*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.
It's hard to believe that the photo above was only a few weeks ago. Sunley has gained about 12 ounces in just four days!! We are so proud of her! The last few days have been spent tweaking her meds to find just the right balance. We THINK we have found it now and so…drumroll…they are sending us home TODAY! She weighs a whopping 8 pounds 1.6 ounces and is going home with only 18 days left of sternal precautions. She eats around 3 ounces every 2-3 hours, so we are about to be very exhausted at home, but for happy reasons :) We worked with OT here at the hospital, and we feed her in very specific ways, so right now only Derek and I can give her a bottle, since we’ve been trained in it.
It’s been an emotional 24 hours, as we are officially “through” the first surgery. It didn’t go perfectly, but we are happy to be going home within a month of her surgery date (June 11). We are being sent home with more meds and slightly lower saturations than we hoped for, so I hope the next surgery gets us closer to our goals. Her lungs have still not improved since surgery, and so we are desperately hoping for positive changes there over the next months. She is going home on doses of Lasix, Diuryl, Enalipril, Zantac, Nexium, and Simethicone. The Simethicone will probably be stopped soon, and the rest will continue to be tweaked as she grows. All of these are oral and not injections, which is good. I downloaded an app to give me daily reminders for her meds, as well as track my pumping with her eating, to make sure nothing gets overlooked. They are also sending us home with a pulse ox for spot checks, but not constant monitoring. They weren’t going to send us home with one, but I pretty much insisted, just for my peace of mind.
The doctors told us to treat her like a newborn as far as outings go. So, we’ll be homebound for just a little while, but should be able to resume normal outings in just a couple weeks, within reason. I can go to Target as long as she’s covered, for example. (I specifically asked about Target, because PRIORITIES.)
Her bradycardia has been brief enough that it isn’t a concern, and her echo yesterday didn’t show anything new — Not that it didn’t show anything concerning, just nothing NEW. We all feel confident that she will not have a cardiac emergency between now and the Glenn, but her main risk is catching a cold or a stomach bug, or even a fever. The doctors also told us to limit exposure to non-vaccinated kids. I am 100% NOT asking for your input with this one. We have so many friends who we love dearly that don’t vaccinate their kids, so we were sad to hear this, but we agree with our doctors. It doesn’t mean we can’t be friends, and we absolutely still want to see you and spend time with you, but it does mean we probably can’t go camping together. And honestly, how are we supposed to know which kids at Chick Fil A or at a church meeting are vaccinated and which ones aren’t? So if you are in the no-vax club, maybe just discourage your kiddos from holding or kissing on our little ones. I know that if you aren’t vaccinating, then you obviously think this is a stupid rule for us. I get that not vaccinating is an option for a lot of people, but it is no longer an option for any of us, or our extended family. A runny nose could quickly end our time with Sunley, so not only do we have to ask non-vaxxers to use caution, but anyone who is even just suffering from a minor cold or cough. I HATE how much I have to care about germs now. I hate it A LOT. I’ve always been a “rub some dirt on it, build your immune system” mom, but I don’t get to be that anymore, and I need your support and understanding. Most of all, I need you to stay away if you are sick :) There is definitely a balance of keeping away from germs while still getting out and LIVING life, but our balance is permanently different than it was before. I’m really sad about that, so please don’t pick on me for having to change our rules.
Sunley will have weekly check-ups as she did before, and we are hoping to put off her Glenn procedure until the end of October/early November. I’m not sure she’ll make it that long, but that’s what we are hoping. Please keep us all in your prayers! Pray for her lungs to improve, and for her to continue to gain weight!
Sunley's favorite thing is watching her monitors every day. If she's upset, we just turn the monitor to face her, and she usually calms down. Our nurse a couple days ago decided that this means she'll be a doctor when she grows up, so she got her a scrub cap and it was pretty much the CUTEST.