressed and wearing a bra and trying to entertain. Off went the clothes. Skin-to-skin was all that mattered. She watched me nurse. She helped with latching. She gave me a schedule to give my bleeding nipples a break. She taught me to use the breast pump I’d had for 5 ½ years but never used. She confirmed there was a lip tie and maybe a tongue tie going on and encouraged me to see the chiropractor. She showed me how to feed the baby pumped milk with a spoon. I tried not to panic, but I was constantly scared he was starving and I couldn’t help him.

My chiropractor was on a flight that night that didn’t get in til after midnight. I messaged him and his wife. I needed to know if an adjustment would help my baby eat or if something more drastic was required. Every hour that passed by was torture-filled with pumping, painfully nursing, spoon-feeding, applying oils to my nipples and my breast tissue. I wore cabbage leaves to stop the painful engorgement from turning into an infection, and I mourned the newborn experience I had hoped to have. I can’t remember ever crying so much nor being so afraid. 

My kind chiropractor, who was probably jet-lagged and sleep-deprived, met me and my dad at his office in the morning. I could feel my panic and nausea return as my postpartum body balked at the idea of being in public, standing, walking, conversing…. I handed over my fragile, precious, hungry newborn and watched him be examined with care and delicacy. My chiropractor did an adjustment, advised jaw massaging while nursing, and confirmed a lip and tongue tie. He wasn’t sure if the tongue tie needed to be removed, but the lip tie definitely did. He was allowing air in when he nursed, causing the chapping, blistering, and bleeding of my nipples. And his poor latch was preventing him from getting the milk he needed. 

I was heart-broken. On the drive home I called the dentist I was referred to and tried to make an appointment for a frenectomy evaluation and procedure. The soonest they could do it was 10 days out. I started crying. I explained that I was hormonal and emotional. I apologized profusely and asked if there was anything they could do because my baby was hungry and I was in so much pain. Within the hour they called back and the dentist had agreed to do the evaluation and procedure on his lunch break the next day. 

My husband had already missed work for the birth and was anxious about trying to get time off. My parents were getting ready to begin their 22 hour drive back home. The dentist was 3 hours away, just outside Baltimore, MD. My dad agreed to take me and I cannot tell you how grateful I was. I just needed progress. I needed something to give me hope. 

That night, the dentist himself called me to talk about the procedure. I was shocked and impressed. He told me the youngest baby he’d worked on was 15 hours old. I thanked him for working through his lunch and he simply asked that I not bring him food, because sometimes people did that and he didn’t need it. I had to laugh. Of course, I’d thought about bringing him food, but couldn’t do much more than take care of my baby, let alone myself. 

My friend volunteered to take the girls to and from school. My mom would stay at home so someone would be there when they got out. My husband left for work and my dad and I embarked on our 3 hour drive with my newborn. Bleeding. Cabbage leaves. Leaking milk. Exhausted. Nervous. And iron-deficient, no-doubt, I remember pieces of the drive. Chunks of conversation. Views out the window. Looking back at my sleeping newborn. Praying. Constantly praying.

In the office, I filled out paperwork, nervously watched patients come and go, chatted with some other people and waited my turn. I pulled out my Copaiba essential oil and whispered to my baby how everything would be okay. One woman had the nerve to comment, “In my day, you just suffered through those first couple of weeks of painful breastfeeding, but nowadays, everyone gets this lip-tie thing cut off.” 

“I’ve had 2 other kids,” I informed her. “I know breastfeeding pain. But this exceeds that. And my baby cannot get enough milk because he can’t latch properly. Driving 3 hours isn’t convenient with a 5-day old baby. This is a necessity.” I bit my hormonal-tongue and decided that getting upset wasn’t going to make any of this easier. 

During the exam, I was shown the lip-tie and the tongue-tie by the kind, happy dentist. He was at ease with the evaluation, my baby, and the procedure. I rubbed oil on his gums and held his hands while they began. As the gum tissue burned away I dizzily swayed a little and was asked if I was okay. Immediately, I thought, “This is not about me. All that matters is him.” I nodded. “I’m fine.” And they continued. Both the lip and tongue ties were lasered off and the tongue tie was cauterized. I thought it would never end. Immediately I nursed my baby, not caring about my own pain in that moment. I just wanted to comfort him. 

It was a long drive home. My son slept off and on, he cried a lot. In the next 24 hours he would cry so much, I wouldn’t know what to do. I kept telling myself to give him 3 days to heal. So many people said day 3 was the worst. Thankfully for us, the worst was those first 24 hours. I never did end up giving him acetaminophen or ibuprofen. (Ibuprofen isn’t recommended on babies so young. Acetaminophen crosses the blood-brain-barrier and is linked to asthma and many other issues.) I did use some Copaiba on his gums and Helichrysum diluted on his feet. I worked diligently on his latch and continued pumping and nursing around the clock. 

