Daddy Long Legs

Hello guys! Easy day today. Maybe easy for me but Ava still has the NG tube. Good news she was off suction today and put on straight drain. Her output was less than 10 ml's SERIOUSLY! I can't say I'm surprised. She likes to do things at her own time. She has only had a few sips of water. Yesterday she drank about 12 ounces of water (It helped soothe her throat. It hurts off and on due to the tube.) and a Popsicle. She just takes sips. (3 ounces total) In "obstruction world" she made HUGE progress today. It means her stomach and intestines are working... things are going down and through. We also walked 16 laps. I counted and it is 273 steps per unit lap. She goes fast too... so fast that the IV pole shakes. No slow walk for her. Walking equals bowels moving and we are ALL for that!

I was a little off this morning. I woke to doctors blasting in at 6 am asking how she was feeling. I had my black eye mask on and was so startled. I had no idea where I was and what was happening. I jumped up and tried to compose myself. I grabbed my hearing devices, stood by her bed and suddenly realized I didn't have my mask on. I can't seem to get used to wearing them all the time and seeing stall wear masks and face shields. It's a reality check for sure.

I asked Ava to show me her PICC (central) line and here is what she gave me? Doesn't she look thrilled? When she first got the NG tube she didn't want to leave the room because she felt "ugly". I told her that a tube doesn't define who she is. After a little bit of music therapy and Mom love she doesn't care what people think. She did a few makeup tutorials and looked so adorable. She is embracing it and not fighting against it... How amazing is she? And so beautiful! She loves life and brings so much light to all that meet her. I'm so proud of how she is handling it all.

Tight fit for 5'7 and a half...

I bet you are wondering... what's up with the title of this post?  Ava's legs are SO LONG. I've been calling her Daddy long legs! Funny story tonight the new night nurse came in and we were talking about how short the hospital beds are... she told us the bottoms are removable! So guess who is way more comfortable?! Who knew this? We didn't, so we had to share! She also shared how to turn off those annoying red lights shining from the ceiling right in Ava's eyes at night. She's teaching us a lot of things we never knew. We love Ali too. Her day nurse was Sara and she is a blast of energy too. Our nurses and staff here has been really helpful. Healing... and more healing. Baby steps are so important in this process.

And her with all the foot room she needs!

See our beautiful scenery? We don't have the best view but I still love the skyline and the clouds! Ava's beautiful flowers lighten the mood. She "checked out" a hospital Xbox. Guess what she's been playing? Minecraft We love the lights above the TV too!

A perfect verse for our family as we are in waiting. Any day we will soar. I trust in God's plan. As soon as I wrote this Ava came out of the bathroom. She says, "You may want to check that out, Mom." Only Ava! SHE POOPED again,,, seriously we love farts and poop. People. I'm so happy I want to show the doctors pictures. 

Please keep the prayers coming. Pray that this obstruction clears fully on it's own. I don't want Ava to have to keep going through these obstructions Only time will tell if the obstruction was due to a twist in intestines or from scar tissue building up. I'm relieved that she has a central line as she needs nutrition while going through this very rough patch. Better days are ahead. We appreciate you love, support and your prayers. God bless you for taking time out of your life to stop by her, check on Ava and raise her up to God. He has a plan for everything.

-Terri, Brian, Ava, Lexis and Emeline