*For anyone who needs a recap, our little Sunley Summit has Hypoplastic Right Heart Syndrome (HRHS). Specifically, she has Double Inlet Left Ventricle (DILV) and Double Outlet Left Ventricle (DOLV), which is incredibly rare, along with Transposed Greater Arteries (TGA). What should have become a right ventricle is just a strip of tissue in her heart near her aortic valve. Her prognosis has many unknowns, but we are very hopeful for her future. We are getting care at Texas Children’s Hospital in Houston, TX, whose heart center is ranked number one in the nation. There is no real cure for Sunley’s condition, so the plan is to do a total of 3 heart surgeries (PA Band, Glenn/DKS, and Fontan). Our hope is that these surgeries will work well enough to avoid a heart transplant and she will lead a long, full life with only those 3 surgeries. We moved from Midland to Houston on March 7th, 2018 and Sunley was born the next month. Sunley spent her first 6 days in the NICU, went home (Houston home) for a while, and then spent 26 days in the hospital after her first surgery (PA Banding) at 6 weeks old. She had a one week hospitalization for dehydration at 4 months old, then went home for a month. At 5 months old, she was hospitalized for low saturations for 5 days, and underwent what I’ve officially termed a “doing-something cath” (atrial septostomy). On November 6th, Sunley had her second open heart surgery, which required bypass: a Bi-Directional Glenn and DKS procedure, and incredibly went home only six days after that. We had to stay in Houston until after her Glenn recovery. On January 7th, when Sunley was 8 months old and after exactly 10 months away from home, we returned to Midland with ALL 3 of our kids! We stayed there for 6 months before moving AGAIN to Edmond, Oklahoma. Sunley was hospitalized for 3 days due to a minor virus in August of 2019 at OU Children’s, but continues to receiver her “major care” and check ups in Houston at TCH.

I barely ever have time to sit down and write, so I really appreciate those of you who care enough to stay updated on this blog! It means the world to us that everyone still prays for Sunley and our family.

A few weeks ago, Sunley had her “big” check up in Houston at TCH. We left the big kids here in OK with Derek’s mom, which made the trip way easier! The big kids were so sweet about it — they really take care of their little sister, and Hadelyn steps up when things are tough. She even packed a book for Sunley, and gave Sunley her favorite stuffy (Boo the Dog).

We decided last minute to switch from a sedated echo to a non-sedated echo. It was so hard keeping her awake until her afternoon appointment (especially since it ran two hours late), but was definitely worth not having to sedate her. They got all the images they needed this time, which was reassuring. Everything is remaining stable, which is exactly what we wanted to hear, and she isn’t scheduled for another check up until April. The only new development was that her heart has grown a collateral vessel —basically, a new vein has popped off of her heart. It isn’t causing any problems right now, but we will continue to watch it. If it does end up causing issues with her saturations, we could possibly coil it off in a Cath procedure. This could end up leading to an early Fontan, but we have no reason to worry about it right now. She also had some “trivial” aortic valve regurgitation, which didn’t sound uncommon for someone who’s had a DKS. So overall, Sunley’s checkup was smooth — thank you Lord! An added bonus was that Sunley finally let Dr Ayres hold her. Such a small thing, but it made us happy to see Sunley happy at her check up. Everyone at TCH knows how much we LOVE that lady.

We also told the scheduling team that we’ve decided to get echos done on our older kids in April. (Yes, told.) Last year, I asked about doing that, and was told it really isn’t necessary. But I’ve learned now to follow my gut. Doctors recommend fetal echoes for any future pregnancies, so it’s always bothered me that they don’t recommend screenings for older siblings. I’ve met so many other parents now that were told the same, insisted on screenings, and found issues, so I’m trying not to care if anyone thinks I’m overreacting. I’ll be surprised if we find anything, and I’m actually not really worried about it at all; It just seems like a logical precaution to me. Honestly, I wish I didn’t have to be this insistent, and I don’t like looking like a worry wart, but it is what it is. We’ll get it over with, and then we won’t have to think about it again. After 2 weeks of phone calls back and forth, we got all 3 appointments scheduled in April. TCH is definitely the best place to go for anything cardiac, but OH MYLANTA the roller coaster of scheduling appointments. Sheesh. All the heart mommas say AMEN.

While we were at TCH, we ran into some familiar faces, and we also got to hand deliver Hadelyn’s ziplock baggie of Lemonade Stand money (very official). Sunley also had a very thorough evaluation with the Developmental Outcomes program that went great. No therapy for this trooper!

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About a week or two after we got home, and while Derek was out of town (of course), Sunley had a very random desaturation episode in the 60s. Again, the big kids jumped into go mode and really helped it all go smoothly. I was actually in the process of putting Sunley to bed when I noticed she looked a little dusky. That happens often, but almost never are her saturations actually low. Fortunately, OU Childrens had sent oxygen home with us after her hospitalization here, so I was able to just put her on oxygen at home until she got back to her normal high 70s, which was only a few hours. She had gotten a vaccination that morning, so my guess is that she was feeling icky from the vaccine and just needed a little boost. None of my kids have ever had more than a fever after a vaccine, but with Sunley, even just a minor issue can require some help. It really was no biggie since we didn’t have to go to the hospital, and she weaned off of oxygen after just a few hours. I am SO thankful we avoided the hospital, especially since Derek was out of town! It’s crazy to me that Sunley stayed off of oxygen when she had RSV (thank you Synagis), but then these two MINOR illnesses required it. Just a reminder to always follow my gut when it comes to checking her oxygen levels. She currently is fighting another pretty yucky cold (along with her older brother), but her saturations are staying in the high 70s, and even up to 82, so she’s doing fine without any oxygen.

I feel like we have settled well into heart family life, whatever that is. I don’t feel like we really worry about Sunley’s future…It’s more like we just have a heightened awareness at all times. But still peace. Always peace. I would change everything for her if I could, and I will always feel some level of grief that she is not healthy. BUT God has given us joy in trials, and I definitely wouldn’t want to ever change that. The light always always overcomes the darkness :)