even the toughest girls get frightened

I thought Adeline's face couldn't get more swollen.  Like when your 8 months pregnant and think that there is no way your tight heavy belly could get any bigger.  But somehow it does. And it's even more uncomfortable and tight and heavy and itchy.  I don't think that the skin on Adeline's eyelids could stretch any more now. Her cheeks  feel so warm and taut, and unnatural.  And the smell instantly brought me back to her last surgery.  (Blog Entry Friday, December 31, 2010)  But the swelling is even worse this time.  Please God, let this be the worst.

We were transferred out of the PICU around 6 last night.  We were ready.  She was tired of the constant monitoring and assessments.  The room we are in now is more comfortable for all of us.  And we have our own bathroom.  The PICU staff probably discussed how much I needed a shower - I was still wearing the clothes I came in - and requested orders for the transfer.

Grandma and Grandpa Matthes and Nile visited for most of the day yesterday.  It was so nice to see them and get a little help.  And Adeline loved to cuddle in grandma's arms.  Nile would ask anyone that even peeked their head through the door, "What are you doing to do to her?"  He and Grandpa passed the time in the lobby and cafeteria (Nile can turn any situation into a game and contest). Nile had a really hard time leaving. My appreciation for my parents is growing even more.

They replaced the crib with a bed last night so that Adeline and I could both sleep while I held her.  The really really really great nurse and I attempted at least 6 times to slowly, carefully, quietly transfer her from my arms to the bed.  But even though we both held our breath for record time she would startle and wake up and cry and flip and even stand up.  With I.V.'s in both feet.  She would somehow figure out how to lift her heavy, hurting head up and then with one huge push she would be on her feet in the middle of the crib.  So they had me sign a waiver, rolled a hospital bed into the middle of the room and helped me shimmy my way into the bed.  It was so much like being in the O.B. unit 18 months ago when she came into this world.  We lay chest to chest, feeling each other's heartbeat.  She'd start crying and squirm and I'd pat her butt.  But this time she is 25 lbs.  My arms still ache as I type.  But I loved every minute of it, and even got a couple of hours of sleep. She has been held for over 24 hours now - the only break was when she was placed in her crib on her tummy.  She loves that, but of course, the surgeons don't.  I know that this will pass and she deserves my undivided attention. And my arms can use a work out.

She still fights and cries when the nurses are doing vitals (or when they are getting blood work, of course). I think that since she can't see what they are doing she is afraid they are going to hurt her.  Or even take her away from us.  She yells, "Mom, mom, mom, mom!" Even though I'm holding her and singing in her ear.  But everyone understands.  It's scary.

Dr. Miller came in this morning and removed the bandages and drain.  Besides being bald, gigantic from the swelling, and leaking - it looks pretty good.  Again Adeline sat quietly and still while Dr. Miller messed with the most painful part of her body.  Maybe he should come in and perform her vitals!  He's happy with it, but said she's "one that just likes to swell a lot".  So we will stay until tomorrow or Monday.

They are trying to wean her off of the morphine so she will be more ready to leave if we do go tomorrow.  I hate to see her suffer, but I understand. She can still have Lortab.  Aaron took her for a walk around the unit.  She is quite the site - I can't help but wonder what other parents think.

She has been addicted to her pink spotted blankie since I can remember.  Nothing else matches up and she won't sleep without it. It is impossible to wash it, and once I even drove the hour back to Sioux City from Sheldon in the middle of the night because I had forgotten it and she couldn't fall asleep with out it.  But now she is sleeping comfortably in Aaron's lap with a warm, soft cuddly blankie from Cranio Care Bears.  Soaking up the love!  Almost as good as morphine!