Dorothy & Noah’s Story

A great source of information and a wonderful supportive community is the Tongue Tie Babies Support Group on Facebook. https://www.facebook.com/groups/tonguetiebabies/ That is where I met Dorothy. Here is her story as she shared it in the group (shared here with permission from Dorothy).

Hi, everyone. Noah’s ULT/PTT was revised Tuesday morning (at 0830). I just thought I’d let everyone know what we are experiencing because I personally couldn’t read enough personal experience stories when I was trying to decide what we should do.

Pre-revision symptoms: Hour long STRESSFUL breastfeeding sessions. Noah would only stay latched for a minute or two thrashing around, pulling on my nipple, turning his head, crying, frustration, lots of stopping to burp and spit up. Coughing, choking…(Sound like Over Active Let Down? – my problem, right?) Very uncomfortable latch and nursing sessions, depression, wanting to quit, crying…

Early post revision: I am holding back the joy because I feel like this is too good to be true. Noah is CALM at the breast. He stayed latched for a marathon NINE minutes this morning, and came off the boob SMILING and CALM. I wanted to cry tears of joy. I’m afraid to be happy because I’m afraid to jinx anything – I’m afraid to make this post, but you all need to know this because you helped me get here.

Some things I learned for post revision care that might help others: Be ready. I bought gloves (Noah will associate stretching with the latex in his mouth – I’m hoping this will make suck training with a bare finger easier later if he needs it – I’ll let you know how it goes). I put on a glove and Hyland’s teething gel for stretches. He screams, but calms down quickly as the gel takes effect. I don’t do the stretches in the same place or before or after any specific activity in hopes that there will be no other associations. It’s not as bad as I had prepared myself for, but it’s tough.

We started arnica the morning of the revision, and I make sure he get it on time, every time. His lip was pretty swollen, but coming down quickly. I gave him acetaminophen twice yesterday – at 2pm and 8pm (he hasn’t needed it today). We have used Rescue Remedy a few times after the stretches as well. A drop on his lip is distracting enough to calm him down a bit – he focuses on licking it off and the taste of it instead of what just happened to him. He’s wearing his amber teething necklace today. Not sure if it helps, but he looks darn cute in it.

Have a “nurses station” with all your gloves, arnica, teething gel, acetaminophen,… and pen and paper. Write down across the top row “Arnica, Gel and stretch, acetaminophen…” then underneath you can keep track of what time you give each thing. Remember when baby was newborn, and you couldn’t remember which boob you gave or at what time? This is like that. Write it down and you won’t have to worry.

Check with your provider on correct dosage for acetaminophen based on the concentration of the suspension and the baby’s weight. Remember that herbal remedies are not regulated by the FDA. Do your homework, be prepared, and you will make the right choice for you and your family – which will almost never be the same as what’s right for someone else.

Dorothy was also kind enough to continue to update the post with how Noah’s revision is going. The following update made me cry. I remember this same wonderful feeling as she is having. The feeling that finally came when my son was able to nurse without causing me pain. That feeling of joy instead of pain.

We just got back from a walk. Did stretches (horrible), and he’s been on the boob for FIFTEEN minutes. This is a record for us. It was about 7-8 min of eating. Now he’s just comfort nursing, but I don’t mind it He snoozes a bit, then eats a bit, snoozes a bit, eats a bit… Normally I would have taken him off the breast, put him in his crib to get away from the intensity – I would have been ‘touched out.’

I looked forward to hearing updates from Dorothy. Having been through the revision process myself I knew some posts would be happy and some would be sad. There can be so many ups and downs after revision. It truly is a two steps forward one step back process. Then came this update:

I feel sometimes like there might be some sort of placebo effect. Like right now he’s nursing, and it feels SO different. But then I wonder if it really does or if it’s in my head. I want this revision to fix things for us SO badly. I want to know that my guy isn’t hurting for nothing… Does me even thinking that mean that it’s real? I know his response to revision (longer times staying latched, less gas, less spitting up, calmer at the breast-little to no thrashing) are real. I don’t think babies can have any placebo effect. Conclusion: even if nothing changes for me in the long run, if the changes for him remain, it was worth it. I think I’m just afraid to believe these results-I’m afraid they will vanish.

Bawling again. There are so many mothers out there like Dorothy and I who are ready to do anything for our little ones. And not only will we do anything for ours but for others as well. November has been Tongue Tie Awareness Month. Tongue Tie Awareness lives with us all year long, though. We have been through so much and we can’t help but to reach out to other mothers to help them where they are. Thank you, Dorothy, for sharing your story.

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Dorothy’s Profile Picture – Another Testament to Her Desire to Help Others