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...

Saturday, September 16, 2006

Sept 16th -- The Craziness of it All!!!

Okay Everyone,

So I am here for a minute to give a brief update on how things are going around here. I dont post much anymore as I see no need to waste time online nor do I have much time to do so anyways as Emmie-Rose as well as ALL Our Children need Us. U of M is definitely taking a toll on Us as a Family. I have a 6 yr old wondering Where Mommy is all the time (who JUST started school on top of Everything, the BIG 1st Grade). As well as My "twins" 2 1/2 and 3 1/2 arent used to being Everywhere but with Mommy most of the time. I am not one to be in the "LIMELIGHT" of things and I am NOT an "ATTENTION GETTER", Im just a Loving Mommy fighting for What is Right for Her Child. Some may not understand (as MOST do NOT know the entire story of Emmie-Rose in depth) that this isnt right to keep fighting for Her, I have to say that You don't understand, Emmie-Rose is fighting for Herself, We arent forcing Her (if that even makes sense). There is a reason She is still with Us, and Only God knows why. I talk to Emmie-Rose all the time, and I tell Her "Its okay if You need to Go Now, You are a True Fighter and Mommy Loves You". As for those of You with opinions of what You would do differently in this situation, please understand that it is VERY EASY to say"I KNOW WHAT I WOULD DO", but until You walk in My shoes for a minute, You will NEVER KNOW exactly what You would do. I do NOT wish this situation on Anyone. I never knew I had to fight to keep My Child alive until now.

Everyone sees a "PERFECT LIFE" as the best Life. Our Society today is Very Rough on things that arent "PERFECT" in their Eyes. We see Emmie-Rose as "Perfect no matter what differences She may have". We have been asked My Doctors, "Are you sure You want to deal with all of the imperfections done the line"? (not exact words but same question posed). Also, Opinions again have been given by U of M "If it were My Child, I would not fight". Once again, giving an opinion on something No One can answer til they are in Our Shoes. The term U of M uses frequently is "Quality of Life', What EXACTLY IS Quality of Life?? Does anyone REALLY know?? Everyone's interpretation of statements are different and We disagree with their interpretation.

I want to personally Thank Everyone who has read the Blog, responded by email, or comments, phone calls, visits to Emmie-Rose (She LOVES PEOPLE), and many other things that have been done.

Though We cannot personally email Each and Every Person who has offered Support, Chris and I want You to know that We really appreciate all the Loving and Caring People out there. We never realized just How many Lives Emmie-Rose would affect and how many people would truly love and appreciate Her for who She is.

We are still looking for a Doctor to take over Her case and give Her the Love, Care, Respect and Dignity that She has DESERVED since Day 1. NO ONE is going to take that from HER. We understand the situation FULLY and realize there is a HIGH chance of Emmie-Rose Passing Away someday, But only God can decide when that Time will be, NOT MAN.

We still ask for Prayers from Everyone that God will have the FINAL SAY, and Not MAN.

YOU GROW GIRL!!!

Keep PRAYING!!!

Love,
Stephanie and Chris

posted by Stephanie @ 11:54 AM  

66 Comments:

  • At 9/16/2006 09:04:00 AM, Anonymous Anonymous said…

    Children's Mercy Hospital of Kansas City Missouri has a NICU and we get 23 weekers quite frequently, and IMO, I think that many of them go home. (Not to get your hopes up or anything, I don't know your case.) But you can reach them at 816-234-3300, and ask for the Fellow.
    I don't know what her condition is, I don't know if she can be moved ,but Children's Mercy has a plane to come pick up kids that are far away, but it all depends on her stability.
    God bells and good luck.

     

  • At 9/16/2006 09:25:00 AM, Anonymous Anonymous said…

    It's easy for people - even doctors - to armchair quarterback. "Oh, if this were MY child..." But she isn't. And most people haven't been in your shoes. My daughter isn't perfect by society's standards, but to us, she is perfect the way she is. So I know where you're coming from with that.

    It is so easy for the medical community to give up on people b/c they're seen as "not worth saving". They forget the lines from the Hippocratic Oath -

    I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

    I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

    I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

    I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty.

    Above all, I must not play at God.

