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.
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| 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.
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| 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!
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| 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).
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| 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.
Written by:
Courtney Acevedo, Carter's Mom.
