Breaking the Magic
Most of the time I feel like I am parenting all wrong but I don’t really know how to make it “right.” It feels like I am supposed to be handling “terrible twos” and sibling rivalry and discipline and screen time and eating habits in another, better way but I don’t really know exactly what I am supposed to be doing differently. There is no manual that tells you how to be a "good" parent. Yes, there is reading and conversing and advice-seeking involved, but mostly it feels like I am just winging it. You’d think with more children, more experience, I would feel a little more adequate or have at least some insight as to how to approach or respond to a certain stage or behavior or circumstance. Not really. Each child is so different in their personality and development that it oftentimes feels like trial and error and error and error and error. Maybe it’s just me, but the feeling that I could be doing everything better is present every single day and most nights when I lay up thinking about what I could have done differently. Regret over not spending more time playing or listening, guilt over cutting bath time short because it was getting so late, longing for more days of little feet and messy faces and sweet baby heads snuggled into my shoulder. It’s all there, day after day, just wanting to enjoy the moment, do it right and create the most magical childhood possible for each of them separately and together. Magical. It’s a word I think about a lot when I am planning our days, our trips, our time together. I want them to remember being swarmed with bubbles on summer days and building forts and making homemade ice cream. I want their childhood to be filled with laughter and fun and smiles and hugs. I don’t want it to go by so fast, I want their littleness to linger and not let them fall into the trap of growing up.
“What are we going to tell Joshua?” I asked through tears. I was sitting at Will’s bedside with my dad in mid-December. We had just been asked if we would like to stop Will’s support and just hold him while he passed. The prognosis was bleak, the chances of him surviving were small, pretty much non-existent according to the doctors. He had come off ECMO hours before. His heart was going to stop. His lungs were going to collapse. We had just talked with the neurologist. He came in with his white doctor coat and his old-fashioned medical bag. He was so kind, genuine and honest. He was careful with his words and cautiously optimistic because I needed him to be. We were waiting for Will to die, every doctor had said so at least. I held his little hand and gently rubbed his fuzzy head. “I don’t know,” my dad said, trying not to cry. If he cried I cried more, so he tried not to. I didn’t care if he cried, what else were we supposed to do? My babies were dying and at home I had a sensitive, sweet, almost five year old little boy who was expecting to hold his baby brother and baby sister again. He knew they were sick, but sick to him meant you have a runny nose or a tummy ache. It lasts a few days and you get to drink juice and watch movies all day. He was anticipating Santa’s arrival and his main concern in life was making sure enough sprinkles made it onto his sugar cookies. How it should be - a magical childhood.
My job was to make him feel safe, loved, valued, secure and fill his days with joy and fun. But how could I do that now? Now I was going to be the one telling him that his little brother was gone. He would never see Will again. While I had so many dreams of life with my twins, my four children in a perfect, blissful, bubble-filled magical world, he had dreams too. We had talked about teaching his little brother about how to build train tracks and passing down clothes and taking bubble baths together. Now he wasn’t going to get to grow up with his best friend. He wasn’t even five, how could I bring this hurt, this intense pain and suffering into his world? Endure the pain of loosing my baby boy, then inflict that same pain onto my other baby boy. How could I do that? What am I going to tell him?
I thought about it many times in December. I agonized over what that conversation would be like. I played out his possible reactions in my mind. The days went by and I never had this dreaded conversation. Time kept passing and Will got better and soon I stopped thinking about what I was going to tell Joshua. I started thinking that Will was going to be okay, Joshua could have the little brother we dreamed of. I started thinking about the normalcy of brotherhood again, the special bond they would share with each other. Then March came and I knew something was wrong. We all did. One morning I was in Joshua’s room, sitting at the end of his bed and talking to him as he was waking up. I looked at his bed full of stuffed animals and I saw Will’s bear. My mom had gotten it for Will and Joshua was keeping it safe until he came home. I asked Joshua what he would think if Will went to be in heaven with Jesus. He was looking down, messing with one of his stuffed animals, and without really thinking, without even looking up or making eye contact with me he said, “I would be sad that I don’t get to see Will grow up, but I would be happy that he was in heaven with God and that I would get to see him again one day when I go to heaven.” I tried to hide my tears, I didn’t say anything but I just pulled him in and hugged his little head. I didn’t know what I would say to Joshua, but he had just told me what to say. If Will’s life really was coming to an end, if the conversation I had been dreading was about to happen, I now knew exactly what to say.
I didn’t want it to be true. I wanted Will’s decline to be another set back, an infection that he would recover from, a bump in the road. I prayed for a miracle until he took his last breath. One of the moments I had feared since December 6 was over but the other one still loomed in the near future. I held my sweet, perfect baby boy in my arms as he took his last breath and now I had to tell his big brother. I had imagined it but the past few months I was convinced that it wasn’t going to happen, they would be together and the awful scene I played out in my mind was just that - in my mind and there to stay. We woke up the morning after Will’s passing completely numb. We had one task that day. One dreaded task. Joshua was at school, he and his little sister had spent the night at my parent’s house and they took him to school that morning, so we hadn’t seen him. It was the day he stayed for his after school activity, so pick-up was later than usual. All day to think and rehearse and anticipate.
We were sitting on the floor with Caroline playing in her gym next to us. The moment I saw him walk around the corner I started crying. “We have something to tell you buddy,” and then we broke his little heart. We told him, we held him, we all cried together. I was prepared to answer hard questions but he didn’t really have much to say. Since then, the questions have come, watching him process and trying to figure out what he is feeling and thinking is difficult sometimes. On top of all the hard things about parenting that I wish I could do better, I am now trying to navigate how to help a five year old little boy grieve. If there were a parenting manual, this would not even be a part of it because it’s just unnatural. Siblings should grow up together, their childhood should be enchanting, filled with playing and laughing and fighting and running and being silly together. They shouldn’t say goodbye when they are young. When they are old and one passes away, they should have years and years of stories and inside jokes and memories to share. They should reminisce with a smile and think about all the memories they shared that were only theirs - their childhood. They should get to become an uncle or an aunt and raise their children together and have cousin sleep overs and trips and dance parties in the kitchen. It doesn’t seem fair that a child should be robbed of all of those things and have to endure the most unimaginable pain that they aren’t even old enough to really understand or comprehend.
“What are we going to tell Joshua,” is now something that I ask myself frequently. As he grows up and gets older his grief, his questions, his feeling and his emotions will all change. I will constantly be second-guessing myself - how I answered his questions, if I am supporting his emotions adequately and if I am doing enough to help him grieve in the way he needs to. It’s a burden I feel incapable of carrying but God provided the words then and He will continue to provide them as we navigate a whole new, unexpected realm of parenting. I treasure both of my boys and I want them to still have a bond even though it won’t ever be in the way I hoped for or imagined. What I want to tell Joshua is that his little brother is with Jesus and he is no longer sick but completely healed and whole. I want to tell Joshua that his little brother was strong and sweet and cherished. I want to tell Joshua that he should be so proud of his little brother because he has made a bigger impact during his 96 days on Earth than most of us will make in an entire lifetime. I want to tell Joshua that his little brother would have loved him and looked up to him so much. I want to tell Joshua that I am so sad that I don’t get to see Will grow up. I am so sad that I don’t get to see them play catch or open a new race track together on Christmas morning or ride bikes up and down our street. I want to tell Joshua that his feelings and emotions are valued and valid and that he should never try to hide them because he is scared or embarrassed. I want to tell him that it’s okay to be happy, it’s okay to cry, it’s okay to question and wonder and wish. I want to tell him that his daddy and I will always be here for him, we will always miss Will with him and we will always, always try to give him a magical childhood. I want to tell Joshua that we love him, no matter what, and always will.
Will with his big brother, Joshua. They only got to know each other for a few days, but there was a lot of love between them. At the end of the video, Joshua is holding Will and says, "your brother is holding you." I will cherish that forever, knowing that Will knew the love of his brother and as Joshua said, one day they will see each other again in heaven. I can only imagine what a joyful reuniting that will be!
You're Still You
By mid-January Will was on a path. He was stable and making small improvements each day. His recovery would be a long, slow process, but we truly believed he would get better. We were thinking of the future - a month, six months, a year - and planning how we could help Will have the best life possible. On January 10 the medical staff started talking about Will getting a trach for long term respiratory support. He had been weaning slightly from the ventilator, but not enough to be extubated in the near future. There are complications that can arise when a child has an ET tube (the tube used to intubate a patient on a ventilator) for a long period of time, so a tracheostomy (the surgery to get the trach inserted) was the safest way to give Will the support he needed. Having a tracheostomy meant two things in my mind. One, he was stable enough to get the surgery. Two, he would be a technology dependent child for as long as he had the trach. The doctor thought he might need it for a few years to give his lungs time to develop and outgrow the pulmonary hypertension that he had developed. The thought of taking care of a child with special needs who requires medical support to live was slightly overwhelming but nothing we couldn’t handle. Taylor and I were certain that we could learn to care for Will’s trach for as long as he needed it.
