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...

Sunday, September 17, 2006

Sept 17th Another Day of Craziness!!!

Hey Everyone,

Can't believe I'm on here again! Came to check My email and comments and since lots of people are worried about Emmie-Rose and haven't heard from Us today, I need to spend a few minutes giving you an update. I am SUPER tired as We just got back from the Hospital visiting Our Little Baby Girl again so bare with Me.

Okay, We went to the hospital today and saw her for awhile, My dad held Her for awhile and then I held Her for awhile. Z, M and B got to come up after Church and Lunch to see Emmie-Rose and We got some Family pics (the best We could with the small room, all the tubes, cords and 3 1/2 yr old not wanting to listen very well)LOL. Anyways, We finally put Her back to bed which is NOT her happiest times because She loves to be held. We settled Her in, gave lots of hugs and kisses and left to spend time with Z, M and B. Came home had dinner, checked the comments for a few, help Z with her homework and misc stuff for a few and then off to Nanna and Pappa's house We go. Dropped Z, M and B off at My parents house and off to the Hospital again. We call all the time to check on Her. When We got there She was doing very well vital sign wise. Her stomach isnt looking very good and seems to have gotten progressively worse throughout the day. The Surgeons say there is nothing they can do. What should have been done days ago, wasnt, and now Emmie-Rose is the one suffering. This wouldnt be happening to Our Baby if the situation would have been handled differently. We know and understand that its VERY LIKELY that Emmie-Rose may NOT make it but guess what?? That doesnt give anyone the RIGHT to deny anyone of the Medical Attention They so deserve, or DOES IT??? Only God knows when someone is going to go and ONLY HE CAN DECIDE. We as human beings cannot decide We want to play "God".

To those out there who think that You know what is Best for Our Child, please think again. One day this could happen to Your Loved One and You will then what to make decisions for them. Think about it, What if someone just up and took your rights away from You to voice how You want them taken care of?? How would you feel? What would you do? All We want is the Care, Respect and Dignity that Emmie-Rose deserves. We want U of M (Nurses, Doctors, Social Workers, Clerks etc etc etc) to stop staring at Us and talking outside Our door. Please have a little Respect and realize We are VERY LOVING Parents who just want Our Daughter treated like She should be.

To Emmie-Rose's Special Nurses, We really appreciate all You have done for Our Baby Girl. We Love the Way You have treated Her since We meet over a month ago and show Her the Love, Respect and Dignity that She truly deserves. For that, Chris and I are forever Grateful!

YOU GROW GIRL!!!

KEEP ON PRAYING!!!

Love,
Stephanie and Chris and Emmie-Rose too :)

posted by Stephanie @ 8:45 PM  

42 Comments:

  • At 9/17/2006 09:35:00 PM, Anonymous Anonymous said…

    Still praying, I did get a call from MA tonight wondering if they could start a fund for you, not sure how they would do it, sending prayers along too. Hugs, Frances aka Johnsmom

     

  • At 9/17/2006 09:35:00 PM, Anonymous Anonymous said…

    Chris and Stephanie you relly should contact the Michigan Protection and Advocacy Service. What could it hurt and at this point I believe Emmie-Rose could use all the help she can get.

    Russ

     

  • At 9/17/2006 09:43:00 PM, Blogger Carrie said…

    My heart is aching for you and I will keep you in my prayers. Grow Emmie-Rose, grow!

     

  • At 9/17/2006 09:46:00 PM, Anonymous Anonymous said…

    YOU GROW GIRL - - many prayers for you and your family and that special little girl

     

  • At 9/17/2006 09:53:00 PM, Anonymous Anonymous said…

    I'm still praying out here in Oregon. I check your site everyday.
    I'm sorry to hear that her tummy isn't looking well. :( She's fought so hard!!! My heart goes out to you all. I hope the lawyers can get SOMEthing done. *tears* I'm sorry. I'm 27 weeks pregnant as of tomorrow, and I'm just so emotional. I don't even know you're family or your little girl, at all, but my heart is full of lots of love for you all. God bless!
    Grow, Emmie, grow!!!
    -Maijken

     

  • At 9/17/2006 10:05:00 PM, Anonymous Anonymous said…

    Y'all need to take this story National. BLITZ the media - - it is your daughter's only chance.


    We can save kids in Belize thru publicity - - UNLEASH it here, Chris and Stephanie...


    Turn us all loose to ratchet up some exposure... If she dies, we tried - - but don't keep us silent.


