Monday, July 18, 2011

"tongue tied" is not just a figure of speech...

Every mommy wants to be the best mommy they can. At least I certainly hope they do. I know that my kids are about the most precious thing in the world to me, and I can't stand it when there's something even slightly wrong. So now I'm kicking myself over something that I didn't even know could be a problem.
Most everybody has heard of  being "tongue-tied", even if they're not sure exactly what that means. I was vaguely aware that some babies are born with tied tongues or cleft palates, but I never thought much more of it.
When my youngest was born, she was a robust, healthy thing, and she seemed to me to be feeding pretty well, but she pretty rapidly lost weight (not to the point of her being in danger, but she was a scrawny little thing there for a while). I did notice that she drooled while breastfeeding, and was hungry every hour, and she wanted to feed for an hour. This got worse over the course of 3-4 months, and I thought it was because my milk supply was drying up, which I attributed to trouble with my thyroid. I started pumping and bottle feeding, and she started putting on weight and being more satisfied with her meals. She's now 8 months old and completely bottle-fed. She was also an extremely "puke-y" baby (which she has outgrown some), and drools constantly. She leaves a trail wherever she goes, I'm not even kidding. I started transitioning her over to solid foods at 5 1/2 months, and it was a total mess. She just pushed the food out everywhere, nothing went in. So I waited a week or 2, and then tried again. A little better, but still messy. But hey, practice makes perfect, right? So I kept at it. She's been eating solids for a month now, and she still can't really get all the food down. I noticed that she thrusts most of it out with her tongue, and can only get it down if I shove the food to the back of her mouth. So that got me thinking. I had noticed that her upper lip was really attached to her gums, to the point that I was wondering if she had any upper gums -they're that far up there under her lip. And the tiny band of skin that connects the lip to the gums comes all the way down and even wraps around her upper gums, right in the middle of what will someday be her 2 front teeth. I started wondering if maybe that was causing her trouble with eating. So - I googled it, and aha! my poor sweet girl has an attached upper frenulum. It's similar to what happens to the tongue - the band of connective tissue is too short or too thick, and movement is restricted. I started reading about all the problems other mamas were having, and there it was - the drooling, the trouble breastfeeding, trouble eating... I wanted to cry for not having noticed this sooner. I had no idea that this was something that could happen.

So - off to the dr we went (she really needed a checkup anyway), and not only is the lip tied, but so is her tongue. She is otherwise a healthy, happy, beautiful baby girl, and her weight is still good - thanks to my moment of genius when I decided to start making her "baby smoothies" in her bottle rather than trying to cram it down her throat on a spoon - and all of her other development is excellent. The doctor reffered us to an early intervention program offered by the state so that they can evaluate her and see what the best course of action will be. We met with a coordinator on Friday who did Maezie's initial evaluation. Basically she just asked a lot of questions: is she able to eat at all? not without a bottle. does she make any kind of consonant sounds when she babbles, bababa, nanana, etc? nothing. does she combine vowel sounds, oowee, eeeyo, etc? not at all. does she drool? copiously. does she put things in her mouth a lot? EVERYTHING. does she suck or chew on her fingers? yep.
Next step is to have a therapist come out and determine exactly how delayed in her speech and eating she is. Then she starts therapy, or goes on to an ear, nose and throat doctor to see about surgery. Which scares the stuff outta me.
I know that this isn't the worst thing in the world that could happen to my girl, but it's still upsetting. And nothing to mess around with. As the coordinator explained - the biggest danger to her development is that because she is otherwise a smart, bright, healthy little girl, when she tries to do the things that her brain is telling her she should be able to do (talking, eating), it's very frustrating, and after a while, she'll just stop trying altogether, which can have a negative impact on her brain development, and really slow her down for the rest of her life. And she is waaay to smart, and bright and beautiful to let that happen! I just really want my baby girl to be able to function normally, and take part in everyday life with the family. Perhaps the most frustrating part of all is that this should never have been a problem. It should have been caught and fixed when she was tiny - and then it could have just been snipped and she would never have known the difference. Now she's too big to be snipped, and they won't do anything without more evaluation.

Yesterday I took the girls out for ice cream with their nana, and it was Maezie's first day sitting up in a high chair instead of in her infant carrier (she is getting WAY too big for it!!). She was so excited to be up and a part of what was going on. I tried giving her just little tastes of my ice cream, just so she could share in the experience, and she couldn't swallow any of it. It just drooled out all over her shirt. I kept trying, because she was loving that little bit of sweetness on her tongue, but it was really breaking my heart. I want my baby girl to be able to sit and eat ice cream with her mama and her nana and her big sis. She should be able to do these things. I want her to be able to say "dada!" and "mama!" and "sissy!" I hope that therapy works. I hope that surgery is completely unnecessary - or if it is, I hope it is over and done quickly.

1 comment:

Allison the Meep said...

Poor little lady! I hope the surgery helps her out and she catches up quickly.

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