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!
Our mission is to support international children 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!