I have not written for a few days because I have been consumed with trying to make Piper comfortable and to spend as many moments with her as possible. I am sitting in close proximity to her right now, hoping to soak her in while I type and her Papa enjoys holding her. The last few days have been challenging. Wednesday Piper cried much of the day and we spent so much of the day trying to figure out why and how to help her. It didn't seem that she was really in pain, but something was bothering her. There were no answers and I found myself wishing she could talk, just for one moment even! It was an exhausting day, emotionally more than physically. Every time she was awake, she was crying. She wouldn't let us touch her, wouldn't even let her blanket touch her. It was as if she was uncomfortable in her own skin. The hardest part of the day was that there was nothing I could do to soothe her. I tried all the things I knew to try for her but none of them would stop her crying. By the end of the day I was wondering what value I was to her! I wanted so desperately to be able to comfort her! Every bone in my body was aching to hold her, to calm her, but I knew that even my softest touch would be too much for her. I felt as if someone should tie my hands so my instinct wouldn't take over and my hand slip out for a touch, just the lightest of brushes on her skin. When she did fall asleep, we all tiptoed around her, afraid to wake her up and begin the cycle again! It became clear by Wednesday night that Piper would not be comfortable awake unless we could find something that would help her cope. Thursday morning brought some relief for her as we tried a few more things with the medications she was on. She was beginning to calm down but over the day, she began to sleep more (which didn't leave much awake time in the day!). Thankfully by yesterday afternoon she was able to be "awake" without whining and crying. She would only be awake for 5 minutes but awake without crying for 5 minutes was better than awake crying for an hour! The doctors don't think it's medication induced sleep but rather another step of progression in her disease.
Today was a blessing with a bittersweet twist. She slept all day today, except to wake long enough for us to wet her mouth and for her to find her nose and rub it with the strength she could muster. I thought she might rub it off this morning! We put a sock on her hand early this morning because every time she woke up a bit over night she would go straight for her nose, and inevitably in rubbing her nose she would find her ng tube and fixate on it, trying to remove it! She has always been one to rub her nose as she's falling asleep, and I have often wondered how it doesn't hurt her, but she's taken it to a new level now! She worked her nose over so much that it was red this morning! Since she was so determined to rub her nose, we thought if we put a sock on it it would keep her from getting a hold of her ng tube. Ha. Piper's personality and determination showed through again, baffling not just her doctors this time, but even Jordan and I. We sat there watching her whine at it, rubbing her poor little nose when it was as if the light bulb went on and the sock went into her mouth. She chomped down on it, barely missing her fingers and she pulled her little hand for all she was worth! Success and freedom simultaneously! She was free of the sock! It was more than I could do to put it back on! But that meant I had to watch her little hand like a hawk until she fell asleep. We ended up putting the sock back on a few hours later after she successfully got a hold of the ng tube and pulled it out about 3 inches, with at least 3 of us watching! She pulled the sock off again 2 more times. As adorable as it was to watch these antics, it was not without whining. Awake = whine. As I write tonight however, she has not been awake since this morning. That means no whining, but also, less Piper time somehow it feels. I am relieved she is more content, but I miss her! Ah, the times we have enjoyed! We have been able to cuddle today again though so my heart cannot complain. Whatever combination of where she's at and the medications she's on worked to create more contentment for her, less irritation with being touched and more peace for me as the gap my arms felt the last two days is temporarily filled.
I have to go now as it's my turn to hold her again so I'm off without fine-tuning this post, but I wanted to let everyone know where we are at today. Thank you for your prayers for peace - they are working! And to any parent who has ever had to watch their child suffer for long periods of time, I must admire your faith and endurance!!!