On the morning of December 15, Caroline had started improving. She was awake a lot over night. She was awake crying, kicking and moving around. She was awake fighting. She was becoming more aware of all the equipment and monitors on and around her and she did not like it. They were starting to talk about when to extubate her, which means she was ready to come off the ventilator and breath on her own. Her numbers were improving, she was urinating and her heart function, while still depressed, was better.
Will was not urinating at all. He was extremely swollen, he couldn’t move his arms or legs or open his eyes. We were given the option to try dialysis but there were a few issues. Will was only able to do peritoneal dialysis (as opposed to hemodialysis) because of his size and instability. With peritoneal dialysis, a catheter is inserted into the peritoneum (abdomen) and fluid it instilled through the catheter into the abdominal cavity. It stays in the abdomen for a period of time (called dwell time) and then is drained back out through the catheter. Dialysis does the work of your kidneys, so every time the fluid drains there should be more coming out than going in. Will was not stable enough to go to surgery to get the correct dialysis catheter inserted, so the doctors were willing to try using the catheter he already had, although they thought the chances of it working were small. It was the catheter inserted a few nights before to help drain fluid from his stomach and it was not meant for dialysis. It was stiff and only had a few holes, so the chances of it getting clogged as the fluid went in and out were high. But it was the only option so we said yes, we wanted to try.
It seems like over the next few days Will experienced every possible complication with dialysis. Each cycle was supposed to take an hour. 15 minutes to instill, 30 minutes for the fluid to dwell and 15 minutes to drain. I have never lived as hour-to-hour as I did those first few days of dialysis. Did it instill in 15 minutes? If not the catheter was probably clogged. Did he drain? If so, how much? Was he going to have a negative fluid balance for the day? If he had to get blood products or extra medication or electrolytes it could make him have a positive balance because he had more going in than coming out. At the same time we were watching with every diaper change for a sign that his kidneys would start functioning. I hated that little yellow line on the Pampers and wanted it to turn blue so badly.
On December 17, there were so many issues with the catheter that they started talking about trying to replace it with a dialysis catheter. The hope was that dialysis would be more efficient with the correct type of catheter so that he could get the fluid off that he so desperately needed. This required surgery. I was in tears as I talked to the surgeon that night. He told me that Will would bleed to death if he did the surgery and because of the risks involved he would not do it. He thought Will had no chance and the thought of my sweet baby bleeding to death in a cold, bright operating room surrounded by doctors was horrifying. I felt like getting the dialysis to work properly was our only hope. Having all that excess fluid was putting pressure on his already weak heart and lungs. That night his blood pressure was so low that the doctor thought he wouldn’t make it to the morning. I had already gone back to my parents’ house for the night and Taylor called me ask what code we wanted Will on. One option is a full code, meaning that doctors will do everything possible to resuscitate the patient. The other option is AND (Allow Natural Death)/ DNR (Do Not Resuscitate). The doctor explained to Taylor that because Will’s heart was so weak, he will not be able to restart it if it stopped, even if he did everything possible. We would just be doing something to Will instead of for him. We decided to tell the doctor not to resuscitate our child if his heart stops.
Let my child die. That is what you are saying when choosing this option. It’s not a choice any parent should ever have to make. Let my child die. Don’t try to save him. Part of me felt like making that decision meant we were giving up, but we had to think of the alternative. How could we be so selfish to put our baby through the traumatic experience of aggressive resuscitation when there is no chance of restarting his heart? How could we ask the doctor to hit him for nothing? So again, I tried to go to sleep, thinking that I would not see my son alive ever again. I thought I would receive a call sometime that night from my husband telling me that Will was gone. I thought his heart would stop before I could get to him again in the morning. I was crying, sobbing, with my parents after my two older children were in bed and I remember my dad saying that he would take me back up to the hospital if I felt like I hadn't said good bye. I told him that I had said bye to Will every time I left his side since December 6. Every time I left to pump or go to the bathroom or step into Caroline’s room. There had not been a day where I left, even for a minute, and didn’t know if he would be there or not the next time I saw him.
Every night as I put my children in bed I say, “I love you, goodnight and sweet dreams, I’ll see you in the morning.” I have said it every night for five years, with certainty. I have never doubted that I will see my children in the morning. I have never doubted that I will walk into their rooms, usually before the sun comes up, and see them with perfectly messy hair and bright eyes, ready for the day. I never doubted that I would pick them up the next morning and give them a kiss on the forehead and hug them. No parent should ever have to wonder if their child will make it to the next morning. But we did. So far, for twelve nights, I had said goodbye to my babies not knowing if I would see them again in the morning. My only hope was in knowing that I would see them again, just maybe not in the morning. Our God is good. He not only made a way for us to spend eternity in His presence, but He allows us to do it with the ones we love so dearly on Earth. So every night, when it was time to leave, I held Will’s hand and whispered in his ear, “I love you, goodnight and sweet dreams, I’ll see you in the morning.” Not because I was fully confident that I would see my little boy in the morning, but because I was fully confident that no matter what happened I would see him again one day.
One of those uncertain nights my husband texted me this, “Whether in life or death, God will be glorified in Will and I take great sorrow and yet joy in knowing that.” Will didn’t die that night, I saw him the next morning and many more mornings after that. Another time that Will lived when, according to medical standards, he shouldn’t have. Another chance at life. Another display of strength from our little baby. Another miracle.
This was Caroline around mid/late December. She was intubated, the tube going into her mouth is attached to the ventilator and the tape over her face is helping to keep it in place. The yellow tube is her feeding tube so she could get breastmilk since she couldn't eat yet. It is hard to look back at pictures of her and see how sick she was, but looking at her today shows just how far she has come! Below are pictures of four-month-old Caroline. She is healthy and strong. She rolls over, grabs for toys and even had her first trip to the beach. She is the happiest baby I have ever met - she laughs at everything and just looking at her makes her smile. I am overjoyed at every milestone she reaches but also heartbroken that her brother isn't here to reach them with her. What a sweet blessing she is!
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!