One Month HOME

*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!

hypoplastic right heart syndrome

I can’t believe we have been home for a month now! This time last year, we were in the middle of a very long diagnosis process, unsure of whether or not we should even pursue any treatment at all, and now we are home with ALL THREE of our beautiful babies. We spent January going back and forth to Houston a bit, but officially moved OUT of the Houston apartment on January 27th and made the 9 hour trek home. That last trip to Houston included an echo, Xray, and cardiology appointment which all went fantastic! Sunley’s saturations have a wide range, anywhere from 73-88, but usually land around 77. Her pulmonary valve has what Dr. Ayres called “trivial leakage,” but it isn’t anything to worry about right now. She said that it isn’t uncommon after a DKS. Sunley is gaining weight perfectly (almost 15 pounds now), which is so wonderful after such a long struggle in that area. Her appointment went so well, in fact, that she doesn’t need another check up until May! She is almost 15 pounds now, which is actually just about what her big brother (heart healthy) weighed at this age.

While we were in Houston this last time, our buddy Oliver CAME HOUSTON-HOME!! Having the two of them playing on the floor together is something we waited for for a long time, and it was so incredible for us. When we left before, I was very sad to realize that we wouldn’t be in Houston for his homecoming, but God allowed it. And it was such a wonderful “bonus” to be there! We have spent so many hours praying for these sweet babies, and it was just so precious to have them both together. As soon as beautiful Ivy goes home, I think we will feel like chapter one is finally complete <3 All 3 babies, and 4 bigs together is something I picture daily. We love our heart families big time. I don’t know how this year would have looked without these people and our really warped sense of humor. While our journeys have each been very different, the hurts are the same, the joys are the same, and the faith required in this CHD world is the same. I’ll stop rambling about my love for these people. Just so thankful. And thankful for all the prayers on our friends’ behalf as well <3

On the last night in Houston, I realized that I still hadn’t taken a rooftop photo of TCH that I had been eyeing all year. This was the sunset God sent me for the photo <3 Just another little way of Him telling me, “I see you.”

(If you are reading this on a phone, you’ll have to zoom in to see TCH!)

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Another exciting update is that Sunley Summit is CRAWLING! She is getting faster every day, and it’s so amazing to see her discovering her world in this new way. I find myself daily just staring at her, amazed that we didn’t end up with significant delays after all of her hospital time and procedures. I think a huge part of this is because we were able to go home and wait for her PA Banding Surgery. I regret not allowing the doctors to give her an NG tube that week (long story), but at the same time, if we had done an NG tube, we would not have gone home before that first surgery. Always pros and cons.

It finally feels real to not be in the hospital. New Years day marked 50 days that Sunley had been out of the hospital, and that was the longest stretch for her ever, until now. I’m officially not counting how many days it’s been out of the hospital, because we have no plans to go back for a very long time! We were so encouraged to overcome RSV at home, and Sunley is currently battling another bad cold, but handling it so well. Thank you all so much for your prayers. To say that we feel loved and supported is an understatement. 

February is CHD Awareness month, and I plan to participate in the coming years, but pretty much ignored it this year, as I am still trying to figure out life without Sunley’s CHD being the only thing of which I think or speak (definitely rearranged that sentence so that it wouldn’t end with a preposition. *Mic Drop*). Derek announced an update with one of our heart buddies, Ivy, at church on Sunday morning, and Hadelyn leaned over and said “What about me? I’m sick, too.” Without being too overly analytical, I’m sure that my two heart healthy kids have felt a little left out, what with their TWO ventricles and all, so it’s something I’m trying to balance. With everything still so fresh, I think it’s ok for us to ignore the CHD awareness for this year and just focus on our little family unit’s process of moving forward. That said, next February, you may want to brace yourselves for ALL the heart baby Facebook posts.

