Our tongue tie story, part 1.

Thursday, April 9, 2015

This is a little different from my normal blog content, but I wanted to write this out for my own memory and also in case someone is helped by our story. Unless you do some digging, there isn't much information about lip ties and tongue ties and the effect they can have on every aspect of babyhood (and, therefore, motherhood). This is the "before" of our story. The "after" coming soon.

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).

10 comments:

  1. Hello! I've been following your blog for awhile now. I just want to encourage you. We recently went through this same thing. We discovered our daughter (our first baby, who is now almost 4 months old) had a posterior tongue and upper lip tie when I was having immense pain nursing her and she was so fussy while nursing. We had hers revised at 3 weeks old by a dentist that does the procedure with a laser. We also did CST and I've taken Charlotte to the chiropractor a few times. Everything has helped her SO MUCH. I just want to encourage you that it will get better, it may take some time, but your sweet little girl will learn to use her new tongue soon enough. I definitely recommend making follow up appointments with the lactation consultant, that made a world of difference for us. The hardest part for us was doing the stretches on her tongue to keep it from re-growing back the way it was.This facebook group has been great too: https://www.facebook.com/BlueCocoonlipandtonguetie?fref=ts. Okay, sorry for rambling. Just know you are not alone, I was so discouraged when we went through this because I felt like no one knew about it. Thanks for sharing your experience. Prayers and encouragement for you and Lanie.

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  2. Way to follow your instincts! We had a terrible times breastfeeding. Little man wasn't gaining weight, I was using a supplemental nursing system (SNS) with a friend's breast milk, and I dreaded every feeding. Finally at six weeks a pediatric dentist took one look at him and diagnosed an upper lip tie. He had a frenectomy and after about 36 hours of nursing being even worse (he was probably sore) it was night and day difference. We also did some CST after one of the six lactation consultants we worked with thought he had a bubble pallet . Hope the procedure helps you and Lanie!

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  3. Thinking of your family in this trying time and sending you positivity and strength!

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  4. Hello! Okay, so my mouth just dropped open when I read this post! I've been following your blog for a year or more so hearing about a posterior tongue tie here of all places just blew me away! PTTs are so little known!

    Let me back up...my baby brother was born two years ago and shortly afterward diagnosed with Down Syndrome and the hypotonia that often accompanies DS. Right from the beginning he has had trouble nursing and gaining weight because he leaks so much of the milk. My mom has nine children, all of whom have been exclusively breastfed, and she has counseled many mothers new to breastfeeding, so she knew something was not right beyond Down Syndrome and thought perhaps a tongue tie. The pediatrician said that wasn't possible because he could stick his tongue out. We consulted an OT when he was just a few weeks old who gave up some pathetic little exercises that didn't help anything and blamed the feeding issues on DS. We struggled for two years to get him speech therapy through our state program and finally consulted with a private speech and language pathologist in CT, considered to be the best in the world for treating children with Down Syndrome. As soon as she looked in his mouth she diagnosed him with a posterior tongue tie and upper frenulum tie. As you well know, there are very few doctors who even acknowledge the reality of this tongue tie, much less will do anything to correct it (including Addison's regular ENT, the head of ENT at Children's National, no less.) The SLP referred us to a surgeon, the head of ENT at Yale, whom with she had worked to develop the surgical procedure to correct posterior tongue ties. It's done with a scalpel instead of a laser for accuracy and he makes one nip at a time, check the movement, nips again, etc., until he gets the proper movement for speech and feeding. Addison had the procedure in September (delayed so long because of a serious seizure disorder and the treatment which rendered him inoperable). It has since reattach (very common) and he is going back to May to have it nipped again...literally as I read this post my Mom was speaking with the surgeon in CT to schedule his surgery. :)

    The worst part of the whole situation is that Addison has struggled with speech and especially feeding because he went diagnosed for so long. And the issues already presented by the hypotonia have been magnified to where in January he was so underweight we were considering a GI tube (thankfully, we have since gotten him gaining weight again and out of danger.) The good news is that Addison ENT here in D.C. turned out to be a med school friend of the surgeon in CT and when we shared Addison's story with him he contacted the doctor in CT and is now learning about posterior tongue ties and sending his colleagues to CT to learn the procedure. So even though this did not come in time to help Addison we are excited to know his story may help other babies.

