Sunny Days

  This week has been weird, but for all the right reasons. Coming into the hospital and doing all our normal things, and then beginning to tie up the loose ends for discharge. She's had all her normal PT & OT workouts, visits from her favorite environmental workers, rounds, and usual daily snuggles. She made her weekly standing playdate with OT Jackie, PT Marcy, and Child Life Coordinator Kennedy who brought party hats to celebrate Sunny's last Tiny-Tots session. During which, the team paused rounds, & nurses swung by so they could come watch all the cute kiddos socializing.  It's so weird being so used to seeing all of these wonderful people everyday, it was such a harsh reality when Wednesday rolled around and some of them were saying goodbye because they aren't working again until after we leave.  It really is so odd. We've been working towards and waiting for this day for so long, and it's still so hard to say goodbye. We're feeling nervous about...

Sunny spent some quality time with her grandparents and Aunt Jadyn this weekend! Majo & Jadyn came on Thursday to complete their final required trach change(!!!!!!), and then babysit while Sunny's parents went to a work picnic and then home to get some projects done.  She had a good weekend with lots of snuggles and naps, and was much more herself on Sunday & Monday. Tuesday and Wednesday turned out to be her weekly puke/retch days, which is always hard to see her uncomfortable. She spent a lot of Tuesday night and Wednesday morning trying to fall asleep, but was kept awake by the discomfort. Thankfully, the med we gave Wednesday morning seemed to help and she slept the day away.  After that day, she was much less retchy, and has been mostly herself! We woke her up for Tiny-Tots on Thursday, and she handled that better than I would have if someone woke me up from a nap for a social gathering. She's just the best. They're been increasing feeds by 1mL every 12 hours, ...

  Sunny was moving and grooving at the end of last week - hear heart rate was normal and she was seemingly enjoying her new JG-tube situation.  Over Labor Day weekend, her heart rate remained more elevated than her norm, and she became pretty gaggy. Despite  being feed through the J-tube and leaving next to nothing in her stomach, she's still just seemed rather uncomfy and harder to settle for bed. She's still on IV nutrition as we slowly increase her feeds to her GJ-tube. Because the level of her gaggy-ness is somewhat inconsistent, it's difficult to know if it's the feeding situation or something else.  Wednesday afternoon after a little nap in my lap, Sunny's heart rate came down a bit. Not to her normal, but it was lower than it had been and I was hopeful the trend would continue. Unfortunately, it was back up the next morning, and she was still gaggy. That repeated Thursday afternoon - had a good nap, woke up with a lower heart rate and then the next morning, i...