After both babies were admitted to the PICU, they were soon moved to rooms next to each other. There was a sliding door between the rooms so we could easily go back and forth between them. By December 8 (two days after taking the babies to the ER), it seemed like they had undergone every test imaginable. They had blood samples taken, head ultrasounds, EEG’s, X-rays and echocardiograms. There was still no explanation and neither baby was showing any signs of improvement. They had similar symptoms but they were starting to differ in a few ways as well. On December 8, Will had an arterial line inserted to consistently monitor his blood pressure because his heart function was so low. He also had a few episodes of his heart rate increasing. Clinically, he looked and seemed to be much sicker than his sister, but Caroline’s numbers were worse than his. After 24-hours in the PICU, she was being fully monitored just like Will. She had a PICC line inserted as well to get medications and draw blood, she had a nasal cannula with oxygen to assist with breathing and she was on IV fluids because she couldn’t eat.
Sometime in the early morning on December 9, Caroline started to get worked up and became very agitated. Taylor had spent the night at the hospital and I spent the night at my parent’s house with our two older children. I was planning to go to Breakfast with Santa with them that morning before I went back to the hospital. As we were getting ready I got a text from Taylor that said, “Something bad is happening to Caroline.” I called him immediately and he described our baby girl screaming, crying, coughing and throwing up blood. I sat on a chair in my parent’s family room, sobbing. Taylor was silent on the other end. “You should come here,” he finally said. My mom drove me to the hospital and I was certain that I was walking up to find that my baby girl was gone. Once I got to her room there were still a lot of doctors and nurses taking care of her. It was complete chaos and panic. I sat in a chair right outside her door, Taylor stood next to me and the resident explained that Caroline experienced a pulmonary hemorrhage, bleeding from the lungs. They didn’t know what had caused it, but she was intubated and put on a ventilator immediately. We were told that she was in a life-threatening condition. Over the next week or so we would know if this event would take her life or not. When we got to see her again later that morning she was sedated, breathing with help from a ventilator and motionless.
That night she was switched from the ventilator to an oscillator. An oscillator is a type of ventilator, they are both used to assist with breathing by getting oxygen into the lungs and removing carbon dioxide. A ventilator works by physically inflating and deflating the lungs, so the patient has chest rise and fall just like when they are breathing all on their own. An oscillator keeps the lungs open with positive pressure and vibrates quickly to remove gases. It is gentler on the lungs, so the decision to switch Caroline over was to protect her lungs since they were so delicate from the hemorrhage. An oscillator is very loud and has a continuous, systematic hum as it delivers hundreds of tiny breaths. It is a large, outdated looking machine and is used for very critical patients. When I saw her the next morning she was being supported by the oscillator, her little body was swollen because her kidneys were not functioning well and she was heavily sedated. I thought she was going to die.
The next morning Taylor remembers the doctor waking him up to explain to him what critical condition Caroline was in. This particular doctor was our very favorite from the first time we met him. He saved both of our children so many times, was willing to give them a chance and communicated with such compassion. During every procedure and emergency we never saw him as worried as he was that day. He saved Caroline’s life on December 9, Taylor said her blood was all over him and he did everything in his power to make sure she survived the pulmonary hemorrhage. He was very concerned for both of our babies and told Taylor, “if you are a praying man, you should pray.” So we prayed. We prayed first for what we wanted. We wanted our babies to be healed. We wanted our babies to be healthy. We wanted them to fully recover. Quickly. We wanted to know what made them so sick. We prayed that they would get better. We also prayed for God’s will. We prayed that God would do whatever brings Him the most glory. We declared God’s sovereignty and we prayed that He would help us to trust Him, no matter the outcome. We prayed knowing that prayer is not some magical way to get what you want from God, but that it is our way of communicating with our Heavenly Father. We prayed knowing that God uses our prayers to carry out His plan. We prayed knowing that God is good no matter what. We prayed in confidence that God could hear us and that He knew the desires of our hearts. We prayed in a way we never have before - desperately, urgently, continuously.
Photos by Brooks Wilder Photography.
Our mission is to glorify God by supporting children undergoing life-saving heart treatment and creating a caring community for their families in honor of our son, Will.
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!