*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 the game plan is to have a PA banding, Glenn, and Fontan (a series of 3 open heart surgeries).
Today, I had my postpartum checkup with my OBGYN across the street from Texas Children's. I'd been waiting on a phone call from the surgeons but still hadn't heard from them, so I decided to be a Momma Bear and just show up at the surgery coordinators' offices after my appointment and inquire in person. It sounds silly, but it took a whole bunch of courage for me to do that -- I do not like being pushy one little bit, because I am TERRIFIED of hurting anyone's feelings (Yes, I make things way more confrontational in my head than they actually are). But I did it. And turns out, nobody was offended. Yes, I am crazy.
About five minutes after meeting with them, Dr. Heinle's coordinator called me with consultation and surgery dates! Dr. Heinle is the interim chief of surgery, and we were told last week that he had no openings until October, so there was no way we would get him. Honestly, I am totally comfortable with ANY surgeon at TCH -- the more I research, the more impressed I am with every single one. I don't think you can be a surgeon at TCH unless you're the bomb. Heinle's coordinator mentioned to me that he has moved a lot of things around to accommodate us, and I'm so thankful to him and to the other people on our team making that happen. We will have a consultation with him Wednesday morning, and Sunley's surgery will be sometime on Monday, the 11th (a week from today). Yikes and Yay.
I am relieved and completely horrified at the same time. But mostly I'm happy for Sunley, and glad that her body is finally going to get the help it needs. Just in the last 2 days I've watched her start to really struggle, and I've watched my perfectly pink baby turn slightly blue over and over. It's so hard to look at her and know that she's going into heart failure one day at a time. As much as I hate seeing her body start to give in to her CHD, I needed to see it -- It makes surgery finally FEEL necessary. I wish with every cell in my body that this was the only surgery she needed. It's incredibly heavy knowing that this is just the beginning, but I know we can get through it all. I never dreamed I'd be able to handle this, but then that's the promise of God in Philippians 4, so I guess I shouldn't be surprised that we are doing ok with everything. She's been at home for just over a month -- Thank you LORD -- and we've had that time to really focus on our family and spend time together, which makes these hurdles just a little less stressful. We're as prepared as we can be, and now it's time to kick some CHD bootie.
I would love some more song suggestions if you have some! Music has been so healing anytime I'm going through something, and it's never been more healing than now. I think I may make a list sometime of the songs that are getting me through the year. This song has been on repeat since my friend, Julie, sent it to me last night (link below). And, by the way, you haven't really lived until you've sung this at the OKC New Year's Meeting with about a thousand other Christians. Just saying. This is one of those songs that I can picture us all singing/chanting as we make our way through the gates someday. Can. Not. Wait. #bestdayever