Wednesday, April 12, 2017

Laryngomalacia: The World of Unknown, to a World of Much Known


The World of Unknown, to a World of Much Known

Written by: Courtney Buhr at 

If you are reading this post, you are probably experiencing the same things we experienced when we first heard the word Laryngomalacia. What is this? When should we trust our instincts? Where should we turn to? and How do we cope with all of this? Yes, its an emotional roller coaster, so read this post to learn how we went from a world of unknown to a world of much known!
Have you ever heard:
  • “Its normal for babies to choke on amniotic fluid”
  • “Its normal for babies to be congested from amniotic fluid”
  • “Your just not nursing your baby right”
  • “Your just spoiling your baby”
  • “Its normal for an oxygen monitor to beep a lot”
That may be true of any normally healthy new born baby, but not when it weighs on your conscious that something just isn’t right! If it doesn’t feel right its not!

June 12, 2015, was one of the best days of our life as we finally were able to meet our second child! A few hours after he was born, he choked and was immediately suctioned, but it was “normal”. He wouldn’t latch, but it was “normal”. He wouldn’t stop screaming and crying, but it was “normal”. He flailed his arms in his sleep, and he made weird noises, but it was “normal”. For everything I knew was wrong, the doctor or nurse had an excuse for why it was “normal”.
I NEEDED REASSURANCE, so at my son’s 2 week well baby check, I brought up my concurs with his PCP. He was quickly admitted to the NICU for stridor (noisy breathing) and sleep apnea (not breathing). The next day we were sent to Children’s Hospital, where he was diagnosed with Severe Laryngomalacia.
At 2 months old, he had dropped weight from 90% to 20%. which meant he needed surgery. Now we really started to worry as we were advised of possible tracheomalacia and bronchiomalacia. That’s when we had no idea what to do, who to turn to, or how to deal with all the crazy emotions.
Now he’s almost 2 years old. He’s been diagnosed with other related conditions, he hasn’t slept through the night since he was born, colds put him in the hospital, he has been put under for 2 surgeries and 4 scopes and will be having his next scope in 6 weeks. He is on several expensive medications. He sees a plethora of doctors and he goes to therapy 3 times a week
…and just like my instincts told me…its NOT normal!

This whole journey had thrown us into “a world of unknown”, just like the Coping With LM Organization describes. We have been through the worry, we have been judged for everything we do or don’t do with him, and it has tested our mommy and daddy relationship, but there is nothing more that has helped us stay strong for our kiddo, than Coping with LM.
This has been an amazing support group for our family, and so helpful in educating us about this condition! The best part, your never judged for having a conscious that something isn’t right, or that your “spoiling” your kid. They have offered us many resources for doctors, feeding, and anything that is related to Laryngomalacia. When our son had his first surgery, it was on short notice, and they made sure that he received his care package before his surgery. Being able to quickly access helpful information in one place, and know people are there to help and listen, weather its your neighbor or someone halfway across the world, has made a world of difference in advocating for our son and making the right medical decisions. Coping with LM has help us transition from a world of unknown to a world of much known!

Saturday, March 11, 2017

10 Reasons Why You Shouldn't Use A Store Bought Breathing Monitor On A Baby With Laryngomalacia

Perhaps one of the most important topics I will ever speak about here at Coping With LM, is the danger of using a store bought breathing monitor on a baby with laryngomalacia.  Laryngomalacia causes an airway obstruction and because of that, a hospital grade monitor, rescue oxygen and proper medical support is needed to ensure the baby thrives without any complication.

It's 2:00 AM and the monitor is alarming. Your baby is blue and not breathing. You call 911 but it will be a few minute before paramedics arrive. Rescue oxygen is a must anytime an apnea monitor is being used.

Typically, the prescribing doctor will set limits (when to alarm at slow heart rate, fast heart rate and lung movement) on the monitor prior to first use. The alarm limits are decided by the baby's age are lowered as the baby gets older. Store bought monitor normally have low limits (that can not be changed) to avoid false alarms. 

