Another great check up in the books for Sunley Summit! This trip had 3 days of tests and check ups in Houston, and Sunley was such a trooper. We try to make the trip special. I like to say “We put the fun in Fontan,” and I'm still waiting for the Fontan Go Clinic to adopt this slogan because I think it's fantastic and I'm a genius.

We left last Sunday and spent the night with the Blankenships. It's always good to reunite with our “leftie besties,” although I may need to start referring to them as our “bivent buddies” since Oliver is now over a year post transplant! His new heart has given him a beautiful boost of energy, and it was so filling to see Oliver and Sunley together. We spent a few nights at their house, and Oliver and Sunley even had some appointments on the same day, so we got to see them at the hospital too!

Monday, we saw Sunley's primary cardiologist and did an echo and ECG. We made sure the nurses knew that SUNLEY is in charge of taking off any and all chest stickers – that is by far her least favorite thing about echos. Our echo tech was great and very patient and gentle with our girl. Everything looked fantastic from a cardiac standpoint. Sunley's left ventricular function is great, and her Fontan is flowing beautifully. Our doctor took the time to go through several images with us and explain each one. So thankful for the explanations that really help us understand her physiology. We adjusted Sunley's medication dosages for her increasing weight, but didn't see anything concerning on her echo. That is a huge answered prayer.

After seeing her cardiologist, we had to go get a blood draw. That part was not fun. We found out when we arrived that she actually needed a blood draw AND a finger prick – two pokes – and that was hard because I had told Sunley there would only be one poke. We told her she could cry, but not fight or throw a fit, and promised her a frappuccino from Starbucks if she could do it. She did. There were lots of tears and lots of begging to stop, but Sunley held her arm out and buried her head in my chest and we all got through it. She didn't try to fight me off or jerk her arm away, and that made it easier. Kind of.

After we were all done, we went back to the Blankenships and played and rested. It's amazing how much energy is sucked out of us after hospital days.

Tuesday was our first official appointment with the Fontan Go Clinic! This is the clinic that was just an idea floating around when Sunley was a baby. We heard a few doctors talking about this clinic that maybe someday could exist – a whole group consistently committed to Fontan patients, to start gathering actual data on these kids who are surviving, and hopefully someday find some patterns in the complications that always sneak up on us. And now this clinic exists, and Sunley is a patient. Thanks to all of our lemonade stand hosts and donors who made that happen. The Fontan Go Clinic is growing faster than any of us expected, and they even have a wait list now. My favorite thing was the ease of scheduling! They have a coordinator who arranged all the appointments back to back – any medical mom understands how HUGE it is to have someone coordinating specialties for us, and to have doctors across specialties communicating with each other!

Our first appointment didn't require too many tests, since Sunley still has a young Fontan. We met with a nutritionist and exercise therapist to talk about Fontan-specific lifestyle habits that she needs to have. Sunley then did a 6 minute walk test to see how her saturations did throughout. Not only did they hold up just fine, but Sunley pushed her limits big time. She was quickly out of breath, but did the whole 6 minute test. The therapist started counting down from 3 when she was done, but instead of stopping, she sprinted to the end of the hallway so that she could “finish” the non-existent race that no one asked her to finish. That girl is determined. After all of that, we went over her blood work results and her echo with her Fontan Go cardiologist, who was great. He spent a long time with us talking specifically about Sunley and about her future in the program. Her blood work showed that she is iron deficient, which is something we can easily deal with at home with some diet changes and maybe some supplements. It also showed the beginning of what is expected to be progressive issues with her liver. Her numbers were not alarming “for someone with a Fontan,” and she is thriving “for someone with a Fontan.” I want to feel only joy that she is doing so well, but that phrase feels like such a heavy asterisk that we just can't shake. It feels inauthentic to only show the grateful side of all of this.

Don't get me wrong, I am so happy with her reports. Her outcome so far has been exactly what we hoped. Her heart function is great, and her liver could be so much worse than it is. But as a mom, even seeing that slight change in her liver numbers was just really hard. I don't want to admit that this will progress. I want God to stop the progression. I want to show up to an appointment, and watch the room fill up with doctors because they are shocked that her liver numbers are fine. I don't want to worry about her future. But this is the part where surrender happens. It's hard and it's so, so sweet at the same time. I plan to learn about the liver, I plan to make some diet changes to start supporting her liver function more, but at the end of the day I can't stop her Fontan from doing what it does to her body. So every day, every time I feel that flood of frustration rising in my gut, I have an opportunity to surrender that to the Lord, Rapha, the One who heals. My surrender doesn't mean her healing will be earned through an A+ prayer life, or the right amount of fasting, or anything I can do – it means that I recognize the power of the One who holds her outcome, and I submit to His answer, praising Him through the good reports and praising Him through the pain. Regardless of His answer, we will plant our feet where He puts them and fill our children's lives with His beauty. Sweet surrender.

After our appointments Tuesday, Leslie (Oliver's mom) and I got to go out to dinner by ourselves. I think we both were exhausted and had to drag ourselves out of the house (we had both spent hours at the hospital), but it was SO wonderful to get away with her and have a full, uninterrupted conversation! We were missing our other piece, Ivy’s mom, but hopefully someday soon we can all 3 get together in one place again! Out of all of our visits, we've never had the 3 heart babies in one room, and that's a big dream of ours.

Day 3 was just a 24 hour holter monitor (the round stickers on her abdomen to monitor her heart all day). Sunley HATED it because of the stickers and tape, but at least it was something we could do outpatient. We met “Dr Meghan” for lunch with the Blankenships, and then left to get a hotel for the remainder of our stay. I think Derek and I both would have rather stayed the whole trip with our heart buddies, but Sunley was absolutely set on having hotel time with us and swimming. And to be honest, we try to say yes as much as we can on these trips. As hard and exhausting as the appointments are, it's so special to get some one on one time with any of our kiddos. We found the closest hotel with an indoor pool, and even though the water was freezing, Sunley had a blast. She was not happy that I didn't pack her floaties, because she wanted to swim without any help from us, of course. Sunley wants to do absolutely everything by herself.

We made sure to make a short trip to Hermann park and what we call “Cupcake Hill,” named by five year old Haddie in 2018. We have walked many, many miles in this place. The crunch of the trail under my feet holds a sacred place in my heart, and when I'm still, I can hear it as clearly as I can hear hospital monitors and alarms. So many prayers were said to the rhythm of that crunch under my steps, and it pulls my spirit into a thin place. It only hurts because of the joy I know is coming when that thin veil is finally lifted.

Thursday (today), we woke up totally zonked from everything. It's hard to even explain how physically and emotionally draining hospital days are. We had hoped to go to the beach – I have been absolutely yearning to see the ocean – but unfortunately it rained all day. We could have done a museum or something, but we opted for movies and reading in the hotel room for the majority of the day. No regrets. Sometimes you just need rest.

Tomorrow we fly to Reno to pick up the other kiddos who have been staying with my sister and her family all week. We'll fly home to Oklahoma after that and start a new chapter. After 4 years of working from home, Derek is headed back into an office, with a new career beginning next week. And I have a few things on my plate too: Finishing out our homeschooling year, learning all about the liver and how to support it, and I have a six year old birthday party to plan for April. It certainly won't feel like “back to normal.” Just, Onward.