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.
Friday, October 31, 2008
Wednesday, October 29, 2008
Day 141
Friends,
It has been a very long few weeks. We have waited patiently, sometimes with great anticipation for the day that R would be released from the hospital into our care. Several times over the past few weeks, we were prepared to take him home, only to show up and have our hopes dashed because something was wrong or not ready.
As of today, R is doing very well. He has good strength, he is tolerating his feeds very well and all of his lab results look great. The doctors confirmed today that we can take him home tomorrow!
As our family has prepared for R to come home, we realize that our work is only beginning. He is so worth it. So many of you have lifted him and our family up in prayer over the past several months. We cannot thank you enough for that! It has been a long road and we thank you for walking it with us.
A few requests for the next 24 hours and beyond...
- That he continues to do well with his recovery.
- That R would not pull out his nj tube. When he is out of restraints, he can pull it out in a matter of seconds. We will need to watch him closely.
- That the transition for all of us from hospital to home would go as smoothly as possible.
His Grace is sufficient for us. Thank you for your prayers.
It has been a very long few weeks. We have waited patiently, sometimes with great anticipation for the day that R would be released from the hospital into our care. Several times over the past few weeks, we were prepared to take him home, only to show up and have our hopes dashed because something was wrong or not ready.
As of today, R is doing very well. He has good strength, he is tolerating his feeds very well and all of his lab results look great. The doctors confirmed today that we can take him home tomorrow!
As our family has prepared for R to come home, we realize that our work is only beginning. He is so worth it. So many of you have lifted him and our family up in prayer over the past several months. We cannot thank you enough for that! It has been a long road and we thank you for walking it with us.
A few requests for the next 24 hours and beyond...
- That he continues to do well with his recovery.
- That R would not pull out his nj tube. When he is out of restraints, he can pull it out in a matter of seconds. We will need to watch him closely.
- That the transition for all of us from hospital to home would go as smoothly as possible.
His Grace is sufficient for us. Thank you for your prayers.
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