Disclaimer: I am not a medical professional. This story and advice is personal to my own experience, so please consult with your doctor before implementing any of the ideas or advice below.
When I was pregnant with baby #2, I had written down one piece of advice for myself. Check to see if baby is tongue tied and if so, take care of it immediately. You see, my firstborn had an anterior tongue tie and it caused a good deal of trouble with breastfeeding for the first 5 weeks. I’m talking, parts of me were missing and needed to be regrown sort of trouble. Sorry, that’s probably TMI. You can read all about that experience here.
Detecting a Tongue Tie for Graham
When Graham was born back in January, we right away asked the doctor if he was tongue tied and they said yes—but—it was a posterior tongue tie, one that might not impact breastfeeding as much as an anterior tie would. So they said. They suggested I see if I can get a good latch and maybe we won’t need it clipped like we did with Aiden.
Breastfeeding was still painful for at least the first few weeks but that’s fairly normal so I let it slide. However, I noticed that Graham would only eat for a few minutes on one side before falling asleep. I would schedule lactation appointments at his pediatrician’s office and they would do consultations and weight checks to see how much milk he was getting. It turns out, I had a lot of milk, and he would get a good amount in a short span of time. Problem solved….
Except that I noticed all of these other weird things about his feeding: he wouldn’t want to breastfeed in the daylight. I’d have to feed him in the pitch black of his room with white noise on. If I fed him while he was asleep, he would eat on one side for 8-15 minutes (a huge win in our breastfeeding journey). If I fed him awake, he would become overwhelmed by my letdown and only eat for a few minutes before getting upset, seeming like he wanted to eat more but just couldn’t do it. He couldn’t fully drain my breast, so I started to notice my supply going down. He would make clicking sounds as he ate indicating a shallow latch, no matter what we tried.
We began a cycle where I would try to catch him in a dream sleep state for every. single. feeding. to make sure he ate on one side for just 8-10 minutes (what we considered a full feeding for him). If he woke earlier than I expected, or a floor board so much as creaked as I snuck into his room, it was all over. He would barely breastfeed. I would then have to pump just to keep my supply up (and to get him milk, of course) and then we’d try a bottle. But for some reason, the bottle was even more ineffective. It would take him 30 minutes just to drink half an ounce of pumped milk. And if he hadn’t had enough to drink, he wouldn’t go to sleep. It felt like every feeding cycle had monumental consequences for his well-being and for mine.
The First Surgery
When Graham was 8 weeks old, I spoke with a friend who said her son had a posterior tongue tie as well and she described the exact same feeding issues Graham had. She said they got his tie released at 3 months and it was almost too late. I practically ran from that conversation to an otolaryngologist that week for a consultation, and within that same week, Graham’s lip and tongue ties were lasered.
I wish I could say that’s where the story gets better.
I knew that it would take some time for Graham to re-learn to use his tongue after the surgery, but I learned a few days too late that the doctor was supposed to have given us exercises to do with his tongue so that his ties did not reattach. Unfortunately, we weren’t told about exercises and by the time I realized it, his ties had already reattached.
We had a lactation consultant come to the house, and she not only confirmed that the ties had reattached (or were possibly never fully released), but she suggested we get them re-lasered. Within a week of receiving this advice, covid shut everything down. So there we were with a baby who could barely use his tongue, unable to drink from a bottle, still too young for solids, and needing a second tongue tie release during a global pandemic when all elective surgeries had been canceled. It was rough. I was on call 24/7, breastfeeding as often as Graham was willing, and most of the time, trying to catch him asleep while I did it.
A Bleak Situation as Covid Began
The pressure and stress of this was immense. We had an at-home scale so I knew he was not gaining weight. The one thing I was supposed to be able to do—feed my child, I couldn’t do. There were days when I thought he was refusing to breastfeed anymore. Days where I was inconsolable from the grief of our difficult and ineffective breastfeeding relationship.
We began working with a feeding therapist to try and get Graham to use a bottle or sippy cup or anything to supplement his milk intake. At one point we thought he might have silent reflux, so we worked with a gastroenterologist to get him reflux meds. We also continued to work with our lactation consultant and pediatrician, and then eventually a pediatric dentist. I was on zoom call after zoom call with doctors, trying to figure out how to get Graham more milk.
A Second Tie-Release Surgery
When Graham was 5 months old, the pediatric dentist confirmed that he did need his ties re-lasered, so I took him in, and they removed his tongue-tie, lip-tie and cheek ties. They gave us exercises to do and post-op check ups. Our insurance wouldn’t cover the surgery because he’d already had it done once but we were so desperate to get Graham to gain weight that it didn’t matter.
