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When I was pregnant with my first child, breastfeeding was something I just assumed would happen.
It never occurred to me that I wouldn’t be able to nurse my child.
The First Sign of Trouble
I had a scheduled c-section due to my severe Crohn’s disease. Once I was all stitched up we tried to latch my new baby on. It didn’t quite work, and I felt like she didn’t get anything.
Look at how little she was! She weighed 4.5 lbs
The lactation consultants took a look at her, then went and got the doctor. It turns out that my daughter was born with a severe posterior tongue tie.
With a traditional tongue tie, there is a piece of tissue under the tongue that can restrict full movement of the tongue. It is usually vertical.
Her tongue tie was a rare variation, called a posterior tongue tie.
The tissue that restricted her tongue was underneath the skin that attaches the bottom of the tongue to the bottom of the mouth. Basically, it ended up attaching almost her entire tongue to the bottom of her mouth horizontally.
She could barely lift her tongue off the bottom of her mouth, let alone reach the roof of her mouth in order to suck.
The lactation consultants (LCs) had never seen anything like it. They asked the doctors, who were also confused. They told us that she would need to have surgery under anesthesia when she was six months old in order to correct it.
In the meantime, they gave us a nipple shield for my flat nipples and sent us home.
Once we were home, we did the best we could. But the shield began to be extremely painful, and I would have to switch sides with Lizzy about every 5 minutes because the pain was so intense. As a result of this frequent switching she got mostly the lower fat foremilk.
This can lead to weight loss, malnutrition, and green poops. Since Lizzy was already so tiny, any weight loss could have been catastrophic.
Finding an Answer
After two weeks of this, we went to see another LC, who has turned out to be a strong support and a good friend through this entire journey. I am so grateful and blessed that she was the one who was assigned to us: she was the head of the lactation department at Texas Children’s Pavilion for Women, and was extremely knowledgeable.
It was she who gave the name posterior tongue tie, which the regular doctors weren’t able to figure it out when Lizzy was first born.
This LC knew of a pediatric dentist who could correct the tongue tie with a laser. This is known as a release or revision.
He was the only one who used this method the city of Houston, and I found out later that there aren’t very many in the U.S. who can do it.
I feel like it was a miracle that this particular dentist was not just in Houston, but only about 30 minutes from our house.
We took Lizzy in to see her right away. She was three weeks old.
The laser cutting went well (and by that, I mean it was the most horrific thing I have ever experienced, but it worked).
However, after three weeks, we noticed that it had re-attached and we had to go back a second time.
While Lizzy’s mouth was been healing, we were doing our best to work towards her eventually latching on. The LC’s did not want to create nipple confusion, so they taught us how to syringe feed her milk that I pumped – she would suck on one of our fingers while we used a syringe to slowly push milk into her mouth through the corner.
Feeding Lizzy with a syringe.
We got a breast pump through the insurance company, and every time she ate, I would pump.
This feeding routine was very difficult, though.
Each syringe only held about ½ oz of milk, and she would eat 3-4.5 oz each feeding. It was a time-consuming process, that took 30-60 minutes.
At night, it was always an hour long because she was tired.
This was especially difficult for me because she would wake up, I would get her syringes ready (15 min), feed her for an hour, put her back to sleep (15 min), pump for 30 minutes and then clean up, washing all the pump parts and syringes by hand (15 min).
This whole process took almost 2 1/2 hours. I would get 30-45 minutes of sleep before she woke up ready to eat again.
For about two weeks I did this until I was so completely exhausted I had a breakdown.
One of my mom’s friends, an extremely dear woman whom I love, flew down from Denver for a week to help me out. She would get up and feed Lizzy at night, and I would pump.
It was amazing! All of a sudden, I was able to sleep in two-hour blocks instead of 30-minute blocks!
When she left, I asked my husband Phillip if he wouldn’t mind taking over the nighttime feedings while I pumped. He is such a good man – he didn’t even have to think about it. He just did it, without complaining or murmuring at all. He never threw the “I have to work full-time” card at me, which I love him dearly for.
Hopes Dashed Again
By the time Lizzy’s mouth had healed all the way, she was 9 weeks old. Her mouth had healed physically, but her mind had not.
Lizzy had become so traumatized by our attempts to breast feed that she just cried whenever she saw my breast or her lips touched my skin. This time period was probably one of the darkest, most heart-breaking times of my life.
By the time Lizzy was healed and it had become clear to us that she wasn’t really going to latch on anytime soon, we started looking for another way to feed her.
Having to Adapt
Lizzy’s suck was weak, and she would lie there with her mouth open, waiting for us to push the milk in.
This was a problem because it could cause difficulties with solids and speech later in life. We saw an occupational therapist, who gave us some exercises to do and suggested we start using a bottle.
We settled on the Medela Calma bottle.
We felt it would be the best because it had a series of chambers that opened to allow milk to come through the nipple ONLY if a vacuum was created.
This meant Lizzy had to actually suck.
She was pretty angry with it the first time we used it, but she figured it out after about 10 minutes. It turned out to be worth the cost of about $20 for 1 nipple and 2 8-oz bottles.
Her mouth and tongue are a lot stronger now – she could eventually finish a 6 oz bottle in about 10 minutes, whereas before it would take her over an hour take 3-4 oz.
At times I would to try to latch her on and she would sometimes root around my breasts when she was tired or hungry – but then I got thrush, which I didn’t want to pass it on to her. Instead, she became my pump buddy and tried to chew on the flanges!
She finally began to put on weight and grow! Having to pump turned out to be a blessing in the long run. When she was three months old, my Crohn’s caused some complications and I was hospitalized on and off for five months. Being able to pump milk while in the hospital allowed me to keep giving my baby breastmilk.
Now my little Lizzy is five years old, and she is thriving! Her brother, who is now two, also had the same posterior tongue tie. Thankfully, I knew what was going on this time, so I was able to get it corrected much more quickly!
I still ended up pumping due to health reasons (I was once again in and out of the hospital a few months after childbirth), but I didn’t have any of the stress because I knew what I was doing.
Now my goal is to share this information with as many soon-to-be mothers as possible, so they can learn from my struggles!
Posterior tongue ties are not very well-known, still, and are often ignored or misdiagnosed. There are also more pediatric dentists now who do laser cutting to correct tongue and lip ties. These are all part of the genetic defects known as “midline defects.”
Having knowledge about what causes nursing issues empowers mothers and gives us confidence. If my LC hadn’t told me what was going on, I would have felt like a failure. Now, I can feel pride in doing all that I can for my children.
Don’t Feel Like Failure
This blog post is designed to give encouragement and hope to those who are going through feeding difficulties and are ready to throw in the towel. I hope that I can inspire and uplift those who are struggling but want to continue.
I want to be clear, however: if you are not able to nurse for whatever reason, or give your child breastmilk, that is okay. What matters most is that you love your baby and that your baby feels your love.
Another version of this post written by Tiffany was originally published on Breastfeeding Confidential HERE