Saturday

Today brought more challenges to our family, but also more opportunities to love and be loved. I spent the night with Mal last night, and I can't say I missed the beeps and squeaks of the ICU since I was last in one with the twins when they were newborns. Mal was up from about midnight to one last night and was very playful and happy. She smiled and giggled with me as I tried my best to do slapstick in the dark to get to see those beautiful dimples. They lit up the room.

Throughout the night, and the day for that matter, Mal has to be awakened every two hours for checks on her symptoms. The nurses and doctors shine flashlights in her eyes to ensure she is not starting to show symptoms of a problem, and then check all her connections. Along with the stent in her head, she has an IV out of every arm, and had a catheter as well until she ripped it out today, but more on that momentarily. Her head must remain level with the drainage vial for her spinal fluid, which is hard for a little kid. Mal slipped and slouched and rolled in bed enough that the nurses started coming by her room every 20 minutes or so to readjust her or the vial.

I sent Rach home to sleep last night, but she was back in the hospital by about 6 a.m. She couldn't sleep either. We had a nice morning, watching an incredible number of Dora the Explorer shows. I had no idea Swiper the Fox was so dastardly. Anyway, I went home to have a shower and lunch with Micah around nine thirty. Micah is oblivious to anything being wrong, but asks where Mal is about every ten seconds, which is hard for us. He loves her so much, everywhere he goes he points out her belongings, as if she would be there any minute to claim them. We hope we will be able to bring him in to see her next week when she makes it out of the ICU.

Upon my arrival back to the hospital, Rach called me and told me to get up to Mal's room as quick as I could. Mal's doctors had been trying to keep her on Tylenol for her pain from yesterdays surgery, so as not to mask any neurological symptoms that might present. However, Mal's little body could take the pain no longer, so she started to fight back the only way she could. When I got to the room, Mal was clawing at all her tubes to try to get loose, and desperately trying to stand up. She succeeded in ripping out her catheter, but thank goodness she did not get a hold of her cranial tube. She screamed and fought for a good forty five minutes straight until the morphine kicked in. I have never seen her, or anyone else, in a state of such rage and frustration. Once the medicine kicked in, Mal was much more peaceful the rest of the day.

Around dinner time our friend Jenna arrived with a massive poster board for well wishers to write words of encouragement to Mal. A bit later, my parents arrived from Chicago and were able to see Mal awake and in a good mood. In fact, Mal even ate her third meal of Cocoa Puffs (or as she calls them cock-a-doodle doos) for the day with her grandma. We had no idea she loved Cocoa Puffs so much, but when she gets home I am going to buy her a lifetime supply.

After dinner and a bit of rest, we received the best gift of the day. Our nurse wanted to change Mal's linens and give her a sponge bath. She allowed me to hold Mal while the linens were being changed, and Mal fell asleep in my arms. She is getting so tall now, her legs wrapped around me and hung off the chair. Rachel arrived back from putting Micah to bed just in time to be given a chance to hold Mal as well. She still has not let that baby girl go, as Mal is sleeping in her arms as I type this now. In fact, Rachel is fighting a cold, so she has been wearing a flu mask to prevent germs from getting to Mal. She just asked me to come change hers, as she had fallen asleep with Mal and drooled through her mask. Our nurse called in reinforcements to help her weave through the tangle of tubes and wires to get us to hold our daughter for what will likely be the last time until after the surgery. She is so kind!

Monday is coming all too soon, and looming larger by the moment. Mal's surgery will be complicated, and take most of the day. We are faithful that in the vital hours, Jesus will hold Malorie in the palm of his hand and deliver her safely back to us. The surgeons here are the best around, and we also have faith in them, and their skill. We are overwhelmed by the outpouring of support for our family and our little girl. Thank you to all of you.