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...

Friday, September 15, 2006

Sep 15 - After Court

Let’s give a warm and fuzzy welcome to all the daily readers that are now reading our blog from the U of M.

We did go to court Friday.

Does Emmie-Rose have what she needs?
Not currently. :(

There is still open dialogue going on between both legal teams.

Now that a certain other legal team is reading this blog as well,
I can not be as verbose as I would like.

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Media requests are being handled by Emmie-Rose’s Attorneys:
Moran, Raimi & Goethel, P.C
Stephen Goethel
320 North Main Street, Ste 101
Ann Arbor, MI 48104
(734) 769-6838
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Emmie-Rose is still holding her own. Her heart rate has dropped the past few days and her color is pale today. She has not had any of the things she needs now since 9/11/06.

The outpouring of emails and posts has been wonderful.
We appreciate all your love and support for our little girl!!!!

Pray that the Lord give Emmie-Rose strength.

Baby girl, Mommy and Daddy know how hard you have been fighting, we are trying just as hard on our side to help you!

All our love,

Chris and Stephanie

35 Comments:

  • At 9/15/2006 09:42:00 PM, Anonymous Anonymous said…

    It costs them nothing to allow Emmie-Rose to be transfered. The only reason I can see for them not allowing them to do that is pride and arrogance. They might be proven wrong. I say if they let this little angle die go after them for all you can. The doctors take an oath when they become doctors, but I guess these docs skipped that step.

     
  • At 9/15/2006 10:15:00 PM, Anonymous Seaboard said…

    Why are her doctors SO convinced she would die? Is her condition such that even a transplant wouldn't repair the intestine (in their opinion)? Is there anything else going on that is impacting their decision (like an additional medical issue)?


    Yes, money rules at most hospitals - - BUT DRs are people, too, and they are loathe to throw in the towel if there is a decent chance out there. WHY are the docs at this hospital so reluctant to try aggressive measures?


    I feel for you all, but my rational side is thwapping my emotional one saying 'what are the Docs afraid of? There MUST be some biggie they are afraid of..." Have they verbalized that yet?


    Check out Duke in NC - - maybe they can help.


    (At this point, I'd be tempted to ignore your atty's advice and I'd get this story national..... But I am confrontational by nature :) )

     
  • At 9/15/2006 10:21:00 PM, Anonymous Anonymous said…

    You Grow Emmie-Rose!!!

     
  • At 9/15/2006 10:29:00 PM, Anonymous Anonymous said…

    I'm sorry if I'm just dense, but I don't understand the medical issue. Did they find in the surgery that she doesn't have a small intestine? Or did they have to remove the small intestine (or a part of it?) in surgery?

    I'm sorry you have to undergo this stress and trauma. I am praying for peace and comfort and good decisions all around.

     
  • At 9/15/2006 10:37:00 PM, Blogger Momma Faye said…

    I just heard about and read your story. My heart goes out to your family. You and your precious little girl will remain in my prayers. I'm not sure if I can help, but I can try. My triplet sons were born at 23 weeks. I know where you are. I have had to let go of 2 of my boys. I've been looking at the pics of your little girl, she is beautiful. My surviving son was not supposed to live, and if he did, he was supposed to have a poor quality of life. He was vented for almost 5 months, and in the NICU for almost 6. He is 2 and a half now, and doing just fine. He's proof babies born this young can survive, and live wonderful lives.
    I am sickened, and outraged at what is happening here. Please, if there is anything I can help with, you can reach me at mylostboyz@yahoo.com

     
  • At 9/15/2006 10:43:00 PM, Anonymous Anonymous said…

    Ok. So the Doctors at U of M can't help Emmie-Rose. Thats fine, but to say that they know everything there is to know and no one else can help her is arrogant. They are not God! They are not all knowing and to not allow anyone else to try is wrong and a sin in its greatest form and should not be allowed to continue. By allowing her to live she can have a chance no matter how small and there is always a possibiliy that maybe just maybe another Doctor could find a way of helping her if she lives that long thanks to U of M.

    "You will not tell me what to do." is the only reason I can see for them not to relinquish control of her.

