I woke up the morning after Will came off ECMO (December 13) and he was still alive. I had so many emotions I don't really know how to describe how I felt - relief, disbelief, shock, fear, sad, numb - I was feeling everything and nothing all at the same time. Before going to the hospital, I went to Will's older bother’s pre-school Christmas performance. They retold the story of Jesus’ birth and Joshua was one of the three wise men. The school was live-streaming the play on Facebook, so Taylor was able to watch from the hospital room. I imagined my babies listening to their older brother sing. I pictured them as four year olds dressed as a little wise man or angel in their play. I thought of them signing about Jesus being born and God’s plan for salvation through His son. I cried. I tried to hide it but I couldn’t help mourning the loss of seeing them like their older brother. Even though they were both still here, I knew there was a very real possibility that I may not see my babies make it to four years old. Just 12 hours before I was told that Will was going to die and a few days before I was told that Caroline was in a life-threatening condition, that she may or may not make it another week. Not having my babies seemed like more of a reality than having them. I knew that I may never see either of my twins sing a Christmas song, dress up in a costume, perform on a stage, go to school, walk in a line with the rest of their classmates or beam with pride when they see their family watching from the audience. I cried because I imagined them hearing those sweet children singing about Jesus and knew that it may be the only time in their lives that they ever hear singing. It may be the only time they hear the story of Jesus’ birth. It may be their only Christmas.
After the play I went back to the hospital. Will was on the highest level of support and medications to keep his heart going. If he started having low blood pressure or his heart stopped there was nothing they could do about it. It was the eighth day in a row that I thought my babies were going to die. Eight days of not knowing why they were sick. Eight days of praying desperately that God would heal them. We had a routine by day eight. I would spend the night at my parent’s house with our two older children and go to the hospital during the day, giving Taylor a chance to have a break and spend time with the older two as well. Every night I would get up to pump every three hours and text Taylor to check on the babies. This is the conversation that we had the night of December 13:
Me: “Tell him I love him.”
Taylor: “I do all the time”
Me: “I just want him so badly. I just want him to be strong and healthy and get better.”
Taylor: “Me too. More than anything. Ever since we came here I can’t get the lyrics of “It Is Well With My Soul” out of my head. We love him so fiercely but I want to trust in God’s best for him. Just like your dad said, he is God’s Will and God blessed us by allowing us to be parents of the sweetest boy.”
Me: “You’re right, those lyrics have been in my head too. He is already a miracle and I pray that God heals him. I just love them both so much and I can’t imagine not having them, but I know God has a plan for them both and trust whatever that plan is will bring Him the most glory. Please tell them both goodnight and mommy loves them”
Taylor: “I will my sweet wife”
Me: “And make sure they stay warm”
Taylor: “They are both snuggly”
December 14, 2017. We had been in the hospital with our babies for nine days and we finally got a diagnosis. Enterovirus. I thought I had never heard of it but I actually had. I had never heard the word “enterovirus," but when the doctor explained it to me, I knew what it was and I had most likely had experience with it. He said that it is a very common virus. One that we all have at some point in our lives. It has a wide range of symptoms and effects everyone differently. Some people could have a mild headache, others have symptoms of the “common cold” and some may never really have any symptoms at all. That was scary to me. Someone could have had this virus that is killing my babies and may not have even felt sick. But how? How did they get infected with this virus? We didn’t parade them around the mall or take them to the playground or have visitors at the hospital or when they came home. We are the overly cautious parents but even with all our protection they were still exposed. It could have been anyone - a doctor or nurse, the pediatrician or someone who brings in the trays of hospital food. It could have been one of us. Everyone thinks babies are so tough and resilient. They are in a way, but they are also so fragile and so vulnerable. A virus that is super common, a virus that everyone has at some point during their lives, was causing their bodies to literally shut down. The resident explained to me that since babies have such immature immune systems it is not uncommon that their bodies would react to a virus like this. They had some reserves that they received from me before birth and maybe some antibodies from the few days of breastmilk they took in, but that ran out very quickly as their bodies tried to fight the virus. When they came into the hospital they had literally zero white blood cells. Their bodies had used everything they had to fight the virus and had nothing else, so they were shutting down. Multi-organ system failure. That’s what it’s called when your body stops working. Heart, brain, kidneys, liver, lungs - they were all failing.
We finally had a diagnosis, so it was positive in a way because we knew what was making our babies so sick. However, since it was a virus, it changed nothing. Its not like we got a diagnosis and then there was some other treatment or cure for them. There is not a cure for a virus, you support the body until it “runs its course.” Our babies were being fully supported, so the question was could they make it until the virus runs its course and could they recover from the damage done from the virus. Caroline did and her brother did not.
At this point, I couldn't take a picture of Will. Whether he lived or not, I knew that I didn't want to remember the way he looked. I wanted to take all the pain from him, I wanted so badly to just switch places with him. Since I couldn't do that, I wanted to make sure he knew we were there, so I held his hand, rubbed his head and talked to him as much as I could.
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!