Will’s tracheostomy was on January 16. The surgery went well with no complications and for the first time Will didn’t have anything on his face except for his tiny feeding tube. He was so cute and I could just imagine him as a sweet little toddler running around with his trach - I have these little green plaid overalls for him and for some reason I always imagined him in those. From that day on we tried to watch and learn as much about Will's trach as we could. We started by just observing the nurses as they took care of him and his new trach. They changed the ties daily and changed the trach about once every week. His ventilator settings were adjusted frequently and we tried to learn about all the settings and numbers on the ventilator as well. Soon we started helping with trach changes and changing the trach ties. Of course Taylor could do it all without a problem and with much more confidence than I could. I was more cautious, scared I would hurt him or cause an emergency. The trach is inserted through a hole in the child’s neck called a stoma and there are two velcro ties, one attaching to each side of the trach, that go around the child’s neck and attach in the back to hold the trach in place. Every day those ties have to be changed out and the neck area has to be cleaned. It’s a whole process involving a lot of supplies. The nurses could change his trach ties by themselves in just minutes and were very patient when they were teaching me and letting me practice. Will cried most of the time his trach ties were being changed, so I wanted to go as quickly as possible so he could get comfortable again, but I was so careful that it took a long time. After doing it a few times I got more comfortable, still slow, but I felt proud that I could do something to take care of my son. We were prepared and ready for life with a trach and we had so much hope that it would help give Will the time he needed to get better.
Before Will got a trach I knew literally nothing about it. The only person I knew of who had a trach was Christopher Reeve. So when the doctor first mentioned that Will might need a trach, I googled Christopher Reeve. I mostly wanted to see what a trach even looked like and maybe gain some insight as to what it might be like for Will to have one. I watched a few videos of him talking with the trach and read about his accident and what his life was like after. Obviously Will's situation was very different, he wasn't paralyzed and didn't have the same type of injuries as Christopher Reeve, but they had the trach in common and that was a big part of each of their stories. As I was reading I ran across an article about an interview with Christopher Reeve from 1998. It focused on his life before and after his accident and the transformation he went through. There was part of the interview when he was talking about the days after his accident and he was contemplating asking the doctors to remove his support because his injuries were so grave. When discussing it with his wife she said she supported whatever he decided and that she would still be in it with him for the long haul. Then, he says, she added the words that saved his life, “I love you. You are still you.” We felt the same about Will. He was still Will. Whether he had a trach or not, whether he had a disability or developmental delays, whether he was sick or healthy, whether he needed medications or dialysis or special care or not, he was still Will. He was still ours. Reading about Christopher Reeve helped in a way I didn’t expect it to. I researched him merely to see what a trach looked like and ended with a profound confidence that we were doing the right thing. The option to stop, to remove support and let him pass was still there. We didn’t have to move forward with the tracheostomy, but reading those words confirmed what I was already feeling - just because Will needed extra support didn’t mean he was no longer Will. It is inspiring to read about someone who makes a tragedy into a blessing, turns heartbreak into something positive and Christopher Reeve did that. Will did that.
After Will got his trach he had a hard time recovering. There were a few days and nights when he spiked a fever, had a high heart rate and was breathing fast. It was scary for a few days because we didn’t know if he had gotten another infection that would maybe start attacking all his organs again. After a few days he was much better and back on his path to recovery. We were praying for his kidneys to start functioning, for his heart to get stronger and for his lungs to continue developing. We prayed that God would give him a full recovery and believed with confidence that God could do it.
