Day 143 - Home At Last

As the date for R's discharge was getting closer, there was the stark realization that our work truly was only beginning. And last night, begin it did...

We learned early in the day on Thursday that we would be taking him home. We were excited. He looked good and we felt ready. There seemed to be a flurry of activity and people around us during the day, all indicating how much support we would have in taking him home. It was a great feeling knowing that all these people were behind us. We felt up to the task and R was ready to go.

We got home Thursday night and began preparing all of his medicines and putting away supplies. He fell asleep about 8 pm Thursday night and we finished getting the house in order. Jen slept in a bed upstairs in R's bedroom. As it was a family affair, the girls slept on the floor in R's bedroom (as a show of solidarity I suppose) and Nathan slept in bed next to me. Most certainly, I got the short end of the stick.

I had a baby monitor next to my ear. Do you know that feeling the first night you take a baby home? With every noise, my eyes popped open. Was that him? Did he pull his tube out? Is he leaking stool all over the crib? I set my alarm at 3:55 am to get up and put more formula in his feeds. I saw a note from Jen that she filled it at 3:30 am. I went to bed thinking I may get a full night's sleep on the first night, but not so fast. Jen came down at 4 am and asked me to relieve her. He had been up for 2 hours. I jumped to the occasion, ready to go. 4 am turned to 4:30, then to 5 am, 5:30 am, 6 am. Are you kidding me? He seemed to be tiring. Perhaps it was the 5 am addition of whatever the awful show was on the Disney Channel. At 6 am, I put him to bed. He fussed, but I was determined. I put his pacifier in and I laid down. For the next 30 minutes, I would get about 2 minutes of rest for every 1 minute of putting his pacifier back in and holding it in place until I felt it safe to lay down. The only words in my conscious were "Jesus please" and "Mercy". Any dads out there? Can I get an Amen?

He finally fell asleep at 6:45 am. Great I thought. He woke up at 7:00 am. Ugh. He seemed content in the crib, so I left him there. Jen eventually came in at 7:20 am and we began to get ready for the day as a home health nurse was arriving at 8 am.

Today has been a great day. The kids have been playing with him and talking to him all day. He follows them with his eyes wherever they go. It will be an adjustment for all of us, but especially him. Remember, he's been in a hospital bed all of his life. Sitting on the deck, going for a walk, feeling the breeze hit your face, riding in a car - all new experiences for him. We're excited to have him finally home. I think we'll go for a walk now.

Thanks for taking this journey with us. I can't wait to show him to you.