Sunley had a great two days of check ups in Houston last week! Before I go into details, if you haven’t signed up to host a lemonade stand for our nonprofit, click here to do so. Sign-ups close on July 7th! You can pick any date in August that works for you to have a lemonade stand. After you sign up, we will send out “boxes of sunshine” (full of goodies and marketing supplies), and list your stand location and date on our website. At the end of August, we will pool all the money raised from the lemonade stands and donate the money to the Fontan Go Program at Texas Children’s, which will directly benefit Sunley’s care as well as other children with these incredibly rare heart defects.

We try hard to make these trips to Houston fun for Sunley and for the siblings left at home. I left our three heart-healthy kiddos with a super fun babysitter and a freezer full of yummy (junk) food, and we booked a hotel in Houston that has a pool, which was Sunley’s only request.

We got to the hospital around 10:30 am Tuesday morning, and we were hoping to run into our buddy, Oliver, who also had appointments that day, but unfortunately the timing never worked out with their down time between doctor visits. Sunley was very nervous about the “big stickers” that are applied during the echo. She absolutely hates taking them off, so we always make sure she gets to pull them off on her own, on her own timeline. Often, she will leave them on for a day or two. This meant that we had to request to have the echo after all of the other events, like EKG and X-ray. I think this request slowed down her appointment just a bit, but our nurse was super understanding, and I didn’t even have to fully explain myself — So thankful for moments like that.

This was the first time that Derek or I didn’t assist Sunley during her Xray, which was bittersweet. She’s getting older. And she is very used to all of this. Bittersweet.

After the Xray was the echo, with the big stickers, and Sunley was so brave. We again explained that she gets to decide when the stickers come off, and the doctor agreed, much to Sunley’s relief. At one point, he forgot and reached over to reposition one of the stickers, and before I could say anything Sunley grabbed his hand firmly and said, “NO.” I was happy to see her stick up for herself like that without panicking. Someday, she may be doing this without me (they’ll likely have to drag me out of the room), and the more I get to know her enormous personality, the more confident I feel in her ability to handle it. God has equipped her with the spirit she needs to navigate this world, and I can already see that in her five year old self.

The echo was a long one, which always makes me nervous, but she did great and I’m grateful that the wait between the testing and the results is usually just a matter of minutes to hours and not days or weeks.

While we waited for our beloved cardiologist to go over results with us, Sunley insisted on playing doctor. I was the patient, and she was the cardiologist, of course. She told me I have “hytertastic” right heart syndrome, and told me I only have half of a heart. When I asked if she has half a heart too, she said, “Yes and I wish they would just put the other part back!”

I died a few times, which I told her meant she needed to reevaluate her protocol, but she always brought me back to life for more check ups. It was fascinating, empowering, and a little sad to see her be on the flip side of things as a pretend doctor. I sometimes wonder how much she really understands about her diagnosis, but I suspect it’s more than I realize.

It’s always good to see Dr. Ayres. She doesn’t sugarcoat anything, which means when she has positive news, I can absolutely believe it. I think she said three times throughout our conversation that this was a very good check up.

First of all, Sunley’s Fontan and DKS are showing perfect, unobstructed flow, which is why we are still seeing excellent oxygen saturations of 97-98 (Remember, Sunley stayed at 72-78 for the first four years of her life!). Her Fontan MIGHT have fenestrated itself (I didn’t even know that was a thing!), but if it did, it’s not causing any problems. That still freaks me out a little, because I didn’t even know that was a possibility, but apparently it happens sometimes, AND we aren’t sure if it even truly has or not. Sunley’s tricuspid valve is showing trivial regurgitation, with mild regurgitation on her mitral an aortic valves (which is the same as last check up - nothing to worry about). At her last check up, her heart was a bit enlarged, but this time it had returned to normal size, which is excellent. As always, we discussed her increasing leg pain, and her subtle decrease in energy, but there are no answers for that. Maybe the Fontan Go program will learn something to help with that someday. Insert call to action to sign up for a lemonade stand HERE. In fact, we plan to enroll Sunley in the program at her next check up!

Everything about that upper paragraph means this: Sunley had a great check up, showing that the Fontan is doing exactly what we hoped it would. She won’t have another check up now for 9 months, which will be the longest she’s ever gone in between appointments!

