Day 238 - First Day Home

Wednesday, August 25, 2021

Early Morning:  After getting James settled for the night, Mom posted up on a mattress on the floor next to James’ crib in our living room and Dad slept upstairs.  They agreed that Mom will take the first few nights and Dad will take the first few mornings until things get routined. 

James decided to continue his late night/early morning routine of fighting sleep, which means Mom didn’t get to sleep much at all. She gave him his Clonidine and other meds at 2am and unfortunately the home vent setup creates a ton of water in the circuit which flowed all the way up to James’ trach and nearly water-boarded him.  Mom was able to navigate through this and eventually get James to sleep around 4:30am. 

Dad came downstairs to give James his meds at 5:45am to find Mom just getting to bed.  Since James was fighting sleep, Dad held James for a little while to begin the day.  With Mom’s coaching, we found a position that worked really well for James to fall asleep (laying in the breastfeeding position across Dad’s lap and face to Dad’s chest). Mom was able to sleep for a little less than 2 hours while Dad held James. 

Afternoon:  Mom and Dad took shifts taking care of James so the other can eat and go to the chiropractor to get a MUCH needed adjustment. Juju stepped in a few times for her puppet show and a poopy diaper change. It’s been a great help to have Aunt Robin and Juju helping Mom and Dad care for James. They ordered a massive Instacart delivery and spent a lot of the day prepping our first family dinner.  Lindsay invited James’ primary nurse from the NICU over to see him and have a meal with the family. 

 

Evening:  Mom and Dad did Trach care for the first time at home using Dad’s physical therapy table. It’s a perfect high and comfort level and worked out well.  We also wiped James down to get him ready for bed, while Juju did one last puppet show for Baby James. We gave him his evening cocktail, put on his music, tucked him in and he fell asleep around 9:30p so we can enjoy a family meal with our guest for the NICU.  It was a nice night and an overall successful first day home for Baby James.  This is going to be a big learning experience for everyone, but Mom and Dad have been preparing for this day for a while. 

P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️

P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