    Let's get some media exposure on your sweetie.... She is holding up her end, let's get her every backup we can, eh?

     

  • At 9/17/2006 10:30:00 PM, Blogger Munkeesmama said…

    Thanks for the update, glad she is still holding her own, upset about her stomach. At this point takes tons of picture handprints, footprints etc. "Just in case" I am still not giving up on her and continue to pray. Keep on fighting baby girl until you can no more. I am hoping the contacts who I forwarded to you in email (hermyvoice and the editor of a detroit newpaper) have contacted you like they said thy would and perhaps that you have responded. Hugs to the family. emmie-rose has touched SO many lives in ways that none of us will ever be able to realize.

     

  • At 9/17/2006 10:34:00 PM, Blogger wheezeybouncer said…

    keep fighting ALL of you. i send out good thoughts to you and emmie-rose daily. she's a little treasure.

    geina x

     

  • At 9/17/2006 11:18:00 PM, Anonymous Anonymous said…

    Dear Stephanie and Chris and Sweet Emmie-Rose,

    I pray for you All everyday. You are such a special family. Precious Emmie-Rose is so Beautiful. She deserves to live.
    Stephanie and Chris please fight for her. You are her voice now so let everyone hear you. Please don't ever give up on her, because she's NOT giving up on you.
    I can imagine how hard it must be to listen to negative opinions, but you just listen to your hearts and keep fighting.
    I wait for your posting everyday. You have became part of our family.

    May God give you all the strenght, especially Emmie-Rose.

    GROW EMMIE-ROSE GROW!!!!!!!

     

  • At 9/18/2006 04:10:00 AM, Blogger Dawn said…

    Don't stress out over the negitive comments. You know your going to get them regardless. They aren't worth the extra stress. You all have enough stress to worry about.
    Love you all and hang in there Emmie-Rose!!! You grow girl!!!

    Love Auntie Dawn

     

  • At 9/18/2006 05:25:00 AM, Anonymous Anonymous said…

    For what it's worth Windsor Regional Hospital in Windsor, Ontario, Canada has an NICU. It's not a teaching center and the babies requiring care like this are transferred out to larger centers in Canada, but the neonatologists there, may offer you some idea's of their own. Call: 1-519-254-5577 and ask for Drs. Bacheyie and Nwaesei's office. God Bless.

     

  • At 9/18/2006 05:38:00 AM, Anonymous Anonymous said…

    Rob and I pray everyday for Emmie-Rose. Stay strong!!!!

    Hugs...Tammy and Rob

     

  • At 9/18/2006 05:57:00 AM, Anonymous Anonymous said…

    I continue to keep you all in my prayers. Russ the MPAS has been contacted. Believe me they are doing what they can to get the help Emmie so deserves.

    Love you all,

     

  • At 9/18/2006 06:26:00 AM, Anonymous Anonymous said…

    You are absolutely right that it is only Gods choice. She is still here for a reason. Only God knows what that reason is. He should be the one to decide when it is time for her to be with him (maybe not until she dies of old age), but for now she is supposed to be here. All of our prayers and thoughts are with you guys! YOU GROW GIRL!!!!

     

  • At 9/18/2006 06:50:00 AM, Anonymous Anonymous said…

    I am just sending you and your princess some ((HUGS)) and prayers. She is such a little fighter.

    Another Canadian Friend

     

  • At 9/18/2006 07:08:00 AM, Anonymous Anonymous said…

    I have just recently started following Emmie Rose's story - I can't imagine what all you have been thru and continue to go thru daily. I have information on a Children's Organ Transplant Association. Maybe they could help? The contact info is:
    COTA
    The Children's Organ Transplant Association
    2501 COTA Drive
    Bloomington, IN 47403
    1-800-366-2682
    www.cota.org
    Hope this info helps - I found it from a local benefit auction ad for a little boy that attends our church that has had an intestinal transplant at (I believe) Riley's Children's Hospital in Indianapolis, IN.

     

  • At 9/18/2006 07:19:00 AM, Anonymous Anonymous said…

    Have you tried the University of Iowa Hospital in Iowa City? I know they have a children's hospital, and if they accept you, they are a great hospital. Good luck, I hope your baby gets the help she needs quickly.