Believing with confidence is easy to write, hard to do. Christians hear a lot about having "faith of a mustard seed." It's from a passage in Matthew and another in Luke when Jesus is talking to his disciples and tells them if they have faith the size of a mustard seed then they can move mountains. A lot of times in my life, and especially during Will's life, I have felt like if I just had more faith, more confidence in God's promises, if I just didn't doubt Him at all, then I would see God do amazing things, move mountains. What's encouraging about Jesus' words is that a mustard seed is really, really small. Will taught me what it looks like, what it feels like, to have that type of faith. There are many times during Will's life when I was discouraged, heartbroken, helpless, I questioned God and I didn't understand why Will was so sick. A lot of times I fell into the trap of feeling that if I just had more faith in God that He would heal Will. I was so arrogant to think that my faith had so much to do with it, like it was somehow all on me. God tells us to have faith of a mustard seed because the focus is not on our faith, the size or amount, it is on our God. Faith is putting your trust in WHO God is - He is the object of our faith and so often we tend to make ourselves or our circumstances the focus. God never promises health or wealth in the Bible. God promises eternal life to everyone who believe in Jesus. God promises Romans 6:23, "For the wages of sin is death, but the gift of God is eternal life through Christ Jesus our Lord." Just a little bit of faith, mustard seed-sized faith, in a God as good, as powerful and as almighty as my God is sufficient. It's enough to witness the miraculous, move mountains, because that same faith is enough to secure my eternity. It's not about how much faith I had that God could or would heal Will, it's about who I was putting my faith in, continuing to declare Christ and trust in Him. I saw miracles, over and over, in that PICU as my two babies overcame incredible odds, lived when they shouldn't have and survived when we were told they would not. Will getting a trach might seem discouraging, he was going to be a ventilator dependent child for the foreseeable future and there are challenges that come with that. But mustard seed faith means that God is bigger than any technology, He is bigger than any diagnosis and He is bigger than any challenges. God is good no matter what.
We didn't see Will's trach as a negative or a set back, we saw it as a step in his path to recovery. He was still Will, still our baby boy, whether he needed extra support or not. A lot of learning, a lot of humility, a lot of unknowns. I learned a lot about mustard seed faith and a lot about Christopher Reeve, a lot that gave me perspective and confidence, but my most favorite thing about him - his son’s name is Will too. I like that.
Will before and after his tracheostomy. The picture on the left shows him intubated, the ET tube is coming out of the side of his mouth is a taped down across his face. The picture on the right is from the day he got his trach, it is the tube coming from his neck. Both were attached to the same ventilator that gave him respiratory support while he recovered.
Caroline Comes Home
Taylor and I spent the last few days of 2017 preparing for a huge transition for our family. Caroline was on the hospital floor preparing to come home. She was weaning off one last medication and was being monitored to make sure she was gaining weight properly. She had all her final testing done, she had learned to nurse and was acting just like a normal baby. On December 31, Caroline and Will’s due date, we were told that Caroline could go home the next day. The first emotions were joy, excitement and happiness. Our baby girl stayed in the hospital for 27 days and taking her home completely recovered and healthy was the best possible outcome. But then came fear. She had so many monitors on at the hospital, how would I know if something was wrong? What if she stopped eating or her temperature was low or her heart started to get weak again? What if she got sick again? What if she got exposed to another virus or bacteria? It was scary to take her home.
Leaving the hospital felt almost like a crime. Like we were stealing her or something. She had been there for what seemed like such a long time and we just walked out with her, put her in the car and left, just like that. January 1st was a cold, rainy day. Caroline's Grandaddy and big brother came to get her in the afternoon. It was one day after her original due date, so in a way it was exactly when she was supposed to be coming home - right on schedule. I spent some time with Will that day and then my dad stayed with him while Taylor took me, Joshua and Caroline home. He helped me get everything set up, made sure we had everything we needed and then headed back to the hospital. Since I was nursing, I obviously had to be with Caroline through the night and Taylor stayed at the hospital every night with Will. I am thankful that Will never spent a night alone and I would never ever change that, but being by myself with a fragile newborn that almost died was very daunting. It's hard to describe what I felt like when Taylor left, maybe lonely or helpless or scared or sad, I'm not really sure. All I know is that Will having his daddy there with him through the night was a top priority for us, so in a way I didn't acknowledge any of those feelings or fear and instead just moved forward.
Having a healthy newborn is a lot to handle, a lot of learning, a lot of adjusting - the sleepless nights, nursing every few hours, rocking, soothing, swaying. With our two older children, I had Taylor home to help me. Not now. Now I was alone, completely and totally responsible for Caroline. I was up with her all night the first few weeks. There were multiple times we both sat on the couch, crying through the late hours of the night. I was scared I would fall asleep holding her, but she didn’t want to be put down and I didn't want to put her down. She was catching up from lost time in the hospital, so she was eating every 2 hours. Every time she cried I was scared she would stop breathing or work herself up like the day she had the pulmonary hemorrhage. Every time I gave her a bath or changed her diaper or put a new outfit on her she screamed. Apparently this is common for babies who have been in the hospital for a long time. "Touch-me-not" is what the occupational therapist called her. She didn’t want to be touched because every time she was touched in the hospital it was unpleasant. Someone was poking her with a needle or sticking something in her nose or mouth. Caroline wasn’t used to being touched in a loving, gentle way and every time I touched her (unless I was simply holding her) her whole body would turn red and she would scream and cry.
