On this day when thanks leaps from our lips, I'd like to share with you a story. A sweet and tender tale of a precious family, who under intense pressure is not cracking, but instead producing a rare and treasured beauty. Their story is intricately entwined with scores of people who love them. Their story is full of triumph and tears, perseverance and pain and ultimately hope and healing.
Where to begin? Perhaps the moment that stopped me in my tracks while creating family portraits in the hospital with them…one so easily missed in the frantic pace and noise of daily life…one that had me stuffing back tears? Seems like as good a place as any to begin our story.
Her tiny hand rested delicately inside her father’s big strong hand… until she noticed what no one else did, an almost imperceptible cut. She picked up her Daddy’s hand, with her own burn scarred hand, and placed a gentle healing kiss on the tiny wound. She was clearly mimicking something she’d had done to her hundreds of times in the first 8 years of her life. She did this as she nestled herself comfortably into her Daddy’s lap for the first time in 17 months, since the PICU had become her home.
This moment, so full of raw tenderness, offers a tiny microscopic view into the beauty being raised from the ashes in the lives of the Burdette family. I was privileged to partner with them to create family portraits at the hospital because of a dear friend of the family and client-friend of mine, who texted me days earlier, saying“we need to chat.”
It was 17 months ago that the Burdette family’s lives changed in one terrifying evening. Reese and her sister Brinkley were staying at her grandparent’s farmhouse in VA over the Memorial Day holiday. Patricia woke to the smell of fire and raced into Reese’s room to find her sleeping in a room on fire. She moved through the flames to rescue her precious granddaughter.
Meanwhile, her husband rescued Brinkley in another room and they emerged unscathed. Unfortunately the same could not be said for Patricia and Reese.
Ambulances transported Patricia and Reese immediately to Winchester Hospital. Before long, they were both airlifted to hospitals that could better treat the extensive nature of their burns. Patricia went to Washington Medical Burn Center where she was treated in the ICU for 2 months. Reese was flown to Johns Hopkins Children’s Hospital where she is still receiving treatment in the Pediatric Intensive Care Unit (PICU). Patricia is now at home and visits Reese weekly though she continues to suffer complications from the fire. She is scheduled for her next surgery on December 15th to help remove some scarring in her throat and remove more of her vocal cords to help open up airways so she can breathe more easily. Everyone hopes the benefits will last longer than the last surgery.
Reese suffered burns on 35% of her body; however, the most severe damage was to her lungs as a result of the smoke inhalation. The damage was so severe, Reese was kept in an induced coma for 4 months following the fire. This allowed her ravaged body time to begin the massive healing process that lay ahead. Reese’s tiny frame was, quite simply, wrecked. She suffered the first of 5 cardiac arrests she would endure a week after the fire. The first led to her being placed on ECMO, a device designed to do the work of her heart and lungs. Reese remained on ECMO for 10 weeks, an almost unheard of long time. In it’s introductory phases in the 1960’s, ECMO patients could withstand the device for a maximum of only a day or two …ECMO’s come quite a long way, thanks to skilled and tenacious physicians!
Doctors knew Reese could not survive on ECMO any longer and made a decision to put her on RVAD. RVAD is typically used for heart support but at this point in her journey Reese just needed lung support. Thanks to the ingenuity of Dr. Kristen Nelson, who was able to innovate treatments specifically for the demands of Reese’s body, the Hopkins staff was able to adapt the RVAD to support Reese’s lungs. The RVAD pumps oxygenated blood through Reese’s heart, which directly leads to her lungs. The RVAD has saved Reese’s life.
The first 3 months of Reese’s stay, Claire and Justin had to wait in the waiting room, often sleeping there. Daily they walked the long hall and rounded the corner to Reese’s room with what felt like lead weights in their shoes and their hearts. This walk required Herculean strength because it was so often met with the terrifying sight of crowds of doctors and nurses piling frantically into Reese’s room. Desperation flooded their souls at this sight. There were times when Claire could not be a part of the daily rounds because hope seemed absent from every clinical conversation.
