Our tongue tie story, part 1.
Thursday, April 9, 2015
The past three months since Lanie's birth have been difficult at best. People often see her quick and contagious smile and ask, "Is she a good baby?" and I never know how to answer that. Is she sweet? Absolutely. Do we adore her? Oh yes. But she's so often in pain and has had so much trouble with eating and sleeping that the days are long and the nights are brutal.
When Lanie was born and began to nurse, I noticed right away that her latch wasn't great and that there was a loud and distinct "clicking" noise when she sucked. She pulled off and on quite a bit, was squirmy and restless, and caused me quite a bit of pain as well. However, I remembered that Liam and I had had trouble breastfeeding in the first several weeks (like most newborns), so I chalked it up to just getting to know each other and getting the hang of things. Liam was born with a very obvious anterior tongue tie that was caught and revised at the hospital on day 1 of his life. When he cried, his tongue would look forked, and he could barely move it past his lower gum line. Remembering this, I asked the pediatrician at the hospital if Lanie might have a tongue tie as well. I was told that she might have a small one, but because she could stick her tongue out, it wouldn't be bad enough to cause any problems.
Fast forward one month. We'd been having significant breastfeeding difficulties, but pressed on. I nursed Liam for 13 months, so I wasn't about to give up. Every time Lanie nursed, she still made the clicking sound, would kick around restlessly, would pull off and on, and would swallow a significant amount of air. She'd then start crying because of gas pains and would typically spit up when I burped her. Even with a bottle, she clicked and sucked in air. It didn't seem like she was able to wrap her tongue all the way around it to form a solid latch. She hated lying on her back, in the swing, or being put down at all. So I carried her (and still do) about 90% of our waking hours in an Ergo carrier where she sleeps the longest and stays happiest. In the meantime, I wasn't draining properly, so I dealt with clogged ducts and ultimately mastitis, twice.
At her one month pediatrician appointment, I brought up the tongue tie question again and was told, "She may have one, but we don't deal with tongue ties." The doctor said revising a tongue tie was "in vogue" and "controversial" and "they didn't do it 20 years ago, so I don't know why we're doing it all of a sudden now." (Side note: They did do it 20 years ago, or at least 29 years ago, as my own tongue tie was clipped at 11 days old.)
At this point, I started to question all of my mama instincts. Was she just a difficult baby? Was I too spoiled by Liam's easy eating and sleeping? Did I just need to deal with it? Still, I knew something was wrong. She shouldn't be in so much pain, and neither should I - all day and all night. She seemed gassy, uncomfortable, slept so lightly, and seemed to be in constant pain. Miserable for the baby, miserable for her mom. It would've been one thing if I knew breastfeeding wasn't working and could just pump bottles, but even the bottle didn't seem to be a better option.
At her two month appointment, another pediatrician at the same practice diagnosed her with reflux, which felt like a breakthrough. I thought, 'So maybe that's all it is. Reflux.' The pediatrician also heard the clicking noise while she nursed, and recommended we see a lactation consultant. I asked, yet again, about the tongue tie and this pediatrician also said it might be there, but shouldn't be causing all these problems. We started Lanie on Prilosec twice a day and that first night, she slept an incredible 7 hours! A breakthrough? Not really. I chalk it up now to her having vaccines that same day, because she went back to her 2- and 3- and 4-hour stretches shortly after that one amazing night.
Finally (finally) we hired a lactation consultant to come to our house. Almost immediately, when she heard and saw Lanie nursing, she knew there was a posterior tongue tie. Upon assessment, she also found an upper lip tie. Unfortunately, at least in the Raleigh area, there seem to be very few medical professionals who are familiar with posterior tongue ties (a tie that's further back than the more obvious anterior tie) or lip ties. The lactation consultant recommended a pediatric dentist in a town nearby who specializes in laser frenectomies, which is a short procedure that releases the tongue and lip ties using a laser, which is arguably more accurate and less painful than cutting it with a scalpel. But since the laser procedure is not covered by our insurance, the high out-of-pocket cost felt prohibitive and I looked into other options. Long story short, there weren't good options. The ENTs I spoke with said the only option for a baby her age was to put her under general anesthesia for the procedure, which is not something I was comfortable with.
Ultimately, God provided every dollar we needed for the procedure through some generous friends at church, and the procedure is happening today! I've joined a Facebook group for tongue and lip ties which has been immensely helpful and encouraging, and many babies who have had this procedure latch better almost immediately - and their sleep and reflux improves dramatically as a result. We are also doing something called craniosacral therapy (CST) with a chiropractor, which goes hand in hand with loosening the jaw and neck and preparing for the laser surgery. We had our first adjustment yesterday and will go back tomorrow.
I will update as soon as I can when I know part 2 of our story. Feel free to ask me any questions in the comment section and I am more than happy to tell you what I know (or point you to resources I've found).