     

  • At 9/18/2006 07:27:00 AM, Anonymous Anonymous said…

    I didn't catch up on your posts and didn't read the other comments but my daughter Emma, born at 13 1/2 ounces (26 weeker although was a classic 22 weeker) was also "supposed" to die. I was given less than 1/2 percent chance that she would live. That continued for 3 months until they realized that they might be wrong. Emma will be 3 on Sunday.

    (BTW, Emma also had NEC (and e-coli) before she even reached a pound. They couldn't do surgery but they did put in penrose drains---they helped!! Can Emmie get these???)

     

  • At 9/18/2006 07:33:00 AM, Anonymous Anonymous said…

    Just wanted to let you know your family is in my prayers. I can't imagine how difficult and frustrating this is for you, you are both amamzing people. Keep fighting for that precious girl! Stay strong Emmie-Rose!
    God Bless

     

  • At 9/18/2006 08:11:00 AM, Anonymous Anonymous said…

    To Jane Perillo- Thank you so much for your encouragement and prayers!!! Thank you everyone!!! Hold your children and grandchildren close, love them, tell them about Jesus's love and faithfulness!!! I hope your little continues to do well. Yes Emmie-Rose had the penrose drains but were removed when surgery was done. she needs them now to take some of the fluid off but if course this is not happening. So much sorrow and hurt that we are feeling but so much love and joy we feel in the presence of Emmie-Rose1!!!We just are so humbled by the love and support we have found throughout the world!!! Please continue to pray the Lord's will be done always and that we are open and accepting of His will. We are trying to stay optimistic. I received the phone number of the scheduler of the Judge's calendar and begged her to move Emmie-Rose's case up on the calendar. Don't know if this did any good but it is a proactive thing to do. This sitting and waiting is a killer!!!! Thanks again for every prayer, good thought and comment you make. It helps to ease the negative comments, the long stare, the whispered conversations in the hospital hallway and the scurrying away of "little mice" whenever we come around. Pray for all the little ones like Emmie-Rose who have no voice---help us to stand and be their voice.

    Pam Brendtke Emmie-Rose' Nanna
    Oh yea & J, Z, A, M,and B's Nanna too--Please remember all my children and grandchildren in your prayers!!

     

  • At 9/18/2006 08:45:00 AM, Anonymous Anonymous said…

    Praying for Emmie-Rose.

    Have you tried contacting Focus on the Family?
    Focus on the Family Action
    8655 Explorer Drive
    Colorado Springs, CO 80920-1050
    (866) 655-4545 (toll free)
    (719) 278-4445 (fax)

    Amy

     

  • At 9/18/2006 08:46:00 AM, Anonymous Anonymous said…

    I dont know much about what kind of hospitals do what kind of surgeries, but they have a really really good hospital her in Des Moines Iowa, It is Blank Childrens Hospital. Here is what they have

    General Medical/Surgical Unit
    A 43-bed general medical/surgical floor is staffed by pediatric hospitalists and provides:
    - Access to pediatric pharmacists, dietitians, care managers and social workers.
    - Pullout beds for parents to stay overnight.
    - Meal selection kids like to eat.

    Pediatric Intensive Care Unit (PICU)
    The PICU features a 9-bed, all private-room facility that is staffed by pediatric intensivists. In addition, the Pediatric Transport Team provides critically-ill and injured children throughout the state access to a higher level of care. The Transport Team brings critical care expertise to children by a pediatric nurse who is under the medical direction of a pediatric intensivist or pediatric emergency medicine physician.

    Variety Club Intensive Care Nursery (NICU)
    In our all private-room, 35-bed Level III NICU, premature or seriously-ill newborns receive advanced care from neonatologists who staff the nursery 24-hours a day. Critically-ill babies are also transferred to the unit from across the state by our Neonatal Transport Team.

    My son was in the Variety Club Intensive Care Nursery and they were exceptional. Please try and contact them their website is
    Here is a link to the KEY CONTACTS PAGE
    http://www.blankchildrens.org/body.cfm?id=220

    I hope that you can read this, as I am sure that you get alot of comments, and email.

    Kami

     

  • At 9/18/2006 08:49:00 AM, Anonymous Anonymous said…

    Emmie Rose- I know you can hear this-

    May the long-time sun shine on you,
    All love surround you,
    And the pure light within you
    Guide your way on.

    Peace in the Power of the Spirit

     

  • At 9/18/2006 09:15:00 AM, Blogger Laura said…

    I am so sorry you have to experience the sorrow that comes with negative comments. You are so right in that no one will ever understand what you are going through unless they experience it themselves.
    Thank you for taking precious time out of your schedule to update us on how things are going. My prayers continue to be with you, and I hope with all my heart to hear of Emmie Rose getting the exceptional treatment she deserves.

     

  • At 9/18/2006 09:38:00 AM, Blogger Ann Borders said…

    Dear Stephanie and Chris,

    YOU ARE NOT ALONE. We are praying for you. Ann Borders

     

  • At 9/18/2006 09:40:00 AM, Anonymous Anonymous said…

    Keep fighting Emmie !!!! Thinking and praying for you and your family little one. So many people out there want to see you get better. Know that there are many people out there that care for you. You have touched the lives of many.

     

  • At 9/18/2006 09:43:00 AM, Anonymous Anonymous said…

    I am sorry sweet Emmie Rose is going through all this and I'm sorry you as parent's aren't being heard. I Wanted to drop by and offer my thought's and Prayers, Emmie Rose Is On The Prayer List At My Church. I also Wanted To Let you know I'm behind you 110%. I Lost My Godson To A U of M Dr's Negligence I Don't Want To See It Happen To Another Family. If I Can Be Of Any Help, Weather It Be Just Some One To Vent To, Or An Advocate For Emmie Rose, Plz Feel Free To Email Me @ TinkerbeIIe76@aol.com.....God Bless

     

  • At 9/18/2006 09:44:00 AM, Anonymous Anonymous said…

    I am praying for Emmie-Rose and for your family. You have the right to make decisions for your family! I had a 24 weeker, 537 gram baby 5 years ago, who was very ill and the hospital never once gave up on him! Stay strong!

    Susan

     

  • At 9/18/2006 09:58:00 AM, Anonymous Anonymous said…

    Wow, i just heard about your story and was informed and i think you as parents are doing so well. You keep fighting for that little girl. She is in my prayers, and God does do miracles. My friend Faith was told her baby wouldn't make it past birth. Her little girl is now 17 months old. I am a member on ivillage and here is a link to one of her posts if you would like some encouragement. http://messageboards.ivillage.com/iv-prplayapr05n/?msg=11035.1

    She and her family have been through so much and have never given up hope. Her 17 month old still can't walk or talk and eats through a tube, but in pics she has, she loves life. Here are some pics of her little miracle too.

    http://pg.photos.yahoo.com/ph/miraclefaith_2005/album?.dir=5620re2&.src=ph&store=&prodid=&.done=http%3a//photos.yahoo.com/ph//my_photos

    God bless, Shannon in Florida

     

  • At 9/18/2006 10:19:00 AM, Anonymous Anonymous said…

    I just recently introduced to your plight and wanted to let you know I'm praying so hard for Emmie-Rose and your family. My heart really aches for you.

    I've also passed your story to everyone I know. I also accidently passed your story on to Sean Hannity, before reading your post about the media hold. (He is a conservative radio talk show host and NewsFox TV show host.)

    In the comments I saw suggestions for other hospitals who may be able to help Emmie, so I thought I'd chime in.

    Children's hospital in Pittsburgh, PA is very good (taking care of a friend's baby who has some serious issues of her own).

    Also, Monmouth Medical Center in Long Branch, NJ is excellent. I had my son there, who had some problems, and they were wonderful.

    Again, praying very much for your situation.

    God bless.

     

  • At 9/18/2006 10:40:00 AM, Anonymous Anonymous said…

    Loving Parents,
    My church and I will be praying for your family. Be faithful to the lord and his will, he will reward you. he has a great plan that we cannot understand. be strong.

     

  • At 9/18/2006 10:43:00 AM, Anonymous Anonymous said…

    I am the mom of a formr 26 weeker. He was 1 lb 14 oz at birth. Today he is a happy and healthy 11 yr old. I feel the drs have the responsibility to inform you of all the potential outcoms and problems but after that it is the mother and fathers choice on what to do. Now in this case you want every measure taken to save the baby and that must be respected. If they do not do all in their power to save the baby then in my view that is a criminal action to which they need to be held accountable. I hope you have a good laywer and get your baby moved to a differnt hospital quickly. There is a dangerous precdent being set here for the care of future preemies and the rights of parents to seek proper medical care for their infants without drs feelings on treatment overriding that of the parents. I am so glad when i delieved 11 yrs ago my choice to pursue aggressive life saving treatment was honored. My prayers are with you and never doubt you have the right to have your child receive the best medical care available. Get as much media involvement as possible to be sure your voice is heard and the public is aware U of M is playing God with a child life. It sounds lik your baby is a fighter. a NICU nurse once told me sometimes the kids we think are least likely to make it prove us wrong. Your baby sounds like a fighter to me!! I will continu to follow your childs journey
    best wishes from one preemie mom to another
    Michele
    mom to a former 26 weeker now 11 and healthy!

