*For anyone who needs a recap, our little Sunley Summit has Hypoplastic Right Heart Syndrome (HRHS). Specifically, she has Double Inlet Left Ventricle (DILV) with an extremely small (almost non-existent) right ventricle and large VSD. Both the Aorta and the Pulmonary Artery are well developed and going into the left ventricle (as far as we can tell right now). 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 on June 11, 2018 she had a PA Banding surgery, and will later receive a Glenn, and Fontan (a total of 3 heart surgeries). 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. Sunley spent her first 6 days in the NICU, went home for a while, and then spent 26 days in the hospital after her first surgery at 6 weeks old.
Sunley has been home for 23 days now — three days shy of how long she was in the hospital recovering from her PA Banding surgery. Since July 7th, she has gained another 12 ounces, which put her at 8 pounds 13.6 ounces last Wednesday, July 25th. Unfortunately, her weigh in today showed that she’s lost 3.6 ounces in just 5 days. So frustrating!
At her cardiology appointment on the 25th (the one where she weighed 8lbs 13oz), Dr Ayres was pleased with her progress. She had been gaining steadily and her saturations are still holding in the 72-76 range. She did say that her lungs are unchanged (not worse, which is good, but still not better) and that she is still getting overcirculation through her PA. This means that she hasn’t fully grown into or out of her band. To me, this means that Dr. Heinle (surgeon) made it JUST right, but my understanding of the whole process is limited. This MIGHT mean that we could wait a bit longer for her surgery, which is one of my questions for Sunley’s next check up. I asked Dr. Ayres if we could start letting her sleep longer than 3 hours at night, and she suggested only doing that a couple of times a week. She also increased her Lasix and Enalipril to .4ml twice a day (instead of .3 and .33).
Today, Sunley got her 2 month vaccinations (1 month late because she was only 2 weeks post op and in the hospital when they were due). Her weigh in showed the weight loss, which could be attributed to the Lasix increase moreso than the sleeping 6 hours, but we decided to quit the 6 hour stretch for now. No biggie, but less sleeping again. Her liver is also starting to enlarge again. Another question for the cardiologist at the next check up, since I don’t fully understand what that means. I’m still learning lots, and feel like I’m always playing catch up!
The big kiddos leave in 10 days, and that has me pretty wrecked. We’ve had a few people ask us why were are sending them home without us. It was NOT an easy decision, and keeps me up a lot at night, but we both feel that this is the best option in a handful of less-than-ideal options. I realized pretty early on in this process that there is no way to protect any of my kids from being a little traumatized by all of this. It’s traumatic, thus there will be at least a small element of trauma. I think trying to act like everything is fine, or trying to keep things from being traumatic, would actually make it more traumatic in the long-run. What I CAN do is teach them how Christians react to trauma. How many “traumas” are too many in one paragraph?
We had a few options for the end of summer:
- (This is what we have decided to do) Send them back to Midland with my parents. Haddie Mae would start Kindergarten at MCS, where she went to preK last year. She would see friends and teachers she already knows (her teacher will hopefully be Brandi Little, a good family friend from church who HM knows very well), be in a place she’s familiar with, go to church at her home congregation, etc. Ruger could attend the parents day out twice a week that he was enrolled in last year. Same story — familiar environment for him. But that would mean very little time with all of us together. Derek should be able to travel out there fairly often, and the kids could come to Houston frequently. The day to day, however, would be without us.
- Keep the kids in Houston and send Hadelyn to a great public school, which our apartment is zoned too! But —err!— that public school is FULL. They won’t accept her unless she can’t speak English. The other public schools she could go to are not the ones I’d feel comfortable with. We could try and find a private school here that we could afford (fat chance), but even if she were in school here, I wouldn’t be able to have the level of attention or involvement that I feel is necessary. And my mom will be able to fill that role for me in Midland at MCS. Also, if the kids were here, then we would need someone staying with us again through all of the hospital time (and probably some before the hospital time).
