I've always been the type of person who writes stuff down. Lists, journals, notes, stories. Maybe it's the introverted side of me or the part of me who wants to write children's books or maybe I got it from my dad. Whatever the reason, writing helps me but I have never shared any of it - maybe some school assignments or my grocery list - but I've never shared anything real. I don't really know why, maybe a combination of thinking no one would be interested and that it's not good enough or maybe just because it's personal. Maybe it's partially because I have never really had a subject worthy enough to write about, nothing that is important enough or special enough or valuable enough to be shared. But now I do. Now I have a son who is beyond all those things, he is more worthy, special, valuable and important than anything I have ever had to write about and anything I ever will write about. And while I wish more than anything that he was in my arms right now so that I couldn't be typing, he's not and I am. So I am going to share his story, really share it - the details, the feelings, the emotions, the heartache, the joy and the pain. I am going to share it because I think he is amazing and I want other people to know how amazing he is. I hope it helps someone, I hope it points just one more person to Christ and I hope it helps me have a place to remember. Not because I want to remember everything, but because I want to remember him. So, I am going to start - slowly, humbly, cautiously - telling his story. I'm not going to necessarily go in order, mostly because I am starting out of order. Instead of starting in the beginning, I am going to start on the day everything changed, the day the expectation of normal went away forever. It was December 6, 2017 and we took our two babies to the ER.
I have only been to the ER three other times in my life. Once when I was in high school and got bit by a dog while I was running. I got stitches and went home. The next time I was in college. I had a concussion so it was slightly more intense but still went home the next day. The third was last Christmas, my baby girl's first Christmas. She was five months old and we took her in because she was wheezing. She got a breathing treatment and went home a few hours later. Then there was December 6, 2017. We woke up after our second night of being home with our babies. Both of them were having a hard time learning to eat but we were told over and over again in the hospital that it was totally normal. They were preemies. They were twins. They were small. It takes time. They will get it. Will actually had one of his best feedings over night and I remember it was the first time he had drank a whole 40MLs of milk at once. Caroline was doing okay, nursing some and doing well with the bottle, but still not taking quite as much as she should. We had an appointment scheduled early in the afternoon so it was the first thing on my list to discuss. So we started - about an hour before we had to leave - getting the babies ready. Changing clothes, feeding, burping, changing diapers, changing clothes again. I had Will on the couch burping him when suddenly he arched his back and his eyes rolled back in his head. I screamed for my husband. I was terrified. He had a seizure. I didn't know he had a seizure, I had never seen anyone have a seizure, I didn't even know a baby that little could have a seizure. But after the fact I now know that he had a seizure. What I did know is that had we not had an appointment scheduled we would have been headed to the doctor because something was definitely wrong. We arrived at the pediatrician's office and started filling out paperwork. We undressed the babies and they were weighed and measured. Our pediatrician came in rather quickly after the nurse finished and said they had lost quite a bit of weight and their temperatures were low. She took their oxygen levels, which were normal at the time, and told us to go to the ER. I'm not sure exactly what she was thinking at the moment, but I am fairly certain that none of us expected the next three months to unfold the way that they did. We frantically packed everything back up and drove to the ER. It was a type of urgency I have never experienced. Nothing in the world was more important than getting help for our babies. Nothing could have stopped us, delayed us or distracted us. When we got there everything seemed to happen so fast. Our babies were taken out of our arms and put into beds to warm up. They were hooked up to monitors, their blood was drawn and they attempted a spinal tap on Caroline. I felt helpless. One moment we were at home snuggling two perfectly healthy babies and the next they were shuttled into the ER and we had no idea why. My most vivid memory from that day is when I heard someone yell through all the chaos, "He's not breathing," A bunch of people rushed to Will's bed and frantically resuscitated him. I couldn't see him, partially because there were so many people around but mostly because my face was in my hands and I was just sobbing. It didn't feel real. How could this be happening? He stopped breathing? What does that mean? Did he die? Did his heart stop? Are his lungs failing? What happens now? I couldn't even process what was happening, I didn't know what to ask, what to say or what to do. Someone threw a box of tissues into my lap and I sobbed, with my husband's arm around me, thinking that my baby was going to die. He had an episode of apnea and when I saw him again he looked lifeless. My husband went with him straight to the Pediatric Intensive Care Unit while I waited with his sister.
After Taylor and Will left, the room calmed down a little bit. Caroline was stable and there was no one rushing in and out anymore. The hospital's Chaplin came and was so kind to us. He found me a pump and I remember sitting in the room all by myself with Caroline in her bed, pumping milk for two babies who couldn't drink it and being able to do nothing but cry. I couldn't think or pray or understand or plan or prepare. I had no control over the situation, I couldn't stop it from happening, I couldn't help my babies. All I could do was cry. After a while I was told that Caroline was going to spend the night on one of the hospital floors for monitoring, so I gathered all of our things and followed as my baby girl was pushed to her room. I didn't really know what to do once we were "dropped off." I couldn't pick her up, hold her or comfort her in any way. I just stared at her in disbelief. The nurse came in to help me hold her and try to give her a bottle (she was still eating some but was also getting fluids through an IV). That night I stayed with her while Taylor spent the night with Will. Around 2am I got to carry her to get a head ultrasound and I didn't know that when I put her down it would be the last time I would hold my baby girl for almost a month. My heat was broken and torn. I couldn't be with both of my babies and they, for the first time, were separated from each other. That night Will had a PICC line inserted and a head ultrasound like Caroline. They also both had blood platelet transfusions. In the morning, Caroline joined Will in the PICU and Will was intubated. 24-hours had gone by and even now I can't begin to describe how I was feeling. I don't know if it's cause I can't remember or if it's because I couldn't process it at the time. That morning I saw my little baby boy needing a machine to help him breath. He needed fluids through an IV because he couldn't eat and he needed blood transfusions because his body wasn't working properly. And no one knew why. Most doctors thought it was an infection, but unfortunately it could take days to weeks for some of the tests to come back. Some doctors thought maybe it was something metabolic or a genetic disease. Both babies were showing similar symptoms. They were fraternal twins, the pregnancy was healthy, there were no complications with the birth, so some type of infection seemed to make sense. Even so, we had no idea and and it was scary.
Scary. If there is any word that could possibly describe my emotion it would be SCARED. Looking back on my text messages with my husband, that word stands out to me more than anything else from that first 24-hours. Multiple times I ended my text to Taylor with, "I'm scared." I was sacred that my babies were sick. I was scared of the unknown and uncertainty I was scared of not being in control. I was scared that my babies were in pain. I was scared that I couldn't help them. I was scared that I didn't know what to ask, I didn't know the medical terms, I didn't know the medications, the machines, the numbers. I was scared that no one knew why. I was scared that they would get worse. I was scared that they would die. I was so scared.
These are the last pictures that I took of Will and Caroline at home before we went to the ER.
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!