Sophie H.
Ohio
Birth Date - October 26, 2011
Main Diagnosis - Hole in esophagus, heart murmur
THEME: THINGS YOU WOULD BE LEARNING IN PRESCHOOL - like Shapes, Colors,
Numbers, ABC's, Drawing and Coloring AND a MIX of CUTE SILLY ANIMALS (NOT
REALISTIC)...Like Suzy's Zoo.
Quilt Deadline: 3/1/15
Sophie's Story
After an emergency C-section, (because Sophie was footling breech) and
because her oxygen was so low she was RUSHED away to the NICU, where she
spent 10 long frustrating weeks. Although Sophie was weaned from oxygen
within the first week of being in the NICU, she had problems being bottle
fed, and problems feeding through her G-tube. It appeared that Sophie
could not suck, swallow or breathe like most infants. Sophie went on to
have her heart rate and oxygen levels drop significantly whenever they
presented her a bottle; little did we know the NICU had the reasoning all
wrong. After 3 weeks Sophie allowed the bottle in her mouth, and eventually
started taking sips, but was put on a super high calorie formula because she
constantly threw up and was becoming "failure to thrive". Eventually,
Sophie was sent home on special formula and two reflux medicines which
helped . We learned to feed Sophie every 1-2 hours, a very small amount and
that seemed to help. Having my baby girl join our family and be in the
comfort of her own home was a relief...but scary.
Sophie went on to be seen by the same doctors as her brother, Conlan, who
has severe special needs. Through everything that went on with Conlan at
this time, and I also had a newborn who had to eat small amounts constantly,
yet aspirating and throwing up all the time. The doctors followed her
closely; the GI doctor most intensely. After a series of 3 different
throat/stomach tests , we had a diagnosis of a hole in her esophagus! It
all made sense. A hole in the esophagus can be caused from one thing and
one thing only - a heart problem. Sophie was sent to a cardiologist the next
day, where they confirmed she had a heart murmur and it was the fluid from a
heart vessel that was making a hole in her esophagus. Sophie was sent home
with a heart rate monitor. We went home terrified but Sophie did not let
that stop her!
Sophie's condition, by a true miracle, has not progressed and has remained
the same - against all odds. Sophie went on to meet all milestones about 3-6
months late, walking at 16 months and eventually even being able to eat
table and drink table food! Sophie never met her speech milestone. This was
all from the effects of the hole in her esophagus. She now is in intense
speech therapy, going into preschool, and in special needs classes. She
continues to suffer from severe reflux/GERD and has to be on a machine every
time she eats and will always have to. Although Sophie is able bodied, she
is fragile. Her biggest frustration is not being able to speak. Through all
of this Sophie has proven to be a compassionate, silly, affectionate, and
most of all - my favorite stubborn little girl (like her Momma.) That is
why she has met most of her milestones the doctors said she most likely
would not!
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