Wednesday, August 2, 2017

Why Coping With LM Asks For Handmade Blankets

It was June of 2010, somewhere in the middle of the night and early morning. I sat at my computer, starring into the computer screen. A handful of tabs were opened, laryngomalacia-supraglottoplasty-surgery for an infant-what to pack for a hospital stay. 

Earlier that day, I signed the pre-op papers for my four month old daughter to have airway surgery. She had life threatening laryngomalacia, severe apnea, GERD, bradycardia, left ventricular hypertrophy and feeding difficulties that left her gasping for every breath. 

Medical intervention was needed and it was needed as soon as possible





Stridor filled our house. Loud and forceful then somehow comforting; at least I knew she was breathing.The lump in the throat and tightness in my chest was a constant reminder of what lay ahead, the thought of laying my baby into the arms of a surgeon made me physically ill. 




I knew I couldn't change what was about to happen but I could do my best to make her comfortable. I spent hours searching online for a blanket, I wanted it to be soft and warm. 

I wanted her to feel wrapped in love and strength

Would a Carter's blanket hold the same significance? If I purchased a blanket from Etsy, would the seller know my baby was about to have life saving airway surgery? Could he/she even pronounce laryngomalacia?

Handmade blankets that were donated to Coping With LM in Spring of 2017.

Unable to make a decision in mist of the storm, I brought a generic baby blanket to the hospital. As I sat in PICU and watched her breathe, I couldn't stop wishing she had something more.

As the months went on, my daughter began thriving. 
Surgery was a success and my baby was finally breathing easy! 

It was time to help others

Coping With LM's Care Package Program was created and shortly after, donated handmade blankets were being given to babies recovering from airway surgery, all around the world! 

Last year alone, Coping With LM gave 106 blankets from California to Canada to Ireland and beyond! 

Handmade blankets that were donated to Coping With LM in  Summer of 2017


No longer are babies with airway disorders laying in cold, sterile hospital beds. 

They are now wrapped in love and strength!  

 Gillian, mom of a Pint-Sized Powerhouse says, 
"Receiving a care package from Coping With LM made me feel like I wasn't alone, supported, cared for, wrapped in the kindness of that beautiful handmade hat and blanket."

The love and time every donor puts into each blanket does not go unnoticed. From a mother who wished for her baby to be wrapped in such beauty, I thank you. 

Blankets to books, everyone can support the cause!  
Learn how you can make a difference here.

Want to donate items from home? 
Visit our Amazon Wishlist here.

In health & happiness, 
Stephanie Hueston
CWL Founder and President
copingwithlm@yahoo.com








Wednesday, May 10, 2017

Overcoming Laryngomalacia And GERD: Jackson's Story

Photos submitted and written by Kimberly Reider, Jackson's Mom. 

It has been a few months since really being active on here. Most of you probably remember me and my son from his nonstop hospitalizations from chronic reoccurring respiratory infections/viruses. Photos and videos of wheezing, gagging, coughing, blue spells and stridor; as I was trying to figure out what this airway defect actually has on us and how to beat it. 

My sons story began from birth. He was born pretty quite. 'An under developed voicebox' we were told in the hospital. He was snorting all the time & sounded EXTREMELY congested. He was admitted to NICU for observe.. Where nobody checked his airway. They did see his reflux but at the moment it wasnt too bad because I was nursing. After discharge we had his follow up apt the next two days. He was one week old. From that time, at one week to 7 weeks old we went to different doctors multiple times a week and to emergency rooms as we genuinely believed he was fighting for air. He is the ONLY NEWBORN IVE EVER SEEN BREATHE THROUGH HIS MOUTH. his congestion was horrible. We were told the usual
°babies have small airways°your sons may be even smaller but not harmful° he must have inhaled fluid during birth° babies breathe loud


All in all NO DOCTOR had any concern. Though while laying completely flat his oxygen would drastically drop and he would start gasping for air. So his father and I took it upon ourselves with the support of his insurance to self refer to an ENT



Jackson, suffering from laryngomalacia and GERD.


