Sunday, March 4, 2018

What You Should Know Before Your Child Has Surgery

Your baby's laryngomalacia is more than 'just some noisy breathing' and now he/she is headed into the OR. 

Am I making the right choice? 

Will my baby be in pain? 

How am I going to hand my baby over to the surgeon? 

These thoughts consume you as you try to prepare for what lays ahead. 

In an effort to continue providing support for our families, we have compiled a list of ten things you should know before your child has surgery.

1. Get A Second Opinion
About 5% of all babies with laryngomalacia will need a supraglottoplasty. Before signing any pre-op papers, get a second opinion from an ENT who specializes in laryngomalacia AND supraglottoplasy. Find a recommended ENT here.

2. Understand The Risks And Benefits Of The Surgery
Surgical intervention is warranted if a baby has severe laryngomalacia with recurrent apneic events, difficulty with feeding, failure to thrive and recurrent cyanosis and respiratory distress. Some risks are complications from anesthesia, aspiration, and infection.

"It was the scariest thing I have ever gone through but I would do it all again in a heartbeat if I had to!"- Jenny

3. Know What Recovery Could Be Like
Children are transferred to PICU once out of recovery. Recovery normally consists of oxygen via nasal cannula, pain medication (Tylenol to Morphine for severe pain) and IV fluids. Some children will need to be intubated for 24-48 hours due to swelling in the airway. Once discharged, pain management and infection control are the top priorities. 

"Prepare to see your infant with lots of monitors and tubes on and in them."- Tarah

Baby intubated post supraglottoplasty.

"She was on oxygen and intubated after her supraglottoplasty. It’s scary, but it will be worth it."- Kelly

4. If In The USA, Know Your Health Insurance Hospitalization Policy
Call your insurance company and ask about any deductibles, copays, and deductibles. Also, ask what is their policy of your child receives care from an out-of-network doctor while in the hospital.

5. Take A Tour Of The Hospital

Pay attention to where the cafeteria is and it's hours. Also, ask about getting a parking pass.

6. Know The Hospital's PICU Visitation Policy
Most PICU's only allow one parent to stay overnight and only two visitors in the room at a time. Vistors gifts and flowers are usually discharged.

Baby and #LuTheLamb in the hospital.

7. Know What To Bring To The Hospital
Read this list to know what to bring to the hospital.

"Another mom told me to bring Advil, I got a massive headache! Surgery was delayed until 3:00PM"- Kathleen

8. Know You Are Supported And Not Alone
Connect with over 2,500 parents here.
Let family and friends know how they can help here.

"Stay strong, you will get through it"- Maria

LM parents at a Malacia Meet-Up in New Jersey. January 20, 2018

"You’ve been so strong and fighting for your child for so long and now your baby is getting the help needed. "- Karen

9. Apply Your Child For A Coping With LM Care Package 
Each care package includes #LuTheLamb, a handmade blanket, hospital gown and other goodies to help comfort your little one. Apply here.

Handmade blankets are included in CWL's care packages

10. Know Surgery Does Not Cure LM
In otherwise healthy babies, most of the time a single supraglottoplasty will improve the airway obstruction caused by laryngomalacia and no further surgery will be needed. Supraglottoplasty has been shown to have over a 90% success rate in healthy children with laryngomalacia. There are times, however, when a second surgery may be needed if your baby is still having symptoms of severe laryngomalacia such as recurrent apneic events, difficulty with feeding or failure to thrive. Studies have shown that this is more common in neurologically delayed children. Up to 70% of children with neurological delay and laryngomalacia may require a revision supraglottoplasty.

Share and print here.

Tuesday, January 16, 2018

What To Pack When Your Baby Goes To The Hospital

As many special needs parents know, hospital stays can happen in the blink of an eye or they can be booked for months in advance. Regardless of the urgency of the stay, it's a good idea to have a detailed list of items to pack. From obvious items like a toothbrush and iPhone charger to some not so obvious, an electric hot water settle to make coffee/tea with. 

1. Favorite blanket/lovie
2. Extra pacifiers 
3. Bottles and bottle brush
4. Baby formula
5. Snap or two piece pajamas
6. Socks
7. Small toys and books
8. Small crafts for older children
9. DVDs
10. Bouncy seat
11. Baby carrier
12. White noise sound machine
13. Breast pump and supplies
14. List of current medications
15. Fingernail clippers
16. Baby oil / coconut oil to help remove bandage glue
17. Soap, towel and comb
18. Unscented baby lotion
19. #LuTheLamb
20. Baby food and nonperishable snacks, including allergy friendly options

1. iPhone, iPad and laptop chargers
2. Socks and slippers
3. Lip balm
4. Pillow and blanket
5. Cash for vending machine
6. Book
7. DVDs
8. Adult coloring book
9. Reusable coffee/tea cup
10. Advil / Tylenol
11. Women's feminine products
12. Extra clothing including a sweatshirt and pajamas
13. Small dish soap and sponge
14. Notebook and pen
15. Hand sanitizer and sanitizing wipes
16. Shampoo, conditioner, body wash, wash cloth and a bath towel
17. Hair brush, hair ties and make-up
18. Heating pad
19. Batteries
20. Essential oils and diffuser
21. Current project: crochet, knitting etc.
22. Ear plugs and a night mask
23. Vitamins and prescription medication
24. Nonperishable snacks including allergy friendly options

Tuesday, January 9, 2018

A Year In Review: 2017

A Year In Review:
What a wonderful year it has been at Coping With LM! 

Through our Breathe Easy Care Package Program, 151 babies with life threatening laryngomalacia received a care package for their upcoming procedures; making 2017 CWL's most impactful year yet! 

We gave three $100.00 Pint-Sized Powerhouse Grants to three very deserving warriors. 

Thanks to our friends at Chibebe Snuggle Pod USA, 12 babies with laryngomalacia received Snuggle Pods, free of charge and two babies in Australia received Snuggle Pods. 

We continued our partnership with Gelmix Thickener, launched our Amazon Wishlist and joined eBay For Charity. We also continued our fundraising efforts with Amazon Smile, Bravelets and Jamberry.

We graciously accepted donations from Heaven's Healing Hats, West Chester University Honors College, 02 Kid Lids, Fairlington United Methodist Women's Church, Benevity, Wells Fargo, Virgin Pulse Inc:, Network For Good, LuLaRoe, The Cordish Family Foundation, Fidelity Charitable Fund, Gracie's Gowns, Eliana's Collection Nail Polish, 
and The #DoingItForKeiley Project.

On Sunday, June 11th we created a Wave Of Light in memory of Alexander Joseph Andrade Jorgenson who passed away on May 31, 2017 from respiratory failure (Cardiac Arrest) due to complications of tracheomalacia.  #CWLLight4Alex 

We were humbled by the outpouring support from our donors. Many of you hosted Care Package Drives; your support and passion for our cause was not only heartwarming, but greatly appreciated. 

On July 10, 2017 we all stood together and painted our nails light blue for LM.

On August 6, 2017 CWL Founder & President Stephanie Hueston met with other local families for a New Jersey Malacia Meet-Up.

Also in August, we welcomed volunteer Tarah  Barreras to the CWL Team! 
Tarah's commitment and passion for CWL has been amazing; we are so happy to have her! 

CWL Founder & President Stephanie Hueston shared why CWL asks for handmade blankets, 10 reasons why you shouldn't use a store bought monitor on a baby with LMand how friends can help someone who is coping with laryngomalacia on the Coping With LM Blog.

We witnessed how in times of crisis
families rally together and pour their love into each other. 

CWL's mission of providing support and strength expanded in 2017 with the launch of the World Leader Program. The purpose of the World Leader Program is so newly diagnosed families can connect with "seasoned" parents in their area. 

#LuTheLamb traveled the world in 2017, 

helping his Pint-Sized Powerhouses' breathe easy! 
He also attended the Solar Eclipse! 

