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*

Best Bottle for Nectar Thick Feeds

Wow! It has been a while since I have updated the blog, hasn't it? It has been a whirlwind of crazy since the last few months of my pregnancy and since Little Fox was born! I'm hoping to get back on track and be more present!

I thought I would start back with a post that can hopefully help other mamas and littles who are facing situations similar to ours which create a desperate search for a bottle/nipple combination for thickened feeds.

We had feeding issues right from the start with our rainbow baby, but that is a complicated story I'll save for another time.

The important thing to know is that those feeding issues led to the need for our new little addition to be placed on thickened feeds, nectar consistency.

This change in feeding plan came not only with emotional stress, but also with the added stress of trying to find out "how" to feed our new baby when his fluids were not able to flow through any of the nipples we had tried. In fact, under physician orders we were "trained" in how to properly make cuts into a perfectly good nipple in order for our son to be able to drink.

*Cutting, widening, or altering nipples in any way should never be done unless medically necessary. Doing so increases risk of choking and aspiration and also speeds up the wear on the nipple itself.*

Internet and baby forum searches for alternatives to nipple modification left me empty handed so I started looking into any and all bottle styles I could find.

That's when I came across the Comotomo bottle and saw the brand has the option of buying "y-cut" replacement nipples. Although on the pricier side, I crossed my fingers and placed an order for one 8 ounce bottle and a package of 2 y-cut replacement nipples.

My second purchase, a twin pack.

These things are amazing!!!

• The bottle and nipple are both made of silicone. 
• The bottle has a wide neck so washing or adding powders and thickening agents is easy.
• It is top rack dishwasher safe
• The volume information is molded and not inked, so it won't wear off over time. 
• I have had no leaks!!!!
• It's squishy....so comfortable to hold. 

The absolute best thing about this bottle/y-nipple combo? Little Fox's nectar thick feeds flow at the perfect rate for him! I'm so happy to have found a system that works for us and allows him to feed safely and comfortably.

Please keep in mind that he is on formula that is thickened under a pediatrician's orders for diagnosed and documented medical reasons. It is not advised to alter nipples or deviate from formula mixing directions unless medically necessary.

*Little Fox was diagnosed with laryngomalacia and swallow delay.