Myla Tuesday night update

This post will be short and sweet as I am ready to try to get some sleep. The big brothers and sisters were able to come Myla this afternoon. Although we had orders to be moved to a room, we were waiting for one to become available. They were all super sweet and curious about all her cords. It's a beautiful sight watching such HUGE compassion and tenderness towards their sister. They love her SOOOO much. Incidentally we were moved about 30 minutes after they visited. YAY!
Myla drinking her juice staring very intently at her brother, Nicholas. He is in love with her! And she loves her ge ge (big brother) in Chinese, and YES this is what she calls him.

Ethan-such the proud protective older brother. Asking if it's ok to touch her and give her a kiss. Of course I said. I was very thankful she allowed him to do this as she was not in the best spirits while they were there.

Big sister Zoe, I have been so blessed to see their relationship blossom. Understandably Myla felt in the beginning that she had to make sure she was the new princess in town and often wasn't always the kindest to Zoe. But what a difference time makes. They can play very nicely together as I have dreamed they would. Sisters forever! Zoe drew Myla a picture-she was so tender and calm with her. Talking so sweetly-describing all that was in her picture. It consisted of some reindeer, and a sleigh with gifts for everyone!

This is Ms. Lori one of our last amazing nurses in PICU. They really spoiled us there with phenomenal care-Myla was her only patient for the majority of the day! And it was a good thing too......

because this is how Myla looked for several hours last night! She had a reaction most likely to the adhesives used in surgery. We are still wondering why exactly, but she was so swollen, more than the usual fluids will do. She was very itchy and agitated. Benadryl and some anti itch meds helped the swelling go down and the redness in her face is now 90% better. Even with the poor coloring of the pic you can see the improvement over time-compared to pic above.

She is now resting well, she is being rotated every 3 hours-yay we gained an hour from PICU. We are praying we can roll her and her be able to go back to sleep. During the night and this a.m. she was needing pretty significant amounts of anxiety meds with pain meds. Thankfully she hasn't had any anxiety meds since about 10 a.m. They did however, increase her pain meds. We are hoping to go the night without anxiety meds. She has had some pretty good meltdowns where we have had to hold her hands and legs to keep her from hurting herself or pulling out IV. That is sooo hard to watch. She has such good lungs and has told me all about how mad she is but I know better than to take it personal. I'd be screaming too if I had a 6 inch incision going down my back, all kinds of wire and ichy IVs.

She has eaten some pureed baby food and had two cups of her rice milk and pooped YAY!! LOL

Praises

her contact dermatitis is improving

we are off PICU-which means closer to going home

she has eaten pretty good and had good calm awake time today

she hasn't had anxiety meds in about 12 hours

Requests

that she sleep well tonight

again no leaking CSF

that she will somehow gain some peace about these IVs

no constipation

that she won't need anxiety meds tonight

that she will have fewer episodes of being distraught

that her need for pain meds would start to dimish

that Shane and I will be able to soothe her when she is distraught

Thank you all for praying for our sweet Myla. Praying for a ton more praises to our Jehovah Rapha-the Lord our Healer!