Thankfully I was pretty much recovered from my c-section at this point, but there were still things that were hard for me to do by myself. Standing for hours and bouncing her hurt. Bending over the tub to give her a bath was still uncomfortable. On top of how physically difficult that first month was, the emotional pain was hard as well. It was the guilt, the sadness, the fear, a constant state of balancing and stress and survival. I felt guilty that I couldn’t have both of our older children come home. I still wasn’t supposed to lift my one year old, so if she was home I needed someone with me to help and watch her. Most nights she spent the night at my mom and dad’s house because I just couldn’t take care of all three children by myself. A mother is supposed to be able to take care of her children, I couldn't and it felt like a failure. I felt guilty leaving Caroline with Taylor during the day so I could go see Will. Caroline knew how to drink from a bottle but she preferred to nurse, so every day she had to have one or two bottles with Taylor while I was gone and I felt bad for leaving her. I felt bad for not letting her nurse for every feeding after she had worked so hard to learn how to. I felt like I couldn’t give my older two children enough attention, like I was neglecting them in some way. Most of all, I hated not being with Will every second. I usually got 5-6 hours per day with him. Depending on the day I sometimes got to hold him or help with a bath or watch him do therapy. But sometimes he had to have a procedure or he was asleep or I needed to talk to doctors and I didn’t get a chance to hold him or play with him. Sometimes those 5-6 hours flew by and I left feeling like I missed out on an entire day with him. When I got home my mind was there and when I was with Will my mind was at home. I felt like I couldn’t be all in or fully present. I felt guilty about that too. Even though I know there is nothing I could have done better or differently, that's just how I felt, nothing I did could have changed those feelings.
While January was a very difficult month, I was constantly reminded of what a miracle Caroline is. It sometimes got overlooked because we were so focused on Will and helping him get better, but I was reminded the day before we went home while talking to the cardiologist that Caroline's story "should" have been completely different. She told me that many of the doctors didn’t think either of them would recover. I remember thinking how amazing that Caroline did. She and her brother had the same virus and while he was still in critical condition, she was coming home. It was amazing but how could that be? How could it affect them so differently? How could one recover and the other not? Now that Will is gone, her recovery is even more miraculous to me. There are so many times I look at her and just think how amazing that she had the same virus that made her brother so sick and took his life. How amazing that she is here with us.
When Caroline left the hospital Will was still in critical condition but slightly improving. The dialysis was working well enough that while he was still swollen, he had started getting some fluid off. Every day he seemed to be more alert, looking around, moving his arms and even crying. Watching a baby cry while intubated is very strange because you can’t hear anything. You see them cry, mouth open, tears flowing but no sound. Seeing Will cry was heartbreaking because I couldn’t just pick him up and comfort him like I would with Caroline. Seeing Will cry was also weirdly encouraging. He was doing something that normal babies do. He was responding and reacting.
On January 3 Will went to surgery to get a dialysis catheter. Having the correct catheter to do peritoneal dialysis helped the whole process to work much better. Sending Will off to surgery was scary, mostly because weeks before the surgeon told us he would bleed to death if he underwent this procedure. Thankfully, we met a different surgeon who does the procedure in a completely different way, so there was less risk of bleeding and he was confident that if Will did start bleeding it would be a small amount and he could stop it. The procedure went well and the catheter worked well. We were hoping that his kidneys would start working and he wouldn’t need the dialysis for long. We were hoping he wouldn’t need a kidney transplant and even if his kidneys didn’t function at 100% that they would work enough for him to get by (at least for a while) without continuous dialysis until he was big enough for a transplant. At this point we were just waiting to see what Will’s path was going to be. We were starting off 2018 with a lot of hope for Will. We didn’t know what the future held, but we were positive and it seemed like a lot of the doctors and nurses started to be more positive as well. Will had made it through when no one thought he would make it to the end of the year and we had every expectation that he would keep going in that direction.
Will with his paci! Nurse Ashley cut Caroline and Will's pacis so they could have them while intubated - we love her and we love watching our sweet boy enjoy his paci!
I Thought He Would Come Home
Some of Caroline's last days in the PICU.
December 26 was a big day for both babies. A turning point. Taylor sent a very long text that morning after rounds. Our favorite doctor, the one I am always praising, was there that day. Taylor said, “The doctor is making moves. Caroline is coming off the nasal flow and will be breathing completely on her own today. He wants her feeding through a bottle every 2-3 hours and getting whatever she doesn’t take through the feeding tube. She’s going to wean completely off phentynal (a narcotic) and he wants her out of the PICU as soon as possible. He thinks the oscillator is no longer helping Will. He doesn’t want to keep him paralyzed anymore so they are going to put him on a ventilator today. The catheter is causing too many problems and since the surgeon won’t place a dialysis catheter he is going to change out the catheter himself. Will is also going to get a feeding tube and start slowly at 2mls per hour. He said that Will needs to try to move forward if he is going to get better.” This is a doctor who was willing to give our baby a chance, not just write him off as being potentially neurological damaged or irreversibly sick. So we moved forward.
Will's room at the end of December.
A few nights before I had talked to the surgeon about replacing the catheter with a true dialysis catheter. He didn’t think it was possible and I was devastated as I felt like dialysis was his only hope. If he couldn’t get fluid off and properly filtrate his blood, there was no chance for him to recover. The current catheter wasn’t working and the correct catheter could not be put in because the surgeon thought he would bleed to death during surgery, so the only reasonable option was to replace the current catheter with another one in a non-surgical procedure done at his bedside. I remember sitting in a chair in Caroline’s room holding her and I was facing the sliding glass door between her and Will’s room. The nurses prepared everything they needed to switch out the catheter. This still wasn’t the correct dialysis catheter, but it was one that should work better than what he had. I watched as the doctor and multiple nurses gathered around his bed to do this procedure. I felt helpless, anxious, sacred. I knew there was a very good chance that I could be getting ready to watch my baby boy experience some catastrophic event or even die. I knew there was a chance he could start bleeding and they wouldn’t be able to control it. I knew there was a chance doing this procedure would be too much on him and his heart would stop. I just sat there, holding Caroline, with all these thoughts racing through my mind. The charge nurse kindly stood between the rooms and updated me on the progress of the procedure. I heard their conversation, the doctor asking for this and that, and not really understanding any of it. Finally the nurse said that it seemed like everything went well. I was relieved but only for a little while.
Later that day they switched Will from the oscillator to the ventilator. The actual switch was terrifying but he made it over, still breathing. But could he maintain it? Could he take breaths on his own? What if he had to go back to the oscillator? Would there be any path for him? Only time would tell and we continued living hour to hour - every cycle of dialysis, every minute he kept breathing on the ventilator. One of the positive aspects of coming off the oscillator was that he no longer had to be paralyzed and could start moving around again. That day had a lot of moments when we were just holding our breath, waiting to see what would happen and wondering if our baby would survive. It was hard. It was also hard that night when Caroline left to go to the hospital floor. I have never felt such mixed emotions. I was so happy that she was getting out of the PICU. It meant that she was recovering, she was going to survive and probably be at home soon. But he was staying. She was leaving her brother behind and I didn’t know if they would ever see each other again. She knew him the best, they spent the most time together. They heard each other’s heart beats, kicked each other and were born only one minute apart from each other. They were separated in the PICU, but still close to each other and now she was going away. I asked the nurse if I could take her into his room to say good bye. She graciously helped me wheel Caroline’s IV pole and portable oxygen into Will’s room. I laid her on his bed and cried. They were so perfect and I knew that it was very possible that it was the last time I would ever see them together. I placed her back in her bed, told Will goodnight and pulled a red wagon full of all Caroline’s things up to another room on another floor. It was sad and happy. That walk out of the PICU felt victorious in a way but at the same time it just didn’t feel right. The life we planned for them was together, not apart. There was still so much that was unknown but so much to celebrate. I spent the night with Caroline and Taylor stayed with Will, just like our first night at the hospital. Caroline was up all night, practicing drinking from a bottle and getting through her withdraw symptoms. Will had a lot to prove that night.
Caroline in her new room on the hospital floor. She was weaned off oxygen and all breathing support. She got her feeding tube removed once she was taking full feeds from a bottle consistently and weaned off all her medications. We spent a lot of time helping her learn to eat and holding her.