     

  • At 9/18/2006 12:04:00 PM, Anonymous Anonymous said…

    I am in missouri and was given a link to your story from one of my online communitites.
    I am so sorry for how the dr's are treating your precious baby girl and your family.
    It does not seem right that they can make those decisions with out your consent. I agree with the media and taking it nationally. We have excellent hospitals here in the Kansas City area and I would think that if you got it on a national news program you could get help for your dear daughter.
    I will be praying for your Emmie Rose and I pray that a dr/hospital will provide the care she needs to grow baby grow.

    Kelly L.

     

  • At 9/18/2006 12:04:00 PM, Blogger Sheri said…

    You are in my thoughts.

     

  • At 9/18/2006 12:59:00 PM, Anonymous Anonymous said…

    I just wanted to say that you are all in my prayers! I had a 26 weeker, Xander that lived in NICU for 10 days. He was 1 lb. 6 oz. 12 3/4" long. We took him off life support and listened to the advice of Dr.s...a decision I regret and can never take back. I so support your decision to keep Emmie Rose on life support. I am sorry that you and your family are going through this...I hope my words have not upset you. I only wish to comfort. I pray that you win your fight to keep your little girl alive. I will share your story hoping, someone can help. I have a myspace page if you ever need anything...http://www.myspace.com/suz_e_q. God Bless!

     

  • At 9/18/2006 01:04:00 PM, Anonymous Anonymous said…

    Dear Emmie-Rose,

    So fragile, but with the strength to move mountians in order to stay.

    So young, but with the ability to lead a fight from day to day.

    So tiny but with the power to touch the world in a huge way.

    So helpless, but with the courage of a lion, the heart of a lamb, the smile of an angel, for you I pray, every day.

    ~Kris Potter

    Visit Emmie-Rose's MySpace page at http://www.myspace.com/thetiniesthero
    If you don't have an account, they are free, and easy to get.

     

  • At 9/18/2006 01:25:00 PM, Anonymous Anonymous said…

    There are a few hospitals that might do an intestinal transplant.Look online. TPN could last for years, certainly until she could be assessed by one of these hospitals.

     

  • At 9/18/2006 02:58:00 PM, Anonymous Anonymous said…

    Precious Emmie-Rose. I hope you are doing well today.
    I don't understand why you are not getting the help from the Dr's that you deserve. You need to have those drains in, so that your body has a chance to fight, as it's trying to do right now.
    Imagine what potential progress has been lost these past two weeks as those Dr's (who are supposed to save lives!) did nothing to assist you on your obvious quest for life! Who are they to determine your outcome?
    I pray that you are getting TPN, and the blood products that you need to be strong.
    Grow, baby girl, grow. You are here for a reason.

     

  • At 9/18/2006 06:02:00 PM, Anonymous Anonymous said…

    I wish I knew who to get to help you out!! This is so horrible that they are refusing medical treatment to her... Its a major fight for a spouse to pull his braindead wife off of a feeding tube but they give up on a sweet innocent baby who is an obvious fighter like it is nothing, what a shame to our society!! I'm on Emmie-Rose's side and pray for her!

     

  • At 9/18/2006 07:49:00 PM, Anonymous Anonymous said…

    Continued prayers for Emmie-Rose!

    Angie

     

  • At 9/18/2006 08:26:00 PM, Anonymous Anonymous said…

    Dear Chris Stephanie and boys,

    My heart breaks with all that these drs are putting you through. Emmie Rose is a beautiful baby who is fighting daily. Keep fighting.. Dont ever give up hope.. Our family continues to pray for Emmie daily as well as for your family. Many hugs and love sent your way. My Bri was born at 32 weeks and she was classified as a 28 weeker because she was so small. she is now a healthy almost 7 yr old. Keep your faith and hold your head high. You all have not only been touched by an angel but you also hold one daily.

    If we can do anything at all please email
    brianasmom00@yahoo.com

    The French Family..

     

  • At 9/19/2006 12:57:00 AM, Anonymous Anonymous said…

    Emmie Rose continues to be in my thoughts.

     

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