Together We Can Move Moutains

When Seraphina was born (six years ago) our family was thrown into a world of unknown. Up until her birth, we had no reason to think she would not be okay. So when our newborn was born-blue, breathing with a stridor and having significant retractions, we were shocked, lost and in need of support and education. It took five long weeks before we were able to finally get a diagnosis- laryngomalacia. This common, begin, condition was slowly killing our daughter and emergency airway surgery was needed. We spent the next two years living in and out of the hospital (New Jersey to Pennsylvania). Long nights in PICU, showering at the Ronald McDonald House and piles of medical bills became our new norm.

Throughout our journey with LM, I made a promise to myself- I would dedicate my life to helping others who have walked the same journey. I would do whatever I could to make sure no mother has to sit in ICU, watching her baby breathe and think, "I wish I had someone to talk to."

Coping With Laryngomalacia, Inc. is a 501 (c) 3 nonprofit organization, all donations- monetary or goods- are tax deducible. Everyday, CWL provides support, strength and education for families who are coping with airway defects such as LM because of it's generous donors. As an award winning, 100% volunteer organization, donors can feel confident in supporting such an important cause. 

 

Seraphina at age four months old recovering from airway surgery then at age six, thriving!

 

Want to help?

First, share this post- your share may be the reason why a concerned mother makes an appointment with an Ear, Nose, Throat doctor to see why her baby is breathing so oddly.

Second, follow Coping With Laryngomalacia, Inc. on Facebook, Instagram and Pinterest so you can stay up to date with how your donation is making a difference.

Third, read this (http://tinyurl.com/gvmsrpw) blog post on different ways you can help- from making a secure, tax deductible donation online (http://tinyurl.com/phnrrpa) to starting a blanket drive within your community, this post will inspire you and your friends to make a difference.

Lastly, know the symptoms. The most common symptom of laryngomalacia is stridor- noisy breathing. Difficulty feeding, poor weight gain, reflux, apnea and blue spells are also signs the baby needs medical attention. Most symptoms are present at birth and worsen with the following weeks.

Thank you for taking the time to read this and supporting a cause so close to my heart. Together, we can move mountains.

~Stephanie Hueston, CWL Founder & President.

CopingWithLM.org

CopingWithLM@yahoo.com

Penny's Journey With Laryngomalacia

Written by: Naomi, Penny's Mom.
 

When we started on this journey little over a year ago I didn't know just how hard it was going to be. I became numb from it all because it was the only way to cope with everything that was happening.

I fought to be seen by the hospital because I knew something wasn't right and I knew it wasn't mild laryngomalacia and that Gaviscon (reflux medication) wouldn't fix this problem like the doctor said it would.

 

Penny with her Breathe Easy Care Package blanket and hospital gown.

 

I'd turn away and my precious little baby would be gray and lifeless. Fast asleep as if she'd passed away. I'd hold her in my arms and rub her to wake her up, she'd gasp and be back with us again. It was the scariest time of my entire life. Hoping that each time she would

come around yet fearing that she wouldn't with each time it happened. 

The first time the doctors attached her to the monitors, I sat staring at the numbers. Terrified each time they dropped and the alarms would sound. I've never felt so alone as I did watching those monitors.

Feeding became torturous for both her and I. Each bottle I made up, knowing she'd gag and struggle, forcing her with each mouthful so she would stay strong. Pushing her till she'd had enough but still pushing her more because a mother is meant to be able to feed her baby. To nourish them. It's a normal, natural thing to be able to feed your baby yet I couldn't, she couldn't anymore.

 

Penny, in the hospital.

 

After so many hospital visits we were told she needed surgery. I was terrified yet relieved they where going to help her get better. 

She was only 8 weeks old when this was decided. When everyone else was enjoying there new babies I was searching desperately for reassurance that she would be okay.

Researching everything because I didn't understand all the big words they where using at the time. 

She started to give up and slept all day. Only waking for small feeds then sleeping again. In the end I was feeding her tiny amounts with a syringe and that's when I couldn't do it any longer and she couldn't cope any longer being forced to feed. She was tired out with it all.

The hospital decided to tube feed her. This was all foreign to me. 

It was so hard seeing her pinned down and tubed. Each time she screamed and it was a totally different scream than you ever hear your baby doing. It was heart wrenching. 

Surgery day came and it was like no other. Handing your baby over to anesthesiologist. Terrified that she would be OK. I'm not religious but my god did I pray that day. Pray that my beautiful baby girl would stay strong and fight and by god she did me proud that day. She's a fighter, my Penny.

When I was taken to her in recovery I couldn't even hear words that anyone was saying to me. They where speaking to me but i couldn't comprehend the information

they where telling me. All I could focus on was her and her screams of confusion and pain. Her chest was making an awful sound and she was struggling so needed oxygen. I held her in my arms tightly and never wanted to let go again. 

After a rough night she recovered really well but still struggled with feeding for a few months afterwards.  I didn't care how she was fed anymore as long as she was fed. 

She did all of her 'firsts' in hospital. First smile, first time she sat up, rolled, her first tooth. Even her first taste of food.  Instead of the excitement I sat and longed to be home as a family again. We missed Christmas and birthdays, I missed my eldest daughter incredibly. I was torn in half.

It was a hard journey getting her off the tube feeds. Starving her to make her hungry so she would eat. She was scared of people near her when she was eating because of all the tube changes. She wanted to be left alone and so would you wouldn't you after all she'd been through. But she did it and she became tube free. She absolutely loves food now. 

You would never be able to tell she was tube fed now. She made me excited just watching her. I longed to be able to spoon feed her but she just wanted to be left to it. 

After a few weeks she eventually let me and I felt like a real mammy again. I could feed my own baby again!

Penny, enjoying lunch!

We've still had reflux issues but she is getting there, she is strong and she is a brave baby. She is the toughest baby I know and on days where I don't feel strong I look at her and she makes everything perfect. 

She still struggles at night and can't settle and has a terrible tracheal tug but one day she will be completely over all this. I know this because she can do anything if she got through the past year and I certainly couldn't have got through this last year without her.