It was my hope that eventually breastfeeding would click for Graham and somewhere between his healed mouth and the reflux meds, he would learn to suck effectively and be able to get the milk he needed simply from breastfeeding. He never did.
It was my hope that we’d find a bottle that worked for him so that we could ensure he would get enough milk if he couldn’t from breastfeeding. This was largely a failure also.
Our New Normal
Eventually, what ended up working out was a sippy cup that looks like a honey bear with a straw. It enabled me to squeeze milk into his mouth without Graham needing to be able to suck. At 6 months, the “pick you up and dreamfeed” every cycle stopped working. He just developmentally grew out of it. So when he would wake, I would breastfeed him for as long as he was willing— typically 1-5 minutes on one side. Then, I’d go pump while Matt fed him 3-4oz of breast milk from the honey bear followed by feeding him avocado purée mixed with more breast milk. Each cycle, this process took about an hour and we did this at least 4 times every day from when Graham was 5 months old till 12 1/2 months old when I weaned him. Obviously his solids intake changed and grew as he did, but that boy ate a lot of avocado. I also dreamfed him at night around 10pm until he was 8 months old because he was too tired to wake up then.
Our sweet boy had weight gain issues until he was 8 months old. For a long time, they worried about his weight, then his height, and lastly his head size. I was nervous all the time about whether Graham was okay, and whether I would be okay too. You see, right around the time that we realized something was really wrong with Graham’s feeding, I was diagnosed with postpartum depression. The fear, anxiety, stress, sadness and anger of our situation felt almost too much for me to bear. There were days where I felt like this new normal was too exhausting for me to handle while also trying to care for my 2 year old at the same time.
I did a lot of crying out to God. I asked friends for prayer, received prayer ministry, and starting talking weekly with a Christian counselor. Each of these things was exceptionally beneficial in helping me to just put one foot in front of the other as I continued to care for my boys.
I’m relieved to say that I’m now on the other side of this journey. I weaned Graham last week at the age of 12 1/2 months old. The doctors no longer worry about his weight or have us come in for extra appointments. We still use the honey bear with Graham, but he is now able to suck milk all on his own. And I still talk with a Christian counselor bi-weekly, because while I no longer feel the weight of PPD, I’ve found it beneficial to continue talking with her.
So, if you have a baby with a tongue tie, here’s what I would advise:
- Consult with a medical professional about whether your child’s ties should be released. I highly recommend seeking out an International Board Certified Lactation Consultant. Not all lactation consultants are IBCLCs–the ones who are have typically dealt with tongue ties and can give more directed advice about it. I didn’t realize there was a difference in LCs but there is. IBCLCs typically work with insurance and will even come to your house to consult with you!
- If breastfeeding is your goal, in my experience it has been best to have a baby’s tongue and lip and cheek ties released. Again, consult with your doctor, but my sons have had both types of tongue ties and both needed them released. If you are planning on a release, the sooner the better. It typically takes a baby double the amount of time to re-learn a new way to use their tongue. We had Graham’s ties fully released at 5 months– should have taken until he was 10 months old for him to relearn to use his tongue. And even though for Graham, our breastfeeding relationship didn’t change after the second release, I’m still glad we did it. I’m happy to know we tried everything possible to get him to gain weight. Tongue ties can cause speech impediments later in life for children so I reassured myself that even if it was just for un-hindered speech later on, it would be worth it.
- Not only was an IBCLC helpful, but a feeding specialist was beneficial for us too. Kid’s Skill Building or speech therapy centers often have people who work specifically with infant feeding. Even though we could only see our consultant over zoom (re:covid), she helped us find the honey bear cup which enabled us to start getting even more breastmilk into Graham without him needing to use a bottle.
- Information on tongue ties is hard to come by. Some things I learned a long the way: an anterior tongue tie needs to be clipped with scissors; a posterior tongue tie needs to be released with a laser (ideally a water laser–it’s called an infant frenectomy) best done by a pediatric dentist. An anterior tongue tie very rarely grows back and typically doesn’t need exercises performed afterwards. A posterior tongue tie however, needs weeks of exercises performed around 5 times per day. In my quest for information and help, this blog post was affirming for me.
- Lastly, I’ll say, I felt like I fought a crazy battle for Graham’s well-being and it took quite the toll on me. I have never done anything more difficult in my life, and I have had 2 unmedicated labors. Get the help and support you need to make sure that you are doing okay as you try to care for your littles.
That was a lot! If you’ve made it this far, thanks for hearing our story. If you’re going through something similar I hope this information is helpful and please feel free to reach out with any questions you might have. Know that no matter how difficult it might get, even the time of feeding your little one with a tongue tie is just a season and it will pass. You’ve got this, mama.
