Ellie Louise

10-2-12 Update

on October 2, 2012

Thank you everyone for the encouraging emails, posts and messages. Your prayers and love are wonderful testimony to the wonderful Grace of God as He works in our lives right now.

I wanted to update you and clarify some things from yesterday since I had very little time to post and may not have been as clear as I wanted to be. Also because I tend to always look at the positive in a situation.

But first – Answered Prayer:)

1. Ellie successfully came off the ventilator yesterday without any plan or assistance. We were very concerned about her coming off the vent because of her chromosomal issues (Trisomy 18) which make it very challenging for these children to breathe. The brain sends conflicting messages, sometimes their reflexes are just not there, sometimes they don’t have the throat structure to allow for the breathing to happen and Trisomy 18 children generally have very weak muscle structure and are not strong enough to breathe on their own for very long.

But as we were working on the how, what, when and why of coming off the ventilator in rounds, she jerked her breathing tube out and made the decision for us.

One of the things we have been praying is that the Lord would make it very clear to us at each step what we should do… and we feel as though He made it very clear.

2) Our second answered prayer was what to do in order to get her food. We tried bottle feeding her yesterday, but her surgery makes her very prone to reflux and she just doesn’t have the muscle structure to take a bottle.

However, we did get a new ng tube successfully placed yesterday and she is back to eating again. This will not be a long term solution, as the ng tube can very easily be pulled out, as demonstrated yesterday, but it will get her the nutrition she needs as we see how she does long term. Lord willing, in 4-5 weeks we will be able to reevaluate this need and have a g-tube placed depending on her needs at that time.

The Plan

Our plan currently is to bring Ellie home tomorrow. She is being discharged with hospice care. This means that generally the life expectancy on a child with Ellie’s diagnosis is very short. There is no cure or really getting better from Trisomy 18, but there is a spectrum in how this chromosomal issue affects different children.

We are prayerful that the Lord will see fit to let Ellie be one of the babies that beat the odds. We hope to hold her in our arms and love her for a very long time. But we really are unsure of how well she will do.

We are thankful that the Lord saw fit to let us have her and that she has done so well so far, but as one of our friends put it… she still has a long way to go.

Our Prayer Requests

  • For a seamless transition home with her.
  • For Zach, Brooke, Talley, Brant-Fowler, Hart, Susan and Tag’s hearts and minds to be protected, for them to grow in the Lord through this process and that they would see the Lord’s hand in Ellie’s birth and the life the Lord allows her.
  • For strength for Chris and I.
  • For Ellie to continue to gain strength, grow and to thrive. For her to beat the odds and be used for the Lord’s special purpose.
  • For me to be able to handle the medical aspect of her care. This is not something I am entirely comfortable with, but I am willing to learn.
  • For our family to enjoy each other and love one another through this time.
  • That she would grow and gain enough strength in order to have a g-tube placed.
  • That until that time, we could manage the ng tube and keep it in place.

I know that this is a very hard update for everyone to read, and maybe harder for me to write. But please know that our number one prayer for Ellie is for her to remain with us and to live. Please DO pray for her body and for her strength and for her to eat and breathe. We want that for her.

We love all of you very much –
Chris and Charlotte

13 responses to “10-2-12 Update

  1. Praying for “Little Ellie” has made our morning prayer time so precious. Bringing each request before our Father. You can count on us. Love you friend.

  2. Jacki Wiegel says:

    Love you, and love this precious baby!! Praying, praying, praying. Tears are stinging my eyes right now, but I will let them remind to pray!

  3. Zoe Howard says:

    Charlotte, this post made me cry. :) Baby Ellie is precious and already has a beautiful testimony of God’s grace in your lives. Praying for all of you!

  4. SUsan Haas says:

    Dear Charlotte and family,
    . What a special family God has given to little Ellie! It will be a privilege to pray for all of you. I pray that God will give you rest and refreshment both physically, emotionally and spiritually. May he raise you up on eagle’s wings. Love, Susan Haas

  5. connelly01@comcast.net says:

    Know I am praying that exact thing Charlotte, for Ellie to grow strong and to live that God will use her life in a mighty way. Stand firm and strong for her. God sees all and knows your needs and will gird you all up for this journey. You know you have all of us willing to help – just let us know. God’s grace and mercy keep shining on you all, YSIC Darlene

  6. Stephanie says:

    Love you all very much. and thinking of you often.remembering you in prayer and reminded that the Lord goes before you and knows what is best.

  7. Sandra Voegeli says:

    I don’t know what to say other that my prayers are with all of you. I lost several babies, one of them was over 5 months in developement and I help him in my hand for moments before they took him away. I never saw him again, and I wondered many time what did they do with my baby. My heart ached until I gave him a name and then imagined him in the arms of Jesus. Until you have gone through that misery, can you know the loss and what your body is going through. I pray fervently for you and I am happy for you that you will be able to hold and love on your little one for as many days as God gives you. He has room on his lap, just like He is holding mine. I just pray that you will have many day in which little Ellie can bless your life and the life of your children.

  8. Courtney says:

    Praying for your family, Charlotte.

  9. ashlee shotwell says:

    “The righteous cry out, and the Lord hears,
    And delivers them out of all of their troubles.
    The Lord is near to the brokenhearted
    And saves those who are crushed in spirit.
    Many are the afflictions of the righteous,
    But the Lord delivers him out of them all.”
    Psalm 34:17-19

    Praing for you all!
    The shotwell family

  10. Samantha Neville says:

    Charlotte: Dear Lisa Mullinax informed me of your sweet Ellie. I know you must be exhausted. I remember the days that we spent in the hospital with Wayne. You can only look back and know that God carried you through those days. Praise him for His goodness, especially when we must endure these trials. You may already know this, but I wanted to share with you that Rick Santorum’s daughter has Trisomy 18. I thought this video clip (http://www.ricksantorum.com/blog/2011/10/meet-our-daughter-bella) would bring you some encouragement. He, just like you, knows that this child is a blessing from God and any moments she blesses his life are a gift from God. Please know that you and your family are in my heart and in my prayers.

  11. Monica says:

    Holding you close in my heart and lifting you heavenward as well…Love, Monica

  12. Renee Armstrong says:

    Chris, Charlotte and family,
    I don’t know you personally but I feel as though I do through my daughter Brook Erickson. She has been keeping me posted on Ellie’s progress. I just want you to know that I am praying for Ellie’s strength to breathe, eat and grow. Mostly I am praying for God’s grace to be upon you and your family as you bring baby Ellie home to love and nurture. I always like to say that God doesn’t give us more than we can bear, even though at times like these it makes us wonder! My only answer is that faith will carry you through and give you the knowledge that you need to take care of your precious baby girl! None of us are guaranteed tomorrow, so we must enjoy and give thanks for the days we have with our loved ones.
    I will be constantly lifting all of you and baby Ellie up in my prayers!
    Renee Armstrong

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