Day 6 post op, April 24th:

This was Sunley’s last day as a 3 year old! She had a good day. We stopped potassium (thank GOODNESS), and CAME OFF OF OXYGEN! Her saturations are still in the low 89-91 range, but everyone is very confident that once we take out the chest tubes, those saturations will come up quite a bit.

Her right chest tube is still putting out quite a bit, but it decreased again today. We expect a big dip tomorrow because of her diuretics regimen she is on. We are leaving the left chest tube in for now, even though it’s done, so that hopefully we can pull both. Who knows, maybe even by Tuesday? Sunley went on 3 walks today, including a tricycle ride, and all of that should be good for getting rid of those chest tubes! She’s barely starting to talk to just a couple select nurses, but is much less reserved with Derek and me than she was just a few days ago.

We have planned a birthday party for her at the hospital tomorrow with siblings and two grandparents, so that should be fun! I also got to meet another heart mom for coffee today. Her son was just discharged from a few doors down after his Fontan, and it sounds like they are having very similar recoveries. He had surgery a week before Sunley.

Day 7 post op, April 25th:

Sunley had a great birthday. She got SO many gifts and visits, and I know she felt so special! She even got exactly the birthday cake she wanted, thanks to Madilyn Crouch, who lives nearby. She had balloons, streamers, and all the typical birthday things.

Our birthday party was certainly different than we planned, despite getting permission beforehand. There has understandably been a lot of miscommunication about visitor restrictions, since it’s constantly changing. When my parents and the kids arrived, even though we had cleared everything days prior, and over and over again leading up to today, the charge nurses wouldn’t let them in. I came out to the lobby to see why, and they told me that we could only have one person in at a time, and that the others would have to wait their turn, and couldn’t even stay in the lobby on our floor.

I felt like my reply was appropriately firm but still respectful:

“We cleared this beforehand so exactly this situation wouldn’t happen. And we will absolutely follow whatever rules y’all have in place. But just to be clear, if this is because of germ precaution, instead of everyone coming into one room and keeping everything contained, you would like us to go to the busiest floor to wait our turn, and use the elevator multiple times, which would put the germs everywhere and expose more people?”

They stared at me and said absolutely nothing. And for the first time in 4 years of multiple stressful days in the hospital, I finally cried in front of the staff. I apologized for crying, and told them I know they are trying to do the right thing, but I also said, “You HAVE to get everyone on the same page. Because they were fine to visit in ICU and literally no one knows what to expect day to day. Our kids want to be together, and we have no problem with the rules, but you have to tell us beforehand and stop just throwing it at us.”

I went into the lobby to break the news, and Ruger started crying, which made me angrier. Everyone else went to floor 3, the busiest floor, and I took Ruger into the room for birthday party #1. A few minutes later, the nurses came in and told me they decided Hadelyn could come in the same time as Ruger, but the adults would have to switch out. Fine, that’s what we did.

We had multiple shuffling, and trips to the elevator, and during one of those switches, the nurse came in while only my mom was with Sunley and stripped Sunley’s chest tubes. So I walked in as Sunley was crying and my mom was comforting her — not ok. It was done, so I didn’t say anything. We had a great day. Sunley felt very special and had a great birthday. And I LOVE TCH. But sometimes, yall. Sometimes.

We had visitors make a paper snowflake and sign it, and we hung them on the wall. Those are keepsakes for sure! We also have had nurses and doctors sign one of her hospital gowns, so we’re definitely keeping these things forever.

At rounds this morning, the team wasn’t really happy with her output in her right chest tube. It just hasn’t decreased as much as they’d like it to. Her BUN was up also, and so we can’t add diuretics right now. They’re hoping that the elevated BUN is from all of the Toradol we used, so that is gone now (and she seems to be doing ok pain-wise without it). We will pull the left chest tube tomorrow (Sunley calls them her noodles, and she does NOT want anyone pulling them) and revisit the diuretics plan to get her tubes to drain more. There was talk about going on a very strict no-fat (or was it low-fat) diet, but we aren’t there yet.

When we told Sunley about the chest tube tomorrow, she seemed really sad. After a couple hours she said, “Mom, I don’t want them to pull out my heart!” Poor girl! No wonder she is so scared!

Sunley did fantastic with PT today, and was even a bit talkative with the (female) therapists. She is hoping to visit the playroom in the morning with the Child Life team. Sunley wore her biker jacket and new sunglasses on her ride today, and told the PT that she is faster than her brother, Ruger.

She is doing really well. The older kids are being cared for, even though we deeply miss them. We visit them most nights to tuck them in (we switch off who goes home), and then come back to sleep at the hospital. We are INCREDIBLY blessed to have enough support that Derek and I can do this, together.

I met two other heart moms today, and I really can’t express how important those relationships are to me. I need those women in my life. One mom I met tonight is the mother of the sweet one who moved our surgery date. You could literally see the strength in her eyes, and I already feel so blessed to have met her. Heart moms are some of the fiercest people I know, and I feel stronger every time I am with them.

We also met a couple other patients on the floor, and we are all buddies now! One other little girl just had her Fontan on the 20th. They are from overseas, and came to TCH specifically for this surgery. I love that Sunley will know other kids with similar hearts (although we have yet to meet one with Sunley’s specific anatomy!).

This time of year brings back so many memories of my pregnancy with her, and our introduction to heart parent life. The photos below are of the Houston sunset, exactly four years apart on her birthday. Regardless of everything, there is evening and there is morning.

Happy birthday, Sunley Summit. I would choose you and your spunky biker heart over and over and over again.