     

  • At 9/16/2006 09:33:00 AM, Anonymous Anonymous said…

    I am so confused as to how a child can survive this long without a small intestine? If you get time could you post about what 'happened' to the intestine? Was it the infection that ate it away? Are they totally positive that she has none, can they not double check through an MRI or ultrasound of some sort? I just can't figure out if she is truly missing her intestine as they say that she has survived this long. Honestly, could they be wrong? Could you ask for them to double check there at THAT hospital?

    It is a very tragic situation. I have prayed and prayed for you since I read your blog the first time. I have a special needs child and wouldn't trade her for the world, and no, they have NO right to decide for you what to do.

    Hugs and many prayers

     

  • At 9/16/2006 09:42:00 AM, Anonymous Anonymous said…

    I have posted your story on my own Blog and provided the links. I second those who recommend the Atlanta hosptials...they are great...

    Don't get down from those who tell you to give up hope... know that you are being uplifted to the throne of God by many many hands.

    I have been checking your blog since it was posted on one of my message boards...and will continue to check it.

    God Keep you and your family. Special prayers for your other children...for their understanding during this difficult time

     

  • At 9/16/2006 09:46:00 AM, Anonymous Anonymous said…

    Stephanie,
    I completely and totally understand everything you said. Yes it is very easy for others outside of this situation to have their opinions. But unless you have lived it and are going through it. It is better to keep your opinions to yourself.

    I have 2 awesome and wonderful boys who both are on the Autism spectrum. If anyone were to say but what about the quality of their life back when they were younger. I would be furious. My baby is on the Saline football team , his first year offensive linemen. My other son in High school and you would never know his disability. I also co-own a Specialneedsparentsgroup. Many of the members have heard similair stories of Dr's not giving them any hope for a bright future. Every child is a gift from god. WE all have imperfections , but no one has the right to decide if we have the right to live but God. I have friends who's children were never to walk talk their quality of life was grim. Today they do all plus more. A friend who's daughter was 1 lb at birth. She was at Detroits children's hospital. Yes she has a disablity but she had the right to life. She is a beautiful and precious child. Oh whom has the voice of a angel when she sings.

    It infuriates me when people give up on children and those who don't quote fit into societys idea of normal.

    It is time for all of us to stand up and be heard. Stephanie and Chris you fight that fight and don't turn back. God gave you this child and if he wanted her he would take her. She has a reason for being her and a purpose. Lets allow her to live it.

    So you turn your head on all them posts who make you feel as if you are doing something wrong and keep fighting. One day at a time one minute at a time. I see your sweet beautiful child. She is perfect in my eyes and that is all that matters. All of us who have had the imperfect child can say we are so blessed to have been chosen to be their parents. I would not change a thing in my boys.

    I keep you all in my prayers. (((((((((((hugs)))))))))) to you and your children. It is so hard when they don't have mommy around.

     

  • At 9/16/2006 10:11:00 AM, Anonymous Anonymous said…

    May god bless your family, especially little Emmie-Rose. She is obviously a very special little girl! To those drs that tell you not to fight - they obviously have never been in the position you are in. My son had NEC (and 1/2 his large intestines removed) and is fine now, but if he would have the complications your little one had, I would only hope that I would have had the strength your family has!
    Hang in there and keeping fighting! May god bless you!

     

  • At 9/16/2006 10:33:00 AM, Anonymous Anonymous said…

    I don't know how the courts can wait until Wednesday to do anything. How much more fight can they expect Emmie-Rose to put up. I'm not sure I would be able to go as long as she already has and now they expect her to go longer? The problem now is not to get her transfered but to keep her alive long enough for the courts to resove the issue. I fail to see why they did not order an emergency injunction against this hospital. What harm would it do to the hospital to feed this little girl until then but not feeding her may render the situation moot. A great injustice has been done to Emmie-Rose by our court system. Does our court system expect her to drag herself out of bed and into the court house to show them how much she wants to live? That's like someone having an artery cut and the doctors saying let him wait till Wednesday to sew him up. If he really wants to live he will still be alive and won't bleed to death.
    It really makes me wonder where this world is headed.

    Love and Prayers

    Russ

     

  • At 9/16/2006 10:39:00 AM, Anonymous Anonymous said…

    A MySpace Page for Emmie-Rose

    The page has only the bare nessesities right now...I will be adding to it little by little as I can. If you have a MySpace, please send an add request to Emmie's Page. If you don't have a MySpace...it's free and easy to get.

