*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.
My new favorite thing is watching Sunley figure out what these bad boys are for:
Sunley has had a really good 24 hours. She is eating at least 80% of her bottles orally, and sometimes finishing them completely, so we decided this morning to take out her feeding tube! I’m hoping this will help with her reflux pain. Her weight today is 4.240 kg (9 lbs 5 oz). The doctors expect us to go back home in the next 2 days if she continues to eat and gain well. And right now, the plan is to go home on only Zantac, and not resume the Enalipril or the diuretics. I specifically asked today if Dr. Ayres has been consulted, and my answer was “the primary cardiologists always know what’s going on.” Not sure that was a real answer, so we will see what she thinks about this no-med business next time we see her. I haven’t decided if I will insist upon an X-ray before we leave or not. Dr. Schlingmann clearly knows what he’s doing, and he told me today that there is no reason for an X-ray when Sunley clinically looks ok. It’s very difficult to know when to insist on things and when to let it go. If I can’t shake the gut feeling, I will insist on an X-ray, or at least follow up soon afterwards outpatient. Even if Dr. Schlingmann is wrong (which I doubt), we could tweak meds as outpatient. Either way, things right now are going good. Her sats are often in the low to mid 80s. This is great, but I do wonder if that’s due to retaining fluid?? Everything with heart babies is just a series of educated guesses.
I’m glad that right now, there doesn’t seem to be been some big underlying issue, and I’m especially glad that her sats quickly came out of the 60s. Apparently, there was more talk about keeping her here until her Glenn than I realized. I’m glad that isn’t the plan, at least not right now. The Glenn seems so far away and so overwhelming, but I know when it gets here we will be ready. Everything so far has seemed impossible until it happens, then it just IS, and we deal with it.
I got to have lunch today with 4 other heart mamas who are all inpatient here with me. We had such a wonderful time catching up, and I’m shocked that we all were free at the same time! I will really miss this part of our hospital days. There is nothing like the bonds we have made with each other <3 While I was at lunch, Sunley and Daddy went to a Luau on our floor :)
And below the photos is another video of Sunley and her hands because AAAAAW