For months after being born, we tried as hard as we could to
feed our child. It was a constant battle
night and day, screaming, crying, getting sick, and just not being comfortable
at all. He was born at 20% and slowly
declined to a 2%, due to unknown reasons at the time. Except for constantly getting sick and
throwing up. Doctors at the time said it
was GERD and should outgrow it by 6 months….
Six months came and went with a hospitalization, to switch
from nursing to formula. Because they
thought he was allergic to my breast milk.
So doing that should help him thrive.
Then the bottle refusal began, would only drink 15mls and
done. Absolute refusal… This is when our juggling act began. My husband would try feeding him, he would
refuse. My daughter, he refused… UGH. So by November of 2009, we had gone from 2%
to below zero and we were holding our lifeless child.
They tried doing a NG tube and he started bleeding
everywhere out his nose. The doctor at the time rest assured me she
knew how to help him and would save my son.
She picked him and said “We will save him”.
What mother would argue? I said “OK “and off they went. She came back in a couple of hours, with a
feeding team and explained what they did.
“You did what…?” I asked “You did
WHAT????” I asked again…. As shock set
in.
What is the tube? And
how am I supposed to take care of him?
Dazed and confused I called my husband.
I had never ever heard about a tube, never mind taking care of a child
with one.
"Oh, What a trip this is going to be! " Hands to forehead in disbelief
He woke up after a couple of feeds and looked great! Doctors were amazed on how well he was doing. We were only there for two days and he still
had some volume issues, but was doing better.
So they had a nurse come in and taught me how to hook-up his
peg tube and do all the fun stuff to keep him healthy and thriving. She did save my child’s life… That I will
thank her for, but we still had a long road as to his diagnosis and why he
needed a feeding tube in the first place.
After a year of struggling, we found out he was aspirating
on all of his fluids and had severe food allergies (Food Protein-Induced
Enterocolitis Syndrome (FPIES) and Eosinophilic
Esophagitis) this was why he was not able to nurse or accept a bottle or
even eat foods like you and I would.
We are still in the process of controlling is food
tolerances and he still aspirates on his foods, but he is a happy go lucky boy
who despite all of the ups and down…. It will not hold him down.
This is our “SUPER
TUBIE” and my SUPER HERO.
To follow Mack and his other tubie friends stories go to
Wyatt's Blog.
Thank you Jessie for all your hard work in getting these stories out.
DISCLAIMER: The pictures used in this and all posts are property of Mack and family.
Please no copying or using his pictures or stories without written permission first from his parents.