The family was called the hospital too many times in those first several months to say what doctors thought would be their goodbyes. Yet, Reese is here today so full of spark and life; doctors say she is a miracle child. The Burdettes know, without a doubt, that prayer has been their lifeline. They covet every prayer, from every person who is partnering with them before the throne of our Heavenly Father.
The Burdette’s know the prayer coverage surrounding them has been indispensible in their fight. They believe that the Lord is using Reese to teach the Hopkins medical team how to help other sick children. Claire has plans, when Reese is discharged, to advocate for continuity doctors for patients with long hospital stays. Current protocol in the ICU is to rotate a new attending doctor in every week. This is one of the scariest hurdles parents have to scale each week. Having to update each new doctor with Reese’s history while they each debate a new course of action has been exhausting and terrifying for Justin and Claire.
Reese’s first 4 months in the Pediatric Intensive Care Unit was like a nightmare the family just could not wake up from. They had no idea throughout those long months if Reese would still be Reese when she woke up. It was suspected that all the heart attacks might have resulted in a loss of brain function. Would their spunky little girl who loves her family and friends, music, her cows, belly laughing and being in 4-H still be there?
Between the first cardiac arrest that led to the need for ECMO, the 4 following cardiac arrests that followed due to mechanical issues, a daily need for blood transfusions, internal bleeding, surgeries to repair holes in her lungs, and collapsed lungs …it seemed any combination of those things could rob them of who they knew Reese to be. The Burdettes summoned courage from the prayer network that surrounded them. This helped them to hold onto unwavering hope, despite the repeated delivery of bad news.
Claire shared a powerful turning point in those early, desperate months in the NICU. Reese required repeated thoracotomies (lung patches) which were followed by surgeries to remove the combat gauze used to patch her lungs. At the time, it had been going so badly for Reese, Claire recalls she and Justin were at a loss for what to pray for their girl. They finally landed on this simple prayer, “Lord, please give us hope.”
Moments later, the surgical team assembled and a nurse walked up to introduce herself to the Burdettes, “Hi, I’m Hope and I’ll be assisting with Reese’s surgery today.” Claire melted. Thank You Lord for hearing and providing the answer they so desperately needed. She and Justin have never given up hope that Reese would be the ‘tough girl’ they know and love who would rise to each new level required to heal.
Reese began to wake slowly in late September. Claire and Justin read her cards and stories and just talked to her all day. Then on September 23, Reese was showing more signs of being conscious and everyone eagerly waited to hear if she would be responsive. Justin questioned her about her beloved cow, Pantene.
“Is Pantene your cow? Should Dad sell Pantene? Would you be mad at Dad if I sold Pantene?” These questions elicited a definite response from Reese and mom caught it on video. Justin and Claire smiled big knowing their little cowgirl was still there. This past June Pantene made a surprise visit to Hopkins to the great delight of Reese and the staff!
The day of our portrait time, we moved through the hospital with our giant entourage of medical staff and equipment, and I asked, “Can Reese sit in her dad’s lap?” The team all looked at one another and said, “I think she can, let’s try it.” To move her from her chair into a lap required several people and Reese began to cry almost immediately. I thought, “Oh no, maybe I shouldn’t have suggested it!” But then I noticed her cry actually seemed to be a cry of fear, not pain. It lasted very briefly and then I watched Reese relax and rest in her Daddy’s arms.
To be back in her Daddy’s arms, now that was a million dollar moment for the family. And with a dad like Justin, it quickly became evident why. Justin’s quick smile and sense of humor knows no limits when it comes to making his girls laugh. I brought a giant bag full of princess attire for Reese and Brinkley to create an outfit of their choosing. What I did not anticipate was Justin taking part as well to get repeated belly laughs and smiles from his girls. I commented to Claire about what a beautiful expression of love that was to behold. She said Justin is often admired for his no holds barred approach to doing what it takes to identify with his girls and keep them laughing. Precious and rare to watch this gift Justin is giving his girls.
Reese was so excited to be photographed in her dad’s lap, she quickly decided it was time to make rounds! She began requesting time in everyone’s laps for a photo-op. She got to sit in Claire’s lap next. With tears in her eyes, Claire said, “it’s been 17 months since I’ve been able to hold my girl like that! We are going to start doing that all the time now!” This is the tough job of physical therapy…encouraging wounded patients to take the next, often painful, steps required to make progress and heal. Claire is mighty in that role for Reese, strong as a lion, gentle as a dove. She is unflinching in her work to help Reese progress. She has her eyes on the prize for her sweet girl and she is championing her cause every step of the way, even when that involves tears of protest. Claire realizes there is pain in this journey to heal and that is the key to Reese going home.
Next it was Steph’s turn to hold Reese. Steph has cared for Reese since the beginning and holds a special place in Reese’s heart. Reese doesn’t see Steph as often as she’d like anymore since her situation is more stable. Steph is such a phenomenally talented nurse, she is needed for more critically unstable patients. But Steph stops in to see her girl whenever she can and then Reese pulls out her “Steph glasses” so they can be twins.
And last to hold Reese was Dr. Kristen, a tender soul who cried when she held Reese. Reese has been fortunate to have Dr. Kristen with her since the beginning of her stay at the PICU. Dr. Kristen was the brain behind adapting the RVAD to replace the ECMO for Reese, saving her life. Dr. Kristen suggested the plan to use A-Cell to treat her burns, which has helped them heal amazingly well, even better than skin graphs. The scarring on her forehead, where she had third degree burns, is amazingly minimal for this point in her recovery.
Dr. Kristen was able to hold the little girl who calls her family, who wears a “I love Dr. Kristen” dress, whose life she has been so deeply vested in daily over the last 17 months…she got to hold her for the first time. As soon as Reese was placed in her lap, Dr. Kristen burst into tears. Reese went right into action; she grabbed a tissue and began blotting Dr. Kristen’s tears. I’m fairly certain this is a moment that Dr. Kristen will never forget and helps to make all the exhaustion associated with being a physician worth it.
Tears fell often throughout the day. A nurse came to visit Claire with a basket of homemade goodies which were an outpouring ‘thank you’ for Claire’s listening ear and gracious comfort offered the day before to this nurse. Claire understands that as she walks through her storm, others are walking through their own as well. She claims no market on suffering and is so keenly aware to it happening around her. Her encouragement to others pours from a grateful heart for all that’s been poured into her family.
So how is Reese today? She’s full of smiles and mischievous grins, tenderness and spunk, silliness and questions. She is able to leave her room to visit the library and the courtyard on mild days with no wind. She is attending her school in Mercersburg via “Double” an iPad robot that broadcasts her live to the classroom. She muscles up for her regular therapy sessions which has most recently progressed to a walk down a hallway with balance support and cheering on from mom. She plays a lot of board games, listens to music and even had her own personal performance from one of her favorite bands, Aberdeen Green. Reese has a special connection with this band as Amanda, their lead singer, sang at Justin and Clarie’s wedding 10 years ago.
Reese Facetimes her friends, including hospital staff. She even Facetimed one of the pioneers of ECMO, Dr. Bartlett or, as they like to call him, Father ECMO. She has a new favorite past time--creating hilarious pictures with snap chat. Beware if you are in her room and bend over—you are liable to end up with a sombrero on your butt and be adorned with a pretzel arm drinking a glass of wine!
Reese recently celebrated a Halloween party with 17 friends who journeyed to the hospital to be silly with their friend who they miss terribly. They got to see her for the first time since the fire and found she was still full of the same wit, sass and spark they have always loved her for. Everyone dressed up and they played “pin the leg on the skeleton” per Reese’s wishes. Mom was a witch and Dad was a whoopee cushion and they reinforced what they so strongly believe - laughter is healing.
Reese sits in her wheel chair through the day and sleeps in a cardiac chair at night. She associates the bed with the place where bad things happen, so she prefers the chair. Most recently, Reese has begun standing up with the assistance of a table to lean on and working on puzzles at the table. She is also learning to cope with the loss of her leg due to ECMO and the poor circulation it caused in the early weeks at the hospital. Her prosthetic leg, she’s nicknamed “Leggo”, is helping her to build the muscle tone she’s lost and get her moving again. Reese is inspired by “Winter the Dolphin” who re-learned how to swim with a prosthetic tail.
