After Will got his trach, he had a few rough days trying to recover. He spiked a fever a few times, had some low blood pressure, high heart rate and high white blood cell count (indicating that his body may be trying to fight off an infection). Everyone was a little panicked but hoped it was just because he was recovering from surgery. Thankfully he was doing better within a few days. He liked looking around at his toys and he was working consistency with physical, speech and occupational therapy. By the end of January he was stable, now it was just about finding a balancing and waiting. Every day it was a challenge to balance his fluids and medications. He had been weaned off a lot of the medications he was on in December. His anti-seizure medication was discontinued because his EEG showed that he was no longer having seizures, so the ones he had were presumably a reaction to the virus. He had a few heart medications and daily electrolyte replacements because of dialysis but there were no major changes or surprises on a day-to-day basis. Sometimes a dosage would be tweaked or his ventilator settings would slightly change but it was really just keeping him stable until we knew what he was going to need. The main concerns were his heart and kidneys. His kidneys still weren’t working after over a month and the longer they didn’t work, the less likely they were to start up on their own. It seemed like his heart had recovered more than anyone thought it would, but it was still weak. It was hard because no one really knew what his future held, we just had to wait and see. The longer his kidneys went without functioning the more we suspected that he would need a kidney transplant in the future. He had to be over 20 pounds to even be considered for a transplant, so there was nothing else we could do besides keep him on dialysis and fight over who would get to give him a kidney. His heart was an unknown and there was still potential that it could get stronger as he grew, especially if he had functioning kidneys. So much was up in the air and it was hard not to think too far into the future. I went there a lot and after asking a million questions and worrying and wondering, I had to pull back, enjoy Will and trust God.
One of the skills Will worked on during occupational therapy was tracking and fixing on objects. He spent time under his black, white and read activity gym because those are the colors babies can see best and he could practice those skills. One of his goals for physical therapy was developing head and neck control. The physical therapist would sit him up to work on strengthening those muscles and he loved it!
Will in his physical therapy chair.
Enjoying Will was easy. He was the most calm, consolable and sweet baby I have ever been around. He loved looking at his toys and being talked to. We read to him, sang to him and played with him. There were many days when we got to help with his bath, diaper change or change trach ties, so we were able to be more hands-on than ever. On January 22, we got to hold him for the first time. On December 6 I carried him into the ER and put him down in this little giraffe bed, that was the last time I had held him. One of the nurses had warned us that he may not like being held. Apparently it’s normal for a lot of children who have been in a hospital bed for an extended period of time without much physical touch to get upset when they are held since they aren't used to it. Not Will. He loved being held and obviously we loved getting to hold him! Sometimes he would just look at us and sometime he would go right to sleep. One time we let him and Caroline FaceTime and she screamed and cried the whole time while he just sweetly looked at her - their personalities were very different. It took a lot of effort and sometimes two people to transport him out of the bed and into our arms. He had so many cords and monitors and lines that it took a lot of organization and maneuvering. It was all worth it and those times of holding Will are some of the best and sweetest memories we have.
January 22, the first day we got to hold Will since December 6 when we brought him in to the ER.
On January 30, Will finally urinated. The news spread rapidly around the hospital, I don’t know that there had ever been so much excitement about a baby having a wet diaper. Taylor sent me a video of him that night telling me that he went to the bathroom and I just started crying. I thought this was it, this was going to change his course and he was going to get better. I thought if his kidneys would just start working everything else would fall into place. I had every expectation that his kidneys were going to function. The next morning the nephrologist gave him another dose of diuretics to try to keep the momentum going. We waited all day with so much anticipation. Hour after hour we saw that little yellow line on the diaper and our hope slowly dwindled. For days and weeks after that, I prayed for Will to urinate more than I have ever prayed for anything in my life. The answer to that prayer was “no.” The answer to a lot of our prayers were “no.”
As a Christian and a mom, I pray for my children more than I pray for anyone or anything else in my life. I pray for all kinds of things, their safety, their futures, their struggles. But the prayer I pray the most, the deepest desire I have for my children is for them to experience a saving faith in Jesus Christ. Before they were even born I have been praying that they would experience the love of God through the Gospel and put their trust in His promise of eternity spent with Him in heaven. I pray that they would believe in the Gospel at an early age and they would give their lives to honoring Christ in whatever they do. My greatest fear as a mom is that my children would spend eternity apart from Christ.
I prayed a lot of things for Will that God said “no” to. I prayed for Will’s kidneys to function. No. I asked God to heal him. No. I asked God that he would live. No. I asked God to let me take care of him and raise him. No. I asked God to let him have a long, healthy life. No. I asked God to make him better, help him to fully recover and have no lifelong complications from the virus. No, no, no. Up until Will’s very last breath I prayed that God would miraculously heal him and give him life here on Earth. No. I would be lying if I said I wasn’t completely devastated that God didn’t answer those prayers differently and I don’t think I will ever fully understand why God didn’t do what I know He could have. But God answered “yes” to the most important prayer, the one that I most greatly desire for Will and all of my children. I asked God to allow Will to spend eternity in His presence and God said “yes.” I have the gift of confidence that my little boy is eternally safe in the arms of Christ*. God did give Will life, full, abundant, perfect life in Heaven with Him. Of course I wish he had gone later. I wish that I had gotten to see him grow up. I wish I gotten to hold him more and see his first steps and listen to him learn to talk. I wish I could see him play with his brother and sisters and run on the playground and build forts with pillows and blankets on a rainy day. I will always wish and want for more time with him. But even though a lot of my prayers were answered with a “no”, even though I didn’t get the time I wanted, the most important prayer, the one I desire most, was answered with a “yes”. God is good no matter what. That is the hope that we have in Christ. And even though I miss my little boy here on Earth, there is no better place for him to be than in heaven. We get the gift of knowing exactly where Will is and who he is with for eternity, so while loosing Will is the most painful, tragic and sorrowful Earthly loss, we can take great comfort that it is not an eternal loss.
Will wearing my favorite outfit, Noah's Ark. These were the first matching outfits that I bought for Caroline and Will after I found out our twins were a boy and a girl. Will didn't get fully dressed much because it was difficult with all the cords and monitors, but I am glad he got to wear this outfit a few times.
*If you are unfamiliar with Christianity, it may be confusing why I know my baby is in heaven. You have probably heard Christians proclaim that faith in Jesus Christ gives us the gift of eternal life with God in heaven. Obviously, babies cannot make a decision or a proclamation of faith, as well as many others who have a certain disabilities or who have never heard the Gospel. One day I plan to write about why I believe that God makes a way for all babies to be in heaven and what the Bible says about it, but if you are curious in the mean time, here is an article that explains it much better than I ever will.
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!