*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.
One of my heart mom besties, Leslie (the one with the other half necklace), took some lifestyle photos for us before the kids left back in August. God knew I needed a photographer friend here in the hospital :) SO SO happy with the photos that perfectly captured our time in Houston. (Photos below by Leslie Laveta Photography)
It’s so hard to believe that we’ve been in Houston for six and a half months now. I started to say that I haven’t been “home” in 6 months, but honestly, by now Houston is home. I have been here just long enough to really miss it when we leave, although I hope the excitement of bringing Sunley to Midland will overshadow the hard parts. Our house will be rented through at least March (and we may just keep it as a rental property and get a new house), so we plan to move into my parents’ empty rental home when we get back to Midland (our furniture and boxes are already stored there). It happens to be next door to their home, and shares a backyard, so I anticipate lots of “running to G and Pa’s house for an Oreo” from the kiddos. No one ever plans on living next door to their parents, but I actually think it will be pretty fun, and an easy transition for the kids :)
We discuss on the daily the possibility of needing to move to be closer to a decent pediatric hospital, but we are far from being able to make that decision with clear minds. Right now the plan is to get back to Midland after the Glenn and get some sort of new normal going before we make anymore life-altering decisions. In Midland we are near family, we love the kids’ school, Derek loves his job, and I can’t even begin to think about leaving our congregation there. All that to say for the people who have asked or have been wondering — Yes, of course we are concerned about the hospital issues, but we are taking that decision slowly and with a lot of input from various nurses and doctors here that are familiar with the Midland hospital. I’m definitely not trying to bash the hospital there (and actually, out of the 3 hospitals in which I’ve had babies, Midland was by far the most comfortable labor and delivery facility), but I think everyone in Midland would agree that they have a lot of work to do when it comes to pediatric emergency care. Really, all we need is a hospital who can get Sunley stable in an emergency to get her transferred to TCH. But I am getting ahead of myself. We have more learning to do before any decisions there.
The best news lately is that Sunley got over her cold without any hospital intervention!! Two more trips to the pediatrician (just to double check some breathing), but she did so good! Aaaaaaaand…we are at TEN POUNDS people! To be exact, 10 pounds and 5.6 ounces. She also got her 4 month vaccines (just a few weeks late due to the cold) and they didn’t seem to bother her one bit…ya know, except for the actual poking part. Derek and I will be getting flu shots this week (HOW is it already time for that), and we are asking everyone who will be around Sunley to make sure you get a flu shot AND a whooping cough(pertussis) vaccination. You can get them at Walgreens, HEB, etc. Pertussis is often spread by older people who haven’t gotten a booster. For all our non-vaxxer friends: We love you, we can still be friends, but please don’t hold Sunley if you and/or your kids haven’t gone the vaccine route. I hate saying that as much as you hate hearing it, TRUST ME. We visit the hospital often for appointments or just to visit our friends who are inpatient, and the last time we were there, a heart kid sneezed several times over a couple minutes, and I thought to myself, “I hope her nurses are on top of that.” Then I immediately thought about how differently now I hear sneezes. That little girl’s sneeze would never have concerned me last year, but knowing how quickly a cold could get out of hand for a heart kid makes it all different now.
In other news, I did end up going up to the hospital to make Sunley’s follow up appointment, and it’s scheduled for next Wednesday, the 26th. Dr. Ayres told us that she expects to put Sunley on the schedule for her Cath and her surgery at this appointment, so we are super anxious/excited/nervous for next week. Sunley will have another echo and X-ray also. She looks perfectly fine, and it’s so hard to believe that she has such a serious heart condition under all of her smiles. I do think that her breathing has been just a tad on the fast side, so we’ll see what her cardiologist thinks. I check her sats once or twice a week now (ever since her ER visit, since they asked me what her sats at home were even though APPARENTLY I didn’t need to be checking them…I digress.) and they have been steady in the 70s, and sometimes low 80s. I’m not sure what to expect at the appointment, and I’m not even sure what I want to happen. A part of me wants to hear that she needs surgery in 2 weeks, and another part of me wants to continue putting it off and putting it off. The sooner she has it, the sooner our family can be back together, but also DUH I’m not looking forward to another and much more invasive open heart surgery. This will be her first time on bypass, and that thought pretty much turns my brain to mush.
I miss my bigs a lot… A LOT. I have spent 4 out of the last 42 days with them and I don’t like those stats. Derek has been able to visit Midland quite a bit and so that’s wonderful. And of course we Duo a whole bunch. It helps that they both seem to be doing really well with the stability and routine with my parents. My sister, Hallie, took on the main caretaker role in Midland for 2 weeks recently while my mom was out of town and I know the kids loved having her there! This weekend, my parents are taking them to OKC to visit the other grandparents and more family up there. So they definitely aren’t short on people loving on them, which makes my heart happy :)
Still, though, I miss them. We will have a lot of snuggles to make up for when we get home!
Yesterday, we got to tour the new Legacy Tower at TCH. The big move for the CVICU and step-down is happening next week so everyone’s excited about that! It’s such a nice facility, and everyone will have a private, sleep-in room. That’s great, but I have to be honest — I will really miss being able to socialize with the nurses and other families. I’m just not one of those people who likes to be alone very often ever, and so much of CVICU is just watching your sedated baby sleep, so I’ll really miss the open concept pods. I also learned so much listening to rounds in the open pods, which was really helpful. BUT I’m obviously so grateful for the option to stay there overnight (this will be especially helpful when she has her Fontan as a toddler) and everyone has really worked so hard to make families feel comfortable, so I can’t complain. I’ll just have to bribe people to talk to me with bagel deliveries in the family lounge ;) I visited some friends who are still inpatient this week, and got to see this wall on 18, where all the nurses have painted personalized hearts on the wall. What a sweet way to leave your mark! <3
Sunley also got to FINALLY meet one of her heart buddies, Emmett, who recently graduated to the step-down floor! He’s a “leftie” (this is my endearing term for HLHSers now), and has had quite the roller coaster, but is doing so great! We’ve so enjoyed getting to know his sweet parents, and I’m happy he’s doing good, but we’ll miss them when he goes home!! We always run into some familiar faces at the hospital, and we love getting to see some of our faves when we’re there.
Sunley still hasn’t gotten to meet her other leftie bestie, Oliver, but that day’s coming. (Oliver is HLHS and they had their first surgeries on the same day) Oliver’s mom took the family photos above. As I’ve mentioned before, we always joke that they “complete each other.” It seems like any time one of them was having an issue, the other was doing the exact opposite (brady, tachy, etc). Well today, Sunley had a mishap with a nail clipper. In fact, we may have to take her to Urgent care tomorrow if it doesn’t heal quickly. Guess who else had the same injury?! Yep, her leftie bestie. Now they are bonded by blood! Sorry, was I not supposed to laugh? My bad.