    If that is the case, it is a sad day for humans.

    This angel is fighting the only way she can as hard as she can. She is not some animal that when its sick you take out to the back forty and shoot. If an animal was sick and we decided to starve it to death to save it pain and misery we would have the ASPCA all over us.

    We put Dr. Jack Kevorkian in jail for helping people die who wanted to. Now U of M is saying we don't have a choice and are trying to kill this angel not knowing if she wants to live or not and I would say she does want to live by how hard she is fighting to stay alive. Her parents definitely don't want her to die. This is no different than what Dr. Jack Kevorkian did, so should we bring them up on criminal charges? Euthanasia is supposed to be illegal but that does not seem to stop them.

    I say feed this girl and to continue to help her live until the parents say otherwise. What harm will it cause.

    They said that transferring her to another hospital would not be in the best interest of the child. How can starving her to death against her parents wishes be in the best interest of the child as well. If they transfer her and they are right she will still die, but if she stays where she is at currently she will die for sure because they are starving her. The only difference is whether care enough to try and save her life.

    After reading all that has taken place I know that I will never set foot in that hospital as a patient. I would rather die than to let them touch me because that as ill as I am they would have already starved me to death.

    My love and prayers go out to Emmie-Rose and I pray the courts are wise enough and quick enough to help this angel of a girl.

    Russ

     
  • At 9/15/2006 10:47:00 PM, Anonymous Emmie's 2nd Cousin Kris in Florida said…

    To the person who asked what the medical issue is....in surgery, they found that (I don't know the reason, possibly because she was born so premature) she doesn't have a lower instestine, or "it is gone". The doctors at this hospital threw in the towel and gave up on her. The family has been fighting to have her transferred to a location where they can possibly do an intestinal transplant for the baby. There are only a handfull of places that have the equipment and know-how to do the proceedure. But it also appears that the doctors that threw in the towel on Emmie might have been talking to all the other hospitals and convincing them not to take her. In the meantime, they have not been feeding Emmie the special forumla she needs in her feeding tube. They are starving this child that has been fighting so hard to live. They are going to starve her to death! They have even ignored the legal demands made on them by the court to resume care and treatment for this child. WHY do they want this child to die?? Is it thier pride and arrogance and desire to not be proven wrong like someone else said?? To the doctors and thier legal team.... PLEASE GIVE EMMIE HER FIGHTING CHANCE TO LIVE!! THAT CHILD HAS FOUGHT SO HARD TO COME SO FAR . . . SHE DESERVES A CHANCE AT LIFE! PLEASE, PLEASE, FEED AND NOURISH THAT BABY! AND PLEASE ALLOW HER A TRANSFER TO A FACILITY THAT WILL ATTEMPT A TRANSPLANT FOR HER!

     
  • At 9/15/2006 10:50:00 PM, Anonymous Anonymous said…

    My thoughts and prayers are with you Emmie-Rose! You hang in there and grow!
    (JL friend of Dawn)

     
  • At 9/15/2006 11:00:00 PM, Anonymous Frances/Johnsmom said…

    Please, for her sake, U of M, restart the tube feeds! My son is perfect proof that you do not know all, why not just offer them the chance to try to keep her going till transplant can be done??? I am sickened and glad he is not there right now. Mom to a 28 weeker who they said would never survive!

     
  • At 9/16/2006 02:36:00 AM, Anonymous Anonymous said…

    I am appalled that the hospital continues to withhold care from this tiny fighter.

    It seems to me that Emmie-Rose and her parents have, as a basic civil right, the opportunity for an unbiased second opinion.

    I will continue to keep Emmie-Rose and your family in my thoughts and prayers.

    And finally, I agree with what one of the other posters said, get the media involved. I think the public has a right to know how and why such a decision has been made.
    Susan

     
  • At 9/16/2006 04:26:00 AM, Blogger Khyricat said…

    If the hospitals people are truly reading this.. and they know of some reason that either Chris and stephanie don't know or haven't posted as to WHY this shouldn't be done medically- please let those of us who know and care about them know!

