Monday, October 12, 2009

Another Lesson

This past week was bittersweet.   I lost my roommate, John.  He was brought here after his mommy noticed that his tummy was getting severely distended.  It turned out he had a neuroblastoma.   Mommy was sitting with me on the sleep chair and the nurses were preparing to transport John to radiation when all of a sudden nearly 30 doctors and nurses blast through the doors attempting to revive this helpless baby.   Mommy was shaken up and after a few minutes they asked her to leave with the social worker.  When she returned an hour later she learned that John did not survive.  She heard his parents behind the screen sobbing, devastated by this horrible and completely unexpected news.  Mommy wanted so badly to pick me up and hold me in her arms, but she didn’t.  She wanted to be sensitive to John’s parents.  As they walked out of the room, she didn’t want to remind them of the thing they will no longer be able to do – hold their precious child.  It was a sad day, but mommy’s eyes were opened from it.  Her and daddy have been getting upset at the fact that it has been nearly three months since Mommy has been away from home and her family.  They have been upset that they can’t bring me home yet and that they’re not even sure when they will be able to bring me home.  After John didn’t make it, Mommy realized that they have to be grateful that I am here, that I am strong, and for the amazing progress I have shown.  The events of the day brought her back to August 7, 2009 when the docs told her I might not survive.  It reminded her of how far I’ve come and just how thankful she should be because of that.  

As for me, I am feeling much better than when I last wrote.  I am getting back to my normal self, no longer lethargic and breathing fast.  I am now eating 60mls of fortified breast milk every three hours.  I am packing on the pounds, weighing in at around 7lbs 6oz.  Do you believe one of the nurses even called me thunder thighs!  Unreal…damned if you do, damned if you don’tJ.  I am also back to sprinting now.  Today, I went off the ventilator for 8 hours straight with no problems.  My surgery is set for this Friday, October 16th and I don’t think I’m going to get out of it this time.  I just ask that you pray for God to continue watch over me and touch me with His healing hands.  My mom asks for prayers that He helps me to recover quickly and that He guides the hands and hearts of the doctors and nurses taking care of me.  I think my feistiness along with your prayers will help me to live up to my nickname here at CHOP, “NICU Rockstar.”          

Love and God Bless,

Ella Rose


  1. BEAUTIFUL!!! We will say an extra prayer on 10/16 for you (it is my parents 55th wedding anniversary, so it is a great day!!). Looking forward to hearing more progress reports. Much love and kisses.
    Lucette, Randy, Jonathan and Jena

  2. This is it Ella Bella, time to show them what you are made of!! We love you so much and we know you are going to do awesome today!! I wish I could be there with you, but Aunt Danielle has a little cold and we didn't want to chance it. Saying lots of prayers for you, Mommy and Daddy today! God will be with you when they can't and we all know you will show those docs how strong you really are! Love you lots! XOXOXOXOXO
    Aunt Danielle, Uncle Josh, Hunter, Layla, Maddie and Jackson

  3. We hope all is going well today!
    Love and prayers,
    Alison, Joe, and Jake :) xoxoxo

  4. Nina,

    Your friends at Wisdom Lane are thinking about you. Little baby Ella is beautiful, and we hope the best for your family.