*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. 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, and underwent what I’ve officially termed a “doing-something cath” (atrial septostomy).
The heart cath took about 4 hours. We waited mostly in our room on 17 until they called us upstairs for her post-cath consult. We waited up there until Dr. Qureshi (our favorite interventional cardiologist, or “cath person,” as I call them) came to talk to us, and the Brett Kavanaugh hearing was on the TV in the waiting room, so that was SUPER relaxing ;) The heart cath went as perfectly as we had hoped. Dr. Qureshi was able to perform the atrial septostomy using a balloon catheter and she ended up having saturations in the 80s! In addition, her pressures all looked great for the upcoming Glenn. Great news all around! She was also extubated before we even got back to the room. Just so wonderful. She’s a little hoarse from the intubation/TEE but that’s to be expected, along with a bit of a wet cough, so we are hoping that clears up soon.
She is doing so well, in fact, that they decided to discharge us instead of going to step up!! I think she might have been the first or one of the first discharges from Legacy, but there was no fanfare so maybe not ;) Before we left, we went over to Oliver’s room to say goodbye. They’ve never gotten to meet, so their mommies were pretty happy. They’ll grow up and remember none of this, but these are such important days for the rest of us. I left my coffee creamer up there in the fridge, but somehow I’ve survived ;) Floor 17 can consider it a selfless donation. We have been home now for about 12 hours, and boy is she loving it! She’s been rolling around on the floor for most of those hours. There’s nothing like being wire-free.
Sometimes at the hospital, you’ll see families who are expecting a heart baby, holding the red heart center folder, taking a tour — sometimes you’ll exchange knowing glances, and I wish I could tell them it’s not as scary once you’re really doing it. I remember our tour through the CVICU and mostly what I remember is seeing REALLY tired parents, which was pretty intimidating. But once it’s YOUR baby and YOU’RE doing it, it’s just more doable. Not easier, not less exhausting or less horrible than I imagined, just doable.
Before we left, we got Sunley officially on the schedule for her Glenn with Dr. Heinle. We are hoping for surgery on November 6th! This is a very penciled-in date. Surgery schedules change ALL the time. Also, it is very plausible that Sunley’s septostomy opening will start closing, and we’ll be going back to the hospital. Pretty much, any heart issues that send us to the hospital between now and November would most likely result in a Glenn. We are waiting because we are hoping she will gain some more weight. From here on out, we won’t know what our next day looks like, but of course we are hoping to stick to the November 6th plan. We also CAN NOT let her get a cold. A runny nose or fever could put off her surgery for 4 weeks, and we don’t want to be in a situation where her heart needs a Glenn, but a runny nose doesn’t allow that to happen. It’s a little more scary knowing that Sunley’s surgery will be during flu season. So we are buckling down again, and treating her like a newborn. We’ve also decided it would be best if they kids don’t come visit, since they both have allergies, runny noses, and are exposed most days to school germies. I can’t really explain how painful that decision is. I already haven’t seen them in a month. November 6th is five and a half weeks away, and Sunley will have at least 6 weeks of recovery after that. That’s a long time to not hug on my big babies. We discussed bringing them here to a hotel just so I could spend a day with them, and we may end up doing that, but we aren’t sure yet. So pray that they DON’T feel like their mom doesn’t want to see them. Derek will still make several trips to Midland, and I’m glad he can do that. Just ready to be all together again. A friend told me when we first got to Houston that God will “fill in the gaps” where I can’t be for my kids, and that is so true and so comforting. I’ve held on to that phrase throughout this process.
I do plan on uploading a video sometime explaining her planned surgical procedures, but I’ve been waiting until after our consult with Dr. Heinle to make sure that I don’t explain anything incorrectly.