*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.
You might recall from our last appointment with the cardiologist, we decided to start adding a small amount of MCT oil to Sunley’s fortified bottles. The day before we did this, Sunley had a “low feeding day,” just meaning that she didn’t finish any of her 80ml bottles. Our goal after the appt was to increase feeds to every 2 hours, increase volume to 90ml, and add in the MCT. We knew the 2 hour feeds probably wouldn’t work, and we were right. We tried for 2 days and she just isn’t hungry every 2 hours. So we went back to 3 hours, but continued the MCT. Her feeds got worse and worse every day, to the point that she was nearly skipping some feeds altogether. After doing some more MCT research, I saw lots of comments about it curbing your appetite, so I wonder if the struggle is from that (even though it kind of started the day before we started MCT). I called the cardiologist last Wednesday, and we got her weighed. Not surprisingly, she had lost 20 grams. We decided to drastically lower the MCT dosage, and I asked if I could quit the MCT in a day or two if I didn’t see improvement. Feeds continued to be bad, so I quit the MCT on Friday. Since then, she continued to be very spotty with her eating. This has resulted in quite a bit of wasted milk, which is frustrating. We set up a follow-up weigh in for this coming Wednesday. Derek and I both fully expected an admit then. Some of her feeds are as little as 5-20 ml. That’s less than an ounce. I was doing everything I could to try and get her to eat, but she obviously just needed help. Derek was out of town most of last week and weekend, so while it was stressful by myself, Sunley and I had some really great one-on-one time. We went to Rice Village for lunch nearly every day :)
Monday morning (yesterday), Derek and I started discussing our concerns and decided to call the cardiologist on call. He said to go ahead and come in and get her checked out. When we got to the hospital, her sats were in the 60s. The nurse admitting us said, “Well you thought you were coming in because of feeds, but I guess you’re coming in for low sats!” They ran some tests, and her BUN numbers showed pretty serious dehydration. A healthy BUN is 10, and Sunley was at 41! They got her hooked up to an IV, and gave her some fluids, and her sats quickly came back to the 70s. I asked for the VAT team to put the IV in (they ultrasound to ensure minimal pokes), but the nurse insisted that we didn’t need them. After one try, she was very apologetic and called VAT. So next time, I feel like I can really put my foot down with that. We all knew that she needed an NG tube, and that was quickly ordered. I was out of the room for the very beginning of that process, and I’m not happy with the size they put in (too big), but I’d rather not replace it unless we HAVE to. Sunley is still getting used to it. This was her 6th time to get an NG tube stuck down her nose. But she handled it like a CHAMP!
Last night, we basically just got settled in and started feeds. I brought up a bunch of frozen milk for the milk bank and we got that sorted out. We also got to see a lot of familiar faces, including a cardiology fellow, SJ Lahiri, who has been with Sunley off and on since day one. He’s one of our favorites. I saw him last night as the elevator doors were closing, and he gave me a “What are you doing here” look. I said “Yeah, we’re back!” And he said, “I’ll be right up!” Later, Dr. Heinle (her surgeon) and his NP’s Meghan and Jill came by. Dr. Heinle walked in and said, “What’s wrong with my baby?” Those are two examples of super small comments that made a HUGE difference for these parents’ comfort in the hospital. We are just so happy with the care she’s gotten here. It hasn’t been flawless (I don’t think it could be), but everyone is on team Sunley, and you can tell that they all really genuinely care. Meghan and Jill have both spent so much extra time talking with us, and it goes such a long way.
Today in rounds, cardiology decided to take her off of all her meds except Zantac. So right now she isn’t getting any diuretics (previously Lasix and Diuril) or Enalipril. He doesn’t think the Enalipril is necessary, and he’s wanting to get her hydrated and establish a new baseline before tweaking with the diuretics again. This is fine, but it’s exhausting going through SO many different cardiologists each time we come here, because they all seem to have different opinions on the best game plan. I love the thought of going home on LESS meds this time, but I hate the jerking around of her body that all the med-switching must cause. And I’m asking LOTS of questions because I do not want those lungs getting damaged with fluid again! We have no idea how long this hospital stay will be. The doctors have used the term “short and sweet,” but I remember how long it took last time to get her meds just right, so let’s just say I’m decorating the room :)
I miss my big kids a LOT, but this hospital trip is already a million times easier without having to split my time between here and the apartment. We are on 15, which means we have our own room and “bed” so we can stay here as much as we want! We plan on going home for just a short bit tonight and grabbing some stuff we left, but then we’ll come back for the night. I’m sure once things get a little more routine here, we will switch off nights at home (it’s very difficult to sleep here, especially 2 in the bed) but for now we both feel like we need to be here with her, and discussing things with the doctors as they come by.
I made this watercolor a couple weeks ago at home. I know it’s flawed, but I just love looking at drawings of her heart anatomy, the way God made it. No one else’s heart will be exactly like her’s, and I think that’s pretty beautiful (even if it doesn’t function by itself!). I’m sure it’s not perfectly anatomically correct, but close enough for me. I did some color pencil on top, and wrote a couple of very small verse excerpts in Hebrew, so they aren’t too obvious ;) One says “He breathed the breath of life” and the other says “He enables me to walk.” Those are two verses that remind me of the perfection and power of God. He didn’t make this heart perfect by itself, but it is perfectly what I needed, and she was born at the perfect time, with enough medical advancements that she gets to live. I’m already a better mom and a better person because her heart is different.
P.S.-I’d still fix it if I could.