*You might remember that in 2021, she was cleared for a year, so let me explain what happened there: Our cardiologist was on medical leave, and so we were last-minute assigned to someone else. He was awful — arrogant, totally didn’t listen to me or Derek — And it turns out he made a bad call too, because after clearing us for a year, Sunley was in the hospital just a couple months later and so began our summer of “big sick.” He’s on a list of only 2 doctors that I have ever filed away as “you will not touch my daughter again.” But I digress. All that to say, 9 months will feel like a very long time!

No matter what news we get, Derek and I have always said that any hospital day is an exhausting day. After we left the cardiology clinic, we went to floor 3, as always, to eat lunch and people watch, and we both realized how much we actually didn’t feel exhausted. There was no unexpected news, no looming new date for a procedure, no changes to medications. We really are in a new phase of this heart journey, and it’s both exciting and unnerving. Exciting because we get to look forward to so much fullness with Sunley. Unnerving because honestly, it’s scary to let myself believe that things will continue to go well. I hate to say that, because I know it might sound like a lack of faith. Maybe it is. Lord, help my unbelief. I think He understands — He knows what it’s like to watch a child suffer.

After enough people watching, fish tank visiting, and escalator riding, Sunley was ready to go swim! These were core memories for me. It turns out that our hotel pool was just a block away from her 23rd floor window from last year. I remember perching on the window sill in her room and looking at this white and glass building each night (it reflected every sunset and would light up different colors in the dark). And now I’m just on the other side of that building swimming with my 5 year old who can’t stop squealing with delight because she’s having the time of her life just being five. I can’t even see that window from this view now.

Mom of the year over here forgot sunscreen, so we didn’t stay in the pool as long as we wanted, but filled the time with some Sponge Bob and snacks in the hotel room, and then it was finally time to GO SEE OLIVER!!!

I think this time I won’t attempt to even put into words what getting to visit Brian, Leslie, Elliot, and Oliver meant to me. Let’s just say this: I love them a lot. I pray for them a lot. Seeing them together filled my soul to the brim, and then some.

I hated saying goodbye at the end of the night, but I may return sometime in the fall, kidless, to jail break Leslie and get some bestie time in. Everyone fell asleep quickly at the hotel for our early next morning appointments with the Developmental Outcomes Program.

We were back at TCH by 8:30 the next morning, and Sunley’s appointment lasted until about 1 pm, so on this day, yes, we were exhausted by the end! There are parts of Sunley’s diagnosis and her journey that we keep to ourselves — If I ever have a little gut feeling about not sharing something online, I listen to that. But we are very pleased to now report that Sunley has no mental delays or neurodivergence after 4 years of low oxygen saturations, two of her three surgeries using bypass, multiple intubations and procedures. God protected her brain and development through all of that. I would have boldly accepted her with delays or other challenges, but I’m so grateful for this answered prayer! She currently has a hard time with hard consonant sounds that come from the back of the throat, like K (kangaroo) or G (goat) (she says them with a T sound), but with a little speech therapy, we can take care of that. I would bet that this speech issue could be from the multiple intubations as a baby and toddler. Of all the hundreds of complications Sunley could have had, I will take some speech issues. That is just fine with me.

Reflecting on all of the answered prayers we have had for Sunley brings me to my knees. It’s exciting, humbling, unnerving, and an indescribable spiritual experience. Because of the high likelihood of grief or suffering in our lives, God has transformed our mundane moments into magic. Swimming isn’t just swimming — it’s a total baptism of joy. Hiking is moving a mountain. Running is flying. A messy house is a resurrection of life. Laundry is….well, no, laundry is just laundry. Ugh. I’m still human.

On our way out of Houston, we stopped for coffee with “Dr. Maytan,” (Meghan), Sunley’s first surgical NP who is really a lot more than that to us. We got to visit with her kiddos and her new baby who shares a name with me! Actually, I think I heard something about Elizabeth being named after a relative, but I’m ignoring that and claiming her as my namesake. Props to this new mom of 3 for bringing a 6 week old out in unbelievable heat and still looking beautiful — anyone who has experienced 3 kids under 5 understands what a huge accomplishment leaving the house is!

God has brought Sunley through so much, and He has also sent Derek and me all of the souls we needed for encouragement. I suspect we’ve been constantly surrounded by angels in holy hospital halls for years now. I wish I could see what I already feel.

Please continue to pray for more check ups like this. Pray for Oliver, and for Ivy (another heart buddy who will soon have her Fontan). Pray that I can be present in today and now feel the looming weight of what may or may not come. And maybe…sign up for a lemonade stand.