Wednesday, April 11, 2012

"I love you"
It's amazing to me how much a hand can communicate! Piper had a stable night Tuesday night and a good day yesterday - I am very thankful (stable meaning she didn't throw us any new curves). She woke yesterday morning with that little right hand moving all over the place. She is so weak she can't move much else and she can't seem to see anymore, even though her eyes are occasionally open a slit, but her little right hand contains every bit of the Piper personality I am used to seeing. It's remarkable. She alternates between playing with her blanket or floating her hand over her body, to getting up to mischief like trying to rub the nasogastric tube off her cheek or trying to take her diaper off by pushing at it with all her might. She was playing with Grammy's zipper and pinching her cheek yesterday morning for a bit too.
We have been wetting her mouth with a little foam brush and letting her suck the water off it and we wondered if she liked it or not. She brought that little hand up and did her best to hold it there, and then reached for it when we took it away to wet it. She tries to move our hands if she isn't happy with us touching her tummy or her arm at a particular moment. She tries to move her blanket to the side of her body if she doesn't want it on. At her worst overnight Monday night, she used every bit of strength she could muster to try to move Daddy's hand off her arm. It's like her hand is talking out loud, communicating her desires. I marvel at the many small ways one can communicate that I never would have looked for before Drew; the things a small facial movement can convey, the needs a hand can communicate, the joy a foot can express, and the contentment a sigh can reveal.
The music therapist came by today and we moved Piper's foot over to touch the therapist's guitar while she played. Piper's breathing slowed down and evened out as though she was intently listening, and her foot gently moved off and back on, off and back on, testing the vibration. She didn't open her eyes or change her expression, she didn't even move her little right hand, but her little foot clearly communicated her participation in the music. A few minutes later, she fussed a bit possibly due to discomfort with her position so I stood up to dance with her. She quieted, sighed and seemed to melt into the music.
I would love it if she could speak but I have not really felt frustration with her inability to speak because she can still communicate so much. Ok, I have to take part of that back now that I think about it... there have been a few times where I have wished I could see inside her little head to see what she is experiencing, but it seems that so far she has been able to communicate her desires fairly well. I am thankful for that.
When she was born I remember thinking, "I want to learn every little thing she likes in case there is ever a moment where she can't tell me what she likes." I watched like a rapt audience, recording every sigh of contentment in response to this or squirm in dissatisfaction to that. She loves to be face to face, head to head. She loves gentle, stroking touches. She calms to consistent soft shushing sounds. She likes to be held sideways and in close. She likes to have her hair played with, and her face stroked, but she doesn't like to have her eyes or the bridge of her nose stroked. She relaxes with music, but will not go to sleep to it. These are only a few of the things she taught me and I am sure there are so many more I could learn. I just hope she knows how much I love her through the measures I take to show her. I would do anything for this precious child. It is amazing to me to how much joy I get out of being able to provide her comfort! Is that how God feels I wonder?


  1. There are no words to express how amazing you are as a family, your love shines through. Your journey is inspiring and I hope to be able live in each moment as a parent and love God and be grateful for every moment as you have.
    My thoughts and prayers are with all of you and many hugs for Piper and Peyton. You are truly one of the few families that has touched me to such an extreme depth and I know I speak for all of the nurses on Unit 3 that feel we are better nurses and are so blessed to have looked after Drew and your entire family.
    Lots of love and thank you for the update,

  2. So precious, so beautiful. Piper and your family are in our prayers. xxx

  3. HI. found your blog thru mother letters.
    Your courage is mind boggling! (in a good way) Praying for you all today...sweet Piper. wow. there are just no words to adequately express the emotions here.
    Hugs and prayers...God bless you.