JADE’S STORY

JADE’S STORY:

Jade's journey started way before she was born. When I was 20 weeks pregnant, my husband Joe and I went in for what we thought would be a routine ultrasound. During the ultrasound, doctors discovered she was measuring very small at the third percentile. They were unable to get clear pictures of her heart, so they referred us to Mercy’s Prenatal Center for more tests. It was there in November 2015 that we discovered Jade had a congenital heart defect. 

Doctors later determined that along with the congenital heart defect, the blood flow from the placenta was not good and attributed that to her lack of growth. This led to weekly monitoring appointments. I was admitted once in December 2015—the doctors and nurses let me know that if I delivered, Jade would be too small for her heart surgery and would not be able to survive. So I went home and waited. By February, she was measuring big enough and had crossed the threshold of 33 weeks so I was readmitted to the hospital so her heart could be monitored closely. 

February 25th… one day shy of being 35 weeks along, was when Jade’s story truly began. Doctors made the call that in two hours they would perform a c-section and our sweet baby girl would enter this world. When Jade came out she was crying the sweetest cry I have ever heard. Joe cut the cord and we gave her a bunch of kisses before she was whisked away to the NICU. Born at only 2.9 pounds and 15.25 inches, she’s been resilient since she entered this world. While we knew there was a long road ahead, it was comforting to know she was able to breathe on her own because her lungs had developed.

The doctors then diagnosed her with Tetrology of Fallot. Because of her PDA development, Jade was immediately put on special medication to keep her blood flowing. Unfortunately, the medication caused her to stop breathing so she was intubated and placed on a ventilator. 

During that time we went on a roller coaster ride of trying to get her medicine right and keep her PDA open.

Unlike most parents who get to hold their babies right away and head home a few days after delivery, we had to wait a week to hold our little girl. 

Many obstacles followed Jade after she was born. She has had multiple stint procedures to help her heart as well as four open-heart surgeries. She struggled to gain weight and ended up getting a G-tube. After her second open-heart surgery, Jade suffered a cardiac arrest which led to a hypoxic brain injury and a placement of a trach. After her cardiac arrest, Jade was placed on ECMO, which saved her life. August 4th, 2016, forever changed our lives as this was the day that our seemingly ‘typical’ baby with a heart defect was taken from us. We went from being parents of a child with a heart defect that smiled, looked at us, made noises, held her bottle, and sucked her thumb, to parents of a child who may never again do these things. 

Jade didn’t enter our home until she was 463 days old. Born at Mercy Hospital, transferred to Cardinal Glennon, and then to Ranken Jordan Bridge Hospital, our baby girl spent the first 15 months of her life in medical facilities. While we were elated to finally bring her home, making that transition was daunting to say the least. We had to learn about insurance, waivers, organization of equipment, Durable Medical Equipment (DME) companies, nursing care, the list goes on. Simply making sure she is breathing, eating, and comfortable was a stress in and of itself. 

After a year of being home and realizing what we went through to get her home and keep her home safely, we knew more resources were needed to properly support and empower parents. It was then that Joe and I created Jade’s Helpful Heart Foundation, so parents didn’t have to feel alone in this overwhelming process. Jade participated in the Jogging for Jade events where we raised money for the foundation. She would go and meet everyone that signed up. It was amazing seeing the extraordinary support and love for our girl pour out into this foundation.

Over the years, Jade had multiple surgeries and doctor visits. These included overnights for sleep studies, botox injections, hip surgery, abductor release, echos, being poked by needles to get blood, etc. We went through multiple nursing agencies as well as state derived services for care. We battled insurance/pharmacies to make sure Jade got all of her therapies and medications. We advocated with her schools for homebound services to keep her healthy. We learned to wean her from a ventilator and we learned new devices like a shaker vest. We not only had to learn to become parents we had to learn to become nurses, therapists, advocates, and caretakers. We had to stay organized with the amount of information given to us. We had to keep calendars and spreadsheets of everything. But, through it all Jade stayed strong and would eventually give us a smile, as long as she got snuggles.

During these years, Jade had taught us what it means to love someone even if they can’t say it back. She had taught us resiliency, patience, and appreciation for life itself. She went through more than any child should have to go through. She was an amazing big sister to Mila Jo and James. She taught them to be gentle, to love, and talk without words. She taught them empathy and a desire for snuggles. She taught them unconditional love.

Jade got to visit the ocean this past year for her Make-a-Wish trip. She got to go with her family and best friend. It was the most amazing experience we could have given her. Because of her incredible team of doctors and nurses helping us we were able to achieve this amazing moment. 

Jade took her final breaths in our arms on December 11th 2023. Her heart, which fought so many health battles, couldn’t keep up with what was happening in her lungs from her most recent hospitalization. 

Jade touched the lives of countless people, near and far, many who never had the opportunity to meet her in person. Though she was unable to speak verbally, her presence spoke volumes. At her service, not only was her family and friends there, her doctors, nurses, therapists, and her teachers were there too. 

Jade taught me a lot in life and I can go on and on about it; however, one thing that is important to note today is how important the roles of doctors, nurses, therapists, and teachers are to not only a child with medical complexities but all children and their families. When I lost Jade, I also lost those working with her and lost a part of my normal. As strange as it may sound I miss the doctor visits and the spreadsheets, I’m a bit lost without them. But Jade like she has always done continues to help me. So this is now my new normal and I want to help. Joe and I continue the foundation in her honor and we are here to hopefully make a small difference.