*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. 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!
Over the past few weeks, we have really settled into our new normal. Our normal is similar to our old normal, but with a constant elephant in the room. It consists of all the normal three-kid things (School days, laundry, cleaning, more cleaning) while always side-eyeing the heart kid, trying to treat her the same as the older two while also keeping an eye out for red flags — labored breathing, cyanosis, runny nose or fever, a drop in energy or feeding. We’ve had a couple events — I guess, what you would call a “scare,” except they don’t really scare us anymore; We know the drill! I only check her saturations if she seems especially cyanotic, so it’s not like we have to constantly monitor her, which is a blessing. Sunley had one desat into the 60s, which usually means a hospital trip. She bounced up quickly on her own, though, and I checked her sats later in the evening and they were back up to mid-70s. She also had another cold, and we were worried about her breathing, but again, it ended up being nothing. Two weeks ago, she almost completely stopped eating solids, which was super strange. I was close to pulling the trigger and making a pediatrician appointment, but then she popped a tooth and began eating again, so I think it was all just due to teething. Each time, however, we’ve had issues with the medical care in Midland. We love our pediatrician and her NP here, but we have some issues with the overall availability of emergency and/or cardiac care here. In a nutshell, we’ve decided that we need to move. Not an easy decision, but once again, God has given our hearts an obvious answer. This decision has been made for quite some time, but we kept it close and only told the necessary people, up until Derek figured out his job situation, which was finally worked out recently.
We obviously considered moving to Houston (Everyone knows I LOOOOVE Houston), but eventually made the decision that we don’t want to raise our kids somewhere where we have no family around. Long story short, WE HAVE DECIDED TO MOVE TO EDMOND,OKLAHOMA! Derek and I both have lots of family there, and we will be closely located to OU Children’s Hospital should we ever have a cardiac emergency, or an illness which requires hospital support. Sunley will still have her major appointments and surgeries at Texas Children’s in Houston, but if she gets RSV again, the flu, or something that requires hospitalization, we may be able to stay home instead of flying to Houston for every tiny thing. I’ll feel a lot better knowing we have that option should we need it. Oh, how I will miss that Houston and Midland weather, though! And no, I’m not being sarcastic. I love HEAT and I hate cold. So pray for me from about October through April. If I remember correctly from my college days at OU, those are the unbearably yucky months of windchills and random wet weather.
Talk about MIXED feelings. We are so excited to be moving back to Oklahoma after 8 years, but we are pretty much devastated to be leaving Midland. My parents (who kept our big kids for 4 months) and all of my grandparents live here, and our church family here is beyond amazing. We will deeply miss everyone, and I will especially miss living next door to my parents and watching my kids run over to G’s house at a moment’s notice (We’ve been living here since our house is still rented out, which we did to help pay for our Houston adventure). If it weren’t for this crazy last year, we never would have lived next door, and it’s been just so fun. We are planning to move sometime this summer, so Hadelyn can start school in Edmond in August. We’ve already been up to look at houses once, and we’ll be looking again this coming weekend.
Right now, the plan is for Derek to keep his job and work out a working-from-home/commuting to Midland schedule. His boss, Matt, was super understanding and supportive, and everyone is hopeful that it will work out. It will mean a lot of travel away from home (which is what brought us to Midland in the first place), so it’s a pretty big lifestyle change on top of the move itself. Derek and I have had many talks about that part of it all. The traveling will require a lot of energy and commitment from the both of us, as well as a huge dose of grace. It will require me to not become resentful toward the stay at home mom duties, and him to be “on” when he gets home from a long trip. Piece of cake, right? As sad as I am to leave Midland (understatement), I’m starting to feel excited about finally planting some roots for our family of five. Our kids have all been through so many changes, and I am SO sick of it. I love the adventures of moving, fresh starts, and home renovations, but I hate the stress it puts on little kids, so I’m hoping this is the last move for a long, long time.
In other news, OUR HEART BUDDIES WENT HOME!!! Oliver is home-home in Arkansas, and Ivy is Houston-home, with plans to go home-home to Florida soon. Thank you all for the prayers for our friends. We both feel so much relief in knowing the joy they are all feeling. God has come through in beautiful ways for all of us! We are all planning a little reunion, hopefully sometime this fall. Sunley has met Ivy and Oliver separately, but we’ve never had ALL seven of our kids together, and it will be so sweet when it happens.
Also, I can’t believe I’m saying this…Sunley Summit will be ONE this month! HOW IS THAT POSSIBLE?! I can’t even begin to relay all of the complicated emotions that it brings up, but I will just say this: Birthdays have changed in this house. They mean so many different things to us now, and we are so grateful for every day that our family is whole and together. SO GRATEFUL. I try my best to focus on the gratefulness, and not the things we have missed, or will miss, due to our life falling on a grenade. God is constantly sending me opportunities to dwell on gratefulness, and for that I am…GRATEFUL. You get the message.