Meet Timmy~
Timothy Brannaka Wade was born
on the afternoon of March 11, 2013 at Williamsport Hospital in Williamsport,
Pennsylvania. He weighed in at 9 lbs.
and 8 oz. His first two days of life
outside the womb were ordinary and uneventful. His life took an unexpected turn in the early
morning hours of March 13, 2013, when, just prior to discharge, nurses
providing routine care in the nursery discovered that Timothy was turning
blue. Doctors were frantically awoken
from their slumbers and many wires and tubes were hooked up to Timothy’s
body. An exact diagnosis would come
later, but all indicators suggested a serious congenital heart defect. A
decision was quickly made to life flight Timothy to Hershey Medical Center. At the time, panic had not yet set in, since
we did not yet know the details of Timothy’s condition and were assured that it
was “treatable.” This assurance was of
no small comfort to us in the midst of the unfolding crisis.
For the next several days,
Timothy was treated in the Neonatal Intensive Care Unit. He presented as a giant in the middle of a
crowded floor of tiny, premature infants, many of them living inside
climate-controlled, oxygen-rich chambers.
Timothy’s formal diagnosis was Hypoplastic Left Heart Syndrome. The condition, which is surely familiar to
many reading this biography, is characterized by an under-developed left
ventricle of the heart which is incapable of performing its essential function
of pumping oxygen-rich blood out to the body.
Children born with this condition have two choices: surgery or
death. In order to survive, Timothy
would have to undergo a series of three open heart surgeries to reconstruct his
heart and rearrange the vessels used to circulate blood to his body. This sequence of three procedures has
collectively become known as the Norwood Procedure, named after a daring and
innovative pioneer in the field of infant heart surgery.
On March 18, 2013, when
Timothy was a week old, the first phase was completed during a nine-hour open
heart procedure performed by Dr. Brian Clark at Hershey Medical Center. After five weeks of recovery time, Timothy
was discharged home with a pump and formula.
Attempts to teach him to nurse or drink milk through a bottle were
ultimately unsuccessful. In order to
receive any nourishment, he relied on a tube that entered through his nose and
went down his throat into his stomach and digestive tract. In the coming months, the tube would be
accidentally pulled regularly, requiring frequent visits to the ER and
emergency appointments with a pediatric gastroenterologist for reinsertion. Every time the tube was pulled, just prior to
setting off for the hospital, we would get out the camera and snap a few
photographs of Timothy, since it presented a rare opportunity to take his
picture without a yellow tube hanging out his nose and tape on his face. Of particular concern during Timothy’s first
year of life was his severe reflux disorder, which made it difficult for him to
hold down any appreciable volume of food.
Imagine throwing up the majority of what you have eaten after every
meal—such was Timothy’s daily existence.
On July 22, 2013, Timothy was
admitted to Hershey Medical Center for the second phase of his heart
reconstruction. The six-hour operation
was successful, and the recovery time was much shorter. In September 2013, following a consultation
with a pediatric surgeon, a decision was made to surgically modify Timothy’s
stomach to eliminate his reflux problems.
The procedure, commonly known as a Nissen fundoplication, was
successfully performed on September 11, 2013.
During the same operation, doctors also implanted a gastrostomy tube
(G-tube) in Timothy’s abdomen so that he could receive supplemental nutrition
via formula delivered by a pump. By that
time, Timothy had developed a fairly impenetrable eating disorder and would not
eat or drink anything by mouth. Thus,
for the next several months, 100% of his daily nutrition was delivered by pump
through his G-tube. In addition to her
regular duties as a mother, Timothy’s mommy also doubled as a nurse, setting up
Timothy’s pump every night to deliver feeds through the night, as well as
administering a plethora of medications throughout the day to keep Timothy’s
heart beating strong.
In the Spring of 2014, Timothy
did begin eating small amounts of food and drinking small volumes of water by
mouth. This change came about through
the intervention of a pediatric occupational therapist. Timothy continued to make slow progress for
the next year or so until he was introduced to a behavioral psychologist at
Hershey Medical Center in July 2015.
Since then, he has been drinking small portions of milk out of a cup and
eating larger portions of food. Progress
is slow, but Timothy is taking important steps toward independence from pump
feeding and the eventual removal of his G-tube.
In August 2014, Timothy took another important step forward when he
walked for the first time at seventeen (17) months.
Timothy is a happy little boy
with a loud singing voice that travels through walls and simply cannot be
muffled. He enjoys learning different
songs, especially praise songs from church, and can often be heard throughout
the day singing them over and over again.
He quickly learns the words to children’s books that we read to him and
can often be heard reciting lines from stories as he walks around the
house. He enjoys playing computer games
on his mother’s touch screen tablet and also loves to watch movies and sing
along with them. He enjoys playing with
Thomas the Tank Engine toys of any kind, and also likes any type of heavy
equipment toys, like bulldozers and backhoes.
He enjoys boat rides on the pond at the family cabin, swimming in the
pool, and going on wagon rides.
His favorite foods include
pepperoni, tortilla chips, Cheez-its, crackers, cheese, pasta, chicken,
scrambled eggs, and fruit smoothies. His
favorite people include his grandparents on both sides, his mommy, and his
pastor. He is a mischievous red head who
often fluctuates between emotional extremes.
He exuberantly exclaims “Daddy” at the top of his lungs with a big grin
when his daddy walks through the door at the end of the workday, and he is just
as quick to voice his loud disapproval when his demands are not met
immediately. He is a delight, and we
cannot imagine life without him.
Timothy has two sisters, Clara
(age 6) and Laura (age 4). He also has a
baby brother, Benjamin, who just turned ten (10) months. He is very affectionate and is always
showering his siblings with hugs and kisses during all hours of the day. He is very energetic, despite his
condition. We often hear him singing in
his bed late at night after his older sisters have already fallen asleep, and
he usually wakes up before them as well.
He has a motor and never wants the day to end. As I finish this brief biography, it is after
11:30 pm, and I can still hear Timothy singing loudly in his bed on the second
floor.
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