Dr. Seth Linker, Tunkhannok Pennsylvania. ENT, he was a God send. Our first breath of fresh air. 


Someone who didn't even listen to me but INFORMED me. He suspected laryngomalacia right away. Did his in office scope and sure enough he had his proof. He instantly was prescribed medication for reflux as you all know reflux comes hand in hand. He chalked up the congestion mostly to reflux. His congestion was so loud it drown out the sound of stridor. (His squeak) he prescribed him an home apnea monitor as we both suspected sleep and feeding apnea. 

The first night we realize how bad his apnea was. And within a few days on zantac the congestion went away.

Jackson seemed normal from that point on, except for one BIG problem.

RESPIRATORY DISTRESS.


At 130 days old he had spent 78 of them sick. He was constantly in isolation in the Pediatric ICU. Constantly on antibiotics until we hit a point where we began to refuse, they didn't work anyway. At three months old, in PICU I pumped the last of my milk. Due to stress and non stop living in the hospital, apart from my other child took its toll and my supply vanished. 



That's when trouble really hit. He went from being sick all the time to screaming in pain, arching showing the worst of the worst reflux symptoms. We tried EVERYTHING. Every single H2 blocker and PPI. We did combinations and piggy backed them nothing worked. 


Of course, reflux flares cause laryngomalacia to be much worse. 


Now we were in PICU for ALTES (apparent life threatening event syndrome). If it weren't for his apnea monitor I would have lost my son in one particular night after an ALTES, I couldn't wake him. It was a fight to get him barley breathing until making it the local hospital where he was then transported back to the Children's Hospital a few hours away.

After doing a 24 hour ph probe study we learned just how severe his reflux is. Right away his doctors all wanted to do the Fundoplication surgery  we of course, were not jumping towards that idea. 


We decided to try to only medication we hadn't tried yet. Nexium.
Again it wasn't working and I was getting desperate to help him.

I was referred to an amazing reflux group here, where I learned so much about severe infant reflux. I learned more about reflux than my sons doctor's know. We significantly upped his PPI dose to PROPER dosing to severe reflux AND got into an amazing doctor (GI) five hours away from us. 



Jackson, breathing easy.


We learned basically of his problems were fed by the reflux & once we controlled it, life for us changed.


His airway is healing from acidic damage, he recently outgrew laryngomalacia which is what his ENT said would happen once we controlled his acid.

He hasn't had any ALTES AND NO APNEA. He has had his first cold that didn't require hospital stays, we were able to handle it at home. 

So my time here is done.


I plan to stay to help others, it does get better! 

Thank each and every one of you who have helped me in this. We are the strongest moms I know!💙



Jackson's Survivor Award 

Wednesday, April 26, 2017

How One Mother Turned Her Daughters Health Crisis Into An Opportunity To Help Others

Coping WIth Laryngomalacia, Inc. will be referred to as CWL in this blog post.

In 2010, Stephanie Hueston’s second daughter, Seraphina was born. Shortly after birth it was very obvious something was very wrong. The newborn was blue and struggling to breathe. Stephanie was assured her daughter was suffering from “normal newborn congestion” and was told it would resolve within a few days.  As the days passed Seraphina’s health started deteriorating. She was gasping for every breath and stopped breathing multiple times  a day.  Stephanie rushed Seraphina to the pediatrician's office and demanded she see a specialist. Something was wrong with her baby, she just didn’t know what.




Five weeks after Seraphina’s birth, she was diagnosed with an airway defect called laryngomalacia. Laryngomalacia is a congenital defect of the larynx. The tissues above the larynx are floppy and omega shaped. When the infant breathes in, they collapse-creating an airway obstruction. For almost 95% of all cases LM is a common, benign condition. No further medical treatment is required after initial diagnosis.  And then there is a very small percentage of babies that are diagnosed with life threatening LM. Stephanie’s daughter fell into this category. Seraphina's doctor had later told Stephanie, on a scale of 1-10 Seraphina was 12; the worse case of LM he has ever seen.


