Day 26

Wow! 26 days away from home. Before Ashley Kate's birth I had never been away from for more than 9 or 10 days, and that was usually for vacation or something incredibly fun. I wouldn't necessarily consider our trips to Omaha a vacation or even something a little bit fun. I would just say that we have a few good friends here and its nice to visit them for a couple of days every now and then, but 26? I'm not so sure about the length of our visits.

Fun? Definitely not fun for Ash. I was dressing her this morning and noticed all the bruises she has that just don't seem to want to heal. The tops of both her tiny hands are bruised(from attempted, but unsuccessful IV placements). The sides of both her feet(again those nasty IV tries). The right side of her tummy has a nasty little bruise(from the IV they placed while she was in surgery last week). Both rib cage areas are bruised from the chest tube placements. Under her neck and back across her left shoulder have bruised marks from her central line placements. Inside her groin on the left and right sides from the lines originally placed 20 something days ago. Still not healing. A small circular bruise under her chin from a finger of the RT who was bagging her 2 weeks ago today. The insides of both elbows(I'm not really sure what that place is called) from her original IV and arterial line attempts back on Feb. 6th and 7th. Still there. Not healing. If I took her in public today I would probably become highly suspicious to those who had no idea what she had been through. She looks pretty beat up, and like I said, she just doesn't heal as quickly as you or I because of her medications. I wonder what in the world we are going to do once they pull out her central line? With each and every attempt at drawing blood for her lab work she comes away bruised for weeks. Once she is bruised I don't allow them to try in that spot again until she has healed. I can only imagine how painful it must be to stick needles in the middle of a bruise. I can't even stand to bump one of mine.

In case you haven't figure it out, this little pickle is tough. The smallest, yet strongest person I know. Can you believe she still manages to smile and find joy in her life each and every day? That joy must come from the Father. Its the thing I love most about my sweet Ashley Kate. Her joy. She has an amazing spirit that overlooks her obstacles, her struggles, her disabilities and still finds joy. I love her so much. I learn so much from her. On this long, boring, frustrating day here in Omaha so far away from those that we love she has found joy and I can't help but look for mine too. If she's smiling, I'm smiling. If she's clapping, then I'm going to also. I don't know what she is celebrating, but whatever it is I have joined her.

It's been a good day. We got dressed. We put on a big pink bow. We played. Watched Blue. Read books. Cuddled. Ripped out my hair and threw my glasses across the room. Took a long nap. Drank way too many diet cokes and cups of water. Turned down her oxygen requirement. Placed her chest tube on water seal( it has been on suction this whole week, so this is an improvement). Stuck out our tongues to whomever entered our room, and now we are going to kick back and hang out with each other for the night. Still hoping and praying we aren't bumped up to the floor, but perhaps moved back over to co-op tomorrow? It never hurts to ask.

I desperately need to do our laundry, but I'm holding out in hopes of moving closer to the machines again. If it doesn't happen soon I'm going to have to start hiking across the campus to the machines. Not my favorite thing to do while were here!

God's been good to us again. Ash looks better and better every day, and I can't help but feel hopeful. Home could be closer than I thought just a few days ago. Heal lungs heal and breathe pickle breathe! Then we will pack our bags and head for warmer weather. Take care my friends. Trish