BIRTH MONTH 🎉

 

Sunny's week was a little weird, but pretty good. 

Sunday, we had planned to head to church and then a cute little makers market afterwards. We did a reeeeeally good job at working as a family to get ready for both. We had to get Sunny in her "to-go mode", pack meds and milk, and get all of outside dressed (& caffeinated;). It went very smoothly! We weren't rushed, and even left early!? But right as we were pulling into the church parking lot, Sunny started crying. While the trach makes it impossible to hear any noise when she cries, there's still a difference in her cries. This one wasn't her normal could-be-fixed-with-a-suction-or-diaper-change cry, it was different. It was harder, her heart rate was going up and her blood oxygen saturation was still within her goal range, but it was going down. We tried a few things in attempts to fix whatever was bothering her, but nothing was cutting it. 

We loaded everything (oxygen tank, ambu bag, pulse-ox, suction, trach emergency bag, ventilator, diapers, wipes, and Sunny) back into the car, and went home. We're still not sure what the issue was, but we were able to make her comfy, calm her down and get her to sleep. Even with all of her complexities, it's easy to forget that it's hard to plan things with her. Her good days are good, and her bad days are unpredictable. 

The rest of the week followed suit - she'd have good days or good afternoons, but then we had some really rough nights or mornings. She was off and on nauseous this week, but it was very inconsistent & it was hard to know if it was her normal "retch day" or if it was something else. The first bad day of her being nauseous, nurse Erik - out of a little PTSD;) - asked if we thought she had a UTI. I told him I didn't think so, and we talked about the similarities and differences in how she was acting compared to the UTI she just had. 

There's lots of tricky things with medically complex kids, but one of that they're still kids. When she's fussy, we immediately have to rule out trach/suction things, check the diaper situation. If neither of those are it, it's easy to let your mind run in all the worse case scenario directions. But we were reminded by all our friends at the hospital - she is still just a baby. Sometimes they're just fussy. 

I also have to keep reminding myself that now is not forever - both good and bad. During her good days/weeks, it's so easy to quickly accept that as what will be. And with her bad days, when it feels like that night will never end and Erik will never come to take over in the morning so that Chris can go to work, and I can get a little sleep after night shift. It's hard to be ready for the day to be.... Whenever is is, and be able roll with the punches, enjoy the good days, while cherishing all this time we get with her. 

Prayer requests:

- Some nurses that take great care of Sunny. We love Erik, but his role is different & he's just here until we can get replacements. But it's rough weeks like this that remind me how important it is to have someone capable to be caring for Sunny, and allow us some of rest. 

- General health for Sunny & get parents! She's turning 1 in a few weeks, and we'd LOVE to be home for that(& thanksgiving🙏)!

Thank you for your prayers, and for STILL checking in on Sunny. It's almost been a whole year of so many people loving Sunny from afar. 

Love, 

Chris, Alyssa & Sunny

An elephant never forgets...

....so who knows if she'll forgive us. 

But she was just too cute in her Halloween costume gifted to us during our last stay in the hospital by Kennedy, the Child Life Coordinator.

Lots of sleeps to be had this week

Fell asleep in my arms after out Sunday debacle.

Probably the last time for this onesie 💪

🥐

Again, lots of sleeps. Hopefully she starts regularly feeling more herself this weekend/week!