    On the other hand, if they are doing this out of spite, finances or just a refusal to admit they might be wrong- which seems to be the case- They need to reverse their decision, I am sure with the other hospital having been willing to take her until you made decisions behind her parents backs, that there is something else going on here.. and I for one between this and an experience I had there 11 years ago NEVER want to be in that hospital again and will never recommend it to anyone...

    Starving a child that has a chance at life, however small and WANTS to live is just not fair, neither is removing ANY other treatment she needs to live.. had NYU medical center done that to me 35 years ago I wouldn't be here today and I was born early enough that in that era I was not expected to survive... but survive I did! and I am in probably just as good a shape as I would have been otherwise- both my major health issues are genetic and carried by other family members, not a result of being Preemie!

    Amie

     
  • At 9/16/2006 05:11:00 AM, Anonymous Anonymous said…

    I just saw emmie on the news in Chicago! Please know that a family of complete strangers is praying for your entire family here!
    You are in our thoughts, hearts and prayers.

     
  • At 9/16/2006 05:16:00 AM, Anonymous Anonymous said…

    OMG, I am praying for you all.
    I am just sickened by this. Can they reroute a portion of the large intestine? Why does she not meet criteria for the transplant?
    Have you contacted Channel 4?
    Please someone, do something for this little girl.

     
  • At 9/16/2006 05:42:00 AM, Anonymous Anonymous said…

    I just had my little girl and i couldnt even begin to imagine how you guys feel. I dont see how those Dr's can go home and sleep at night. I want to cry when i think of how hard Emmie-rose has been fighting and they are starving her. Just know you have ALOT of ppl out there hoping and praying that something is done. Is this only in your local media?? This should go nation wide. Grow baby gril and fight and show those Dr's they need to go back to med school. Fight baby girl fight !!!

     
  • At 9/16/2006 05:44:00 AM, Blogger Mazenbloo said…

    Saw the news made the front page of today's paper that was on my doorstep. Here is a link to the online one.
    http://www.mlive.com/search/index.ssf?/base/news-19/1158388950317150.xml?aanews?NEA&coll=2

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

    I am just heartsick they are not giving Emmie what she needs. My continued prayers are with your family. I need to go help my parents in another state and do not want to go because I will not have access to see how Emmie is doing. If I did not have to go I wouldn't. I read the article in the paper and hope that it will help with getting a positive reaction from the hospital.
    Blessings and Prayers
    God Bless You
    Mara Lopez

     
  • At 9/16/2006 06:33:00 AM, Blogger nancy said…

    vb

     
  • At 9/16/2006 06:38:00 AM, Anonymous Anonymous said…

    My prayers to all of you for little Emmie-Rose.

    I cannot understand how they can just write here life off the way they are - to me is seems like they are trying to cover their butts!

    I have snet your story on to Rosie O'Donnell who is now on The View - Maybe she can help getting you the national media attention you need.

    Prayers for Emmie-Rose and family

     
  • At 9/16/2006 06:39:00 AM, Blogger nancy said…

    Mom and Dad, DO NOT Quit fighting for Emmie-Rose. I am the mother of a 23 weeker born 12/9/01 she weight 1 lb 3oz at birth. It seem that she encounter so many problems, but I never gave up and THank God the doctors never gave up on her. She is now almost 5 and doing great. I know the road is long and rough, but you must keep the faith. If I can do anything for you please feel free to contact me. Do not let the doctors discourage you fight with all your might. There are doctors out there that would fight with you and for you. GOd Bless and hang in there. I will continue to check on you.

     
  • At 9/16/2006 07:54:00 AM, Anonymous Jessica said…

    Just wanted to say that I am still right here praying for Emmie-Rose; Good Morning little princess, keep fighting, Everyone is right here fighting for you... Chris/Stephanie I may not know you but what you are doing is great keep on fighting for that beautiful baby girl and know that in the long run there are many people Nationwide who have your backs... Sending lots of hugs and prayers to Emmie-Rose and her Parents!

