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Posterior Tongue Tie – Part 2 June 4, 2012

Despite seeing some major improvement in Naomi’s latch and suck after her tongue tie was lasered and upper lip tie was revised with scissors, it was not the instant fix I had been led to believe.

As time went on her latch and suck deteriorated and my milk supply dropped dramatically. I saw the lactation consultants from the hospital again when Naomi was 3 months old and she only transferred about 3/4 of an ounce in over an hour and she was fussy and crying the entire time, not to mention my nipples were sore and flat. I also found that she had dropped from the 25th percentile to the 5th percentile for weight in just one month. I felt hopeless and wanted to throw in the towel.

A dear friend I met online invited me to join the Tongue Tie Support Group on Facebook and I posted pictures of Naomi’s tongue on there and also emailed them to Dr. Kotlow. Within a couple of hours I had responses from several IBCLCs on the support group and Dr. Kotlow, all said that her tongue still looked very restricted.

I asked Dr. Kotlow if he thought it was worth going back to the ENT who had done the first revision, I will never forget his respose: “Fly to Albany . . . ” Tears streamed down my cheeks as I read it and re-read it. I knew that was what we needed to do. I saw a new IBCLC who agree that the tongue was still restricted and recommended craniosacral therapy, when Naomi was 4 months old we did one CST session and then drove to Albany to Dr. Kotlow’s office.

I second guessed myself when we pulled up to a small old building, then we stepped inside and were immediately greeted by a friendly staff, there was a carousel in the office and pictures of how tongue tie effects breastfeeding all over the office. We were immediately given a private room.

Dr. Kotlow was just as kind and professional in person as he is over email. He took a very thorough history from us, and assessed N’s suck, and upon examining her mouth said it looked like she had never had a revision – that the ENT had probably only taken the anterior tie, not the posterior. He showed us a very informative video and explained very carefully the procedure and what to expect afterwards. N was gone for less than 10 minutes and was not even crying when she returned.

Dr. Kotlow said we could breastfeed as long as we needed to, he showed us how to perform exercises to keep the tongue tie from reattaching and made sure we had more CST lined up. He gave us his cell phone number and told us to keep in touch with him every day no matter what – and I did, she’s almost 6 months now and I still email him about once a week.

We followed up with 2 more sessions of CST and suck training exercises from the new IBCLC. Naomi’s latch and suck steadily improved. We are still doing the suck training, the stretching to avoid reattachment, and plan to get her some more sessions of CST when we have the funds available to do so.

Recently Naomi gained 18 ounces in 15 days – that is incredible for her! My milk supply increased enough that I weaned off of domperidone. It is a little low now that I weaned off, but, still better than it was before her second revision even taking the domperidone.

Naomi’s suck and latch are not perfect, my milk supply is not perfect. Things may never be “normal” by most people’s standards. I still am proud of how far we’ve come. I am happy that not only is she breastfeeding better, but, hopefully she will reap the benefits of not being tongue-tied for the rest of her life.

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