With your support, we raised $1,350.54 with our t-shirt fundraiser's 
and over $1,200.00 thanks to your Facebook Fundraisers! 

Finally, we humbly received the 2017 Top-Rated Nonprofit Award from GreatNonprofits and launched our first e-Book, 'When It's More Than Noisy Breathing' thanks to the help and support from Dr. Prasad John Thottam D.O., FAAP Director of Beaumont Children's Hospital Pediatric Aerodigestive Center and Dr. Suzanne Forman D.O. Otolaryngologist & Plastic Surgeon.

As 2017 comes to a close, I can rest peacefully knowing that with your support Coping With Laryngomalacia, Inc. and #LuTheLamb have fulfilled their missions. Families around the world are supported, strengthened and educated.  Thank you for giving, volunteering, supporting and loving CWL... it is because of YOU that we were able to accomplish what we have in 2017. 

May you always stay brave,
-Stephanie Hueston, CWL Founder & President 

Tuesday, October 24, 2017

To The Parent Whose Baby Has Just Been Diagnosed With Laryngomalacia

Dear Friend,

So your baby was just diagnosed with laryngomalacia. Can you pronounce it? Don’t worry, I couldn’t either. In fact, it took me three months to learn the correct pronunciation and spelling.

In time you will be able to spell it backwards. You will know more about this airway disorder than you ever thought possible. You will become someone we like to call a Malacia Mom (or Dad!). You will wear this title will honor. It will be a source of strength in the darkest of moments...a reminder that you CAN and WILL get through this.

Having a baby with an airway disorder may be one of the hardest journeys you will ever have to walk. And that’s okay. Do not be angry at this journey, it is here to teach you. Let it teach you. If you allow, the journey will  provide you with a whole new view on life. A more simple, wholehearted , grateful for every breath kind of view. 

Journeys have no not spend your journey full of anger...instead,  spend your time focusing on the walk. Soak in the sunlight wherever possible, remain graceful when your heart is full of worry and always be kind... your journey is hard, that we know but someones journey may be even harder.

Friends will leave and friends will come. Friends will leave because it is their time to leave, not because their intent is to hurt you. Take a deep breath and let them go as beautifully as you let them in. New friends will arrive with hearts wide open. They will know how important a hug and a hot, home cooked meal is. Hug them back, tightly. Be thankful for the future with them.

Your partner, he (she) is scared. In fact, he is very scared. That anger he is showing? That is him letting you know all those emotions you are feeling, he is feeling them too.  It kills him to see you hurt like this... and there are no words to describe the pain HE feels seeing his baby struggle like this. Let him know how you feel and what you need. He doesn’t know what to do. He never thought he would have a baby with an airway disorder. You both can survive this but  if he chooses to disconnect and walk away, let him. Holding onto a relationship when its time for it to end will only fill you of anger, bitterness and resentment. Your baby needs ALL of you right now. You will be okay. You will recover.

You will grieve. Grief comes in all shapes and sizes and it always seems to hit you when your standing in line at the food store. Allow yourself to grieve for the healthy baby you were not given. This is a normal process ... do not let anyone tell you different.

Listen to your instinct. You know your baby better than any monitor or medical test. Let your voice be heard and if a doctor speaks over you--find a new doctor. Get to the best hospital.
Bills can be paid later, your child needs to breathe now.

Walk this journey with grace. There are going to be some high, high mountains to climb and the rain will pour... choose to let the good strengthen you while letting the bad empower you. Every step you take on this journey will leave footprints your Pint-Sized Powerhouse will follow. Show your child there is always a reason to have a Hope...anger doesn’t make life changing decisions  and the good always follows the bad.
You are an Malacia Mom (or Dad) for a reason... stay brave and breathe. 

Written by: CWL Founder & President Stephanie Hueston

Monday, October 23, 2017

How To Host A Malacia Meet-Up With Coping With LM

Thanks to modern technology, we are able to connect with each other from miles away. While online support can be poignant, little compares to meeting another parent who is walking the same journey as you! 

