We made it to Evan’s surgery date without any more illnesses. Hallelujah! We also found a house that would work for us in Roanoke only 15 minutes from the hospital and all of Evan’s doctors. Also Alex got a new job! October was a big month for the Nortons to say the least.
We were set to move the weekend after Evan’s hernia surgery. We had to wait to put our house on the market until we had moved out because showing a house doesn’t really work when your kid is on isolation. We decided it was in our best interest to rent a house for a year and then buy when we had more time to look.
I had been pretty calm about Evan’s surgery up until the night before. I didn’t want to put him down the whole night, but for practicality Alex and I took turns sleeping. It’s a surreal thing to hold your child on more occasions than you can count wondering if that will be the last time. Some of those times were rational fears, others not. But either way, it is terrifying and humbling. Parenthood is just that: terrifying and humbling. When you allow yourself to love this big, you are vulnerable to all kinds of pain and sorrow. It’s scary. And knowing that you can’t protect your child from everything in this world is the most humbling thing. We are not enough for our children. We were never meant to be enough for them. But we will hold them and love them and then maybe hold them a little tighter. So I held my Evan that night. I breathed him in. I stroked his little wispy hairs. I watched his chest rise and fall with each breath. I kissed his chubby cheeks.
We left for the hospital shortly after 4AM the next morning. They got Evan all ready to go in the pre-op area and wheeled him back. He was so sweet and content. He had no idea what was happening. They took us to the parent waiting room and told us it would be a couple hours. We would meet Evan back up in the PICU afterwards so he could be monitored and get pain management for a few days. Evan’s surgeon came to meet with us in the waiting room when they finished. It went well, but she did need to call in another surgeon for assistance since Evan’s internal anatomy was so small relative to other babies his size. They told us the anesthesiologist would talk to us when we met him up in the PICU. Evan’s palliative care doctor walked up with us so she could hear from the surgical team as well and see if we needed anything. There are no words to explain how important she has been to us through all of Evan’s care.
Intubation and sedation was still a little wonky, but she told us that he was handling it better than he had in the past. Progress! They didn’t even have to keep him intubated this time. He was able to extubate in the OR and was breathing on his normal flow rate with his cannula. When we saw him, he was still pretty sedated, but he was starting to come around. His little cry was so pitiful. I remember being scared to change his diapers again since that’s exactly where his incisions were this time. We did our best to keep him comfortable, but as time went on that night he was clearly in more and more pain. I hated it. It was horrible. That night, he cried the whole night with only short breaks when meds would peak. We maxed him out on fentanyl, and he still was screaming through it. We ended up having to ween him back down from it because even though it was not touching his pain, it was hurting his respiratory drive. They ended up switching him to tramadol and IV Tylenol (it works better than oral for Evan) in alternating doses, and it seemed to be working. That’s the saddest thing about being a NICU baby with a complex medical history, but five months old, you have a tolerance to narcotics.
Keeping Evan comfortable was our main goal over the next couple days. We were careful about his positioning, his feeds, the level of light and sound in the room, etc. We had some amazing nurses caring for him (and us) throughout that really made a huge difference. The PICU was new for us, so we were learning to trust new people with our sweet baby. They made it easy.
Our last night we were stable enough to move out to the regular pediatric floor (with two of our favorite nurses, Joey and Loganne), but since they were so full, we were in a shared room. Not ideal. The chances of us actually getting a roommate though were really low because it had to be a child under two who tested negative for RSV and the flu. Since at this time of year illness is the leading cause of babies and toddlers being admitted, we were pretty sure we wouldn’t get a roommate. Within two hours, we got a roommate. It was a wild child who screamed pretty much the entire time. Alex and I even discussed signing out AMA with Evan if things didn’t improve. This wasn’t a restful environment for him to heal. Alex booked a room in the hotel across the street so he would be able to get back to the hospital quickly if that’s what we needed to do.
Things did get better, and I am glad we didn’t check out. We needed to talk to the physical therapist who is special needs car seat certified to figure out what to do when Evan got too big for the car bed he was using at the time. We were thinking we would have to find the car seat on the market that reclined the most and buy it. Little did we know, there was a car bed made for bigger babies! Melinda researched it right there with us at the bedside, did a quick assessment of Evan, and wrote the request for it from the company. The paperwork and all takes a while, so it was important that we got things moving quickly. Not only did we get our car seat problem solved that morning, but we got to talk with Melinda about Jesus and gosh, how we needed that. On our ride home that morning (our LAST 40 minute ride to or from the hospital!), Alex said how much of a “God thing” it was that we stayed that night and waited to see PT until that morning. He said we needed that conversation with Melinda. That’s the thing: God shows up, but we have to have our eyes open to see Him. We could have easily focused on the stress of that last night and how tired we were and how Alex had to spend the first half of his birthday (yup, it was his birthday) in the hospital with his baby. But on that ride home we were nothing but grateful (and maybe a little tired).
Evan recovered so quickly once we got home. Within four days, we didn’t need to give him Tylenol at all. Now it was time to move. We hadn’t actually packed anything at this point because baby and hospital and baby some more, oh and tired. We lined up Evan’s primary nurse from the NICU to meet us at the new house so she could stay with Evan for a couple hours while we went back to the old house to pack and load our cars. Moving was a multi-day, multi-person effort, but we finally got (almost) everything moved by the end if the next week. Alex was also on a two week break between jobs, so we got to have him home while we settled into the new house.
Living so close to Evan’s doctors was such a game changer for me. I didn’t need to have someone with me for his appointments anymore. I could confidently drive him to and from with very little stress. It was, I am sure, very comical for onlookers to witness me lugging Evan and all his accessories (including a giant EMS backpack that has become his diaper bag) in and out of places, but we were doing it!
Evan also got to celebrate his first Halloween that month! He, of course, was Harry Potter also known as “the boy who lived.” Quite fitting if you ask me.
Life seemed to be settling down for us which was so nice after such a crazy month. Surgery, new house, new job. It was a lot. Alex loves the new job, by the way! It was such a blessing for us even if it came during such a busy season of life.
In November, we stayed home the entire month! We had such a great month. Our biggest issues were eczema, cradle cap, and a baby who didn’t sleep at night. NORMAL BABY THINGS. You have no idea how awesome it is to be worried about or struggle through normal baby stuff with Evan. It’s kind of amazing actually. Blow out diapers, peeing during his bath, fussing for snuggles, the dreaded witching hour…they are really all just blessings. They are signs that our atypical baby is doing alright. They are reminders that there is hope for him and his future. Thank you, Jesus, for that.
Tomorrow will be my favorite post so far. For those of you who have followed me on Instagram or Facebook, you know what’s coming: Advent with Evan! Get ready for lots of pictures!