*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, we had our consultation with Sunley's surgeon, Dr. Heinle to discuss her PA banding surgery. We were previously assigned to Dr Mery (back when we expected Sunley to need this surgery within her first week), but now Dr. Mery is not available. Neither was Dr. Heinle (no openings until the fall!), but fortunately we have Dr Ayres (Sunley's cardiologist), who went above and beyond and convinced him to squeeze us in. Dr. Ayres has been one of the biggest answered prayers through this -- her dedication and passion for her job and her patients is seriously unbelievable. I can't count how many times we have said how incredibly thankful we are for her.
Our consultation was set for 9am, but Dr. Heinle was pulled away suddenly for a couple of hours, so I don't think we actually met with him until about 11.45 or so. I think we should probably get used to that. I'd imagine there's lots of emergencies in the heart surgery world. Much of the consultation was a review for us by now, but he did seem to spend more time than other doctors making sure we understand that this surgery may not work. Not fun to hear, but I guess that's necessary to understand before getting started. Of course, we feel super confident that Sunley will do great, just based on how many Christians are praying for her and based on how well she's done so far! We will go to the hospital sometime Sunday afternoon, and Sunley's surgery is scheduled for around 8.30am Monday morning. All the doctors seem VERY anxious for her to start gaining some weight! That weight gain will be one of the main factors for when she gets to go home. I decided this last week that she eats better breastfeeding than bottle, and so it was nice to see that my mommy instincts were right -- at the appointment today, she had gained 1.6 oz in just 6 days, after switching to just 2 bottles a day. Woo!!
I told my mom I'm in "Go Mode" now. Monday is going to be beyond difficult, but for now I'm just 100% numb and surviving. I'm definitely having some minor physical side effects of so much stress -- I'm beyond exhausted and my stomach is upset pretty much all the time, but I think that's pretty normal for anyone in this situation. We plan on spending the rest of this week and the weekend having fun with all 3 of our babies at HOME! Thank you so much for all the of the prayers -- There are no words for the abundant comfort we have felt in the past months.
Please pray for a successful PA Banding, speedy recovery, and no more enlargement of her heart (which is currently 73% enlarged).