- Hire a tutor or homeschool here in Houston. It’s a bit hard for me to explain to people who aren’t in our shoes, but this was just not possible. The exhaustion and complete dedication that having a child in the hospital takes just makes it plain impossible for me to homeschool. It was all I could do to remember to eat while Sunley was admitted last time. And to have a tutor whom I’d barely know alone with my kids every day is just not something I’m ok with, no matter how highly recommended they come. Besides all of that, and even though it’s “just kindergarten,” that is not the social experience I want for Hadelyn’s schooling. I was AMAZED last year at the difference just a few weeks of preK had on her. Staying home with a tutor just wouldn’t be the same. I even thought about asking a friend who homeschools her kids if I could hire her, but she’s over an hour away, and there’s no way we could handle to back-and-forth of that daily. And besides all of THAT, the hospital time with Sunley was VERY rough on the kids. Constant goodbyes not knowing when we were getting back home, about a hundred temper tantrums (sometimes from the kids, too), and many many dinners apart makes for a very unstable environment. I’m not sure I can peel my kids off of me one more time without losing it. It was hard on all of us. Also would need someone staying with us and taking the kids to/from while we had hospital stuff.
The only option that seemed doable, and the only option that didn’t require constant help here from family is the Midland option. While it will be extremely difficult on everyone involved, I do think it’s the most stable option. I have prayed and prayed and prayed for God to give me a new idea or different option, but He hasn’t. Maybe He’s planning something different, but for now I’m giving Him control of yet another piece of my life. I keep THINKING that I already gave Him control over these things, and yet I keep having to give Him more and more. I don’t get to be the main caretaker of my two older kids now — WHAT IS THAT?! I have seen my kids starting to wear some unrecognizable behavior as a result of all the instability this year and that hurts. There are tantrums where there used to be giggling and tears where there used to be silly faces, and to be just plain honest, sometimes it all seems pretty hopeless. But we have a lot of good moments too (most moments are great), and I KNOW that this piece of our lives is just a blip in the big picture. We WILL eventually get back to routines and consistency, and I’m looking forward to that.
I have lost a lot this year. But I have also gained peace, time with my husband, a better prayer life, a closer relationship with God, and a really awesome daughter. And I know God will continue to bless me, as I let go of more and more every day. I know He has more for all of us, but it’s hard to give someone something when their hands are full. I remember seeing an illustration years ago of this — a child clutching onto all of his toys, his arms full, and God holding a GIANT teddy bear behind his back and saying, “Trust me. Just put them down.” Not sure if that makes sense to you, but it sure has helped me at 2 am when I’m staring at the ceiling fan wondering what’s happening with my life and my babies.
On top of those struggles, I am constantly trying to educate myself on Sunley’s heart condition. Hypoplastic Right Heart Syndrome is so rare that there is relatively very little literature available for us in comparison with other single ventricle defects. Because of this, I’m having a hard time fully grasping how her physiology works. I’m sure this will get easier with time, but even well seasoned cardiologists and CVICU attendings become completely turned around when discussing her anatomy.
Another question we get asked from time to time is why we are waiting to do the second surgery (Glenn Procedure). I’m not super comfortable discussing all of the risks of her next surgery — I do think Sunley deserves at least a tad bit of privacy with her condition, but in a nutshell I will say this: The older she is, the more she weighs, the more milestones she is able to hit before surgery GREATLY improve her chances of survival and a smooth recovery, according to her doctors. So we wait :) And we will wait as long as her heart, liver, and lungs want to wait.
I did forget to mention in the last blog post that she will have a Cath before her surgery to check her pressures in different parts of her heart and lungs. Again, I don’t completely understand how this works, other than they do this to prepare for the surgery by taking data from different measurements in the heart. This is not nearly as invasive as a surgery, but there is a short recovery period to be expected. I know that sometimes, rarely, the Cath will show that your lungs/PA aren’t in great shape, and that can disqualify you from the Glenn. We are hoping that won’t happen, and we have no reason to think it will. No doctor has even mentioned that to us yet, though I am feeling a tad concerned that her lungs have still not improved. No reason to worry about it, but I guess it is kind of there in the back of my mind.
Enough of the heavy stuff. Sunley is the CUTEST. She is done with all of her sternal precautions! She hates tummy time, is still so close to rolling back-to-tummy, and is the smiliest baby I’ve ever seen. Nearly all of her hair has fallen out, so she has those newborn/old man hair patches and it’s pretty funny, especially in pictures. She coos all the time, and loves her big sibs. Ruger has gotten to be so good with her (Ya know, except for that time he stepped on her head…and the time he tried to pick her up by her arm..). He just SHOWERS her with kisses and pats her and it’s so so sweet. Hadelyn LOVES holding her, especially at church. And seeing them all getting along together pretty much makes me melt Alex Mac style. INTO A PUDDLE.