mama story: everything I wished I'd known about my baby's tongue tie

 Precious Tanner in the hospital as a newborn (L) and thriving today (R) after finally being diagnosed and treated for his tongue tie.

Precious Tanner in the hospital as a newborn (L) and thriving today (R) after finally being diagnosed and treated for his tongue tie.

Today's mama story comes from pumpspotting community member Rachael Schlick. Thank you Rachael for sharing your experience and wisdom with us!

Breastfeeding. It shouldn’t be painful, your nipples shouldn’t become flattened or discolored, and if any of these are occurring, your baby probably just has a bad latch- try again. Practice makes perfect, right? What about when there is no pain, your nipples still look normal, but baby isn’t gaining, or, worse, losing weight, despite feeding around the clock. He’s fussy, “refluxing”, falls asleep during feeds (is he tired? This feed is approaching an hour, I know I sure am…he’s a newborn, it’s normal, right?). Popping off the breast is common, and your boobs turn to rocks multiple times a day. You will probably hear you have a colicky baby. Your milk hasn’t stabilized yet and your breast needs to be soft for a good latch. It’s acid reflux. Supplement with formula for extra calories, or add cereal to thicken bottles (mind you, baby can’t take a bottle- but probably because you’re not trying hard enough). Maybe, everyone else is right. Then again, maybe not.

Tanner was born at 41+1 weeks, a healthy 8 lbs.

Hospital staff excitedly informed me upon discharge we logged more than double the amount of nursing minutes they hope to see in the first 24 hours. The pediatrician said the vomiting that began 24 hours after birth was Tanner clearing out his system- totally normal. It did become normal, our normal, as he vomited every feed and then some. At 2 weeks old (he was scheduled for weekly weight checks after losing more weight before his first pediatrician appointment), he had only gained 1 oz since discharge, and he painted the doctors office in throw up. We were promptly sent for an ultrasound that ruled out pyloric stenosis.

At 3 weeks, we were labeled Failure to Thrive and admitted to Levine Children’s Hospital.

We spent 4 weeks of Tanner’s newborn life living in the hospital. Initially, I was told I was overfeeding him. I followed their every 2-3 hour schedule, despite his cries, and he lost half a pound overnight. Showing signs of dehydration, he was given an NG tube. Speech, pediatricians, GI and an ENT began a 4 week long game of throwing ideas at my baby hoping something would stick. His weight continued to dip with any oral feeding as they came right back out. They settled on a diagnosis of severe reflux, and were “hopeful” he would outgrow it. This, and a swallow study showing he aspirated anything less than Honey Thick, resulted in Tanner getting a Gtube and being discharged on 24/7 continuous feeds, antibiotic to speed up digestion, and 3 (yes, 3) different reflux medicines. The next 2 months I spent exclusively pumping around the clock, and looking for an answer that actually made sense because I knew the hospital was missing something.

I uncovered a similar FTT story on a mom board late one night, and this baby wound up being tongue tied. 

I never experienced any pain, which seems to be the first and foremost symptom. Then again, his tongue did seem “lazy”, and when he cried it never lifted, but cupped. I asked for a referral to an ENT, who promptly informed me that because his tongue extended past his gums, and there was no visible frenulum, he was not tongue tied. “You can’t expect an easy fix. He will grow out of it. And there is no such thing as a posterior tie, but it’s fun to play doctor, isn’t it?” I immediately called a dentist. Upon seeing Tanner, he mentioned lopsided facial features. He opened his mouth. Posterior tongue tie and an upper lip tie.  Revisions took 30 seconds and my son, having not eaten in 2 months, was nursing.

The ENT was right about one thing- it wasn’t an easy fix. Weeks worth of stretches multiple times a day, working with an IBCLC to strengthen his tongue, body work to release the tension, and surgery to remove a Gtube followed. His palate is still reshaping itself now that his tongue rests properly. But he feeds like a champ (breast and bottle), is finally gaining weight, and now even a spit up is rare.

Pain is the #1 reason mothers quit breastfeeding, and is one very good indicator a tie may exist.

Symptoms may present in the mother, baby, or both. Left uncorrected, the child can face craniofacial abnormalities, speech, feeding and developmental delays, sleep apnea, tooth decay, and so much more. Most ties aren’t the typical cut and dry visibly tethered, but all ties have a posterior component that few are educated on how to properly revise. If you and your little one are struggling on this journey, I urge you to educate yourself on tongue tie; it can make a world of difference.