Store bought monitors are not made for prolong use, they break quickly which causes unreliable readings.

If the doctor can not download and view the data, he/she can not prescribe treatment, i.e. extra oxygen, CPAP, BiPAP, surgery, reflux medication or a sleep study.

When a baby is prescribed a hospital grade apnea monitor, the medical company comes to the house, gives a CPR class to parents and caregivers, offers education on how to properly use the machine along with proving parents with plan of action, should their child stop breathing.

Store bought breathing monitors are known for not detecting actual events.
Megan says, "I would regularly witness my son stop breathing and the lights flashed green as if everything was fine. Around nine months old  we found out he had moderate to severe sleep apnea and would have frequent pauses in breathing over 25 seconds in length which should have set the alarm off, but never did."

Hospital grade apnea monitors are made to fit growing babies. As the baby grows, the medical supply company supplies new leads and equipment to ensure an accurate read.
Christina says, "We  tried  a store bought monitor but the elastic dug into my son's skin and I had trouble getting it to read."

Parents see the monitor flashing green, not alarming and believe everything is alright. Significant apnea can go undetected by using a store bought breathing monitor.

Hospital grade apnea monitors monitor heart rate (slow and fast) and lung movement. Store bought monitors don't normally monitor all three. Some just monitor breathing while others just monitor movement.

For a baby without an airway defect, a store bought breathing monitor is probably a good way to ease a new parent's mind. The truth of the matter is, store bought breathing monitors are not made to detect apnea, which is a symptom of laryngomalacia. While it may be easier to purchase a breathing monitor online (and have it shipped to your house, thanks Amazon Prime!) than to bother your baby's doctor (or even have a sleep study done) the reality is, it's not worth it. Severe, untreated apnea can cause life altering complications that can be prevented by using a hospital grade apnea monitor.

If you believe your baby stops breathing during sleep please call his/her doctor immediately and ask for a sleep study. 

In health & happiness, 

Tuesday, February 14, 2017

Read With #LuTheLamb Fundraiser

Wednesday, January 18, 2017

ZERO Blankets In Coping With LM's Donation Box

Friends, as of today (January 18, 2017) we have ZERO baby boy blankets and only a handful of baby girl blankets to include in our care packages

We accept handmade baby blankets (size 36in x 36in) made of new yarn, cotton or fleece. Blanket patterns and ideas can be found on our Pinterest Page.

Donations can be mailed to: 
Coping With LM PO Box 313 Port Monmouth NJ 07758 USA. 
All donations are tax deductible. 💙

Why handmade blankets? 

Laryngomalacia Mom Lisa explains,

Brielle with #LuTheLamb

"My daughter Brielle, received her care package on Wednesday and had her Supraglottoplasty surgery on Thursday. Thank you so much for the support and the beautiful care package. My husband and I were blown away!" 💙

Handmade blankets are personal, comforting and made with love. 💙


Molly with #LuTheLamb

No act of kindness will go unnoticed! 

Saturday, December 17, 2016

Holiday Giveaway: CLOSED!

Happy Holidays from everyone at 
Coping With Laryngomalacia, Inc.!

We are so excited to be offering a 
giveaway to our amazing families!

Gift bag includes:
 #LuTheLamb stuffed animal
#LuTheLamb tote bag
She Shines: Sparkling Reflections Of You Journal 
Hallmark pen set
You First Journal by Lea Michele
Savannah Bee Travel Gift Set in Lemongrass Spearmint Honey
Thirty One Creative Caddy in City Charcoal Swiss Dot
That's How I Knot handmade  charm bracelet
Poofy Organics soap bar in Peace On Earth
Brooksie & Cas duck lovie & frog  hat (size 9-12 months)

*over a $100 value!*

  • Once all four tasks are completed, leave a comment on this blog post with:
     1. Your name
    2. Valid Email address

One random winner will be selected and Emailed on 12/30/16/.
This giveaway is valid worldwide.
Shipping is paid for by Coping With Laryngomalacia, Inc.
Coping With Laryngomalacia, Inc. is not responsible for International custom fees. 
This giveaway is not sponsored by Facebook or Instagram. 
This giveaway is not sponsored by
All items were donated to Coping With LM, Inc.

