The Vicious Cycle

June 14th was the next hault in Emmett's progress, when he all the sudden became super fussy, very gassy, was not taking bottles well, and just overall uncomfortable again. I had recently started adding breastmilk bottles back in rotation with the new Gentlease formula, so I immediately stopped the breastmilk thinking that he might just not be able to tolerate it all together. He had also started showing some signs of reflux after feeds, which I had mentioned to the Pediatrician at our last visit.

The Pediatrician explained that babies do not have a strong esophageal sphincter, a muscular valve between the esophagus and stomach, which causes milk mixed with stomach acid to come back up their esophagus. He stated, studies have shown that by three to four months of age, the esophageal sphincter tightens in infants which helps improve their reflux symptoms. The doctor also explained that there is medication that babies can take to help reduce the acidity in the spit up which can serve as a comfort measure, but nothing will help with the act of spitting up other than time.

At the time of this doctors visit, Emmett's reflux symptoms weren't super severe, so we knew it would just be a waiting game until they would resolve on their own. However, now that Emmett was having another "episode" of symptoms and stopping the breastmilk bottles only partially helped, I decided to call the Pediatrician and ask for a prescription for Famotidine in hopes it would help with Emmett's discomfort. We picked up the medication from the pharmacy that same day and within 24 hours, Emmett was completely back to his happy, normal self again.

At this point, I’m sure you can guess by the title of this post that this cycle continued to occur over and over again. With each "episode" Emmett had more and more symptoms added to the list and they became more severe overtime. The episodes also got closer and closer together, so we would have less days with our happy baby.

Emmett's symptoms during an episode:

• Bearing down

• Noisy eating

• Crying mid-feed and then refusing the bottle

• Looks hungry, but refuses bottle

• Cluster feeding

• Frequently falls asleep during feeds (not after)

• Extremely fussy during and after feeds

• Coughs mid-feed, then gasps for air

• Jerks legs out during or after feeds

• Frequent hiccups after feeds

• Squirmy (especially during feeds)

• Inconsolable • Noisy sleeping (screams and cries in sleep too)

• Arching

• Forceful spit-ups

• Excessive amount of spitting up

• VERY gassy (his toots are legit adult strength)

• Bloated belly

• Mucousy stools

• Goes long periods of time without pooping

• Cat naps during the day or no napping at all

• Short nighttime sleep stretches

• Overall does not seem to get quality sleep

I was so sure that this was gastrointestinal related and more than likely he was allergic to something in the formula because it got to the point that he would not just fuss, but scream after feeds and I also started to notice mucous in his stool.

It is truly heartbreaking to see your baby scream and have this look of "help me" in his eyes and you can't figure out what is making him so sick.

After having many phone calls with a nurse at our Pediatrician's office, when the next "episode" occurred, we decided to change formula again. The nurse had suggested Gerber Good Start formula which was another partially hydrolyzed formula, but I questioned if the Gentlease he's on now isn't working, then what is going to be different about the Gerber Good Start? A week or so back, I had spoken to a couple close friends about a formula called Nutramigen, which was the only formula that worked for their "colicky" babies symptoms.

Nutramigen is a fully hydrolyzed formula that is commonly prescribed for a Cow's Milk Protein Allergy (CMPA). It is very expensive, I’m assuming due to the extra measures the factory has to take to make sure it doesn't get contaminated during the production process.

Brett and I were so desperate to help our little guy, so we took the plunge and bought Nutramigen. We also scheduled an evaluation with a GI specialist in hopes they could help us figure out this cyclical nightmare. Within 24 hours of starting the Nutramigen, Emmett was a brand new baby! We finally had hope that this formula was the answer to all our prayers.

NOPE. Less than a week later, another episode. I was frantically researching for which formula we could try next. Elecare? Puramino?

Elecare and Puramino are both amino based formulas, which are even more expensive because they're the cream of the crop in the formula world. I was told that they are tolerated by 99% of babies.

One friend I spoke with about Nutramigen said that only the ready to feed version worked for her son, but the powdered version didn't. I guess her Pediatrician said that the way they make the ready to feed formula allows babies to easier digest it. I'm also read online that ready to feed formula is less likely to get contaminated because it's sterile. Brett and I rushed to the store to get our hands on the Nutramigen ready to feed formula, as the amnio based formulas are not easily found on store shelves. Again, within 24 hours we had a brand new baby. This time we didn't get our hopes up because we had been through this cycle so many times, how could we be sure it was different this time? We were quickly losing hope.

Emmett had some improvement for maybe 24 hours after starting the Nutramigen ready to feed formula, but once again we ended up back at square one. I spoke to the nurse at Emmett's doctors office again to see is she had any other suggestions and she replied "maybe it's colic". Brett and I had heard the word "colic" thrown around a few times before, but we simply couldn't accept the idea that our baby was screaming and visibly in pain for no reason and that he would just grow out of this overtime. We truly felt the "colic" diagnosis was a cop out into looking for an explanation. We had a glimmer of hope in our appointment coming up with the GI specialist, but I began to think maybe this isn't GI related after all. I started to research other avenues and came across tongue ties.