The next morning, December 27, Will got a feeding tube and started getting 1ml of breastmilk per hour. After weeks of feeling like I could do nothing to help my baby, seeing him with a feeding tube was wonderful. All those hours of pumping were paying off and I could do at least one thing to help him get better. He weaned down on the epinephrine drip, the medication that was helping his heart continue to pump, got to a very low dose and eventually completely off. Since his paralytic was stopped the day before, he was now squeezing our finger, looking around and taking breaths on his own. He was maintaining a stable blood pressure and his heart function was improving.
I was in Caroline’s room when the cardiologist came to talk to me about Will’s echo. She was amazed that his heart was improving. She said it went from severely depressed to mildly depressed and she had never seen a child with a heart as low functioning as his recover. She saw no reason why he wouldn’t be okay. Even if his heart didn’t improve anymore, she thought he would be fine - no heart procedure, surgery or transplant. The main issue now was his kidneys. Apparently kidneys are very resilient and they usually recover on their own, although it could take weeks or months for this to happen. Now that his heart function was better, they were pretty certain that his kidneys were receiving proper blood flow and it would hopefully just be a matter of time. We ended 2017 with so much hope. Caroline was on her way home and Will seemed to be getting better - recovering even. He was becoming more alert everyday and acting very appropriately for his age, despite the brain bleed. Our little boy had made it longer and further than anyone thought he would.
This was the week when I started truly believing that Will would get better. I wasn’t delusional, I didn’t think he was right behind Caroline and I knew he had a very long way to go. I knew that there would be a lot more obstacles, procedures and potentially major surgeries to get him there. I thought he would most likely spend his first birthday in the hospital. I thought he may have to be moved to another hospital if he needed a transplant in the future. I knew he might have a disability, maybe even something severe. I knew he would likely be developmentally delayed and everything might be harder for him. I was aware that we would likely have a nurse in our home. We would have hours of therapy and have more doctors appointments than I could probably ever imagine. I knew it would be hard on our family and even change our lives, but for the better. He was our little boy and there is no obstacle, disability or complication that we weren’t willing to encounter. He was more than worth it. I really did think he would get better. I thought he would come home.
Sweet Will in the beginning of 2018 - so much hope!
To All the Nurses...
To All the Nurses Who Loved Our Will,
There are not words powerful enough to adequately thank you. I learned quickly that you - Pediatric ICU nurses - are a very special kind of nurse, a very special kind of person. I have tried to describe to people out here what you do everyday and my words always fail. An outsider can’t begin to understand the magnitude of your influence or importance of what you do until they have seen it in action. Your daily reality is foreign to most of us and even once we’ve had a glimpse into your world we cannot fully understand or appreciate all that you do for us and for our children. We watched you care for our baby in a way we could not. We watched you monitor Will’s numbers, administer medications, draw blood, send samples, manage IV drips and change dressings. We watched you bathe him, change his diapers and keep him warm. We watched you respond, rescue and resuscitate. We watched you advocate for him and speak up when you knew something was wrong. We watched you wait until 4pm to eat lunch because taking care of Will was more important than taking care of yourself. We watched as you put off pumping milk for your own baby another hour, another two hours, because Will needed your attention. We watched you create the most positive and peaceful environment possible for our little boy. We watched you play Disney movies and lullabies so his room full of monitors and beeping sounded a little more like home. We watched you organize his supplies, label his equipment and make his room comfortable. We watched you obsessively clean, sanitize, sterilize and put on and take off more yellow gowns and purple gloves than we could count to protect our little boy. Even when you may have felt unnoticed or unappreciated, we watched you give your very best to our baby.
We not only watched you take care of our son, but you took care of us too. You answered all of my questions. I know I had a lot ("a lot" being an extreme understatement), I know I asked the same questions over and over again and I know I asked questions that didn't always have an answer. Thank you for being patient. Thank you for making me feel as if Will was all that mattered in the world and answering my questions about him was your sole task for the day. I know you had a million things to do and plenty of other tasks to take care of, but you never rushed or made me feel like my questions didn’t matter. Thank you being there when the days and nights were hard. Thank you for showing compassion and empathy when we cried. Thank you for stopping me to pray when we got unexpected bad news. Thank you for the hugs. Thank you for listening when we were frustrated or mad or scared. Thank you for teaching us to take care of Will. Thank you for being patient when it took me forever to help you change trach ties or help with his bath. You could have done it twice as fast by yourself but you took the time to teach and encourage, giving me much needed confidence. Thank you for letting us hold him. We know it took a lot of effort to get him out of his bed and into our arms but you never said no or acted annoyed when we asked. Thank you for making those moments with him a priority because now they are some of our most cherished memories. Thank you for bending rules, sneaking pictures and celebrating with us. Thank you for making much of little victories. Thank you for helping us interpret test results and blood work and labs. Thank you for your opinions, thoughts and wisdom. You may not realize that your words helped us through the most difficult times. To you, it may have just been sharing an experience or a casual conversation, but to us it was advice that we valued and wisdom that helped us have hope and make decisions. Thank you for being positive. Thank you for spending time away from your children to take care of mine. Thank you for being invested. Thank you for working even when you didn't feel good. I know there were days when you were worried about something going on at home or tired from being up with your own baby the night before. Thank you for being there for us even when you needed someone to be there for you. You not only take care of sick children every day, but you take care of their parents too.