Friday, December 16, 2016

2016: The Year In Review

What a year 2016 has been for Coping With Laryngomalacia, Inc.

On July 10, 2016 we celebrated our 2nd Annual Paint Your Nails Light Blue for LM on #AirwayDefectsDay with tremendous support! 

We gifted five, $100.00 Pint-Sized Powerhouse Grants and sent over 100 Care Packages to babies with life threatening #laryngomalacia, around the world.

We launched the first ever #LollipopsForLM Project this Halloween and continued our fundraising efforts with Amazon SmileBraveletsBig Sky BibsJamberry and Brooksie & Cas

We accepted a wonderful merchandise donation from SquarePrint and a generous monetary donation from NSW Ambulance

We hosted a huge parent support live chat with Gelmix Thickener and continued our partnership with Chibebe Snuggle Pod Australia by extending our program to the USA.

With your support, we raised over $1,300.00 with our 'One Shirt = One Care Package' Fundraiser this past November and made CWL history by raising over $700.00 on #GivingTuesday

Finally, we humbly received the 2016 Top-Rated Nonprofit Award from GreatNonprofits and became a bronze nonprofit with GuideStar USA, Inc.

As 2016 comes to a close, I can rest peacefully knowing- with your support, Coping With Laryngomalacia, Inc. and #LuTheLamb have fulfilled their missions. Families-around the world- are supported, strengthened and educated. So thank you for giving, volunteering, supporting and loving CWL... it is because of YOU, we were able to accomplish what we have in 2016. 

Health & Happiness in 2017.
-Stephanie Hueston, CWL Founder & President 

Wednesday, November 23, 2016

Giving Guide With Coping With LM

With the Holiday Season quickly approaching, many supporters are looking for ways to give back and support Coping With Laryngomalacia, Inc. 

Our volunteers have put together a Giving Guide so supporters can choose how to give to Coping With LM, in the most meaningful and significant way.

Please share this post with family and friends, your support is appreciated!

Tax deductible donations of any amount can be made at

CWL's Online Store Holiday Sale
When: 11/24-11/18
Details: Use coupon code HOLIDAYLU15 at checkout for 15% off your entire purchase!
Shipping worldwide. 

T-Shirts For CWL Campaign
When: now until 12/1
Details: We are calling upon our community to raise awareness for laryngomalacia, tracheomalacia and bronchomalacia while supporting our mission! Each t-shirt sold will send one care package to a baby with LM, TM, BM in ICU recovering from airway surgery.

#LuTheLamb Nail Wrap Fundraiser with Jamberry
Details: 30% of sales will be donated to CWL

#GivingTuesday With Bravelets
When: 11/19
Details: One day only, Bravelets will be donating 20% of all sales (made on the provided fundraising link) to Coping With LM! Bravelet bracelets make the perfect gift! 

Donation Matching Program
When: ongoing
Where: Your employer may match your charitable donations.

When: ongoing
Details: You shop, Amazon donates. .05% of each edible purchase goes to Coping With LM.

#LuTheLambs Holiday Gift Basket 
When: now until 12/1
Where: Coping With LM HQ

Care Package Wishlist
When: ongoing
Where: Coping With LM HQ
*If you would like to purchase a blanket or hat to donate to this program please go here.

#spreadthelovery Project With Baby Jack Co.
When: ongoing
Details: Your donation of $18 per lovey will bring so much joy to a family, during a difficult time in their lives. Cost includes bulk shipping / delivery to Coping With LM, Inc.
Enter code KIND to offset the pre-set shipping fee at checkout.
No matter what shipping info you enter, it will be shipped to Coping With LM, Inc.  in 1 bulk shipment.

Big Sky Bibs: Colors For A Cause Campaign
When: ongoing
Details: 5% of all light blue items sold will go to Coping With LM.