Our Tongue Tie Story
I share this in hopes of shedding light on this issue so that if by chance you are in my shoes one day, you may have an easier time identifying these signs than we did!
Everything is clearer in hindsight, but while we were in it, we didn’t see the signs. Having had a successful 2 year breastfeeding experience with my oldest daughter, I was surprised by how hard it was to jump back into it. I had completely forgotten how to get a newborn to latch properly. While in the hospital, I had 5 difference instances where I asked either my doula, midwife, and 2 lactation consultations to help me. Something just didn’t seem right. It was painful, she would fall off constantly, and it seemed like I was doing something wrong. After about a week, it was no longer painful. She was gaining weight at a normal rate and everything seemed normal.
When she was one month old, something seemed to change. She began “waking up” to the world more, but also had many crying spells throughout the day. With my oldest daughter, breastfeeding was the solution to most whimpers. With Adelaide, I would offer my breast when she was upset, and it seemed to escalate her sadness and frustration. That should have been my first indication, but I felt like perhaps she just wasn’t as hungry or that’s not what she wanted. She would spend 2-3 hours every evening in a crying fit. We talked to the doctor about it and she said that was “normal” to have a few hours a day or unexplainable crying. She gave me a few things to try, including some soothing techniques: swaddling, shooshing, and sucking (either pacifier or nursing). We also talked about how she would only nurse for about 5 minutes (or less) at a time, and I couldn’t get her to keep nursing after that, but that I was nursing on demand every 45 mins to an hour, and throughout the night. She encouraged me to keep her nursing longer if I could. We tried everything she suggested and nothing seemed to help.
I started to talk with friends about it and would say “you know, she’s just a difficult baby”. I would feel anxious as the evening approached knowing full well that a major meltdown was ahead. The crying fits would last 1-3 hours every night and it would usually end with her finally giving up and falling asleep in the carrier with a paci in her mouth. It was very discouraging. My husband and I would take shifts holding the screaming, inconsable baby. Awful, heartbreaking, and exhausting. I knew there was something wrong, I just couldn’t seem to figure it out! I also couldn’t remember how long it took for my daughter to be able to breastfeed “hands free” so to speak, or without my assistance. Even 2-1/2 months in, I was having to help her latch each time.
To make it easy, here are a few of the key signs that ultimately pointed us to a tongue tie:
At her 2 month appointment, she had barely gained any weight since her last appointment one month prior.. She went from 60th percentile in weight to 30th in one month. Basically, she had only gained a fraction of a pound. Generally kids stay around the same percentile as they grow, so a drop in weight gain rate was our first indicator
She wasn’t able to stay latched during each feeding. She would fall off constantly and I would have to help her re-latch multiple times a session. I had to hold her head pressed to my breast in order to keep her nursing, even at 2-1/2 months old
She would make a clicking sound while nursing - like she was trying to suck but couldn’t
Once she would latch, it would be 1-2 minutes sometimes before my let down came. In hindsight, it’s because she could hardly latch or she had a very light suck that it wouldn’t prompt my body to produce milk for her. This was a major cause of frustration for a hungry baby!
I noticed that my breasts didn’t seem as full. Turns out my milk supply was dwindling because she couldn’t suck well enough and my body was producing less and less
Breastfeeding seemed to frustrate her and make her cry more
The tip of her tongue was dented like a heart shape. It’s supposed to be pointed.
After reading a similar story from @christine_simplybloom on instagram, I pieced it all together. It’s like a light bulb went off. I immediately booked an appointment with my pediatrician the next day. I told her the signs I observed and that paired with her notes from the previous few appointments, she took one look and said “Yup, I definitely think she has a tongue tie. Let me get you a list of referrals for an oral surgeon and a few ENTs.” It felt so good to be heard by my doctor and have her recognize it right away! I read some horror stories of others who were not heard or believed and it ultimately ended their breastfeeding journey. I was determined to do everything I could to continue if we could.
The next day we had an appointment with a pediatric ENT. He said, “I can see she has a small tongue tie.” He ultimately left the decision up to us whether or not to revise it. The other option was to leave it and switch to pumping and bottle feeding. Given the signs and the fact that my supply was dwindling, we decided to get it revised. BEST DECISION EVER. That night, I was nursing her to sleep and she was able to stay latched for 15 minutes - and during that session I had 3 let downs (is that how you say that?). She fell asleep in my arms while I was rocking her. I have to admit I cried. It was sweet relief knowing she was getting the milk she needed. After that, she was like a new baby! She hardly cried, she’s been gaining weight like a champ now, and were back on track to a happy, healthy, growing baby girl! She was 2 months + 3 weeks old when we got it revised.
I’m so thankful for people like Christine who shared their story. I hope to shed some light on our situation to shed some light on an issue that isn’t talked about very much. If you have any more questions, feel free to reach out! I’m here to help or encourage or answer any questions you might have!
-Destinie