Rise and Shine
Our day began around 4a.m. Ash woke fussy and uncomfortable and has remained that way. Up until that time I feel like she rested fairly well. She tolerated her vitals being taken throughout her IVIG infusion and even slept through some of them. At 5:30 x-ray came rolling in and I thought, "Well at least were already awake this morning." Then it was time for labs to be drawn, and the day took off from there. Hospital life is tough on little ones. Their sleep is interrupted constantly and they never quite get into a routine. I managed to stretch her tubing far enough to reach the rocking chair, but it didn't help. Her chest is sore from the drain and she is no longer tolerating it. She picks and pulls at the dressing trying to get to it. The doctors would like to give her a one time dose of morphine to help her get through this period today and hopefully get her some rest.
We are not removing the drain today. We all had hoped for it to stop draining by now, but it hasn't. It is slowing and that is good news, but not enough to remove it. She will have to keep it for at least one more day if not two. We will be turning it off of suction and onto water seal today to see if that helps it to stop draining some. She can't wait for it to be gone.
We are taking her down to CT today to look at the bowel. We are hoping to see that the nuemetosis(?) has resolved enough to begin some feeds. Unfortunately she continues vomiting and until it stops as well we are stuck on TPN. As long as she is on this course we will have to stay here. Things will eventually turn around I just have no idea how long it will take to get her going again. The removal of the drain tube will be huge when that can occur.
My plan today is to keep the room as quiet as possible and to try and soothe her enough to get her to sleep. The lights are down, the music is playing, our "candle"(thank you so much "cheerful giver") is glowing. If she sleeps then I will begin a new book by Max. Low key is the plan outside of our trip to CT.
I just wanted to take a moment to say:
Sandra, thanks so much for all you have done. The quarters have made my life so much easier. You have been a blessing.
Krista, please tell the girls thank you from Ash. We loved their gift!
Brent and Darlene, what a great idea for her crib. The lights are glowing as I type and I thank you so much for the package. The socks are adorable!
Jule, the mask is perfect! I am sleeping so much better, and the laundry burden is so much lighter. Thank you my friend.
Glenda, Thank you. You put a huge smile on both of our faces.
Dee, I can't thank you enough for the meals. It has been wonderful to have something home made for a change.
For the many card and letters I say thank you. What a joy it is to receive mail from you and to hear how God is using Ashley Kate in you lives. Thank you for caring and for praying.
Amy, I would love to receive the CD you have put together. What a blessing.
Many have asked what Ashley is allowed to have and not allowed to have. The only thing I know that we can not receive are plants, flowers, or latex balloons. Thank you for your interest in making her days bright. You are all so loved.
Have a wonderful day and please know that you are appreciated for making a difference in the life of our family. The days aren't so lonely knowing you are all out there praying for us and thinking of our sweet girl. Take care my friends. Trish