Despite being a Registered Nurse with pediatric experience, I am not very versed in the tongue tie world.

I wasn't so sure that a tongue tie was what could be causing all my son's misery, but I wanted to be proactive and make an appointment for an evaluation with an ENT (ears, nose, throat) specialist as well, just to start ruling things out.

A few days later, we went to the GI specialist and I l started rambling on and on about the cyclical events and symptoms Emmett had been experiencing over the last several weeks. Of course Emmett was miraculously having a good day, so the doctor couldn't see the symptoms for himself. He did an examination on Emmett and thought he looked completely healthy from a GI perspective. He did mention that Emmett was technically on track with his weight gain, but it seemed to be a slow gain for a boy who had two tall parents. He also mentioned that Emmett's stool in one of the pictures I showed him looked slightly pale, but he didn't see any signs of jaundice during Emmett's examination. He confirmed that the mucous in Emmett's stool was totally normal for an infant. He offered to give us some Elecare formula to try if Emmett had another episode, but he simply said that Emmett is displaying classic signs of "colic". He said there are five things you can do to help "colic":

1. Gripe water

2. Mylicon has drops

3. Probiotic

4. Windi stick to help release gas

5. Time

Many studies claim that infant colic peaks around four to six weeks of age and completed resolves around 12 weeks old. Emmett was seven weeks old at this point.

Brett and I left feeling extremely frustrated because we had already been trying all these things and once again, another provider attributed our son's suffering to "colic".

Let me say this loud and clear. "Colic" is a symptom, NOT a diagnosis.

We were not willing to accept time as an answer because we were running out of time, so we focused in our next appointment coming up with the ENT specialist.

As we were waiting for this appointment date to arrive, I started digging deeper into my research on tongue ties. After reading an abundance of articles and searching for people's stories on tongue ties through social media, I began to discover that maybe Emmett's symptoms were realted.

I came across multiple articles that claimed tongue ties very commonly go misdiagnosed due to healthcare professionals and therapists not being educated on them. It even mentioned that in many cases, Pediatricians, ENT specialists, Speech Pathologists, and Lactation Consultants misdiagnose patients due to lack of knowledge or simply not believing in the impact that tongue ties have on an individual's health.

It was after reading that article that I realized even the ENT specialist that we were scheduled to go see might not catch this diagnosis if Emmett had it, so I needed to find a true specialist in this specific field. I started to study pictures of different grades of tongue ties and once I felt I had a better understanding, I lifted up Emmett's tongue to compare it to the pictures. Low and behiold, it was clear as day to me that he has a tongue tie.

I then discovered that there are other oral ties in addition to tongue ties, called lip ties and buccal (cheek) ties. I lifted up Emmett's lip and again, it was clear as day that he also had a lip tie.

I started to get a glimmer of hope that I was finally on the right path to discovering an answer to all of Emmett's health issues.

As I continued my research, I began to realized that I had failed to identify some additional symptoms that Emmett was experiencing, specifically related to how his oral ties were impacting his feeding skills. I noted that Emmett had something called “milk tongue” after feeds. This is when there is white milk left on the back of his tongue following feeds. Usually a babies tongue will be cleared of milk after feeds when it makes contact with the roof of their mouth, but in Emmett's case his tongue wasn't able to reach the roof of his mouth due to its restrictions from the tie. He also had always dribbled milk out the corners of his mouth, which I didn't think anything of it because he had been doing that since birth, but now I realized it's NOT normal and directly related his ties impeding tissue mobility. Another concern I noted was that at the beginning of a feed he appeared to have a nice wide latch on the bottle with flanged lips, but as the feed went on, he would get more and more tired from using compensatory mechanisms to eat and he would start "nibbling on the bottle" instead of using an effective sucking. This explained why he was taking 45-60 minutes to finish a bottle during each feed. After discovering these additional symptoms, I continued to gain confidence that I was headed down the right path to get Emmett some answers.

As mentioned earlier, I knew that I needed to locate a specialist that was well versed with oral ties. I continued my search to locate a Teathered Oral Tissue Specialist in my area. I ended up finding one located in Chicago, so I called them when they opened the next morning to get an evaluation scheduled as soon as possible. They had a cancellation for the upcoming Monday, so we were able to get in very quickly.

I learned throughout my research that oral ties are treated through a procedure called a frenectomy. This procedure is done by using a laser or scissors to cut the tie, helping to release the tension on the tissue and allowing the tissue to then move freely.

I asked the clinic on the phone if they can do the frenectomy during the evaluation appointment as I was eager to get Emmett some relief as soon as possible. She said that the appointment would be an hour long. The first half would be the evaluation and the second half would be the procedure. I felt so thankful for coming across that clinic and for them being able to get Emmett in so quickly, but I soon learned that rushing to get Emmett in for the frenectomy was the wrong way to go about treating his oral ties.