*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.
Sunley’s second full day in the hospital has been relatively uneventful, which is a good thing. The cardiologist on duty this week is Dr. Tobias Schlingmann, and we both really like him. He is very confident that she will not need to go back on Enalipril, or either of her diuretics (Lasix and Diuril). I am skeptical, and will be asking for a chest X-ray soon to double check for fluid on the lungs and heart enlargement. He’s probably right, but that’s just so different than what Sunley’s cardiologist, Dr. Ayres, seemed to think so it’s a bit confusing from where I sit. Other than not being 100% sure about his plan, we both really like Dr. Schlingmann, and I am ALL FOR getting rid of some meds if her body can handle it. I really like his philosophy of letting her body try and take over as much as possible. I’ll be super excited if we get to stay off of all those meds!It’s been fun to hear several nurses and attendings ooh and aah over her unique anatomy. One of the fellows during rounds mentioned that she’s a “double inlet, double outlet” and followed it up by saying “and I’ve never said those two things together before.” It’s so interesting hearing the doctors explain her unique anatomy, although it’s made it a little difficult to educated myself on it — Most of the literature and research available is about Hypoplastic LEFT Heart, and she is Right, which is just different enough to be a little confusing at times.
She will have bloodwork done tomorrow, and tonight we will start with a new baseline weight. Simply getting off of diuretics will cause some weight gain, which is why we need a new baseline. At home, she had gotten up to 4.110 kg (9 lbs, .96 oz), but when we came into the hospital on Monday, she was down to 4.0 kg (8 lbs, 13 oz). They don’t necessarily have a strict “cut-off” for the Glenn (her next surgery), but they all want to see 5 kg (11 lbs). That extra weight could help her odds in surgery, or so I’ve been told.
*Update: We got a baseline weight tonight of 4.175 kg! That is the most she’s ever weighed :) That’s 9 lbs 3.26 oz and that makes me happy (Even though I know some of that is only because she doesn’t have her diuretics going).
Sunley has been really struggling with her reflux. I’m not entirely sure why it’s suddenly so much worse, except that now because of the tube she is ALWAYS getting 80ml feeds. Also, just having the tube in can cause a little bit of reflux. Even with the reflux, Sunley finished 2 of her bottles today, no tube needed!! So we are definitely headed in the right direction. She is still on Zantac for reflux, which doesn’t help actual reflux, but should help with the pain associated with it.
We have had GREAT nurses on 15. Lots of familiar faces, and lots of help during the night, which means we are actually getting some much needed sleep! I’ve said many times throughout all of this, I will gently encourage all my kids now to consider nursing as a career. These people are seriously amazing. Anyone who loves on my baby is a winner in my book ;)
A lot of you have heard us talking about other families that we've met here, and we feel so blessed to have met them all! I know a lot of y'all follow baby Oliver's progress. He is HLHS and had his Norwood procedure the same day as Sunley's PA Band, so we met Oliver's parents while we were all waiting. Since then, we've become very close. Leslie (Oliver's mom) and I joked about how Sunley and Oliver "complete each other" because she has her left side and he has his right. In fact, in the CVICU, she would often be bradycardic while Oliver was tachycardic, Sunley would have a weak beat and Oliver would have extra beats, etc. I found this necklace on Etsy, and it's perfect because it makes a half heart when it's closed. Leslie and I have decided that Oliver and Sunley are destined to be friends, even though they've never actually been in the same room. We can't wait for them to meet!