Light Blue for Laryngomalacia

July 10th was laryngomalacia awareness day and this year Coping With Latyngomalacia asked that those who wanted to show support and awareness for this airway defect paint their nails light blue.

❤️This year, I painted my nails light blue for my Little Fox, who is a Laryngomalacia warrior. ❤️

So, what exactly is Laryngomalacia? Laryngomalacia, or LM for short, is a congenital abnormality of the laryngeal cartilage that results in obstruction of the airway. I have had it described to me by a doctor as my son having a "floppy" larynx. LM is the most common cause of stridor (noisy breathing)  in infants.

Being the parent of a LM warrior can be a terrifying and stressful journey. It is scary when you hear stridor especially if you have never been exposed to the sounds of stridor, it is alarming. When your baby has every feed pour out of their mouth and nose, when you witness your child experience retractions while trying to breathe, when you are faced with lack of weight gin or worse weight loss, you are in a constant state of anxiety and fear while also being hyper alert to every little thing.

And then it happened. He stopped breathing. It was late at night and he just stopped breathing. I lifted him from the bassinet we had next to the bed and my heart regained its beat when I heard him take a breath.

I didn't sleep the rest of the night. I held him. I kissed him. And while holding him close on our front porch swing, I begged him to not leave me and to just breathe. I was overwhelmed with emotion.

The rest of the day was uneventful as far as his breathing was concerned. I was constantly on watch.

My husband was hopeful it was just a fluke.

The next night it happened again. But this time, after being unsuccessful in having him resume and continue breathing, 911 had to be called. The incident was labeled as an Apparent Life Threatening Event, or ALTE since he had stopped breathing over 30 seconds.

He was admitted for testing and observation for several nights and we ended up with a hospital grade apnea monitor for several months.

Thankfully we have not had another incident of an ALTE but I have hardly slept in 11 months. I check on him every night multiple times a night. Even with him sleeping right next to my side of the bed, those two incidents have left me unable to relax enough to sleep.

I'm an exhausted mess but this amazing little boy is worth every restless night. ❤️

*Not every baby with laryngomalacia will experience an Apparant Life Altering Event*

"R" Is For Reflux

Little Fox has been battling reflux from very early on. I have friends who tell me that they have friends who have "reflux babies" and that it is an easy fix once meds are on board.

While for many that may be true, there are those of us whose babies battle reflux, silent reflux and even Sandifer Syndrome and haven't found that "magical cure" yet.

The past few days have been exceptionally brutal. In fact, I brought him in to the pediatrician and we discussed upping his dosage due to his weight and growth and I was hopeful we would have relief. The pediatrician we saw was not his normal doctor as she was booked so we were scheduled with another doctor in the practice.

He did an exam, agreed to increase the dosage, told us to give it time to see a difference, and sent us on our way. My husband went and picked the newly prescribed medication up and brought it home.

The dosage had been DECREASED.

So here I am, yet another day/night of listening to and watching my baby boy suffer. At times, especially during and after feeds, he becomes inconsolable.

We both need sleep here!

He screams.
He arches.
He gets seizure like tremors.
He vomits.
He is restless.
He wakes easily.
He postures.
He pulls back from feeds.
His eyes roll.
He's gassy.
He has sour breath.
He chokes and gags...

The list goes on.

If your little one is struggling with reflux, research and educate yourself. I'm currently learning about MARCI dosing and other feed thickening options.

Most importantly, breathe. Breathe through the sleepless nights and the endless mugs of cold coffees.

Breathe through the never-ending loads of vomit soaked burp cloths, bibs, blankets, and clothes (baby's and yours!)

Breathe through the days you don't get a shower and barely get time to pee.

No shower, no make-up, no sleep.
Just breathe...

Breathe through arms that are sore from rocking and dinners that have gone cold.

Because as hard as it is for us, it is hard for our little ones, too.

So just breathe, and rock that baby longer....