    Also, the SLP informed us posterior tongue ties are hereditary...my mom has a PTT, which was never an issue for her but two of my other brothers (13 and 11) who have always struggled with speech both have PTTs and were able to have them corrected last month and are already seeing so much improvement.

    All that to say...I know where you are coming from and the frustration involved. So happy you were able to get a diagnosis and correction for sweet Lanie...I will be keeping her and your family in my prayers!

    Hugs,
    Brianna

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    1. Oh, gosh. After I posted that comment I realized how long it was! Sorry about that...

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  5. Hi Whitney. :) I know how you feel! I have two little girls, one now 30 months old and the other nearly 10 months. I struggled to feed them both to start with and both were diagnosed with reflux. They vomited so much that I wondered how they ever got any nourishment at all - and indeed, their weight gain was not great. Both were put on Infant Gaviscon which went some way to relieving the problem. Both got especially bad aroudn 4/5 months and then began to improve. My eldest mostly grew out of her reflux around 6/7 months, my youngest around 5/6 months. It really does get better - eventually! But the lip tie thing .. no medical professional ever mentioned it to me. I found out, much too late (online), that my youngest had it and by the time our NHS (I'm in the UK) sent out an appointment to have a consultant look at, she was no longer young enough to have the procedure without a general anaesthetic and her symptoms had begun to improve so I cancelled it all. But only after discovering her lip tie did I discover my 2 year also has one. And I have one too! My own mother struggled and eventually gave up breastfeeding me and I was a constantly vomiting, wakeful baby. Still, it took a facebook group to flag up lip ties for me to find out! Talking of facebook groups, I'm a member of one which you might want to join: https://www.facebook.com/groups/305931969507720/?fref=ts Reflux Support Group. Hope all goes well for Lanie and it helps her (and you!). Well done for persevering xx

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  6. Hi! Just wanted to share my story too! My 10 month old son was tongue tied and, as he was my first, I didn't know what normal breastfeeding looked like so we didn't get help right away. We did get it clipped at day 9 because our big "something is wrong" sign was that he couldn't latch well and when he did he seriously sucked holes in my nipples. He had the clicking, he was terrible with a bottle, and wanted to eat ALL THE TIME. Poor guy. Poor me. The clipped tongue did vastly improve his ability to take a bottle, thankfully. Because of the damage to me, I had to pump for weeks so I could get to the point of even tolerating clothing not to mention a hungry baby. The first re-attempt to latch he sucked off all the new skin and looked like a bloody vampire. I handed him to my husband, took a shower, came downstairs and told him we were weaning to formula. I have never been so happy, I think I was happier than the day he was born... I'm not even joking. The relief. It was sad too, I knew several people whose babies had tongue ties and the clipping fixed it instantly. We did see improvement but not much. He was not a determined nurser and isn't even all that interested in most of his bottles to this day! He is big and strong and growing but now I realize some of it was just personality! All this to say, it's hard. There is no one right answer for every family. I hope you guys find relief and this is a solution for you.
    Also, I had the natural home birth with a midwife, doula, and we saw lactation consultants and ENT doctors. There is not perfection on this side of heaven and I thank God every single day for the unnatural gift of formula, clean water, bottles, and well, His Grace to my family. I have been reminded that sometimes "all natural" isn't best. It was/is a hard lesson for me!

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    1. Oh, and all those doctors and people who say "well, babies adapt" and "my baby had a tie we didn't fix"... lol. My ENT doctor says she clips at least one a day in the Buffalo area. Seriously. She said it is very common but it's all about nipple compatibility! Some dyads have no nursing problems if mom's nipples can accommodate a tongue tied baby. Some people have seriously issues and some relatively minor annoyances. Every time someone tells us a "I know a tongue tied baby..." story my husband winks at me and at some point will say to me "nipple compatibility" and wink. It's our little joke because it makes so much sense! The things you never thought you would joke about... lol.

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  7. My son's lip-tie was corrected his first week, but we went 10 months before we were able to diagnose and correct his lip tie. Holy guacamole--did it make a difference! I pray you and Lanie have as much relief and Rhys and I did.

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  8. Oh my goodness, Whitney! How hard this season has been for you! I'm praying for you and your little family extra right now. Believing and hoping this treatment will bring you all relief and comfort! <3

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