Everyone I’ve seen so far since being home has been so understanding and supportive. No one expects me to be 100% ok and happy all the time, and that’s been very encouraging for me. It’s a complicated thing having an experience like we had and then being shot right back into day to day life — with Derek leaving for work, me (not working now) making lunches, going to the grocery store, and cleaning ALL the live long day. We saw some pretty incredible things in Houston, and we also saw some pretty unforgettably horrible things, and to see for yourself the vast range of things that happen inside the walls of a children’s hospital is an incredible privilege and extremely humbling. It also makes doing the mundane, daily things of life kind of difficult at times. Of course I am overjoyed that I brought home my daughter. The drive home WITH a carseat in the back is the only way I wanted to come home, and we did just that. I am so, SO grateful that we are home and our lives are moving forward. But, I am also not done with the CHD journey. We still have the Fontan ahead of us, and even after that we will always be looking for improvements for Sunley’s health.

I have learned that actually you can feel exactly OPPOSITE emotions at the same time. I can feel so happy to have all 3 of my kids with me, and also feel lonely. I can feel so happy to be discharged from the hospital, and also miss getting to see and talk to other heart parents. I can feel relieved that Sunley has her left ventricle (the typically stronger of the two ventricles), and also nervous because her anatomy is so rare and the outcomes are more unknown. I can feel like Derek and I did a good job taking care of her, and also feel debilitatingly guilty for leaving my two bigs. I know I’m not the only one who has experienced such complicated emotions like this. Any sort of process involving grief probably feels similar.

I think we really isolate ourselves when we don’t allow others to grieve with us. 

I have heard one phrase OVER and over since we got the diagnosis a year ago: “I know this is nothing compared to what you’re going through, but…”

That phrase is such a stupid lie that we have ALL said, and one that I think we all find ourselves believing over and over again. After being diagnosed a year ago, I very quickly learned that I had a choice in my reaction every time someone offered advice. Of course, sometimes people are going to say the “wrong” thing. But I can tell you, the only time I felt hurt was when people said nothing. I can only speak for myself, but I think it is much better to say the wrong thing than to say nothing at all. I could list out several things to never say to a heart parent, but I think all that does is scare people away from saying anything at all, thus further isolating all of us with our own feelings. I think God equipped us all to empathize with each other, regardless of the specific situations we are in. No matter what we are going through, there is always someone who has it worse, and always someone who has it easier than us. It is a lie straight from the devil to think that no one can relate to what I’m going through. It’s a lie that has kept me so many times in the past from reaching out to friends who are hurting BIG. I learned quickly that I can learn from the experiences of other Christians, whether sick-baby related or not. Right after we were diagnosed, a friend started a sentence with “This is nothing compared to your situation, but when my dog died…” and I’ll admit that I started to close off. Reflecting on that conversation later, though, I realized that her actual advice was exactly what I needed to hear. She spoke about focusing her days on Scripture, filling her time with prayer, and finding a new normal without her companion. What a gift God has given us in each other, and we so often push it away. It is so easy when your whole world is changed to become extremely isolated in your grief, and not want to listen to what anyone has to say. It would be so easy to slip into a very bitter place, full of worry and guilt and fear, and that is just exactly what God doesn’t want for me. My daughter has an incurable heart defect. Do you know how angry that can make a person? I have nowhere for that anger to go, no one to blame, and no one who can change it. I think that’s why it’s tempting to ignore the stories and advice from other people. Because if I pretend like my problem is bigger than their problem, then at least I’m winning at something, right? At least it gives me a valid reason to be angry. It’s super evident, though, that actually my problem is not the worst problem in the world, and actually even if your biggest tragedy in life is that your dog died, we still have a lot in common, and you have wisdom to offer me from a very difficult experience of your own. Grief is grief, anger is anger, and all I will accomplish by winning the problem game is more loneliness. (And by the way, spending 10 months in and out of a hospital showed me quickly that things could be way worse, no matter where I was on the problem scale.) ALL of that rambling to say that, for me, there is no problem comparison, and the only wrong thing to say to grieving friends is nothing at all.

*Cue the insecurity of whether or not that came off the way I wanted it to. Ended with a preposition.

hypoplastic right heart syndrome