Surgery tomorrow is scheduled for 7:15 am, and we should get updates each hour. I plan to text my immediate family in a group text, and then I will copy and paste that text to Facebook and Instagram (IG is @lemonadelanding). I hope to keep the blog updated as well with progress, but sometimes things get really busy at the hospital, so I’ll just do it when I can find the time!

For anyone wearing Sunley shirts tomorrow, please post a photo using the #sunleysummit so I will see it!

Remember to order T-shirts, listen to the playlist, and think about signing up for a lemonade stand! Once things calm down around here, we’ll get to start moving on getting those stands organized — we have about 25 going up as of right now.

We have certainly had more hospital time than we planned on having the week before surgery, but we’ve still managed to make some wonderful memories. The morning after we arrived, Sunley had an appointment at TCH for a holter monitor placement. She absolutely hates having stickers on her chest, and unfortunately they gave her stickers plus some really strong industrial level tape on top of the stickers to make sure they stayed on.

Taking them off was absolutely terrible, and there were lots of tears and “Why did you do that to me?!”. And then, a few hours after we dropped off the monitor, we got a call that for some reason the data didn’t record, so we had to do it all over again. This time, I went by Walgreens beforehand and got an Ace bandage to wrap around the stickers instead of taping it on. The nurse told me it would work way better than the tape anyway, and to that I ask, “THEN WHY ARE YOU USING TAPE TO BEGIN WITH?”

Anyway, this time the monitor worked and taking off the stickers was way less dramatic. Since then, Sunley has asked me several times to bring the wrap to the hospital — but of course I can’t wrap it over her incision. At least I know it was a win!

Moving her surgery up a day caused more chaos than I thought it would — we had to rush to get her prescription for her nose gel, had to start the pre-surgery body wipes immediately, and Derek’s parents had to reschedule their flight to come out earlier so that Derek could go to the pre-op day with Sunley and me. Instead of having a week-long slow paced vacation, we had at least one errand or appointment a day to the hospital, until today (Sunday). It’s been extremely hectic, but we’ve still made some wonderful family memories.

Pre-op day was long, but we knew it would be. More pokes and swabs and tears, but also the best nurses and doctors around. Sunley enjoyed her visit overall, and got lots of attention, toys, and treats. Derek and I saw (and hugged) some familiar faces, which is more comforting than they can possibly know. Child life came by, and Sunley got to pick out a scent for her mask that she’ll have when it’s time to fall asleep. The Child Life Specialist showed Sunley lots of pictures of what to expect, and Sunley kept saying, “Oh yeah, I’ve done that and I am NOT doing that again!” It was funny and a little sad — We’ll see how things go with this girl!

Tonight, I’m packing up for just a few days, and I hope to come home to the apartment soon and visit the kids, and switch out clothes, toys, etc. There are a few things I forgot like slippers, travel shampoo, etc. but nothing major — I’ve prepared as much as I can, and now it’s time to do the thing. I think I would feel more ready if this surgery was actually fixing her heart, but we’ve known the whole time that these surgeries are palliative, and that’s a hard thing to confront.

I’m not sure what to expect, except to see God do amazing things. Tonight I took a lot of photos of Sunley’s blue lips and her current scar, because I know those things may change after tomorrow. And as much as I know it’s a good thing, I feel like I will miss it — the scar as it is, and the blue lips. I’m so grateful that these surgeries exist now, but I hate that she has to do them at all.

There’s not a lot of time or space for reflection right now as I pack and make sure everything is ready for the morning — but I know that tomorrow while we wait, God will bring us inexplicable peace. He always, always does.

I hope to do a blog post soon explaining exactly what this surgery is, and what we hope it will do for Sunley in the future. But for now, these quick updates are all I can do with my current bandwidth. Thank you all for continued prayers.