On June 11, 2010 Seraphina had airway surgery known as a supraglottoplasty. During a supraglottoplasty, the surgeon cuts each side of the epiglottis tissue, creating more room in the airway for when the floppy larynx collapses. The surgery does not cure LM but helps improve the symptoms.  After surgery, Seraphina was transferred to ICU where she was put on oxygen, steroids to keep her lungs open and morphine to ease the pain.


As the summer went on, Laryngomalacia Warrior Seraphina started improving while Stephanie was falling apart. Exhausted, scared and overwhelmed  Stephanie remembered advice her mother had given her--in every situation, you have a choice. Laryngomalacia wasn’t any different.  Stephanie could let laryngomalacia destroy her or let it empower her, the choice was hers.

Stephanie, Founder & President of Coping With Laryngomalacia, Inc.



Coping With Laryngomalacia, Inc. was founded in July of 2010 and is the first 501 (c ) 3 nonprofit organization in the USA and in the world that provides support, strength and education for families coping with laryngomalacia, tracheomalacia and bronchomalacia--all defects of the airway.  The CWL Team is made up 100% of volunteers who donate their time, support and passion to the cause daily--while many of them are coping with LM themselves.


In addition to 24/7 online support and education, CWL offers feeding difficulty support and resources (Gelmix Thickener), a care package program ingeniously titled the Breathe Easy Care Package Program as well their Pint-Sized Powerhouse Grant Program which helps families pay outstanding medical bills. The organization also offers a worldwide directory of Pediatric Ear, Nose and Throat doctors who specialize in LM. After finding a knowledgeable ENT, parents are then able to print out suggested questions they should ask at the first visit.

What To Ask Your ENT


At the start of the New Year, CWL extended their partnership with Chibebe Snuggle Pod AUS and USA. Because of Chibebe's astounding support, babies (six months old and younger) with laryngomalacia can receive a Snuggle Pod, free of charge through CWL.


Last year alone, CWL gave 107 care packages to babies with life threatening laryngomalacia and $500.00 in Pint-Sized Powerhouse Grants! With a community reaching from New Jersey to California, from Canada to England and South Africa to Australia; parents are supported, educated and empowered thanks to the ongoing support from CWL's incredible donors and volunteers.

Seraphina with #LuTheLamb assembling care packages 




CWL's future is bright!
Planning for World Airway Defects Day is now underway, supporters are encouraged to paint their nails light blue for LM on July 10th to show their support!
The Lollipops For LM Project will be back this Halloween while CWL Founder & President Stephanie Hueston works closely with families who are walking the same journey she once walked.

World Airway Defects Day



For more information on CWL on how they help families cope please visit CopingWithLM.org
or find them on Facebook, Twitter, Pinterest and Instagram.

Want to help? Go here.

Was your baby just diagnosed with laryngomalacia? Start here.

Need to talk to someone directly?
Email Stephanie anytime at copingwithlm@yahoo.com

Wednesday, April 12, 2017

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



Laryngomalacia: 

The World of Unknown, to a World of Much Known

Written by: Courtney Buhr at CountryMomsPlace.com 

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.




1. NO RESCUE OXYGEN
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.

2. LIMITS ARE NOT CORRECT
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. 

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

4. NO DATA = NO TREATMENT PLAN
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.

5. LACK OF EDUCATION
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.

6. NOT AS SENSITIVE
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."

7. POOR FIT
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."




8. FALSE SENSE OF SECURITY
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.

9. THEY DON'T MONITOR EVERYTHING
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.


10. NOT MADE TO DETECT APNEA
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, 
-Stephanie 






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. 💙

DO NOT HESITATE, GIVE TODAY

Molly with #LuTheLamb

No act of kindness will go unnoticed!