     
  • At 9/16/2006 08:11:00 AM, Anonymous Anonymous said…

    I know this isn't what I'm "supposed" to post here, but sometimes you have to say the truth in love. How can a child without an intestines digest any food and therefore live/grow? She can't. The doctors know she will starve to death naturally, which is why they feel it is ethically inappropriate to prolong that death. These decisions are agonizing, but would you rather have your loved one die peacefully or in the midst of a legal battle and media circus? Lawyers can't help poor Emmie-Rose, and without them you could focus on the time you have remaining with her and saying goodbye. It will be heartbreaking if she passes away while you are in meetings with lawyers rather than by her side. If you feel your lawyers must fight for this, please let them do all the fighting for you. Spend your time at her side and with your family. I'm praying for all of you.

     
  • At 9/16/2006 08:20:00 AM, Anonymous Anonymous said…

    My heart goes out to Emmie-Rose and her parents. If there's anything locally we can do to help please post on this blog. People want to help you. We are praying for your family.

     
  • At 9/16/2006 08:29:00 AM, Anonymous Pam said…

    Someone asked - I know this isn't what I'm "supposed" to post here, but sometimes you have to say the truth in love. How can a child without an intestines digest any food and therefore live/grow?

    It's not that she doesn't have any - a post further up explains the current condition of her. She's missing some of her intestines, not all. There is a transplant procedure that could happen to save her, and according to the articel in the Ann Arbor News - http://www.mlive.com/news/aanews/index.ssf?/base/news-19/1158388950317150.xml&coll=2 - and I quote - Necrotizing enterocolitis is not uncommon in premature babies and causes the bowel tissue to die, according to the National Institutes of Health. The condition has a death rate of almost 25 percent.


    So there IS a chance she could live. I know people who are living without parts of their intestines. This precious little girl is fighting for that chance to live. It's a shame that doctors aren't fighting for her also. It's horrible to think that they aren't even feeding her anymore. If they want to wash their hands of her, fine, but at least allow the transfer.

    Really, this should be a warning to women who might give birth prematurely here in Ann Arbor - I for one would never want to give birth at U of M now.

    Our prayers are with this family!

     
  • At 9/16/2006 08:31:00 AM, Blogger munkeesmama said…

    Still praying and hoping all the contacts i emailed will come through, or just a few of them. ann Arbor was one of them as well as a few others. Her story is getting out and there may be a Dr. ballsy enough yet to do the transpant she needs for survival!!!Keep on fighting Emmie!

     
  • At 9/16/2006 08:47:00 AM, Blogger Laura said…

    My nephews were born at 24 weeks gestation (twins), and I know how hard preemies will fight given the chance. We lost Jacob to renal failure, but Asher is still fighting hard. We were told when Asher was two weeks old he wouldn't live through the night because he lungs were (are) so damaged. This weekend, at 4 1/2 months, they are about to extubate him. I pray with all my heart your little angel is given the chance she deserves to continue proving the doctors wrong. If you need someone to talk to, please do not hesitate to contact us at anytime (www.caringbridge.org/visit/asherandjacob)

     
  • At 9/16/2006 08:58:00 AM, Blogger alicek131 said…

    I hope the U of M "un-ethics" committee, will listen to the parents of Emmie-Rose. How ethical is it to go against the parents? If the parents want to try heroic life-saving measures...why won't U of M just feed Emmie-Rose, give her blood and let the parents talk to and request help from other hospitals. It is clear U of M has given up on Emmie-Rose...but, can't they see no one else has?

    To the U of M lawyers and ethics committee: give this baby formula and blood and help these parents get her transferred. You may have seen see this type of "incurable" condition in your NICU and may also predict the outcome...but, who are you to say that the parents have to listen to you???????? It is their child. If they want to fight for her life...LET THEM!!!!!!!!

     
  • At 9/16/2006 02:11:00 PM, Anonymous Anonymous said…

    People can live without part of an intestine, but can they live with NO small intestine? That's the one that absorbs nutrients from food - not the large intestine. But I didn't realize they could do intestine transplants. Amazing.

    I pray for peace and comfort for Emmie Rose and her family.

