meet timmy!!

24 January 2016

Timmy Wade and family are being honored at our 'Pinstripes and Diamonds' event at the Williamsport Country Club in Williamsport PA on April 9th. Please visit our website and the events page for more information on how you can support or attend this event!

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.

what a year!

06 January 2016

2015- the year of the unexpected.

The year started off with a Gala hosted by the Junior Women's Club of Westfield that yielded $18K- 10K of which we turned around and put into equipment and art supplies for the child life department of CHOP (Childrens Hospital of Philadelphia) for the cardiac kids and families.

Soon after, we received an unexpected email from Colleen Hoover, a famous author who had started an organization called The Bookworm Box that sells autographed copies of books and chooses charities each month to be the beneficiary of their sales. We were floored when we found out they raised $15K for Hayden's Heart in just about 5 minutes!!

The year continued with our usual events- the 5K birthday bash for Hayden in March, a 5K walk in PA, two golf tournaments- NJ and PA, and a car wash.  All successful and left us feeling so much gratitude to all of our supporters and organizers. With your help, we were able to donate well over $40K to heart families. We sent out over 150 care packages to heart families spending time in the hospital, and over 60 care packages to grieving heart families.

Our blood drive was again amazing and I am so thankful that each year we are able to increase the number of pints we donate. 2015 yielded 48 pints!

We also held our first 'Healing of the Heart' retreat for angel mamas and had 24 grieving mothers come together from all over the country in hopes to connect, heal and just be themselves with other moms who knew exactly how their heart was feeling.  So many of you donated items, scholarships, and funds to help make this event for these mothers memorable-and it truly was- thank you!!

As of October 1, 2015 Hayden's Heart has raised over $250K- in just three years!! 
I can speak for my entire family and our board members- THANK YOU will never be enough. Your endless support is incredibly humbling and I cannot wait to see what 2016 has in store for Hayden's Heart!!!

Here is just a sneak peek~

On March 19th we will host our 4th Annual 5K- where we will celebrate Hayden's 4th birthday and honor four-year-old Matthew Mursch and family. For information on how to register for this event, please visit our website!

We are also in the beginning stages of planning our two summer golf tournaments- in New Jersey and Pennsylvania. Stay tuned for details and summer dates!

We are so excited to announce two new events this year!
Our Pinstripes and Diamonds event is a formal silent and live auction in Williamsport Pennsylvania on April 9th at the Williamsport Country Club.  Please visit our website - more information coming soon on how you can purchase your tickets!

Our 'Heart of Gold' Gala is a formal silent and live auction in which we will honor pediatric cardiologist Dr Chitra Ravishankar, as well as the entire heart community at large. This event is shaping up to be our signature formal event and we are so thrilled to announce that the first inaugural will take place on September 30, 2016 at the Fiesta in Woodridge, NJ.  More information on this exciting event will be posted on our website in the coming months.

And stay tuned... Hayden's Heart has something very special releasing LATER THIS MONTH!!!!

As always, thank you all for your continuous support- with the start of another year,  I am again reminded how blessed we are to have all of you with us on this journey of raising awareness for CHD and Hayden's Heart, and helping us assist heart families all over the world.

3.12.12 - 8.16.12

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