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Joined: Jan 2002
Posts: 610
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Posts: 610
My niece was born at the beginning of May with many, many medical problems as a complication of Cystic Fibrosis.

Well, on Monday she just had her fifth major surgery in four months. They couldn't finish the surgery because her muscle tissue and fascia are so weak from the starvation. CF kids have problems digesting food because their pancreases are clogged due to thick secretions. Also her liver and lower intestines are underdeveloped because of the cyst that developed during the pre-natal period and took over much of her abdomen. She is four months old and still weighs less than her birth weight. She is basically starving to death and her liver is failing. I am not sure that she is going to survive. They can't put in a feeding tube because she is vomiting everything she eats and they can't feed her by IV because human beings can't tolerate that for very long before their liver fails and her liver is already very weak. She is home with my sister who is an R.N. and will keep her at home as long as possible. We don't talk about her dying but it seems to be the almost inevitable conclusion of all of this unless her liver heals quickly on its own.

Please keep Rachel in your prayers. Things are much better for many CF patients but that isn't the reality for all of them. Many still die very young.

MJ

Joined: Jan 2002
Posts: 741
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Continuing in Prayer for Rachel.

Joined: Jun 2001
Posts: 556
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Joined: Jun 2001
Posts: 556
MJ,

I will keep you and your niece in my prayers.

With love,

Joined: Oct 2000
Posts: 1,884
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MJ,

Thank you for the update on your niece. I will continue to pray for her as well!

Love,

Tigger

Joined: Oct 2001
Posts: 709
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MJ,
I was just thinking about her the other day and said a prayer for her. I will continue to pray for her.

Dawn

Joined: Mar 2002
Posts: 1,163
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I am so sorry your family is struggling so hard with this. God will do what is best for that little angel.

<img border="0" title="" alt="[Smile]" src="images/icons/smile.gif" />

Joined: May 1999
Posts: 3,369
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That poor little girl...only here for such a short time and has experienced little else but trauma and pain. This is probably the most wretched thing I have heard in a while. I am so deeply sorry for this poor little thing. I will pray for God's will and His love to enfold her and comfort and bless her. I pray that He will spare her further pain and suffering and give her healing and strength to overcome this debilitating illness. And I will pray for your sister and her family, and for you, too, MJ, because I know this is very painful and sad for you,too. I am so sorry....

Love and prayers for Rachel and her loving family...

Catnip =^^=

Joined: Aug 2000
Posts: 922
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Posts: 922
Dear MJ,

May your precious niece keep a constant supply of strength to get her through this rocky beginning. She sounds like a real fighter and I am sure she will be fine.

May God's blessings be hers and I will pray for your family's continued strength to endure watching Rachel suffer through these surgeries. May you all keep in sight the better days that are coming, especially for baby Rachel.

love,
heavenly

Joined: May 2001
Posts: 3,303
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Ohhh, it's so hard to watch the little ones going through so much trauma, but you know? God is SO merciful. I'm sure He is holding her in the palm of His loving hand and she is not feeling any of the pain. I bet it's harder on the adults than the little one. God is with you all!!! Trust Him!!! Sending all my love and prayers your way. Keep the faith!!!

Joined: Feb 2001
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Sending my prayers up for little Rachel!

Joined: Mar 1999
Posts: 2,430
J
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Posts: 2,430
MJ,
I'm so sorry to hear of this continued pain for everyone. My prayers and best wishes for your whole family,

J


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