     
  • At 9/17/2006 11:39:00 AM, Anonymous Anonymous said…

    To the anonymous comment that started out i know this isnt what im "supposed" to post here...
    The decision of Emmie-Rose dying or living should not be in the hands of these doctors, they dont care. They have had chances to "wash" their hands of her and have denied that. U of M is saying that the demand of a second opion has been met but that is bs!!! The "ethics" commitee wont allow that and I just dont understand. She was given a 20-30% chance when she was born and look 2 months later she is still here and fighting!! The decision of when she goes to be with God is His and His alone!! We are all still praying for her and that she will get out of the awful place!!

    Much love, Jayme and Amy

     
  • At 9/17/2006 07:03:00 PM, Anonymous Anonymous said…

    To "Anonymous" who knows "This isn't what should be posted here":

    We know who you are and where you are from. Why not post your name since you are so anxious to give your advice?

    Who are you to judge us??? We did not choose this situation. We have made our peace in all areas of our lives with Emmie-Rose's care and know that fighting for her is the only choice. This situation has been forced on us by the U of M. We do not choose to be away from Emmie-Rose in any way and for you to say these things is both unkind and untrue. Why not just come to us and say what you have to say face to face instead of through an "anonymous" e-mail??? May you never have a situation happen in your family like this. Just the fact that you felt lead to message us in this way shows that you lack compassion and caring. I thank God that Emmie-Rose has the love and prayers of many others in her life. Who are you to judge the peace and understanding, the love and the caring that surrounds Emmie-Rose???Due to the situation, we are prepared whatever the Lord decides and delivers to us. Emmie-Rose is our precious gift and for that we are ever grateful. You say this is said with "love"-if it were in love you would have told us face to face. Please pray that you can live with the words you wrote.

    Pam Brendtke Emmie-Rose's Nanna

     
  • At 9/17/2006 07:36:00 PM, Anonymous Tara said…

    I was sent a link to your blog and your story breaks my heart! I am keeping Emmie-Rose and your whole family in my prayers. I had a baby in the NICU and I remember how hard that was but can't even begin to comprehend how horrible it would be to have the treatments my baby needed right there but having doctors refusing to administer them.

    To the doctors - What is wrong with you?? Isn't your first duty to do no harm? I don't know how you can convince yourself that starving people to death is doing no harm and morally correct. This baby may not make it but that's in God's hands. Last time I checked doctors are not God!

    And to the coward anonymous poster who started their post "I know this isn't what I'm "supposed" to post here" I can say with 100% certainty that you too will die one day. So why keep eating, you're just prolonging the inevitable? How dare you come to this site and post that.

     
  • At 9/19/2006 09:23:00 AM, Anonymous Anonymous said…

    God is not the one who has kept this baby alive, MAN is. Babies born at that gestation do not live without aggressive medical intervention....and even with that, most die anyway. It's very sad but perhaps God spoke when the baby was born, and was calling her home then.

    You cannot live without an intestine. For all the posters who say to feed her and give her formula, where do you suppose that formula should go? It's my understanding she has no intestine for it to go to.

    I don't work at UM, but I can tell you I've never met a doc in an NICU who didn't agonize over every decision he or she ever made regarding a baby. Sometimes, the right thing to do, is to let a baby go peacefully, rather than prolonging the agony. I know it's very hard, but everyone needs to put the BABY first, not themselves.

    UM can't stop this baby from going anywhere. If there is an NICU that will truly accept this baby, she can go...but the problem seems to be, that everyone knows this is futile, except the family.

    I feel so bad for the family, but I feel much worse for the baby.

    I also feel badly for the medical team who probably isn't allowed to post here or defend themselves because of HIPAA and the impending lawsuit. They are being bashed by a bunch of people who have no idea what the true story is.

     
  • At 9/19/2006 06:47:00 PM, Anonymous Tara said…

    Ah, Anonymous again. Here's my question to you, if she can't live and she's going to die anyway, what's the harm in giving her food and nutrients? All that anyone is asking is that she not be starved to death by her own doctors. The parents said that they were told by her doctors that she would be gone in 2 days at one point and that they accepted that, but here she is still fighting and they don't know why. Do you want to know why they don't know? Because doctors aren't God! They don't have all the answers. So why stop her care when she's doing so well?

