Freedom of Speech

Yesterday was definitely information overload, but we got the reassurance and confirmation that we needed. After a scary choking episode Monday night, we urgently were able to get Emmett in for an evaluation with his tie savvy Speech Pathologist.

If there is one phrase I could use to describe his Speech Pathologist, it would definitely be the "oral tie whisperer".

Her knowledge on this stuff was incredible, which assured Brett and I that she is exactly what our little guy needs.

Our visit started off with her asking some questions about Emmett's history and then she had me begin to feed him his bottle. Right away, she mentioned how she noticed Emmett did not have a good rhythmic motion with his tongue by the way his jaw was moving up and down, also commonly known as "munching" on the nipple. This was the main contributor to why Emmett has been ingesting so much excess air during feeds.

She explained that digestion starts in the mouth, so when the rhythmic motion of the tongue is disturbed from a tongue tie, the rhythmic motion of the entire gastrointestinal system is also disrupted.

She said that this fact paired with the neurological disruption from his tension is what has been causing Emmett to struggle with spitting up, burping, passing gas, and pooping among all other things. His esphagus, stomach, and intestines were also struggling to perform this rhythmic motion, causing his entire gastrointestinal tract to suffer. The other interesting thing that she shared was that because Emmett's tongue is restricted, it can't reach the roof of his mouth. This frequently causes tongue tied babies (including Emmett) to sleep with their mouth open, which can lead to disturbed quality sleep. She explained that normal function of the tongue is to press up against the palate during sleep because this helps release endorphins which act to promote sleep.

This just proves how many other aspects of the body oral ties can impact other than just feeding and speech.

She continued to mention the many other insufficient sucking mechanics Emmett was displaying, many which I had noticed when I was figuring out Emmett's diagnosis. She assured us that she did not have a concern for Emmett's ability to protect his airway, so she didn't think further investigation with something like a swallow study would be necessary. This was definitely reassuring to hear after the scary episode we had the night prior.

One very noticeable sign that a baby is not sucking efficiently is something called a "milk blister".

Milk blisters are just as they sound. They are small blisters that can form on the lips indicating increased friction from insufficient sucking.

She pointed out that Emmett has a milk blister in the middle of his upper lip. Brett pointed Emmett's milk blister out to me the other day, wondering if it was something to add to his list of symptoms, but I honestly thought it was just part of his normal lip anatomy. Credit went out to Brett for that one!

After Emmett finished his bottle, she began to show us some sucking exercises that she wants us to start doing with Emmett three times a day to help train him to use his tongue and jaw properly. She said that right now he is moving his jaw and tongue together as one unit, but proper technique would be for him to move them as separate units. While he currently has difficulty moving his tongue and jaw as he should be able to, it's good to get him into a routine and try to start breaking his inefficient sucking habits now.

The next part of the evaluation was the moment we had been waiting for. The speech therapist began examining Emmett's mouth to determine how many oral ties he has impacting his bodily functions. She began to list the following:

1. Class 4 upper lip tie

2. Class 3 right buccal (cheek) tie

3. Class 3 left buccal (cheek) tie

4. Class 3 anterior tongue tie

5. Class 3 posterior tongue tie

To put this in a better perspective for you, class 4 oral ties are the worst of the worst. This just speaks volumes to how much Emmett has been struggling to do tasks we all take for granted.

She said that Emmett for sure has five out of a possible seven total oral ties. She did mention that the doctor doing his procedure may or may not want to clip his bottom lip as well, but it didn't look too bad so she wasn't quite sure what he would end up deciding. As terrible as it was to hear how many oral ties Emmett will have to get clipped, it felt so good to have confirmation from a true tie saavy expert that the root cause of all of Emmett's struggles were from his many severe oral ties.

The final part of his evaluation consisted of the speech therapist showing us how to perform the stretches that will need to be done post-op. She started by doing them herself and then had me practice them as well to make sure I felt comfortable.

I've read about how much these stretches suck on the support group I joined on Facebook, but gosh they really do suck when your baby instantly starts screaming.

She explained that studies show that wounds in the mouth heal twice as fast as wounds outside of the mouth, so his oral ties could grow back in a matter of hours. She said that we need to start doing the stretches now with Emmett once a day and then a few days prior to the procedure we should start doing them every three to four hours.

You may be wondering why you would need to start the stretches prior to the procedure if there isn't a wound in the mouth yet?

She explained that it is best to establish a routine now, so after the procedure the stretches aren't a total shock to the baby when you also have a sore wound involved. She then began to discuss pain management for before and after the stretches. The first thing we can use is a herbal remedy called arnica.

Arnica is a tablet that you can dissolved in nursery water and drop onto the wound to help reduce inflammation and promote wound healing.

Arnica is used instead of infant Tylenol because it's not recommended to give infants Tylenol. She also recommended freezing some Q-tips dipped in formula or breastmilk to rub on the wound site, helping numb the area before and after the stretches. We will have to do the stretches every three to four hours around the clock for six weeks to ensure that the oral ties don't regrow.

We will meet with Emmett's Speech Pathologist the day after the procedure and then weekly thereafter for at least six weeks. To better explain how amazing this therapist is, Emmett's doctor does not schedule follow up consults with her patients because he trusts in her work and knows that she can handle the post-op process and detect if any wounds are not healing properly.

After leaving the evaluation, I felt confident that we truly have the best team involved in Emmett's care. My anxiety has definitely been getting the best of me after the choking event the other night, so it was a relief that I felt at peace again knowing that this procedure will be life changing for Emmett. Although the days leading up to July 31st are not going to get much easier, we already only have eighteen days left until procedure day (but who's counting)!

Oh, and I forgot to mention that Emmett doesn't have thrush after all. The Speech-Pathologist said that it's still "milk tounge" even if you can't scrape it because the milk becomes embedded in the tissue. After a few exercises to encourage Emmett to get his tongue to touch the roof of his mouth, his tongue was clear. Not to mention, the Nystatin that was prescribed for Emmett would have totally upset the healthy bacteria in his gut, causing him more gastrointestinal discomfort. Yet another misdiagnosis...