Saturday, August 13, 2016

Pint-Sized Powerhouse Grant Recipient: Carter

When Carter was born, we immediately were concerned about his breathing. In the hospital, I asked about his "stuffy" sound. The staff kept telling us it was common after birth to sound stuffy because of all of the fluids and that "he was brand new". After a week or so, we went back to the doctor for our first check up. Again, I asked about his "stuffy" sound, and was told to use the bulb and saline- he was probably just contested. Carter slowly got louder and louder. I also noticed he began to seemingly "struggle" when breathing. The sound never went away- just got worst, he would gasp for air at times, and always sounded like he was snoring no matter what position he was in. Again, we went for his 1 month check up and that is when our pediatrician told us he had Laryngomalacia. At that time, the doctor did not refer us to an ENT and said it would clear up on its own as he grew and the cartilage hardened. I listened to the doctor, but something inside me didn't feel satisfied with that answer. This is when I started doing research and came across Coping With Laryngomalacia, Inc.

Mom & Carter

Once I started reading on the Coping with LM website, looked over the resources, and read the blog, I heard Carters symptoms over and over. I knew that my worry for my son was legitimate. I showed some of the resources to my husband who agreed something was "off" about the first opinion and tried to tell me to go get a second opinion. I didn't want to be overly worried, because after all, the doctor told me it was nothing to worry about. Later that same week, Carter stopped breathing while I was feeding him. My husband was sitting beside me and panicked as he heard him gasp for air when he finally started breathing! It was then that my husband insisted on a second opinion, and I will FOREVER be grateful for that! That second opinion could have saved our sweet boys life! 

We went to the second pediatrician, and she immediately called an ENT after hearing Carter and seeing how much he struggled. The pediatrician set up an appointment for us to see the ENT that same day, as well as put Carter on a breathing monitor after he had a few blue spells and stopped breathing momentarily. Once we arrived at the ENT, he did a scope and proceeded to tell us that Carters case was "one of the worst he has seen". That is not something you want to hear about your 1 month old baby's airway! The ENT wanted us to monitor his breathing and blue spells for 2 weeks, but expressed to us that surgery was most likely the outcome. 
Dad & Carter

During those next 2 weeks, Carters monitor went off numerous times- sometimes multiple times a day! Once we went back to the ENT he did another scope, showing Carters cartilage not only "floppy" but wrapped around itself. He was basically trying to breathe through a straw! He was scheduled for surgery that next week at exactly 2 months old! 

Our surgery was stressful, but SO successful! Carter is thriving and well a 4 months old! Our last ENT appointment was successful and our ENT was pleased with the progress he has made! This is the best news we could have heard after such a scary start to our LM journey!!! His stridor has gone down, and he retracts a lot less than before the surgery. Our ENT is watching the cartilage closely to make sure it stiffens on its own! It is our hope that Carter will be surgery free and be able to heal on his own!
Big Sister Sofia with Little Brother Carter

In honor of World Airway Defects Day, our 4 year old decided to show her love for her little brother by starting her first fundraiser. Big sister Sofia made light blue "confetti" bracelets for family and friends to wear to celebrate her little brother on World Airway Defect Day! I have to say, I truly underestimated my amazing little princess....she mailed out 78 bracelets and closed out her GoFundMe account at $660!!!! Not a bad first fundraiser for a 4 year old!! The profits were all given to Coping With LM, INC. Sofia's wanted to raise money to help babies like her brother with LM. She has the sweetest heart and I am so proud of all of the time, love, and care she put into her fundraiser. Sofia stuffed bracelets, personally signed every thank you card, and packaged each one herself (with Mommy's help of course).
Confetti Bracelets

The Acevedo family could not be more thankful for all that Coping with LM, INC has done for our family. We found out recently that Carter was chosen as a Pint Size Powerhouse Grant recipient. As the cost of surgery, ENT appointments, scopes, etc can get extremely costly- this took some of the burden off of our shoulders! We are so grateful for the help during this time! I constantly use the Coping with LM, INC Facebook page to ask questions and connect with other families going through this journey. This non-profit has changed our journey with LM and helped take some of the stress off with all of the fabulous resources available! I don't know what I would have done without this amazing support! The Acevedo's will forever love and support Coping with LM, INC and all that it stands for! Thank you for ALL that you do!

Written by:
Courtney Acevedo, Carter's Mom.