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...

Thursday, September 14, 2006

Sep 14 - Media Hold!

Been on the phones most of the morning with Lawyers.

Lawyers said: Need to chill on the media for the second. We can talk to them for
something in a little bit.

They are working on some things and we will be meeting in their office
this afternoon.

Emmie-Rose is still going strong today.
We will let everyone know how she is doing later today.

Thank You Sooooooo Much for all the kind words and support!

Chris & Stephanie

37 Comments:

  • At 9/14/2006 08:44:00 AM, Anonymous Stephanie said…

    Good luck you guys! We're all thinking of Emmie-Rose today. I wrote letters last night to Gov. Granholm, Senators Carl Levin & Debbie Stabenow & US House of Rep. John Dingell. Here's to hoping we can find someone to atleast listen & atleast provide you guys with an UNBIASED second opinion. Let's let Emmie-Rose fight as long as SHE wants.
    Much love from us <3
    Stephanie

     
  • At 9/14/2006 09:02:00 AM, Anonymous Anonymous said…

    Just received this notification. God honors the believing of the parents to save their child. I'm praying. I have known two boys as infants who have received heart transplants which I was amazed since I had worked at Gift of Life the transplant center of MIchigan I haven't seen infant transplants You just need a gutsy doctor to the transplant. SISU

     
  • At 9/14/2006 09:24:00 AM, Blogger Beckie's Life's Lessons said…

    was given a link and wanted you to know your baby is beautiful and praying for you and your family and that Emmie-Rose will be given the chance that any child should be allowed.

     
  • At 9/14/2006 09:53:00 AM, Anonymous Anonymous said…

    Not sure if you will end up needing to go this direction but maybe you should get in touch with Terri Schivao's (I may have spelled that worng) family. They will know who you can get in touch with to picket, etc. if it comes down to it.

    I will say a ton of prayers for you baby girl. The word is quickly getting out and I pray that Emmie-Rose is given her birth right chance to survive!!!!!

     
  • At 9/14/2006 09:58:00 AM, Anonymous Anonymous said…

    My continued prayers for Emmie-Rose and you. Is there somewhere we can email that would help?
    Mara Lopez

     
  • At 9/14/2006 10:14:00 AM, Blogger alicek131 said…

    I will keep you all in my prayers. I passed your story along to some friends. My brother-in-law, even posted about it on his blog. He gets 70,000 hits a day.

    http://www.deanesmay.com/posts/1158206535.shtml

    Alice
    ComputerTraining.com

     
  • At 9/14/2006 10:22:00 AM, Anonymous Anonymous said…

    I have been reading your updates everyday, you have a very beautiful and strong little girl! I have eamiled as many people as I know to try to get your story out there and maybe someone will be able to help you. I pray for Emmie-Rose everyday. Know that your little girl is in my heart and prayers, God Bless
    Melissa Sinclair

     
  • At 9/14/2006 10:52:00 AM, Anonymous Anonymous said…

    Saw your blog today my heart and prayers go out for your family and beautiful Emmie-Rose!

    Have you tried the DuPont Children's hopital? Web site is www.nemours.com - they are world known for specializing in hard to solve cases. Good Luck - Kristin

     
  • At 9/14/2006 10:54:00 AM, Anonymous Anonymous said…

    I have the highest hopes for all of you! <3

     
  • At 9/14/2006 10:58:00 AM, Anonymous Anonymous said…

    Anything I can do to help, please let me know! I am adding her to several prayer lists to help. I do deal with U of M frequently, and am not too surprised with this. Fight the fight, she is your daughter!

     
  • At 9/14/2006 11:55:00 AM, Anonymous Anonymous said…

    Umm I know this might be a long shot but try this hospital..
    Primary Children's Hospital
    5770 S 1500 W, Murray, UT 84123
    Phone: (801) 265-3000
    I live in utah and happen to be on the Ann Arbor ecycle list still. I know they have lots of assistance with the bills. They might be a hope. Good luck.
    Melinda

     
  • At 9/14/2006 11:58:00 AM, Anonymous Anonymous said…

    Please visit www.shareyourstory.org

    Parent-to-parent support and online community of premature and NICU babies.

     
  • At 9/14/2006 12:05:00 PM, Anonymous Anonymous said…

    I just found your blog today and caught up. I wanted to extend my prayers and thoughts to your loving family and your beautiful, fiesty, spirited daughter. She seems like such a fighter and that alone must bring you so much joy!

    Erin

     
  • At 9/14/2006 12:08:00 PM, Blogger Sara said…

    I think a letter writing campaign is in order. Let's all work together to get this noticed.

     
  • At 9/14/2006 12:21:00 PM, Anonymous Lisa said…

    I wanted to send you my well wishes & prayers for your little angel.

    Is your daughter on Medicaid? If she is, that's probably the reason why they have decided to starve her to death. Medicaid only pays 40% of total bill, if even that, & the hospital is forced to absorb the rest. It makes sense that they are fighting a transfer. If they do & she survives this, it would prove their decisions were wrong. It would make them look really bad & open them up to lawsuit. This also means they believe she CAN get through this with proper treatment.

    Keep up the good fight, thousands of people are pulling for her!

    ENLTich1104@aol.com

     
  • At 9/14/2006 02:02:00 PM, Anonymous Jeanine said…

    Sending prayers for all of you. Your daughter is beautiful and clearly a fighter. I cannot imagine the anger and frustratation you must be feeling in this situation.

     
  • At 9/14/2006 02:03:00 PM, Anonymous Jennifer said…

    Chris,
    I had emailed March of Dimes they responded with a place to contact. I sent you an email.

    Jennifer

     
  • At 9/14/2006 03:05:00 PM, Anonymous Anonymous said…

    HI
    I just want to give you some Bible scriptures to start reading over Emmie OUTLOUD. You may think this is crazy. However, what will it hurt. Put Emmie's name in it fits in the verse.

    3rd JOHN 2 "Beloved, I wish above all things that you,Emmie, prosper and be in health even as your soul prospers."

    ISAIAH 53:5 "And with His (Jesus) stripes Emmie, is healed."

    1 PETER 2:24 "By whose stripes you,Emmie, WAS healed."
    Will also have special prayer tonight at our church for her. Karan

     
  • At 9/14/2006 03:54:00 PM, Anonymous Anonymous said…

    Most people only dream of angels, You got to hold one in your arms. Don't make her suffer.

     
  • At 9/14/2006 05:06:00 PM, Anonymous Jessica said…

    I just wanted to say that I am praying for your family and that beautiful baby girl.. I live in Fremont Michigan and would love to help out if I could but for now I will just send thoughts and prayers your way... if and when you want I can contact some of the news stations down here for you

    jessica

     
  • At 9/14/2006 05:18:00 PM, Blogger Dawn said…

    From one of my boards:


    I'm so sorry no one is willing to help your niece. There are very few facilities that are able to conduct this type of transplant. We have a Chilrden's hospital here in Rochester you can try calling. It is called Strong hospital in Rochester, NY.

    I work at an HMO so I can give you some feedback. The HMO's hands are tied too. They can not approe a referral unless it is called in by the provider. Since it seems like the providers are not willing to do this, you really do not have to many appeal rights.
    My suggestion would to call the US Attorney General's office and your local state official. The HMO always jumps when they hear from one or all of the organizations.
    If you can find a hospital that will be willing to accept here and if there is not a hospital in your local area thatg can provide the type of care needed, the HMO usually has to cover the cost of the treament. This includes those at non participating facilities. If you can get a provider to call in the referral and the HMO denies it, you8 have access to a urgent review since her life is in danger by prolonging a decision. Usually they have to review the denied precert within 24/48 hours.

    Also, the baby does not need to be transported for a second opinion. Atleast in NY state we has law that mandates the right to a second opinion. Howver, much of the time it is based of off the records from the current provider.

    Please contact me if you need any assitance dealiong with the HMO.

    Again, call the AG's offioce and you local state rep!

    Melissa

     
  • At 9/14/2006 05:55:00 PM, Anonymous Anonymous said…

    I am praying for Emmie-Rose and her family. I cannot even begin to imagine the depth of their pain and frustration.

    I do, hope, the family has "big guns" in terms of their legal representation. If not, I hope they don't hesitate to contact the media.
    I think some of the posters on this board have offered great advice as to why the hospital has chosen its path. The public has a right to know and be reminded that many of these decisions boil down to economics.
    Wishing you peace.

     
  • At 9/14/2006 06:13:00 PM, Anonymous Anonymous said…

    I am so sorry the family of poor little emmie-rose has to go through this. I think it is an outrage that the hospital has taken it upon themselves to play god and decide for her that she must die. My husband cannot believe it either. I hope they find some avenue that opens up to them to save their precious little girl.

     
  • At 9/14/2006 06:57:00 PM, Anonymous Anonymous said…

    I can't even imagine what you are going through. I pray the Lord will give you strength to continue your fight on behalf of your precious daughter who continues hers. Keep looking up!

     
  • At 9/14/2006 07:12:00 PM, Anonymous Anonymous said…

    Have you tried University of Connecticut Health Center. They have a great NICU and I know they have had 23weekers. Here is their transport line (860) 679-2397. Please call.

    Thoughts & Prayers,
    Melissa

     
  • At 9/14/2006 07:13:00 PM, Anonymous Anonymous said…

    I heard about EmmieRose through friends - I'm a fourth year medical student at Loyola University Chicago and I wondered if you had tried to get an opinion or help from them? The main NICU doctor there, Dr. Muraskas, holds the world records for the three smallest infants to survive... He's got a lot of faith in little fighters like your daughter! The main webpage is www.lumc.edu.
    God bless! Teresa Asam

     
  • At 9/14/2006 07:20:00 PM, Anonymous Anonymous said…

    I am praying for Emmie-Rose and your whole family. She is a fighter! And she is a miracle baby.

     
  • At 9/14/2006 07:23:00 PM, Anonymous Cousin Kris in Florida said…

    Let us know what you want from us. Everyone's on standby until you say the word.

    Praying for Emmie-Rose, "the tiniest hero".

     
  • At 9/14/2006 07:45:00 PM, Anonymous Joanna said…

    I came across this on my moms board and instantly thought of another baby that is a micropreemie that is being treated in Dallas. Here is there blog.
    http://tinytruman.blogspot.com/

    Can you possible get in touch with that hospital? I know it is pretty far from where you are, but no place is too far when trying to help your child.

    I will certainly be praying for your little fighter!

    Blessings, Joanna

     
  • At 9/14/2006 07:52:00 PM, Anonymous Anonymous said…

    Praying for you guys-- although far away, you might want to check out St. Joseph Medical Center, Tacoma WA. They have a nursury for high risk new borns and am told their staff is excellent. Had some friends that had a baby about the same age when born, and they really did do everything in their power to keep the little one alive. Might be worth a call to talk with someone there....here is their website... main phone # (253) 426-4101

    https://www.fhshealth.org/location/sjmc.asp

     
  • At 9/14/2006 07:53:00 PM, Blogger Tamara said…

    My God I will Keep Emmie-Rose in My prayers. I will think of anything I can do to help you in your fight!!! PLease say if there is anything we can do!!!

     
  • At 9/14/2006 08:27:00 PM, Anonymous Anonymous said…

    God bless you and your beautiful little daughter. I'm praying for you all.
    -- Kevin.

     
  • At 9/14/2006 09:20:00 PM, Blogger Chris said…

    May God bless your family. You are in my prayers.

     
  • At 9/14/2006 10:01:00 PM, Anonymous Stacey Cravey said…

    Hey Chris and Stephanie, I'm sorry you and your daughter are going through this. I will keep you all in my prayers. My nephew was born early and he was treated at St. Vincent's Hospital in Jacksonville, Florida. They have a unit strickly for children and they are a wonderful group of doctors and nurses. Please check with them. I don't have a number or an address but you should be able to get it from the net if you google it. Good luck and God bless.
    Stacey Cravey

     
  • At 9/14/2006 10:14:00 PM, Anonymous Raine said…

    I am so sorry to hear about your situation. I know it is way out of the way, but have you tried contacting St. Jude Children's Hospital in Memphis, TN?

    They specialize in cases like this. The General contact number for them is (901) 495-3300

    I will keep you in my thoughts.
    Raine

     
  • At 9/15/2006 06:16:00 AM, Anonymous Anonymous said…

    No one wants to feel like they are giving up, but sometimes what is best for our children may be hard for us as parents.

    Let her pass away peacefully, with dignity.

     
  • At 9/15/2006 02:21:00 PM, Anonymous loreine said…

    I have heard great things about this hospital. This is where many of the stars have their babies.Go to the link and see what they did for this micro premiee

    http://www.littlemanthemovie.com/nicuworld.html

    Four surgeries. Two codes. Chest compressions. Hundreds of baggings. Collapsed lungs. Six different ventilators, oscillators and jets. Hundreds of suctions from the lungs. Needles in every conceivable vein. Heel sticks until the foot looks like swollen strawberries. Excreting feces from the stomach. Eight centimeters cut from the bowel. Thirty blood transfusions – platelet infusions. Countless re-intubations and repeated catheterizations. Four kidney failures. A spinal tap.


    In 2002, Nicholas is the smallest surviving patient born at Cedars Sinai in Los Angeles
    Neonatal Transport Program
    The NICU's newly formed Neonatal Transport Program moves neonates requiring tertiary care, 24 hours a day, seven days a week, from the referring facility to Cedars-Sinai's NICU. When appropriate, the program also provides return transport to the referring facility. The program is committed to providing team mobilization within 30 minutes or less, with a policy for triaging patients in the event of multiple, simultaneous referrals.

    In addition, the Neonatal Transport Program offers these services:

    A transport team comprised of a neonatologist, an NICU registered nurse and a respiratory therapist accompanies the newborn on critical and air transports. On noncritical transports, a team comprised of a neonatal nurse practitioner, an NICU registered nurse and an NICU respiratory therapist accompanies the neonate.
    Ambulance or helicopter transportation, based on the patient's need, distance and the referring facility's ability to manage the newborn until the transport team arrives.
    A medical director and a transport coordinator who ensure clinical practice compliance and oversee the daily operations of the program.
    Two infant transport incubators with a self-contained power supply to maintain neutral thermal environment, temperature and cardiopulmonary monitoring, neonatal ventilator, oxygen and compressed air, suction devices and infusion pumps. Other supplies and medications are readily available in transport bags.


    Neonatal Intensive Care Unit
    Ahmanson Pediatric Center
    Cedars-Sinai Medical Center
    8700 Beverly Blvd.
    Los Angeles, CA 90048
    Phone: 1-800-CEDARS-1 (1-800-233-2771)
    Alt Phone: (310) 423-4431
    Fax: (310) 423-1402
    Send Us a Message


    Neonatal Transport Program
    Ahmanson Pediatric Center
    Cedars-Sinai Medical Center
    8700 Beverly Blvd.
    Los Angeles, CA 90048
    Phone: (310) 423-4451
    Alt Phone: (877) 444-NICU (toll free) Consultations
    Send Us a Message

     

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