This was written last night:

June 12, 2018

It’s been a very packed 2 days. We came in Monday morning at about 6.45 am to check in and be admitted. We were told that there were currently no available rooms, so we were sent to the CVICU waiting room on 17 and waited for a few hours. There was talk of her surgery being moved to a different day, and I’m so grateful that it wasn’t. I would have hated to do the whole routine and the sibling goodbyes again. Around 10.30 or so, we took her back to the holding room on 18 and waited for Dr. Heinle to be available. Originally, her surgery was scheduled for Monday at 8am, then pushed to 1pm, and we ended up sending her back with her anesthesiologist around 2.30pm. She did so good with the waiting (without food for about 6 hours). We had prepared many scriptures to read to her, gathered scriptures from friends and family, and sang to her. She was so cuddly and content, and we got in all the snuggles and kisses that we could. Sending her back was very difficult, and I was grateful for the hour and a half delay, to be honest. After I handed her to the doctor and he started walking to the OR, I turned away and didn’t watch him leave with her. Reflecting on that later, I wondered how God felt watching Jesus being arrested. It comforted me to realize that He knows my pain. At least the people taking my baby are HELPING her.

If you were following the updates on Facebook, then you already know that her PA Banding surgery went very well. It was much quicker than expected, and Dr. Heinle was quickly happy with all of her numbers and saturation. During the surgery, though, the doctors did an echo on her heart and noticed some issues with her mitral valve. It seemed to be a bit on the small side, and he described it to us as “turbulent.” In order to repair that issue, Heinle considered putting her on bypass, entering the heart and cutting a hole in that area, but then decided to continue with the less invasive PA Band and see if it works. I was happy with that decision, but it does mean that there is a small possibility he will have to go back in later on. He may also need to go back in to adjust the PA band, because her saturations haven't been great (low to mid 70s).

We were able to meet with Dr. Heinle briefly after the surgery and he explained all of that to us. I took a photo of his hands — I know I will always want to remember them. Dr. Heinle is probably the most busy individual I’ve ever met in my life. He’s in very high demand around here, so much so that I felt a little bad asking him to pause for 5 seconds for the photo. But, you know, PRIORITIES. He asked for a copy, but I told him YOU CAN’T RUSH ART ;)

We got to go back and see Sunley around 7.30pm. Honestly, it really wasn’t hard to see her hooked up to so many things. I had expected her incision to need to remain open, but they were able to close and that was wonderful. Her color looked great. The only issue last night was that she did not want to be sedated — that girl can stay awake through a LOT of drugs. We slept in the Ronald McDonald rooms last night and got to bed around 11 or so.

We got up this morning and made it in time for rounds on 18 at 7am. I love making it in time for rounds because you get to hear the shift change review and get to hear the doctors explaining things to residents and students. Very helpful for me. Sunley had a bumpy night, especially with her blood pressure. The whole day today was spent tweaking her meds so I will just sum up the things that concerned/are concerning us:

1. Blood pressure. Her blood pressure has seemed a bit low throughout the day. They are still tweaking meds to hopefully help with that. They said it could be due to all of the sedation.

2. Sedation. Sunley is just never completely “out.” She will move around when you touch her, and they need her to be more still for now while she has her breathing tube in. They’ve given her tons of meds, so much so that I’m starting to lose track. I’m really trying to do a good job of asking whats going in every time, because I want to make sure we don’t overdo it (Ha! As if I really know). I just want to make sure that there’s a good reason for everything, even though they obviously know what they’re doing! There’s one sedation med (How do you spell cardmine?) that they’ve stopped giving her because of her blood pressure.

3. Blue Right Leg. Sunley’s right leg has off and on turned NAVY blue. Like, not slightly discolored — BLUE. It lasted a very long time today, and it’s most likely just due to the femoral artery line in her groin. That has been resolved now with better positioning. It’s been pink and completely normal looking for the last few hours.

4. Kidneys. Her urine output was very low all day, but as soon as I asked a few people to pray for that she peed a ton!! And her urine output has been good ever since.

5. Oxygen Sats and Breathing Tube. Her sats will ideally land in the mid 80’s. Unfortunately, they’ve been steadily in the high 70’s, occasionally hitting 80 or 81 all day. Every time we start trying to wean the breathing tube, they drop a bit. So at least another day with the breathing tube to give her body some rest.

6. Mitral Valve. There was growing concern today that another surgery was needed (the one discussed during her PA Banding), but after an echo and xray, it was determined that her issues are most likely due to fluid in her lungs (a lot of fluid) and not her mitral valve. GOOD news, although we obviously need that lung fluid to leave her body, which we are working on with Diurel (spelling?).

7. Heartbeat and Heart Rhythm Issues. Sunely’s heart is beating weakly. The doctor said that they rarely figure out why that happens, and it will often resolve itself. She has had some escape rhythms as well, and is currently on an external pacemaker to help with that when needed.

I know I’m forgetting things, but we are exhausted. Sleeping here at Ronald McDonald again, and will try to get rest. I love that baby! We met our older kids tonight at the hospital park, and took them to dinner. It was good to see them, but very hard to leave. So glad that we have SO much family and church support during this. We would be in a very different place without that. I will try to write more tomorrow but it’s definitely time for lights out for this Momma!

Photos from the day: