Monday, January 14, 2013

                                          Amber aka Darth Baby hanging out yesterday
"We have this hope as an anchor for the soul., firm and secure. It enters the inner sanctuary behind the curtain," Hebrews 6:1

Sleeping peacefully
"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12

Having lunch today!
"As for me, I will always have hope; I will praise you more and more." Psalm 71:14

Today has been much better for Amber! We are so proud of her will to fight and her strength! 
Yesterday Amber tolerated the cpap mask all day and she slept beautifully all night. She probably got the best and biggest amount of sleep she has had in months, it was wonderful to see.
Today we decided to see how she would tolerate her cannula again.
I have to say I was not optimistic, I didn't want to rush things but Luke was adamant and we tried it.
She has done amazingly well! They have her on about 3.5 liters so a little more than at home but she has had so much energy and has been laughing all day! 
Amber's electrolytes were finally on the lower end of normal after yesterday's blood test. They decided to give her a day off of labs and check it in a day or so just to make sure they are staying up. We aren't sure what they are doing with her morphine, she's still on a lower dose. We are going to put her on the cpap again tonight and tomorrow night just to give her some extra support. The plan is to try the cannula on Wednesday night and giver her the cpap if she needs it. The pressure in the cpap really helps her open up the air sacs in her lungs. My feeling is, it helps give her the oomph she needs to keep going for the day. It also takes a lot of stress off of her heart. Which is why I'm so apprehensive about moving her off of it completely. 
Our goal is to get home by the end of the week or early next week. We are really focusing Amber regaining some strength, making sure everything is set and we are comfortable with how she is and caring for her. 
It's crazy to think that we will be bringing her home more fragile than she was before. 
We are taking one day at a time and thanking God for each new day!

"Just when the caterpillar thought the world was over, it became a butterfly" ~ Proverb


  1. REjoicing with you that you are seeing improvement and Amber laughing. We are praying. Love to you all. Brad and Cindy Heacock

  2. Such blessed news!!!!! I so do love seeing the photos of eccstatic to hear Amber has shown improvement...and a fighter she is as well as a precious miracle!!! My best to all of you as you continue through this journey with little Miss Amber!!Please tell her I said hello and sweet dreams!!

  3. I love reading your blogs Skye...thank you for the updates. Even though I am here, I really appreciate reading your perspective. Amber is a fighter, but she also has the most awesome, optimistic, make the very best of tough situation parents I have ever met. AND...God is showing His presence in a mighty way...His healing power, the fact that He is in control and that He hears and answers our prayers, and His mercy and lovingkindness have been so evident the past few days. Whether I am 6 hours away...or right here in your home, you are always in my thots and prayers! <3

  4. Great news! Wonderful pictures you have been posting. Giver her kisses and hugs from the Gordons.

  5. so good to read your blog and see pics of Amber . I loved the verse from hebrews and she truely is our butterfly, praying for continued strength for you and Luke as you fight along with and miss you all Aunt Jenn