Reese is busy making plans for all she and her family are going to do when she gets to go home to their dairy farm. They all eagerly anticipate this day but know they’ll be back to visit the staff that has become family to them over the last year and a half.
So many hold a special place in their heart because they have gone above and beyond their job description in providing care for Reese. For example, nurse Judy meets with Reese weekly to change her site dressings. Reese anticipates these visits because Judy creates drawings on the bandages and brings her donuts. Reese is making a scrapbook of the drawings that Judy brings her. Something tells me long into her old age when Reese eats a donut she’ll remember fondly the extra measures of love Judy poured into her care.
What’s up next for Reese? She’s preparing for her next big surgery coming up on Wednesday. She will be having her sub-clavian catheter replaced and that will be used for both dialysis and CO2 clearance. CO2 clearance is the lung support she will continue to need. The second and big part of the surgery will reconvene on Friday, via an open heart/by-pass surgery where they will remove the RVAD from her heart. This is a tedious surgery that has caused great concern for all who love Reese, but her doctors say she is ready and the surgery is necessary for Reese to continue to progress.
As with any surgery of this type, there are specific concerns about bleeding and the Burdette’s ask that everyone join them specifically in prayer about this. Reese will stay in an induced sleep state for no more a week this time before she will be awakened and start the labor of movement that will be required to keep her recovering.
Reese’s therapy team is helping to prepare her for her surgery in waves that an 8 year old can digest. One of Reese’s most persistent questions about her surgery has been, “Will I be able to Facetime? I am going to need to Facetime!” Claire tried to explain she was going to be very sleepy and it will probably be a little while before she could do that. She asked, “Who do you need to FT so badly?” Reese answered, “Riley, (Reese’s cousin) she’s having her scoliosis surgery on Dec. 8th and I have to check in on her and see how she’s doing.”
The healing journey from the surgery will not be easy, but Reese has shown she can rise to each challenge with grace and determination. Her lungs still have a lot of healing to do and her kidneys as well. She is on dialysis, but doctors project that because she is so young her lungs can regenerate and her kidneys can heal. From early one, doctors estimated it would require about a 2-year hospital stay to heal from her injuries. The Burdettes are ticking off the days!
The Burdettes are lavish in their praise for their family and friends who have surrounded them with prayer and support in hundreds of different ways. Claire and Justin continue to run their dairy farm while they split their time staying at a room they’ve rented at a local hotel so that someone is with Reese everyday. Justin’s parents have stepped back into a very active role in helping to run the dairy and care for Brinkley. Reese has plenty of visits from her extended family as well. Justin and Claire are also taking special care of Pantene and Pretzel, Reese’s prized cows that eagerly await her return to the farm.
I asked Claire what has been her biggest take away from her time at the PICU so far. Without any hesitation she said she’s learned patience and how resilient kids are. She’s learned the importance of expressing her concerns and fears, even when speaking up can be intimidating.
Last week the family celebrated the lighting of the tree in Mercersburg and Santa was projected into Reese's rooms via a screen to chat with kids. “What would you like for Christmas Reese?” he asked. To which Reese replied, “To spend more time with my family.” Family is everything to Reese and with parents like Justin and Claire, who are celebrating their 10th wedding anniversary this year, it’s easy to see why. When they consider Reese’s hospital stay they say, “What’s two years when she’s 80!?”
What perfect timing for this blog. Thanksgiving is what floods the Burdettes’ hearts right now. The first photo they posted of Reese in the PICU was last Thanksgiving, 6 months after the fire. It was a photo of Reese and Brinkley having lunch and Justin simply said, “What I’m thankful for.”
This Thanksgiving the Burdettes can barely express how grateful they are without crying. When they begin to recount where God has taken them in this last year… they are overwhelmed with joy. They look forward to being home this time next year celebrating at the farm with their family and friends! Please be in fervent prayer for tough girl, spunky girl, tender girl Reese!
Reese's thank you for everyone's support: