Joss Fights Like a Boss

Mary Myerscough is organizing this fundraiser.

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Jocelyn Freya Myerscough is nothing short of a miraculous little girl.

When Jocelyn was born on August 26, 2017, her parents knew that she would be special. During her anatomy scan, Jocelyn's parents learned that she had significant heart defects. Once she was born, Jocelyn was diagnosed with Tricuspid Atresia, Double-Inlet Left Ventricle, and Aortic Atresia, as her major defects. As such, plans were made for her first open-heart surgery within days of being born. Jocelyn's first surgery (PA Bands) occurred when she was 4 days old. Her recovery was tough because she was so small, but she made it through. The purpose of her first surgery was to help her get bigger and stronger so she would survive the next "big" surgery - the Norwood procedure.

There many were ups and downs during those first couple of months... but the most notable was a huge shock to everyone. Jocelyn's newborn screen came back positive for Cystic Fibrosis (CF). Having complex congenital heart defects and CF was practically unheard of. This complicated things for Jocelyn's Norwood surgery so significantly that her team at Duke sent her to Children's Hospital of Philadelphia (CHOP) to have the surgery. Preparations to fly Jocelyn safely were lengthy, so it wasn't until she was 2 months old that she and her parents finally arrived at CHOP. They ended up spending a month in Philadelphia. Jocelyn's Norwood surgery went well and her first Thanksgiving came and went while she was there. Jocelyn celebrated her 3-month milestone the first week of December and then she was returned to Duke to finish her recovery.

Again, there were many ups and downs when she came back to Duke... Christmas came and went, then New Year's Eve, and Jocelyn was making slow, but steady progress. She finally moved to a step-down unit where she and her parents would begin the difficult process of getting her ready to come home for the first time. She had a g-tube placed so she could be fed without the physical exertion of eating by mouth, her parents were trained to draw up her medications, administer them, and how to use all of her medical equipment.

As fate would have it, Jocelyn was finally able to go home for the very first time right around Valentine's Day - the universal day of awareness for heart warriors everywhere! Her parents took this as a sign that she was going to be okay. The entire step-down unit had a parade for Jocelyn's discharge, complete with bubbles and confetti! Taking her home to the nursery that had been waiting for her for the past 5 months was very emotional for everyone.

As the weeks went by, Jocelyn's parents followed an intensive care routine to help Jocelyn continue to remain stable. Prescription formula carefully made to the fortified recipe and divided for the day, feeding pump primed with dosages double and triple-checked so it could be run continuously, dozens of medications meticulously drawn up and labeled for each day, alarms set for medication and feeding reminders at 6am, 8am, 9am, 12pm, 3pm, 6pm, 9pm, 12am, and 3am every single day. Weekly doctor appointments to Duke cardiology/pediatrician, feeding therapy, physical therapy, and developmental play therapy. All of it was to help Jocelyn grow bigger and stronger so she would be ready for her next big surgery - the Glenn procedure.

Even with their best efforts, Jocelyn struggled to gain weight. She would go on to spend 3 separate week-long stays at Duke for feeding issues. She was tube-fed continuously, but with her frequent vomiting (upwards of 20 times per day), she wasn't growing at an acceptable rate. The months between bringing her home the first time and her next surgery were brutal but exhilarating. Jocelyn and her parents were so happy to be together at home.

Shortly before her first birthday, Jocelyn's medical team determined that she was ready for her Glenn procedure. Preparing for this surgery felt a little easier for Jocelyn's parents because they had a better idea of what to expect this time around. The surgery went well, there were some small complications throughout Jocelyn's recovery, but she was able to overcome those and was finally discharged after 4 weeks.

It was obvious to Jocelyn's parents that this last surgery really helped her a lot. She rarely vomited, she was able to come off of oxygen support, she was able to wean off some medications, she had more strength and energy, and things felt... almost normal! The goal of the next couple of years was to help her grow bigger and stronger for her next "big" surgery - the Fontan procedure.

The months passed, then years! Follow-up appointments every 3 months, then 6 months, heart caths and MRIs to check on things, some interventions here and there, but nothing excessive at all. Life seemed to finally start for Jocelyn and her parents. Jocelyn shared many new experiences, a little delayed, but equally as exciting as other little girls, and her parents could not be prouder of how far she has come.

That brings us to now. Jocelyn is almost 4 years old and her next "big" surgery is in 2 weeks. She is everything you would expect an almost 4-year-old girl to be: hilarious, sweet, energetic, playful, sassy, brilliant, determined, inquisitive, hard-working, and loving. This time around, Jocelyn's parents talked to her about the upcoming surgery and the conversation went something like this:

"Hey Jocelyn, you know how you went to the doctor last week and got to see all of your nurse and doctor friends at Duke?"

"Yeah."

"Well, in a couple of weeks we'll be going back and this time you're going to have surgery."

"Oh. That sounds scary."

"It can be, but you've actually done this before. 3 times already! You know your zipper scar? The doctor is going to go in and make some changes inside so you can grow even bigger and stronger!"

"Like a superhero?"

"Exactly!"

"Super Jocelyn!"

"You see? There's nothing to be afraid of! You're Super Jocelyn!"

The Fontan procedure is the "final stage" surgery for Jocelyn. Does that mean this is the last surgery she'll ever need? Unfortunately, no. There could be other surgeries in the future, but for now, this is the next step in securing Jocelyn's future health-wise.

After talking with her medical team, Jocelyn's parents don't have a solid expectation for her recovery time. Her mother jokes, "Anything less than a month will be considered a win!" but truly no one knows what to expect. The purpose of this GoFundMe campaign is to help Jocelyn's parents cover the added expenses of having a child in the hospital long-term:

Food
Gas
Parking
Hotel/RMH stay
Misc.

Jocelyn and her parents are grateful for any feasible contribution; be it financially, through prayers, warm thoughts, and/or healing wishes. ❤️ All updates will be maintained on Facebook: Jocelyn's Heart Journey