This is an entry from my dad's (Will's Grandaddy) journal from Christmas Day 2017.
December 25, 2017
Room 312, Wolfson Children’s Hospital
Caroline is better. Doctors say today she could be out of PICU in two days. Only thing keeping he in PICU now is Fentanyl, a pain medicine, she has to be weaned from it, has been weaning for the past few days, now reducing rate even more and should be off in about two days. Last time I saw Sweet Caroline before today was December 14th, so it was 11 days ago. She looks so much better today. She looks like a baby. Pink, pretty. She cries quite a bit, wants her pacifier. She is swaddled in a blanket, has a paci with a pink ducky on it. Has a pink Snoopy that Joshua gave her and a Winnie the Pooh. It’s about 11:30 am. Wolfson Children’s Hospital room 311. Candy came here this morning about 5:30 to let Taylor leave the hospital to come to the house for Christmas morning with Joshua and Emma Grace.
They had a fun Christmas morning. They were up about 6:00 am, came downstairs to the living room with the Christmas tree soon thereafter. Joshua was excited, he got bumper cars, a robot, a giant Snoopy, shoes and a lot of other toys from Santa. Emma Grace squealed when she ran into the living room and saw all the toys. Santa brought her a little pink baby stroller to stroll baby dolls, and a pink soft chair that looks like a throne for a princess. She also got some shiny shoes and dress up clothes. But maybe her favorite is the Princess Coupe pink car. She likes shoes, jewelry and the car the most. Go figure? She tosses the stuffed animals aside and pays more attention to the car and clothes! She’s 18 months old, so girls are just born this way?!
This Christmas is not the one we expected. Caroline and Will were born on December 1st, went home from the hospital on December 4th and were checked in to Wolfson Children’s Hospital on December 6th. They both were rushed to the PICU. It took more than a week for the diagnosis, enterovirus sepsis. Assumingly, they were born healthy but caught a virus in the hospital after birth or after leaving the hospital. It’s unbelievable the damage a virus can do to a newborn baby. It attacks the heart. Both Will and Caroline have been close to passing away more than once. Will has been more severe from the beginning. Today, on Christmas day in the year 2017, 25 days after birth and 19 days in the hospital, Caroline is getting close to being released from PICU but there is no good prognosis for Will.
Will continues to be strong. He has lived longer already than the doctors predicted. Today, Candy and I listened to the doctors and nurses do the rounds at 11:00 am. Most of the nurses and doctors were dressed for Christmas, so it was kind of a funny scene to watch a group of elves and reindeer do hospital rounds. The lead doctor said Will’s heart is so weak, it is a muscle that is barely functioning, so it’s not strong enough to power his other organs, especially his kidneys. He has been on kidney dialysis for a little more than one week. It has helped take a lot of excess fluid off of him. The doctor said he had looked like “the Michelin Man.” Because his kidneys had stopped the waste that would typically be urinated out was building up in his tiny body, so he was just becoming big and puffy and misshapen. He just looked so pitiful but the doctor said the fluid buildup isn’t really the concern. The concern is that his heart function is too weak. Regardless of fluid or kidney function, the real concern is his heart. We asked the doctor and she said she has seen children in renal failure come back in one to two months and their heart strengthen but, she said, the concern is: will Will give up before he has a chance or the strength to recover? She didn’t say it but I thought her tone and body language was doubtful.
If it was a question about whether Will would give up, I thought, then I am totally betting on Will! From the beginning the thought that kept ringing in my head was “his name is ‘Will’ for a reason.” He is Strong Will. He is God’s Will. Will Power was the nickname I kept using for him. Always and from the beginning, my heart – and the messages I felt and heard as I prayed – kept giving me images of strength and power. I thought, Will has to be incredibly strong. The last time I saw him he was all puffed up, his head misshaped. I prayed at his bed and then Courtney came in and we cried and prayed. We talked to the neurologist, he seemed doubtful although very empathetic and careful in his word choice. For me, it was impossible not to be hopeful that he would recover. How could a baby just born be so sick? Why would God have him live only to die so soon thereafter? Courtney told me that she has said goodbye to him more than once. That was 10 days ago, but Will powers on.
I keep thinking: “What is God’s purpose? That’s the right focus, God has a plan. Go with it, lean into it. Miraculously, Will has lived on earth just 25 short days and his life has impacted so many people in so many profound ways. Hundreds are praying for him and his sister. We are living a miracle, God is incredible beyond words. God’s Will is happening inside and all around us, what a joy, what a wonder.”
Room 312 is glowing. The light is soft, unusual because the hospital room light is typically bright, intense and cold. But not today on Christmas, its soft and Will glows and it reflects out into the hallway. Music volume is up and playing louder than usual, Christmas music. The nurses have made a shirt for Will and its draped over him with the words “Baby’s First Christmas” in red and green letters. His eyes are covered with a patch and they’ve colored it to look like sunglasses. He lays splayed out, legs and arms to the side, not moving but for the breathing machine. It feels to me like God is here, holding Will in the palm of his hand. I expect God to take him at any second. It’s happening, I think, I hear the trumpets of angels, I hear God calling. I feel Will’s glow and warmth. It’s a meditation, extremely warm. I’m all alone with Will and God in the center of a gigantic hospital. Nobody else is here. I hold Will’s hand and say: “Merry Christmas Will Power, you are a blessing and a gift to all of us.”
I love this picture, Lala holding her namesake, Caroline is named after her Lala.
We tried to make Christmas morning “normal” but it was hard not to be sad that Will and Caroline were not at home.
Emma Grace loved the car, clothes and jewelry.
My Sweet Courtney with her Sweet Caroline in the room next to Will’s on her first Christmas.
Our mission is to support international children receiving heart treatment in Jacksonville, FL.
My name is Courtney Hughes and I am Will's mommy. I am happy that you are here to read Will's story and make a difference with us!