Sunley had a cardiology check-up today in Houston, and it went so well! She really missed her siblings today, and kept asking for Sissy and Brudder, but overall she was so brave and funny with her doctors. We love seeing our heart family at TCH, even for these super short visits. Everyone who has ever talked to me about our experience knows how special Dr. Ayres is to us, and we are always so happy to see her. One of the nurses there today gave Sunley a handmade pillow, and it absolutely made Sunley’s day. She kept it with her for the whole trip. What a thoughtful, sweet thing to do. Sunley loved watching the echo of her heart this time, and it reminded me how she used to watch her numbers on the monitor as a baby. She told me before he started, “I think my heart will be yellow.” And behold, while measuring some fluid, a flash of yellow popped up on the screen along with the typical red and blue “stuff,” and Sunley whispered, “I knew it.” Yes, Sunley. Of course your heart is full of bright, yellow sunshine. We already knew that, echo or not. It was fun watching her be more engaged in the whole process. Seeing her start to ask questions about what is happening already gives me confidence that someday she will be able to handle this all on her own (Unless she still wants her mommy, which is fine by me).

Surgery is still on for April 19th with Dr. Heinle (J-Dawg…still trying to make that catch on), and the doctors will get together when the date approaches to decide whether or not she needs another cath before surgery. I think it is probably unlikely that a cath will be in the works, but we’ll do what we have to do. I didn’t ask much about pushing her surgery out further. I think that could have been an option, but it just feels like the right time. Sunley is starting to get winded more easily, especially when going up stairs — But let me tell you, that girl does NOT give up easily. “No Momma, I can do it” is an extremely frequent phrase in this house, and I’d be lying if I told you it didn’t make me really proud. I give Sunley a lot of praise when she listens to her body and slows down or asks for help, but it’s rare that she does this. She is truly a “Firecracker” (this road name was appropriately given by her motorcycle buddies — They even sent her a patch for her motorcycle jacket). All that to say, her body is showing us that it’s ready for this, and we don’t want to wait until she’s really struggling again, like she was in June. This will be her third open heart surgery in 3 years, which doesn’t include her two interventional cath procedures. Girl is a trooper.

Sunley was really nervous about going to the hospital this time, and her siblings had a REALLY hard time letting us go. Momma had a hard time, too. While I’m (obviously) insanely grateful for how things turned out after Sunley’s cath in August, that 3-month period of watching her body be so weak was very, very hard. I knew that we would get through it, but it was very heavy and very sad. It’s frustrating, but I feel so guilty any time I admit to having trauma from all of this, because I know so many people that have been through situations that are so much WORSE. I know of someone whose 2 year old had their 7th open heart surgery this month, and I wouldn’t have to look far to find others who have been through even more. Nonetheless, the gift of being a single ventricle heart mom comes with a unique heaviness. The same could be said for being a heart sibling…and of course for being a heart warrior. I was surprised at my reaction to this upcoming appointment. I wasn’t expecting any sort of bad news, and yet I just felt so scrambled in the week leading up to it. I felt like I could barely function — Couldn’t keep my to-do lists straight, and could barely focus in the evenings. Any time I thought about this appointment, my chest felt tight and I would start to feel nauseous. Maybe it’s just the finality of completing the single ventricle plan with the Fontan that feels so major.

Whatever the case, it’s been a hard week, and I’m glad that this appointment is behind us. We have 3 months from today to get ready for what could be Sunley’s last open heart surgery (unless they someday come up with a BETTER option than the Fontan!), and I have a very long list of things I’d like to have done beforehand. Cue my Enneagram 7 self putting too much on my plate. Who knows what will get done and what will haunt me in my dreams as a half-done task. What an adventure this will be!

I plan to post more in February, with a lot more details about what this surgery is, why we decided to do it now instead of later, and why it’s not a great solution forever. We also have some really exciting things happening between now and the Fontan — T-shirts, motorcycle friends, and some things regarding our fundraiser through Write With Light Project, which is in the process of becoming an official non-profit. I can’t wait to see where all of this takes us! Thank you all for the prayers. They continue to bring our family so much unending strength.

Go, Sunley, Go.