The Story of Emmie-Rose

This is the story of a little girl that came into this world way ahead of schedule. Now fighting day by day until she can be home with her family. This is Emmie's story. From 23 weeks old on...

Tuesday, September 12, 2006

Sep 12 - Food!

Sep 12, 2006

I was a Y2K IT project manager for a Cleveland based bank. We never did anything unless we met in the meeting, everyone agreed on it, then put the plan in action.
I though I had never spent so much time in meetings in all my life.
I think between all the meetings we have had with the staff up at the hospital, the hospital meetings are winning for the most time spent in a conf. room.

Monday -

The doctor's hands are basically tied now that the "Un-Ethical" committee has ruled. Even though he personally may want to try things to get Emmie-Rose to a point where we can try for something down the road, He can't because the hospital will begin to question him why he is providing aggressive support.

The biggest part of a second opinion is finding a doctor and hospital that will accept her.
Pittsburg Children's is the leading center for intestine transplant. They would not take her because she did not match their transplant criteria.
Rainbows Babies and Children's - could not offer anything more than "comfort care" and would not accept her.
Toledo Children's will take her but our insurance would not cover her there.

Our only other option at this point is Beaumont.

We were finally able to get the doctors to give her blood and TPN last night!
Stephanie told them, how would you like it if you went a week without food?

So far so good. She did well overnight last night.
She got a nice bath and got all cleaned up by one of the few nurses that is professional and takes the time with her she needs. We appreciate that greatly!

There is more going on here today. Sorry no update last night as Steph and I came home last night and collapsed on the top of the bed we were so tired.

We appreciate all your love and support!

May the Lord show us the way to glorify him!
I think the Lord and Emmie-Rose are both showing us that now.

All our love,

Chris & Stephanie.

11 Comments:

  • At 9/12/2006 07:21:00 AM, Blogger alicek131 said…

    You all remain in my prayers. I am so glad they finally gave Emmie-Rose some care....and food! Have you tried St. Joseph's Children's Hospital?

     
  • At 9/12/2006 08:23:00 AM, Anonymous Anonymous said…

    Thank God for your persistence, she finally received some food and care. The staff that has turned their backs on you should be ashamed of themselves. You have my continued prayers and support in your battle for her life. What about the News stations, not even one willing to get invloved? Maybe a picket line would cause some attention. I wish California was not so far away. God Bless You!
    Mara Lopez

     
  • At 9/12/2006 08:31:00 AM, Anonymous stephanie said…

    Chris & Stephanie,
    I can get media contacts for you, if you want to pursue that route. We can try to raise money to get her transferred to Toledo. Don't forget, Betty has a radio station on standby. We'll do everything we can but need to know if you want us to pursue this. I have my cell phone, call me!

     
  • At 9/12/2006 12:13:00 PM, Anonymous Anonymous said…

    Hi Chris. All of us at Hope are so distressed about what’s happening with Emmie-Rose, and none of us can understand how the doctors can make the decision about withholding food or care. I would think that is your and Stephanie’s decision to make. Anyway, there is someone you may want to talk to who can probably give you some advice at the very least. He is a pediatric surgeon who has volunteered many times with Hope International and has done surgery on children in Nicaragua (not sure about infants) with imperforate anus (born without an anal opening). He is also an assistant professor at U-M Medical School. I have sent his contact information to your Hope e-mail address. I don't know him personally, but his wife and daughters helped me with a mailing for Hope International. It's a long shot but maybe worth a try.
    God bless you and all your family,
    Sue

     
  • At 9/12/2006 02:17:00 PM, Anonymous Anonymous said…

    I have been reading your story of your precious daughter for a few weeks now. It just bring tears to my eyes. She is such a fighter.

    Many prayers for you and your sweetie.

     
  • At 9/12/2006 02:35:00 PM, Blogger tnolan said…

    May God continue to bless all of you...my name is Teri, sister of Tonya Petrill. I am not suprised at all to hear of the anti-life campaign against your baby-hv become familiar with these politics lately. I have recently heard of some news that adults were able to survive without intestines. Not sure what that would mean for baby, but i will see what i can learn. Antibiotics only kill what little immune system she has. At the health food store, they sell ACIDOPHILUS for baby that will at least replenish her "good bacteria" that she should naturally have in her little belly and body. Could only help. Will forward what i can find about the intestinal issue and you are in our prayers...many hugs.
    Teri Nolan

     
  • At 9/12/2006 03:12:00 PM, Blogger suegene said…

    Continued prayers for you.

     
  • At 9/12/2006 06:43:00 PM, Anonymous Anonymous said…

    Hi,
    You may have already checked but wanted to let you know there is Children's Hospital in Detroit. That may be a possibility. Our thoughts and prayers are with you and your sweet little baby Emmie-Rose

     
  • At 9/12/2006 08:37:00 PM, Anonymous Cousin Kris in Florida said…

    "Where there is life, there is hope"
    Emmie-Rose, the tinest hero...fight Emmie fight! And we'll fight with you!

     
  • At 9/13/2006 06:31:00 AM, Anonymous Anonymous said…

    Maybe Ava can help Emmie-Rose

    http://uillinoismedcenter.org/content.cfm?contentalias=living_donor

     
  • At 9/13/2006 06:34:00 AM, Anonymous Anonymous said…

    I have a friend with a contact at the Michigan Daily paper, and he thinks that this is probably a story that they would like to publish since the paper likes to go after UofM and it is absolutely awful what they have not done for Emmie-Rose. Call me for his number.

    Hollie

     

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