The first few days after Karlie came home were a little hectic as we tried to get everything organized and find a routine that worked for us. We were learning how to best care for Karlie and getting used to having a nurse with us for 10 hours a day. It was difficult for me at first because I had already missed out on so much with Karlie and I didn’t want to pass her care onto another person. I know the nurses just wanted to help but I genuinely wanted to do most things on my own. From the beginning, I wanted to be as hands-on with Karlie as I could. I was more than willing to take on the responsibility of caring for a medically complex baby. I think our nurses were used to being more hands-on with their patients than I wanted them to be with Karlie so that took some getting used to. It was very hard for me to let them do even simple things like diaper changes at first because I would get mom guilt if I wasn’t the one caring for Karlie. Sterling had to snap me out of it and say, “They’re only trying to help sweetheart. You have to let them help.”

We started to learn what worked and what didn’t work for us throughout the day and developed a solid routine. We were still not comfortable letting Karlie sleep alone in her room so we had been sleeping on our mattress next to her crib. It worked for the time being but it was pretty annoying to move our mattress in and out of her room every day. After Karlie’s first ER visit we decided to move her crib downstairs and turn the living room into Karlie’s/our room. It was very difficult to keep her room cool upstairs, even with a portable AC. This was also part of the reason for the water build-up that led to disaster. We spent a day moving all of Karlie’s equipment, supplies, and other belongings into the living room. We also moved our bed into the living room, just a few feet away from Karlie’s crib. This way, if anything were to happen overnight we could get to her immediately. It felt a bit strange at first, but it was honestly so much easier to care for Karlie with everything on one floor. We no longer had to bring her up and down the stairs, which wasn’t the easiest thing to do. Thankfully her ventilator attaches to a stand with wheels, so we could just roll the ventilator alongside her rather than have to carry it around. It still took two people to move her around, one person would hold her and the other would push the ventilator. Once Karlie got bigger and I got more confident with moving her, I was able to move her around all on my own. To go from needing 3-4 people to move her in the NICU to moving her on my own felt like a huge accomplishment! Everything that felt so difficult and complicated in the beginning slowly became easier and just a part of our every day life.