Sunday, November 13, 2011

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.

21 comments:

  1. love and prayers and constant hope are being sent to you all.

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  2. God, I hate stories like these. Except it's not a story. It's real life. I hate it when my 4 yo skins his knee. It must be dreadful to see your baby in pain. Hugs and prayers and love and support being sent your way.

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  3. We'll be praying hard for your family and the medical team. May they do their work quickly and the utmost care and precision.

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  4. Sending lots of good thoughts for a positive outcome tomorrow. Hoping she has an easier day today

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  5. Lord Jesus Christ, Good Shepherd of the sheep, you gather the lambs in your arms and carry them in your bosom: We commend to your loving care this child. Relieve her pain, guard her from all danger, restore to her your gifts of gladness and strength, and raise this child up to a life of service to you. Hear us, we pray, for you dear Name's sake. Amen.

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  6. I just found your blog through Band Back Together. Prayers and good thoughts to you!! I can't imagine. My son was in the hospital for 81 days through three heart surgeries and I still don't know what to say to help. Prayers and more prayers!!

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  7. So many prayers being sent your way right now.

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  8. I'm a childhood friend of Jenna Nelson's, and have a daughter about one year older than your twins. I am sending prayers up from Austin, TX. Prayers for strength and comfort. God be with you in this uncertain time.

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  9. Billy and Rachel,
    Our family members are all survivors: Papa’s plane going down, not once but I believe three times, Brandon almost dying at birth, Elliotts shunt, Chris’s cancer, Miss Ellen in 1996 allergy to wheat, Jennifer being shot, Tommie’s recent fall, and I am sure there are more. With all of our family and friends praying and sending all their love your way, you will prevail. Give each other a long hug and a kiss from me to you, then one to both Mal and Micah! Love you all!
    Carla

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  10. So much love and light and healing being sent your way.

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  11. Nic led me to your blog, and I just wanted to tell you that I'm praying for Mal and will be praying all day tomorrow for a successful and safe surgery tomorrow. Sending you strength and hope from FL.

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  12. I will be thinking of guys tomorrow. Lots of love from Northwest Arkansas!

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  13. Love, light, prayers and whatever other good thoughts sent your way.

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  14. Sending all the positive, healing, good energy I can to you. You will be firmly in my thoughts tomorrow and I'll be praying for a successful surgery for Malorie. Love and hugs to all of you.

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  15. Dear Heavenly Father, please put your hand of blessing and protection on Malorie. Guide the doctors, nurses, and techs who operate on her. Grant peace to Billy and Rachel, Micah, grandparents, and all who love her. We pray for successful surgery and complete recovery. In Jesus' name. Amen.

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  16. Here's a little more love from NW Arkansas. Kendra and I have you in our thoughts. We are sending all the positive vibes your way!

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  17. Billy and Rachel, know that the Morrison Family and all of Advent as well as the Via De Cristo Family are praying for you as well as many people in many other churches in the Florida area. I fortunately know a lot of people and they are all on bended knee asking God to hold MalPal in His arms and to guide the surgeons and to make her well again... There is love for your beautiful sweet little girl as well as for the rest of you. If we could be there to hold all of you in our arms we so would be. Please know that our prayers are for you to know God's love and for him to give you all strength to get through this! We love all of you so much!

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  18. Sending prayers and so much light and love to you and your family tonight and tomorrow. I'm so moved by your situation. Wishing you only the best. x

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  19. Billy and Rachel,
    Malorie has been in our thoughts and prayers since we heard the news. You two have also been in our thoughts and prayers. Praying today that surgery goes well and that God will wrap his healing arms around your sweet baby girl.

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  20. Sacred Heart of Jesus, I place my trust in you. Love and prayers from your neighbors - Tim, Debbie and Timmy

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