Tongue & Lip Ties: What Stole Our Newborn's Happiness & Our Nursing Relationship
I hate that I am writing this post... but a huge fire has been lit under my momma rear-end to spread this message.
Long, extended feeds?
Poor weight gain?
I'll start by sharing our story, but if you are more interested in seeing pictures and getting some resources, feel free to skip ahead!
When our baby girl arrived, I knew I wanted to breastfeed... for many reasons. That's not what this post is (necessarily) about, however it's one of the many relationships that has struggled and/or ended due to our daughter's undiagnosed lip and posterior tongue tie. My heart aches that it wasn't caught sooner.
When our daughter was born, she struggled with a poor latch, so the lactation consultant gave us a nipple shield. The next day, another consultant saw us and told us we didn't need the nipple shield.
For the first 2 weeks, I was exhausted feeding her... which I assumed was normal since she was my first born. It was hard to know whether she was latching correctly, getting enough, etc. We went through feeds of her nursing easily, and others where she would SCREAM and refuse to latch, which resulted in trying to give a bottle of pumped milk (unfortunately, since I pumped so early, I dealt with oversupply and overactive letdown for a while).
At 2 weeks, we went back to the lactation consultant who told us she was "being lazy" and needed to just be convinced to continue eating through massage, stimulation, etc.
The screaming while nursing continued and was even getting worse.
Finally, I started using the shield full-time and it seemed to solve the issues of her not latching correctly, but slowly, "colic" symptoms started to emerge.
She gained weight well the first month. Then, the second month it started to decline and she was becoming a very fussy baby. She also moved and squirmed constantly and never seeming to be at peace.
So I cut out dairy, soy, eggs, nuts, cruciferous veggies, caffeine, etc. I can't even tell you what I was eating.
At her two month appointment, I had teary eyes asking if the doctor thought it could be reflux or ties causing the problems. No, he assured me. She is just a fussy baby and she'll grow out of it.
Within the next day or so, we had an extremely fussy day of her screaming in pain. We took her to the ER and the next day, another pediatrician diagnosed her with silent reflux.
I thought all our prayers were answered... and she did have great improvement once we started treating the reflux... at first.
But when nursing time would arrive, I could feel myself tensing and anxiety building. I was always so, so, so nervous. I can't even put it into words how anxious I would get to feed her.
At this point, we were worried about her eating enough because she had slowed in weight gain tremendously. I was blaming myself and stressing that she wasn't getting enough nutrients to grow and develop appropriately.
While the reflux symptoms were improving, I was stressing about her weight (constant weight checks didn't help). I decided to go to the Breastfeeding Center of Pittsburgh as one last attempt to save our nursing relationship.
They watched her feed and were struggling to give us any advice (yet again). I asked about possible ties because of symptoms such as clicking and the lack of latch, to which I was immediately shut down, "That doesn't mean she has a tie." I then made a comment that she would nurse for a long time... sometimes upwards of 50 minutes.
DING! That was it, they assured me. They said to only let her eat for 10 minutes a side, she would get better at it. It was "passive nursing" and she was expending too many calories. In the meantime, supplement with a bottle afterwards.
This didn't make sense to me. She was already not gaining, so I did think she could be using too much energy, but she wasn't transferring milk as it was, less time didn't seem to be the solution. Then if she was going to be supplementing, how was my body going to keep up?
After a day of this, I decided to strictly pump and supplement. She always seemed better with a bottle anyway.
Her weight started improving, however my supply TANKED, and tanked quickly. Within 10 days, I was getting droplets in a 20 minute session. I just couldn't do it and stopped pumping (with no problems my supply was so awful).
At this point, she was 3.5 months and she was on formula with about 2 oz of breastmilk from a stash I had froze... but the gas was still excessive and it was still difficult to get her to feed well and calmly. I knew something was still off.
I started to extensively look into ties. Could everyone have missed it? I asked every doctor we visited.
I posted in a mommy group and was immediately reassured by moms to get the ties inspected. Worst case, they would said she didn't have them. I was recommended to go to Brunswick, OH to the Brunswick KiDDS Laser Dentistry.
It was a 2.5 hour drive each way, but I was desperate for her to have relief. I called and go the first appointment available.
The following week, my grandma, Charlotte and I made the trek to Brunswick.
I was in tears of frustration and also relief when he looked in her mouth and confirmed she had a moderate/severe lip and posterior tongue tie. Not only was it diagnosed, he could reverse it with a laser in less than 5 minutes... which is exactly what we did.
We then met with the lactation consultant at the center, Lisa. She was fantastic. I wish I had gone to her those months before.
I asked her why she thought ties were becoming more prevalent. I loved her even more with her answer... She referenced Pottenger's Cats (hello, NTC program!) in which formula feeding over the past couple generations is started to create these adaptations, which may be why we are seeing more and more of them these days. She mentioned that 10+% of newborns now are born with them. I've also seen some information out there about MTHFR and methylation issues contributing to ties.
Here is a before (top) and after (bottom) picture... Lip on the Left, Tongue on the Right.
I'm writing this 5 days later and we already have a different baby.
More sleep. Like, she's napping for more than 20-30 minutes AND she's only been up 1x the past two nights to eat (which she needs to get that growth moving again!)
She eats! She eats peacefully! She doesn't kick and squirm in your arms or fight the bottle.
She's still trying to figure out her new mouth, so it's not perfect yet, but every day it gets better... and I'm in tears again because I'm so beyond frustrated that every doctor blew me off and it's become so important to me that I share our story.
Here's a picture of Charlotte two days post reversal. So happy and 4 months old! And look at her sticking out that tongue :)
BE AN ADVOCATE.
If something seems off, it probably is, mama!
Tongue Tie & Lip Tie Resources
Here is a list of some resources for tongue tie & lip tie that I used to diagnose her myself.
If you are within driving distance of the Brunswick KiDDS Laser Dentistry Center, I cannot recommend them enough!!!! Call them and get on the schedule today: 330-220-6363. You will be so happy you did!!