Illinois Malacia Meet-Up

The purpose of Coping With Laryngomalacia, Inc.'s Malacia Meet-Up Program is so parents (and caregivers) can connect directly with other local families. 

This program is made possible thanks to our amazing World Leaders Volunteers and their passion for the cause! 

Want to host your own Malacia Meet-Up? Follow these easy steps! 

Step 1.  Apply (here) to become a World Leader Volunteer at Coping With Laryngomalacia, Inc. 

Step 2. Once you become a World Leader, choose a location, date and time for your Malacia Meet-Up.

Step 3. Submit a Malacia Meet-Up application (here) to Coping With Laryngomalacia, Inc. 

Step 4. Once approved, Coping With Laryngomalacia, Inc. will create a Facebook Event and invite Parent Support members. 

Step 5. Receive coaching and support: 
Coping With Laryngomalacia, Inc. will provide one to one coaching on how to host a successful Malacia Meet-Up

New Jersey Malacia Meet-Up

Sunday, October 22, 2017

How To Support A Family Who Is Coping With Laryngomalacia

You are scrolling through your news feed and see a post from an old friend, her baby was just diagnosed with a life threatening airway disorder. Her eight week old is now having emergency airway surgery.

Your son just called you at work (something he never does), the doctor just prescribed your grandchild an apnea monitor. The medical supply company will be delivering it tonight. 

You're babysitting your niece for the first time. She is choking with every feed, her stridor is so loud despite position changes- how does your sister cope with this?

Since there is no prenatal test for laryngomalacia (Polyhydramnios may be a marker though), every family who receives the diagnosis of mild to life threatening laryngomalacia world is turned upside down. 

Feeding difficulties to blue spells to major airway surgery, 
these parents are in desperate need of love and support

So what can you do to help? 

Stephanie says, "Offer to bring food or help clean the house. Be a listening ear."

Tiffany says, "Not come around when you have or have been exposed to illness (yes, this is a problem), wash your hands before touching baby, don’t smoke before being around baby."

Erica says, " Just ask. My support needs are different each day."

Erin says, "Please get CPR/First Aid Certified."

Lisa says, "Ask about doctor appointments and offer to watch the siblings."

Trisha says, "A friend paid to have our carpets and air ducts professionally cleaned and changed all our air filters when we were at the hospital. So we came home to the cleanest air possible. It was something Id never had thought to do. I felt it was very thoughtful."

Sponsor a care package here.

Wednesday, August 23, 2017

How To Host A Care Package Drive In 5 Easy Steps!

How To Host A Care Package Drive For Coping With LM In 5 Easy Steps! 

Step 1 
Choose your reason
Pint-Sized Powerhouse Birthday Party

Supraglottoplasty Anniversary / Survivors Party

In memory of your Pint-Sized Powerhouse

Just because 

Graphics to use:

Step 2 
Send invites, 
include Coping With LM's Wishlist

All donations are tax deductible.
Monetary donations can be made at

Helpful tip:
When collecting donations, be sure to include each donors name and mailing address with a list of items donated so Coping With LM can personally thank them! 

How To Help resource page, found here.

Graphics to use:

Jenna says, 
"I've  asked people to check in with their crafter friends. 
I've received gorgeous handmade things for drives from family members of my friends looking for a reason to knit/crochet/sew."

Amazon Wishlist, found here.

Full blog post, found here.

Step 3 
Collect donations, 
educate donors on airway disorders and 
how Coping With LM helps families cope.

Graphics to use:

Free Coping With LM e-Book, found here.

Read reviews of Coping With LM on Great Nonprofits! 

Step 4
Gather all donated items and post a picture on social media, be sure to tag Coping With LM!
Coping With LM can be found on Facebook, Instagram, Twitter and Pinterest.

Jenna says,
"When I get a donation I post pictures of it. It's a natural way to mention the Care Package Drive again and it's a nice acknowledgement for the people helping out."

Step 5
Send items to Coping With LM and feel good knowing YOU made a difference!

All donations can be mailed to:
Coping With LM
PO Box 313
Port Monmouth, NJ 07758

Thank you so much for your support!