Operation Grow Joey: Part 2–Relevant Reading

Since I’ve had such a huge response to my Operation: Grow Joey story, including several parents whose children had similar issues, I thought I’d share some of the sites I’ve been reading, in case they may also help other parents to help their kids.

Loving Our Guts has a great post about tongue tie, since 3 out of 4 of their family members have it. She includes the problems that have arisen from these tongue ties over time. I’ve always been a gagger at the dentist, and have had “clicky jaws” as long as I can remember. I wonder if my PTT is why.

Another way to recognize tongue tie, from Today’s Parent “Breastfeeding and Tongue Tie”:

“Tongue-ties are frequently missed by doctors, nurses and midwives,” says Genna. “Even the obvious ones get missed. And some are not obvious.” Parents may be able to identify the problem by observing the baby: When he cries, does his tongue go right up to the top of his mouth? If not, he may be tongue-tied.

In this picture, you can see Joey’s lingual frenulum, and how his tongue does not rise very far in his mouth. Again, because I also have a posterior tongue tie, I didn’t know that his tongue wasn’t normal. And because I didn’t have any pain when breastfeeding him (not all mothers will experience that, though it is common), the doctors and pediatric nurse I had appointments with never thought to check his tongue for abnormalities.

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On Thursday, our base pediatric nurse (and IBCLC) said that Joey’s referral for his frenotomy should be in on Monday, so I plan to go in and visit her, have him weighed again, and get the referral number from her so that I can make his appointment for as soon as possible. The nurse also told me that if the office in Fresno has a long wait for appointments, that she and Joey’s pediatrician can call and work things out so that we can get in sooner.

I’m really excited for Joey to breastfeed again (though I will pump and use an SNS, lact-aid, or feeding tube while nursing in the beginning, so I can make sure he still gets enough as he re-learns how to suck and swallow from the breast) AND for him to not spit up. This past week of EPing (exclusive pumping), I’ve put him to breast as much as he had the patience for after bottles. If he’s very sleepy he will go to sleep after nursing and not spit up, but if he’s wide awake, he will often spit up a little bit after nursing while he plays (not as much as before though, for sure).

From Dr. Kotlow’s handout on tongue ties and lip ties:

The tongue is held down in the center of the tongue causing the posterior tongue to
hump up. The baby can not extend the tongue to remove it from the back of the
mouth therefore causing gagging. The gagging causes the baby to regurgitate. This
appears to be reflux. Release of the tongue may lead to elimination of gagging and
and thus eliminate reflux. In infants when the frenum has not been released,
suggested medical treatment may be to put the baby on medication. After a lingual
frenectomy is completed the reflux often goes away immediately especially with the
“posterior” tongue ties. If we wait until after the frenum is revised to treat the
infant using medication, the physician may not have to place the infant on
drugs.

Here is a video of a frenotomy procedure and the baby nursing afterward.

I cried when I read this letter to Kate, the author’s baby who had also had faltering growth, but who was content to starve and meeting developmental milestones. The mother was just as surprised as I was to learn just how small her baby was, but within days of extra feeding, and supplementing with pumped breast milk, Kate had become more alert, smiled more, and became more vocal.

You’re so content, and besides your weight, your developmental benchmarks are right on track.  You can hold up your head, move your arms and legs, and smile all the time.  You are awake more often and sleeping well at night.  In my estimation, your nursing has been great from the start.  It really never occurred to me that you were hungry.

But apparently my notion of the status quo is way off kilter.  You’re falling off the growth charts.  You aren’t getting enough calories.  Your improved sleep has likely come because you’re too exhausted to do anything else.  Your doctor couldn’t have been nicer about the whole thing, but I’m pretty devastated that I’ve let you down…and that I’ve been totally ignorant of the shortfall.

This UK website, Milk Matters, has a ton of information on tongue ties and how they can affect not only feeding, but also so many other aspects of life if not clipped. (Have a baby who is “picky” about textures in her food? She might have a tie.) The comments are numerous, and there are SO many stories of unrecognized tongue ties causing problems until the PARENT discovered the tie and got it corrected.

In related news? A few of Joey’s outfits will have to be retired, as they’re too small for him now. He’s doing so well!