As we all recovered from the procedure and the trauma of it all, I realized my milk supply was diminishing. It seemed far too early for that and I panicked yet again. I was trying to feed him as much as possible, even through my own pain, but it still didn’t seem to be enough. We were up all hours of the day and night, him fussing and rooting to eat, and my cringing while trying to breastfeed him again and again and again. 

A trip to a lactation consultant confirmed my fears: my baby was losing weight still and probably hungry. I couldn’t even get through a conversation with her as I sobbed and sobbed. I just wanted everything to get better. I had only had him in my arms for a week and a half and it had all been so miserable, so scary, so painful, and so completely unfair. I left the doctor’s office with a list of things to do: pumping after every feeding, spoon feeding all of the milk I pumped to him whenever he would take it, galactagogues to consume, and breast compressions. My doula helped with my milk supply issues as well by giving me homeopathic remedies, essential oils to apply topically and take internally, and more oils to help my painful nipples. 

With my parents gone and my husband at work, I relied on my friends to take my kids to and from school and bring us dinners each day, while I worked literally around the clock to feed my baby. I didn’t know night from day except that sometimes I saw people and sometimes I didn’t. All I did was apply fennel and basil oil to my breast tissue, nurse, burp the baby, apply myrrh oil diluted in coconut oil to heal my nipples, pump, feed baby whatever milk I’d pumped before, drink water, drink hot lemon honey water with fennel oil in it, do his frenectomy exercises to help his gums and tongue tissue to heal, change his diaper, take care of my postpartum healing whenever possible, and ingest copious amounts of lactation cookies.

One of these days was a Saturday and my friend took the girls for us so my husband and I could be at home. He helped me through the initial learning curve as I developed a routine with all of it. He helped me make lactation cookies (or lactation pizza we joked, because the cookie dough flattened out and spread out all over the pan when it baked). At some point I became hooked on Downton Abbey and watched it continuously while I cycled unknowingly through day and night. 

And still, a week later, at the lactation consultant, he hadn’t gained any weight. My heart raced as they weighed him and broke as they told me the number. I clung to the fact that he hadn’t lost any more weight. We were going to get through this. I was told I could slow down on pumping since my supply was up. I didn’t have to pump after EVERY nursing session anymore. Since the latch was improving and my nipples were healing, it was getting easier to nurse him, so we focused on that. The next week wasn’t as terrible, though I dreaded the next weigh-in. 

I slowly returned to a routine, taking my girls to school and picking them up. I had friends over for playdates and started heating up frozen meals for our dinners. My sweet baby still didn’t sleep much, sometimes only 5-10 minutes at a time, and cried to nurse constantly, but I was there for him. I remembered how when he was born, I pulled him into my arms and said over and over, “We did it! We did it!” During this dark season I looked at him often and said, “We are doing this. We are doing this together. We are a team and we are going to get through this.” 

At yet another appointment, the pediatrician was unconcerned with the weight, saying he had stabilized and seemed alert and more content. However, the lactation consultant wanted to continue seeing us until he got back up to birth weight. I felt vindicated and defeated all at once. I continued nursing him constantly, but slowed down on supplementing pumped milk because he was just spitting it out at that point. 

It took three weeks, three long, dark, exhausting weeks to get my baby back up to birth weight. The day we did it, I rejoiced. I smothered him in kisses and cried. Finally, I was crying tears of joy, the kind I hadn’t shed since his birth. Finally, we were getting somewhere.

I don’t remember much else in that first month. I openly apologize to anyone I may not have responded to or for anything I did or didn’t do. In moments like these, nothing else matters but the health and well-being of your child. And in hindsight, I was a rockstar for my baby. I did the hardest work I’ve ever done. I know I couldn’t have succeeded without my husband and our friends’ support, but I also know that I made a choice to keep going through it all. 

My baby is 3 months old now (at the time I originally wrote this). Sometimes when I pick him up at night to feed him, I chuckle at how much heavier he feels in my arms. Even when he nurses every 2 hours and I feel I can’t get anything accomplished, I am proud, proud to have this nursing relationship with him and proud that we got through such dark times together. He’s rolling everywhere now and has graduated out of the rock-n-play and into the pack-n-play, 3 months before schedule!. He’s slept through the night (once) and he sleeps wonderfully, overall. I still get emotional when I think of our first month. I sometimes feel I was robbed of the blissful newborn phase. I may mourn that for a while. Regardless of the sadness, we made it through. 

I’m also going to just leave this here: There is research linking MTHFR to children (more likely boys) being born with lip-ties! 

The amazing dentist we used is: Robert M Marcus, DDS

New and breaking news: There is a local dentist (to us here in central Virginia) who now performs these laser frenectomy procedures! He is a dentist we’ve used and respect greatly: Dr. Browning in Waynesboro, VA!