*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.
I really wish I could do a better job of keeping this updated, but the thing is, there can be several days in a row where we are just experimenting and seeing what her body does, so I have a hard time trying to explain that.
Since the last update, so many things have changed. First of all, Sunley is eating great! Feeding tube came out today!! Her echo didn’t show anything to explain her lack of weight gain. It did show some possible future issues with her mitral valve. There is a “ridge” near it (could cause some blockage), but also maybe a hole that could resolve the possible blockage issue. It isn’t causing any problems, just something to watch in future. Last Friday, we backed off of her diuretics a little bit more — completely came off of diuryl and just kept with lasix. Weaning off of diuretics ALWAYS causes some weight gain, but on Saturday morning, after eating well on Friday, she had a huge dip in her weight. I asked the nurse to check and make sure that they had used the same scale as the day before. When she asked the charge nurse about it, she was told that there was no way to know or track what scales they were using. In other words, we couldn’t trust ANY of the weight measurements we’d had that week. Also, even though I wrote down every feed and weighed every diaper, the nurse from the day before hadn’t recorded any of it. That was the 2nd time that had happened. So we officially made the call to get us back to a cardiac floor/pod. We were moved Sunday to EPod, which is in NICU2 specifically for heart babies. She has her own designated scale here, and the nurses have been WAY more meticulous than on the Neuro floor. I did let the cardiologists and Nurse Practitioner know that while all the nurses were very kind and helpful on floor 10, that is NOT the place for cardio babies in the future.They all agreed — in fact, as I mentioned before, most of our doctors didn’t want us going to 10—and now we are in much better hands.
Well, when we got to EPod on Sunday, Sunley was experiencing very low sats, about 70-72. I wasn’t concerned at all, because I see those numbers often from her. The NP though was not ok with anything less than 75, and very strongly recommended putting her on 2L high flow room air to see if it would help. I agreed and immediately regretted it because Sunley HATED the cannula and was also very constipated (we had switched to 27 calorie fortifier that day). I went home that night knowing she was in for a long night, and that was extremely difficult. Before I left, the NP told me that if her sats continued to be low, they would consider putting in an IV to hydrate her or something (I can’t really remember the details of why), and I said absolutely not until I get back in the morning to discuss it. My head was spinning, because I thought we were just coming down to eat and take off wires, and instead Sunley had tape on her face again, with a cannula and way more monitoring. The NP was very patient with me that night and the next morning, explaining everything. They did not end up needing an IV, and decided that she must have been a little dehydrated from all the diuretics she’d been on.
Luckily (more like a God-thing), our very favorite cardiologist, Dr Ayres, was the attending cardiologist for the first time since we’ve been here. She is Sunley’s official cardiologist, and also diagnosed her prenatally. I could do an entire blog post about how many times we’ve heard the doctors here RAVE about her — she is just short of worshipped at TCH, and for good reason. Anyway, when we saw her on Monday morning, she completely changed the “plan” for Sunley — took her off of all diuretics and put her on a blood pressure med (I’ll have to look up the name again) due to some squeeze/relax issues she noticed with Sunley’s single ventricle in the aforementioned echo. I have some more questions about this drug, but it does look like she will need this for the rest of her life. I haven’t totally accepted that yet, but I’ll get there :)
We removed the nasal cannula sometime on Monday, and she also had 3 huge bowel movements around the same time. She was much more comfortable after that. We changed a bunch of things happening with her on Monday, but NOW she is on 24kcal Similac Total Comfort fortifying her breastmilk, eating every 2-3 hours 65ml and up (sometimes even 80ml). She is on Zantac, her blood pressure med, and will later today probably get back on her Lasix, depending on the results from her Xray today. There is no talk of us going home yet, but I do feel like it could happen relatively soon. I have mixed feelings about that again. I was so ready to go home until we started changing everything, and now I’m nervous again.
Last night (Monday night), she did go bradycardic for just a couple seconds while she was crying. I was so shocked to hear this, because that hasn’t happened since the couple days after surgery. Actually, just as I typed that, it happened again for about 10 seconds. Hmm. I was also surprised to hear about the squeeze/relax issues with her ventricle, because I thought we were past that. Her sats now are running around 80 which is great. But I wonder how long that will last, just based on her patterns in the past.
I also miss my big kids. I’m seeing them a lot more lately which is great, but I sure am missing a lot. I know it’s so temporary and short in the grand scheme of things, but it’s most evident with Ruger — he’s just growing so fast, and I hardly recognize him when I rock him at night. I think to myself, Who is this big kid in my arms?? He recently had a RIDICULOUS growth spurt (mostly in head circumference, unfortunately for him) and I just can’t believe how big he is. Two years old was probably my favorite age with Hadelyn, and I’m missing so much of it with my big boy. Right now, it’s looking like Sunley’s surgery will be right around the time Hadelyn starts Kindergarten. The public school that we were comfortable with here is full (I didn’t know public schools could be full), and I know that I will not be able to homeschool her while Sunley recovers from surgery, so we are very seriously considering sending the kids back to Midland when that happens. And that will be hard. No final decisions on that yet.
Here are some favorite photos from the past couple weeks. Some of them are "outdated" -- she doesn't have the head sticker or arm IV anymore. The most recent is the one with Hadelyn <3