A 24 HOUR SHIFT WE WILL NEVER FORGET

June was a hectic but memorable month for the Johnson family. Our original discharge date of June 10th was approaching, but we still didn’t have the key piece, night nurses! We actually were starting to be filled with doubt if June was still realistic for Caliyah. As much as we wanted to focus on the nursing agency, we still had to finish our training, and I was working with UW to extend my maternity leave. Of course, our discharge date was my return date for work, the irony of it all.

Training for Caliyah’s care had taken three months, and our last box to check was the final test of everything we learned. We had to do a mobile trial, which meant put Cali in her car seat, load her equipment, and push her around the hospital floor. We always had these subtle reminders that we were in the middle of a pandemic. As we pushed Caliyah around in her stroller for the first time, the nursing staff clarified that we couldn’t leave the floor, not venture outside, which pre-covid was a part of the walk. I had looked forward to taking Caliyah outside since our first week in the NICU since we were stuck in a room with the smallest window. Seeing the light shine through made me appreciate the sun and fresh air on another level. So since we couldn’t go outside, we made sure we took the slowest lap around the floor. As we wrapped up our mobile trial with a pass, I packed my items up, and Rome stayed. It was time for the BIG TEST, 24-hour room in. We had to handle all of Caliyah’s cares, medicine, feeds, bath time, trach care, everything.

Rome took the first shift; I kissed Cali and him goodbye and headed home for my first ever solo night. The house felt so empty, and I kept wondering how things were going. Rome would Facetime and text me updates. As much as we tried to stay involved in Cali’s cares, we still had some nerves about a full shift. I knew this 24-hour shift was weighing a little heavier on Rome since he had only been able to see Cali on Saturdays, and those days were filled with quality time not handling all her cares. These were the moments that reminded us how much we would go into caring for Cali at home. I was nervous about the 24-hour shift, but I am glad the hospital was so thorough on our parent training. Like anything in life, you have to go outside of your comfort zone to build some true confidence. That weekend we did that. I woke up eager to get to my loves, and Rome gave me Cali’s report, which is pretty much how she did in the last 24 hours, did she sleep, have a bowel movement, etc. Rome looked exhausted; he said he got 4 hours of sleep total since he was constantly getting up for her medicine, feeds, and the various alarms flashing and going off. I knew I had my work cut out for me. I won’t go into full detail, but you can check out my full shift here.

As you can see, it was an eventful shift, full of reading, medicine, feeds, alarms, little sleep, but the most important thing was that we both passed. I left that shift exhausted but with a new respect for the nurses and newfound confidence that I could care for Caliyah.

Over the next few days, we continued to focus on our nursing, and but not before we celebrated Rome’s first Father’s Day! We thought we would be home before Father’s Day, but as we learn over the previous five months, we had to adapt and be thankful we had each other. I wrote a special post, which was a dedication post to Rome. This day meant so much to Rome because he spent many years dreading this holiday. Read here. Rome was determined to be the best father ever, and goodness has he done that. We woke up that day and hurried to the hospital for some more family time, lots of cuddles, the cutest card the nurses created, and a father-daughter shoot that we will for sure frame. We left that day and shifted our minds back to our checklist of items we needed to complete to get our baby home. That day was so special that all we could talk about it was how amazing it would feel only to have to talk down the hall to see our baby.

Now that we finally found an agency that felt like home, our dream of being reunited was going to come soon. We hired all three nurses we interviewed and finally found the final piece, a full-time night nurse. We were happy to find our dream team, but since we switched agencies, we had to push our discharge to June 25th, it was for a good reason. The agency wanted to take the proper time to train our nurses on Cali’s Astral vent, fully get up to speed on Cali’s medical needs. As much as we wished she was home on the 10th, it was the smartest decision for our family. With our team set, it was time to get our home ready, and oh, did that take more work than we thought.