Christmas is a magical time of year - the most magical. All the twinkly lights and decorations and traditions. It is a time of celebration, joy and family. Being in the hospital with two dying babies at Christmas was really hard. Actually, “really hard” isn’t anywhere close to describing it, but there are no words to convey the emotions without actually feeling them. We were supposed to be decorating cookies, reading Christmas stories and sitting around the sparkly tree. We were supposed to get in the car with hot cocoa and drive around looking at decorated houses while listening to Christmas music. Our children were supposed to be wearing matching Christmas outfits and the sweet pajamas I picked out for them months before. Will had a white gown with a Christmas tree on it with green trim that matched his older brother’s pajamas. Caroline’s was pink with white polka dots, same Christmas tree, just like her big sister. I had ordered them in September. They were washed, hung and ready for Christmas time. Neither of our babies ever wore those gowns. Instead they had a white baby shirt, the one with the snaps on the sides, with “Baby’s First Christmas” written in red and green Sharpie by a caring nurse who was trying to make a memory for us. Will’s just lay over his chest because he was too swollen to actually put it on.
The week leading up to Christmas gave us a lot of hope. Caroline was improving and every doctor seemed to think she was going to make a full recovery. She was breathing with help from the ventilator but she was taking a lot of breaths on her own and plans were being made to extubate her, meaning she was getting ready to come off the ventilator. She had an MRI done on December 18 that showed she had some bleeding in her brain but it wasn’t extremely concerning. On December 19 she took a pacifier for the first time. This probably doesn’t seem like a big deal because babies take pacifiers all the time, but this was a huge milestone in our minds. Taking a paci meant that she had the reflex to suck and if she could suck then maybe she could eat. I learned from the very amazing speech therapist that sucking, swallowing and breathing all at the same time is very difficult for a baby, even a healthy, full-term baby. She compared it to working out for us. If we were asked to do an intense workout every 2-3 hours throughout the day we would be exhausted. Caroline’s nurse was willing to give the paci a try, even though Caroline was intubated and had a tube in her mouth. She cut the side of the paci so it would go around the tube and to our surprise Caroline took it right away. I remember how sweet it was to watch her with that paci. She was mad about everything and that paci gave her some comfort. On December 21, Caroline got to start having breastmilk through a feeding tube. She responded well to it and was able to get up to her full feedings pretty quickly. She also started being weaned off some of her medications, some of which were narcotics. The side effect of this was withdraw symptoms, so she was fussy, sweaty, sneezy and just overall uncomfortable. It was heartbreaking to see her so upset but also encouraging to see her slowly weaned off all medications. She even weaned completely off the heart medication that they thought she may need to go home with. Her recovery was miraculous. Less than two weeks ago we thought she was going to die. She wasn’t breathing and throwing up blood and the doctors thought she might not make it through the week. Now she was making huge steps forward and fighting to do so.
By Christmas Day Caroline was breathing on her own. She had a nasal cannula with some positive pressure and oxygen but was no longer needing the ventilator to breath. My Christmas gift was getting to give her a bottle for the first time since December 6. Getting to hold my tiny baby girl after watching what she had gone through over the past three weeks was one of the happiest moments of my life. She was born, got sick, underwent multiple invasive tests, had tubes, IV’s and lines inserted into her body, used a machine to breath and almost died. She started showing us a lot of her personality during the week leading up to Christmas. She was feisty. She was angry about every tube, needle and anything else that touched her body. She was so responsive and let everyone around know exactly what she wanted or didn’t want. We joked that everyone was a little scared of her, even Taylor and I didn’t touch her much because she got so mad. We would just stand over her little bed and talk to her, sometimes hold her hand, but mostly just try not to disturb her. I hope that she keeps that spirit. It may sound odd because people are always talking about the challenges of raising a strong-willed child, but I hope she stays as strong-willed as she was in that hospital bed. I pray that she isn’t afraid to speak her mind and stand up for what’s right. I think she is amazing and I know she is here for a purpose, just like her brother was.
I remember one night during that week so vividly. I was in Will’s room and when I came back to check on Caroline her nurse was giving her a bath and had “Sweet Caroline” playing. We loved this nurse and were always so happy when she was taking care of our babies. It was the same nurse who gave her the paci and the same nurse who loved Will so much. There was no way she could have known this, but Caroline is named after my mom and “Sweet Caroline” is the song my parents did their first dance to at their wedding. She was singing along and it was the first time I had smiled since December 6. I remember really noting that smile. Not because it had been so long since I smiled - it’s not like I had forgotten the feeling of happiness or what it was like to smile. That smile was so significant because in that moment I really felt like Caroline was going to be okay. I knew that she was going to survive, she was going to make it. I smiled because even though she was crying (bath time was not her favorite) there was so much joy and laughter around her. She had been surrounded by fear and machines and anxiety for three weeks and now there was happiness and hope and fun.
