I didn’t update yesterday because we were all just way too exhausted to do anything but sleep by the end of the day, so I have a lot of news to report! But before I do, we have a major answered prayer that I wasn’t expecting: Siblings can visit again!! So today Hadelyn and Ruger were able to see Sunley. It was much needed, and I’m hoping it helped everyone.

Yesterday was our first full day post-op. Even though Sunley was alert and taking on Monday after surgery, Tuesday she really seemed to totally shut down, and even throughout today we couldn’t get any words out of here — sometimes not even a nod to a yes or no question. It’s been really hard to see her like that. The only time she really spoke much Tuesday or most of today was when we made her get up or when the nurse stripped (emptied) her chest tubes, and of course then it was screaming and not really talking. Lots of begging to stop and go home and “No I’m not doing it!” or “I think I should have never come here!” There are no words for how absolutely devastating it is to see your spunky 3 year old like that.

Sunley got one of her three chest tubes out today, as well as her central line (the one in her neck). They were both very painful and required being held down, but the central line was especially bad. It was taped all over her hair, and was attached by a few very, very tight stitches, which made it super difficult for the nurse to detach. She did great though and was so sweet and patient with Sunley.

All of those moments will be etched into me forever, but I pray that’s not the case for Sunley.

We have had really good nurses in the ICU, and our nurse Abby actually got Sunley to have a short conversation with her this afternoon. It was absolutely beautiful to see Sunley come out again a little bit. Although we had great nursing care, I was a bit frustrated with a lack of communication with and between some of the other team members on the unit, so I’m really happy that just a couple hours ago, we got to move to the step floor! They are currently having a miscommunication about Sunley’s fluid restriction, and I’m pretty much done with the miscommunications, so I told our new nurse that if anyone wants to limit her fluid, they need to come talk to me in person and get it straightened out.

Fluid restriction is common with Fontan recovery, and we did have some on day one, but it has been lifted since then. Sunley’s Fontan pressures number (I think it was the CVP) was consistently super low, so the team decided to lift all fluid restrictions for a while. I’m sure we will still end up on restriction, but for now the priority is keeping her hydrated and beginning to fill that belly with food!

Back to yesterday, Sunley was able to get up and walk around half the unit! I mean, we definitely forced her, and she screamed the whole time, but she did it. And it has definitely helped getting fluid off. Today she walked again, and then sat on the couch with me for about 45 minutes. It was really, really hard and I hate that she has to do it, but I’m very proud of her.

I realized as we were leaving the CICU today that if things go well, that may have been her last admission there. And I have been super emotional about it ever since. We have been inpatient at TCH 6 or 7 times, and have had about 12 rooms here. I don’t think I can really explain all of the conflicting emotions of that, and I think if this wasn’t a lifelong condition I might feel differently. I feel super guilty for having any feelings of sadness leaving the CICU, because I am obviously super happy that Sunley is doing well, but there are huge chunks of me in this building and on that floor — pieces that I can feel only when I’m here. And so many weighty memories, good and bad. The person I was before I was a heart mom died a long time ago — it feels like an old parallel universe, and I can’t even imagine being her again. TCH is the symbol of that process for me. So leaving the unit and so many people that have been such a huge part of our journey, knowing we may not ever be back — it’s just hard, even though it’s objectively and obviously a very good thing for Sunley and for all of us.

We have had SO many visits from familiar faces, and again I am floored at the amount of people who remember Sunley — even people who only had one or two days with her. Those visits to our room have been better than any therapy I could ever have. There are spaces in my heart (probably in my full-grown right ventricle) saved especially for those souls. We can’t see the angels that fight for us behind the veil, but the people who have chosen to fight this journey with us are the closest thing to angels I will see this side of heaven.

Besides the team here, we have so many joining the fight in different ways — people sending us gift cards, grandparents caring for our big kids during the day, bikers (you all know about them!), and so many encouraging messages. I am really missing our “posse” of heart parents from 2018, before private rooms in the new tower, before COVID restrictions, etc. but this is a totally different chapter with a toddler, so it’s not really comparable. And again, those visits from our old teams make all the loneliness of hospital life so much less!

We’ve seen lots of yellow Sunley t-shirts around the hospital this week, which is just a bright and happy thing to see. They will be on sale until May 31st through Write With Light Project, and they benefit the Fontan Go Clinic here at TCH, so if you are looking for a way to help, this is it!

I know all of the photos of Sunley show her looking really sad…well, because she is. We have seen one smile since surgery. But I really feel like we’ll be turning a corner soon and seeing more and more glimpses of the real Sunley!