    I'm sorry, but her doctors deserve to be bashed. They don't care about Emmie-Rose, they were wrong about her and that makes them look stupid so they want to throw in the towel.

    Lots of prayers to Emmie-Rose and her family!

     
  • At 9/19/2006 09:16:00 PM, Anonymous Anonymous said…

    Because if your gut is dead you cannot have food. Doesn't work. You can have TPN, which is intravenous food, but it requires an escalation of care and destroys the liver, which leads to an even more PAINFUL death than she is probably already enduring. It requires a lot of IV pokes, serious IV Lines, lab draws, etc that are not comfortable, and it does not fix a darn thing.

    Just because a doctor guestimates death within 2 days, and that doesn't happen, it does not make that doctor an idiot. Sometimes death takes longer, and sometimes also, that is unfortunate. Death isn't always a nice, easy, angelic experience. Sometimes it is excruciatingly painful, and giving TPN will only prolong the pain of a baby who CANNOT live long term. It sounds like it is time for these parents to make the tough decision for their daughter, and remove her support out of LOVE for her. And it's my understanding that this baby is still on the ventilator. GOD DID NOT PUT EMMIE ON A VENTILATOR...the doctors did. This "God wants this" stuff is unbelievable to me. Emmie wouldn't be alive at all if it weren't for the doctors. She would have been born, and gone to heaven much much sooner...

    Doctors and nurses don't work the long hours they do, and endure the sadness they do, to purposely kill people. "First, do no harm" means just that. DO NO HARM. Prolonging the agony of a sweet baby in a futile situation, so that the parents can feel better about themselves is not FAIR to the baby.

     
  • At 9/20/2006 06:15:00 AM, Anonymous Anonymous said…

    Anonymous,
    I don't think people would disagree with much of what you're saying, but it's *totally* lost in manner in which you say it. You're saying the doctors final say is above the parents. This is a situation where the parents rights did not hold any weight. Seriously, who among us is 'ok' with an 'ethics' committee (not even a well-rounded one at that) that decides on your behalf as a parent that your child will die essentially of food starvation? I don't think any normal, loving parent would consent to their child being starved.

    One other thing, I don't think your insensitivity is appreciated here. While you might speak your own truth, you need to realize the concept of 'there's a time and a place' and right now the family is mourning. I would ask on behalf of the family that if you want to disagree, do so in a manner that doesn't refer to their daughter's intestines as 'guts' and pretending to know the parent's feelings on this issue (Prolonging the agony of a sweet baby in a futile situation, so that the parents can feel better about themselves is not FAIR to the baby.). This is so far out of line, that if the parents are able to delete posts, I would suggest that yours go. (mine too since I'm responding to you and not directly to them)

    Modern medicine and God work together to save lives - last I checked a ventilator is not a violation of God's plan - depriving someone of air or food while you try to find a solution is NOT working against God.

     
  • At 9/20/2006 08:17:00 PM, Anonymous Anonymous said…

    I am a little confused as well. Was her entire small bowel gone, and did you want to transfer her in the hopes of receiving a transplant? Because in my understanding that has never been done with these babies. THAT is why the doctors are convinced that she would die; because probably every other patient has that outcome.
    I must also say that using the term "starving to death" when her TPN was stopped is inappropriate-that is an IV fluid. I would be surprised if they were feeding her formula orally in her sick condition (no small bowel!). They are stopping food because her body is not equipped to cannot handle it.
    If oral feeding was stopped without explanation or If you were stopped from transferring the patient to another willing hospital I am sorry about that; I know you would want to try everything possible. I just wanted to add that there are other sides to the story; and doctors don't always make decisions because they are cruel; but they do need to involve parents in decision-making. I would hate for this to become an us against them issue, especially because neonatal issues are complex and usually not known by the general public.
    It's a hard situation; and as a NICU nurse it breaks my heart for all sides. I just pray that the peace of God, which passes all understanding, is with you.

     

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