I told many of you that I could never do your job. I said that because I am in awe of what you do and I know I don't have the capacity to do any of it myself. You come to work every day for a twelve hour shift that lasts way longer than twelve hours. You wake up early, you go home late, you work all day or all night. You work on Christmas and New Years and sacrifice time away from your family to be with ours. You take care of children who are sick, children who are abused and children who are dying. You take care of children who don’t have someone to take care of them. I’m sure you don’t stop thinking about them when you go home. Actually, I know you don’t because I know that you called to check on Will even on your day off. I’m sure at times you feel under appreciated or taken for granted but I can assure you that you are so valued because it takes an extremely special person to do what you do every day. I only saw a small part of your job, I only saw how you took care of my baby, but I know you do so much more than my eyes could see. Words fail to express the appreciation you deserve, but I want you to know that we are grateful.
We are grateful that Will knew you. We are grateful that we could trust you when we weren’t there, that you gave Will a chance at life and that you loved him. That is what we are most grateful for, that you loved our baby. You comforted him when he was upset and spent countless hours trying to help him sleep. You stopped by to check on him even on days he wasn’t “your patient.” You teared up when he smiled. You talked to him, smiled at him, dressed him, played with him and changed countless diapers. You were excited to see him, genuinely excited. I can’t tell you how happy it made me when you said how sweet, cute, handsome, strong or amazing my boy was and the best part is that I knew you really meant it. I was so proud when you requested to take care of him and when you were so happy that he was your patient for the day or night. I know it wasn’t easy being in his room. You could barely leave between keeping up with dialysis, feedings, medications and therapies. But you still wanted to take care of him.
I know that when Will passed away you were sad too. I know that when you got the news it was hard to go on with your day without thinking about him. I know that when I asked, “Is Will trying to die and we aren’t letting him” you didn’t want to answer me. You knew I was going to ask it, you knew what the answer was and you were heartbroken just like me. You were graceful, caring and compassionate as we watched him take his last breath. You comforted us as we walked to our car to drive home without our baby. You somehow made me smile as I held my son, waiting for him to die. You cried with us, not always in front of us, but I knew that you were grieving with us. You somehow knew exactly what to say. You had to endure his loss in a whole different way than us. You have to walk by “Will’s room” every day you go to work. Maybe by now you have even taken care of another child staying in his room. I don’t know how you do it. I know he is not the only child you have gotten attached to. I know you have held children as they took their last breath and I know you have loved countless children the same way you loved mine. I know you see a lot of them get better - you saw Caroline get better - and I know there are joyful and rewarding parts of your job, but you also experience the sadness and loss and you keep going back. Thank you for going back. Thank you for enduring the heartbreak, devastation, sickness and pain present in the PICU every day and every night. You have studied, trained and learned how to be a nurse, but you are so much more than what you learned in order to earn your degree. I don’t say that to diminish your knowledge in any way, I am amazed at how much you know about medicine and science and the human body, how many questions you can answer and how much knowledge you possess. I say that to emphasize how much of being a nurse comes from you, your personality, your experience, your compassion, your heart. There is no training that can teach you that part. You do so much more than your job requires every day and I will always be grateful that you are part of Will’s life. Thank you for taking care of him, thank you for fighting with him, thank you for loving him.
With much gratitude and thankfulness,
These handprints are from the day of Will's passing. His nurse and the hospital Chaplin helped us get his hand prints and foot prints, along with his Caroline's, to keep as a sweet memory of our little boy. I am so thankful for these little hands and all the people who took care of them.
Our mission is to children from developing countries receiving heart treatment in Jacksonville, FL.
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!