5 months, 1 week, 6 days since diagnosis
57 days away from home
We're out. And we're together as a family. It's hours away from home but anywhere can feel like home when you're together.
It wasn't an entirely easy day. It was a long process getting everything set for discharge. Valentine hasn't slept well in days so she was particularly difficult and oppositional. Jon is stressed and tired and hates to be away from home. Riker is still fussy. But it was still a good day.
Riker's now getting a sodium supplement added to her feeds 3 times a day and that should keep her levels stable. We'll go in on Sunday morning for a blood draw to make sure but they're not expecting any further problems at this point.
Even though the discharge went smoothly, we didn't all get back to the Ronald McDonald House until after 5. At that point, Riker was late for 4pm meds and late for a 5pm feed. This meant we did a lot of rushing about trying to get everyone and everything settled. And we did it. Our family was a team. It was amazing not being a one man show for just one day.
By 9:30, both the girls were asleep and all Riker's meds were drawn for the next day. Now Jon and I are just sitting together, listening to the sound of our babies breathing soundly. The room is quiet but not too quiet. Everything is perfect.
We're wiped but there are more meds to be given at 11 - so that's when I'll go to bed. Then back up at 5 to do it all over again :)