The day of anticipation had
finally arrived 10-10-05. Jayden was here. A beautiful
little baby boy who had all of his fingers and toes, along
with the baldest head ever. Stephanie, his mommy was doing
great, and was so overjoyed she was brought to tears.
Unfortunately this would not be the first time Stephanie
would cry over her sweet baby boy. I am Debbie, Jayden's
grandma. I have been on this roller coaster ride along with
Stephanie and Jayden since day one. This is the story of
Jayden's life on the "reflux roller coaster". Jayden was
what seemed to be a healthy little baby, weighing 8lbs 1oz
and 20.5" in length. Stephanie wanted to do all the right
things for her new baby, which included breast feeding. The
results should have been the first clue something was not
right. The baby didn't want to latch on and feed properly,
it was a struggle from the first moments. The assumption was
she's a first time mom and he's only minutes old …they'll
get it once they are home and in a relaxed environment.
It's day two of Jayden's life and he is now home. Things
did not get better, they progressively got worse. Feedings
were a struggle, and Jayden was obviously in a lot of
discomfort with all of his crying, arching, and choking. On
day 3 Stephanie is a wreck as Jayden will not wake and eat.
He has been sleeping for nearly 24 hours and will not wake
to feed . I go along with Steph to take Jayden to the ER.
There they are able to get him to wake to a drowsy state by
examining him. He began to scream, and then he started to
choke on what seemed to be some Marcomium type of mucus…
huge amounts. After they frantically cleared his airway, and
he was no longer blue, he fell back into his deep sleep.
Seeing as the baby did wake and cry Steph is sent on her
way…along with instructions to feed him when he's awake.
Stephanie is beside herself, as she knows this a pat on the
back and have a nice day. We went straight to the lactation
nurse. She was able to get Jayden to breastfeed about 5 oz
from Stephanie (determined by weight before the feed and
after). The lactation nurse kept him awake to feed by
rubbing him profusely with a fair amount of pressure on his
tiny little arms. This was how Stephanie had to feed Jayden
for the next few days.
Looking back, it was probably the pain Jayden was in that
kept him sleeping, as that was much more comfortable that
eating. Before Jayden is even 1 week old Stephanie has to
take him back to the ER. Jayden has begun to scream and
Stephanie can not console him. There they take an ex-ray to
look for Pyloric Stenosis…thankfully it is not found. But
this tiny babies tummy is blown up like a balloon, filled
with gas. Constipation is the answer! Colic too…. These are
just a few of the labels we would begin to hear. Another pat
on the back and sent home.
Stephanie is a wonderful mother, she loves this little boy
with every bit of her life, and she like most of us believe
that the doctors know all, he must be right. Jayden is a
fussy baby and has colic. Stephanie and Jayden struggled
until Jayden was 2 months old with breast feedings. Never
was there a feed that was a relaxed bonding moment. Feeds
were always a battle to have been won.
Exhausted from a baby that struggled to feed every 2
hours, and all the inconsolable screaming in between,
Stephanie sadly gave up the fight to breast feed her son.
Two more months of this behavior went on with several
different types formulas, all of which produced a vomiting,
arching, screaming infant. Stephanie takes me along to the
Dr with Jayden.
One more time she is told he has colic and will out grow
it soon. She is always given the condescending first time
mom looks, it was as if the Dr wanted to roll his eyes at
her. Stephanie had come to believe that all this screaming
and puking is "just how babies are". I insisted this was not
normal behavior, something not right with Jayden. Yes babies
cry and yes they can get gassy and yes they spit up--but it
is not 24-7. It is 24-7 for Jayden.
Stephanie would swing Jayden in his car seat for hours,
as this was the only thing that would stop the heart
wrenching screaming. If she stopped, he would start. We
assumed he would get that over the hill feeling in his tummy
and that it was comforting to him. Steph developed blisters
which turned to callus from swinging her little baby so he
wouldn't hurt. I can't tell you how many times tears ran
down her cheeks as she stood swinging Jayden.
I was determined to find out why this was happening to
Jayden. I searched the internet and that is when I found
www.infantrefluxdisease.com. I was so relieved to read about
other babies who were suffering the same symptoms as Jayden
and that they were helping them to get thru this horrible
illness. This was it! This is what was hurting Jayden!
Infant Reflux! This poor little baby.
I printed off pages of information from the site and
Steph and I took it into the Dr. He agreed that it may be
GER, and went ahead with a prescription for Zantac and
changed Jaydens formula to Nutramigen. It was unbelievable
the difference in Jaydens behavior. He was not cured, but
the screaming and swinging had stopped and the vomiting was
reduced to nearly nothing.
Jayden did well on the Zantac, with increases as his
weight went up. Jayden also began to see a GI who has since
changed his meds to Previcid. He does pretty well now with
an occasional reflux breakthrough that is usually calmed
with some Mylanta. Jayden has had 2 trials at medicine
weaning, of which neither were successful. He has never had
any type of testing done for his reflux, his GI says we know
he has it, why put him threw the tests. Now, at 16 months
old he and has successfully transitioned from formula to
whole milk. He will soon be put threw another attempt to
wean him from his meds. If he fails this time, testing will
be inevitable, as the GI then thinks there may be more to
his diagnosis than GER. What lies ahead for Jayden is
unsure, but at least we have found some answers and can only
hope for a reflux free future for Jayden soon.
This is the "roller coaster ride" of an infant with
reflux. Jayden's is one of many stories to be told here, as
every one is similar, yet different, all as heartbreaking
for each child's family. If I had not found this site, who
knows how much more suffering Jayden would have endured.
This place has brought me so much peace and calm when I need
it most. The people here are genuine and caring. I truly
believe that without this site, Jayden, Stephanie and myself
would be lost. My gratitude to Roni for her courage to share
Shae-Lynne's story with the world is beyond words. My
gratitude to the members of this site are just as heartfelt.
Thanks to all of you!
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