December 20, 2017 - Caroline with her paci and Winnie the Pooh from her big brother.
December 21, 2017 - The last time I held Caroline was around 2am on December 7. She went to get a head ultrasound in the middle of the night and I carried her there and back. I put her down in her bed when we returned to her room and the next morning she was taken to the PICU. This was the first time I got to hold her again.
December 25, 2017 - My Christmas present was getting to give Caroline a bottle for the first time!
December 26, 2017 - Sweet Caroline, no longer intubated and getting better.
The week leading up to Christmas was more positive for Will too. Even though he was in a much more critical state than Caroline, there were small improvements that we put our hope in. I can’t truly describe how Will looked mid-December. His kidneys were not functioning at all and although he had started peritoneal dialysis he still didn’t have the correct catheter and the process wasn’t working well. He was so swollen. At one point we estimated that he had doubled his weight in fluid. Six pounds of fluid. It may not seem like a lot but imagine if you doubled your weight in fluid. He couldn’t open his eyes or move his arms and legs. It’s hard to put into words how I felt seeing him like that. Words like “heartbreaking” and “devastating” aren’t powerful enough to reflect the emotion of it. I desperately wanted to take it all from him, make it better, switch places, make it go away. I couldn’t. Not only were his kidneys not working, but he was on an oscillator for respiratory support. After coming off ECMO he was put on an oscillator because he couldn’t breath on his own. He was sedated and still but his little body was constantly vibrating from the oscillator. He was also on a lot of medications. He had two poles loaded with IV drips. The drips included everything from pain killers to sedatives to heart medications. He was completely dependent on medical technology to live and he was surrounded by it.
On December 21, Will opened both of his eyes. I remember standing over him, his bed was raised up high so I had to get up on a stool to see him. He had opened his right eye two days before and was continuing to get fluid off through dialysis. Both of his eyes opened and he looked at me and it was amazing. He had the sweetest, most kind eyes and we hadn’t seen them for weeks. While it was so encouraging to see him awake, there was still trouble with the dialysis. The catheter being used had been placed to help drain fluid from his stomach when he first started swelling. It was more stiff and had less holes than a dialysis catheter, so it kept getting clogged or wouldn’t work if it was not in the correct position. It was frustrating for everyone but he wasn’t stable enough to have the procedure done to put the dialysis catheter in. So he continued being supported and we prayed that he would recover like his sister, that’s all we could do.
On Christmas Day I had a conversation with one of our favorite doctors. She was compassionate and honest and promised that she would continue giving Will a chance but tell us if she ever felt it was going too far. She told me that Will would declare himself and we would know if and when his time on Earth was coming to an end. Although he was heavily medicated and dependent on technology, she assured me that there was nothing preventing Will’s heart from stopping if it was going to stop. As she was saying these words to me I was holding Will’s five pound twin sister who was recovering from the same virus that was making him so sick. How could this be happening? He had already survived many days that were predicted to be his last and it felt like he wasn’t done yet. Her words came back to me in the beginning of March when his time on Earth was coming to an end. But not in December, in December he was trying to live. He had shocked a lot of doctors and had a strong will to survive.
One of those particularly hard days I was at the hospital with my dad. We had just talked to the neurologist who explained that Will’s brain stem was totally intact and he had brain activity. His neurological status was uncertain and only time would tell what that status would be. After listening to him my dad said how he felt like Will’s name was Will for a reason. He is God’s Will. God made him and God gave him life. God loves him more than any of us could ever imagine. God’s will for Will was good and perfect and right. While the thought of him not being with us was unimaginable, we could trust that God had a good and perfect plan for Will and who were we to tell God what that plan should be. My dad named the group text between me, my husband, my mom and himself “God’s Will” and that is still it’s name today. He belongs to God and God gave us the privilege to be his parents on Earth. I will admit that I don’t fully understand God’s plan, I don’t understand why Will was only here for 96 days and why most of those days were spent in a hospital. Of course I wish I could change it so that Will was still with us. I wish more than anything that he was here now, next to his sister grabbing for toys, rolling over and trying to suck his thumb, just like her. I don't know why that couldn't have been the outcome. I don't know why Will's life on Earth was so brief. But I don’t think I need to or even have to know. If I trust that God is who He says He is, then I can trust that His plan is infinitely better than mine. I can trust that my Will is God’s Will and His will is good and perfect.
December 25, 2017 - I have been hesitant to share these pictures of Will because they are so heartbreaking, but I think as I get to January/ February it will show how far he came. He had already been on dialysis for ten days, so he is much less swollen than he was but is still retaining a lot of fluid in these pictures. He is intubated and using the oscillator for respiratory support and has two PICC lines on his right side for IV medications.
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!