*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.
(Photo was taken at home before surgery)
Every day, the cardiology team rounds on each patient. They state their name, age, congenital heart condition, procedures that have been done, meds, etc. Sunley’s rounds usually start with “This is Sunley Nichols, and she’s pretty confusing.” While I’m all for my kids not taking the beaten path, I’m pretty ready for Sunley’s body to start acting as it should. Yesterday morning, she had lost another ounce even though we are feeding every 3 hours around the clock with fortified breast milk at 24kcal/oz (She doesn’t tolerate above 24 very well). After observing one of her feeds, the cardiology team and I decided that she needs an NG tube for now (a feeding tube inserted through the nose). We can still continue bottle feeds, but now whatever is left in the bottle at the end of a feeding goes in the tube. So she is still using her sucking skills, still having to work for her food, but when she is just DONE we quit and put the rest in ourselves. Our hope is that this will allow her to get some weight gain, and hopefully as she gains weight she will have more energy to eat via bottle. The cardiologists are hoping that the NG tube will be brief. But I’m preparing myself for a long haul with it because nothing is going as planned.
Because she has no cardiac drugs going, and really isn’t at a huge risk right now with her heart, they moved us from the cardiac floor to the neurology floor, because they have more open beds. I’m totally fine with this, because the cardiac ICU floors are always completely full, so us moving means that they have more room for more surgeries. With that said, transitioning to a new staff, slightly different equipment, and just an overall new routine is ROUGH. The nurses are not cardiac nurses, and I found myself having to RUN THE SHOW and repeat a whole lot. I’m ok with it, but it does make me just a little irritated. I’m so happy that my kid is the one who doesn’t require cardiac nurses but I’m tired of her getting the nurses that haven’t been around long or, now, don’t have experience with heart patients. I’ve definitely had to advocate for her more on this floor and that’s pretty exhausting. After we left, there was some big to-do about it and one cardiologist actually came down and gave me the option to go back to floor 15. So, I really can’t complain because I did have the option to go back. But I told him that as long as she will get the attention she needs then I can deal with having to be a little more on top of things. And we’ve seen our doctors 3 times today already, so I know she’s not being “forgotten” down on 10. If you feel like I should’ve done differently, kindly keep that opinion to yourself please ;) We’re exhausted but doing just fine.
Right now, our only goal is to get some weight on her so she can be big and strong enough for her Glenn procedure. Her lungs are still just as “wet” as they were right after surgery, but I’m told that it is not atypical for lungs to take a few months to heal, since we waited so long for her first surgery (we waited 6 weeks for the PA Banding Surgery). It was definitely a good decision to wait — she was bigger, older, stronger, and I know that certain parts of her recovery have gone so smoothly because of how long we waited. But, like every cardiac care decision, there are pros and cons with every option, and the con is that her lungs have been overworking for a very long time and now they are tired and have fluid and need time to heal. Her respirations look great, which has the team a little confused. The characteristics of her eating habits SHOULD mean that she has fast respirations, and that’s just not the case. So, today we did an Echo and tomorrow we will have an Xray. She is on a couple of diuretics, plus potassium and salt, plus a medication to help retain salt, and also on 2 antacid meds for reflux. They will also be running some blood tests. We are all just trying to figure out why this girl isn’t hungry enough to put some weight on! She is currently about 7 lbs 7 oz. So she’s gained only 6 ounces in 2 months of life.
I’m really not sure what to pray for. Do I pray that they don’t find anything wrong in the echo, or should I just pray that they find what’s keeping her so tiny?I’m not sure what’s gonna happen, but I’m very grateful for our team of doctors here. Oh, and by the way, if you read my earlier blog posts then you know that we almost had Dr. Mery as our surgeon, but then ended up with Dr. Heinle. I was emotional over the switch (I wanted Heinle originally but then just really got along with Dr Mery, and had a hard time with all the transition), just because the switching can be really stressful. Well yesterday Dr Mery announced that he is leaving to go to Austin, where Dr. Fraser went. So, there’s yet another answered prayer that didn’t feel like answered prayer at the time. If we’d had Mery, I’d be a WRECK right now knowing that we needed a new surgeon for her next surgeries. So I’m trusting that I’ll look back and see some answered prayers happening this week that don’t feel like blessings right now. Keep the prayers coming!
On a happier note, Sunley smiles all the time now, and has started reaching for toys and even trying to roll over! I mean, I can’t LET her roll over because of sternal precautions, but I’m still super proud :) We can't wait to have her HOME again! Here's a video from the night before her surgery. I love the innocent way Hadelyn calmed her own nerves while caring for Sunley <3 My babies are all pretty amazing. Ruger's amazing too, but he rarely participates once he sees me taking a video.