    Emmie's Page

    http://www.myspace.com/thetiniesthero

     

  • At 9/16/2006 11:22:00 AM, Anonymous Anonymous said…

    My thoughts and prayers are with you.

     

  • At 9/16/2006 11:24:00 AM, Anonymous Anonymous said…

    U of M Medical Team
    If you are reading this - SHAME on you. Shame on YOU taking the life of this little girl. You WILL be ashamed of yourself one day. One day when you see this diamond of a lady walk thru your office doors and tell you that YOU didn't win YOUR fight to play GOD!
    SHAME on You. How do you sleep at nite? You should bow your head in shame. Or another idea. Make a difference in this world. Don't just accept your overpaid salary- CARE about this little girl. YOU !

     

  • At 9/16/2006 11:51:00 AM, Anonymous Anonymous said…

    Just wanted to let you know I have been praying for Emmie Rose since Dawn posted about her on the Lab board. I will continue to pray for her.
    Paula

     

  • At 9/16/2006 12:24:00 PM, Anonymous Anonymous said…

    I sent this update about the Ann Arbor news to a friend who used to be the director of the MPAS. This is her comment back to me. Please if any of you who are able to contact the family have them contact them the MPAS. Plus my friends husband has his own firm which has dealt with similiar issues as offered technical support to the team working on this case. Please get this information to them ASAP!!

    ___________________________________
    Saw this today but wish the family would follow up with Michigan Protection and Advocacy Service. They have successfully dealt with similar cases but no contact has been made by the family yet. MPAS services are at no cost to the family.

    Tricia
    __________________________________

     

  • At 9/16/2006 12:44:00 PM, Anonymous Anonymous said…

    Just to explain something: quality of life discussions are generally issues of palliative care. When the doctors believe that an outcome is certain, they start talking about the very real tradeoffs between contining treatment to sustain life at all costs, vs comfort.

    A very common issue is the use of morphine as a painkiller. There is a tradeoff between reducing pain and keeping respirations as strong as possible which will prolong life as long as possible. There are all sorts of tradeoffs like this that come into play when the doctors believe that its just a matter of (indeterminate) time.

     

  • At 9/16/2006 12:47:00 PM, Anonymous Anonymous said…

    My nephew was born at U of M 31yrs ago and the doc's told his parents (my sister & husband) to say goodbye to their baby as he was brain dead. They refused to accept the diagnosis and prayed and asked everyone they knew to also pray for their baby. Today, my nephew is in his final year of residency and looking forward to starting his own medical family practice next July. Keep praying and let God, not the ALL KNOWING Doc's at U of M, decide Emmie-Rose's fate.
    HIS will is greater than the intelligence of ALL the Doc's combined. You are in my prayers.

     

  • At 9/16/2006 01:08:00 PM, Anonymous Anonymous said…

    Ah yes, quality of life. I am familar with that statement. My own son and daughter(twins) were born at 25+ weeks in 1998. My daughter is now a healthy and happy 8 y/o. My son passed away at 10 months of age due to complications related to his prematurity. Anyway, he was re-admitted to the hospital when he was 8-9 mos for dehydration. I thought he was having seizures. I went to the nurse who then told me that it was hard to know if children wih severe CP(a diagnosis he hadn't recieved yet) and "low quality of life" are having siezures. This upset me greatly and I stood there not knowing what to say but I was enraged because IMO, she had NO right to comment on his "quality of life". Like you said, WHAT IS THAT anyway? My son was loved, he was well cared for, he was happy and content and my husband and I were very much aware of his life and what challenges we faced. I was angry because there are many children in this world who are developmentally and physically perfect, but they live in abusive homes, neglectful homes, less then ideal environments, ect. Yet those children would never be told their quality of life is low. I think this is all in the eye of the beholder, honestly.

    I also had people e-mailing me and leaving comments in my guestbook with their opinions about our choice regarding our child. Many supported us but there were those who felt the choices we made were wrong. Like you, the exact details of my son's life was not posted on our web page. Most of the details were there, but not all of them.

    My own husband and I decided early on that we would fight for our babies. We decided as long as our children fought, we would fight with them. We fought with Isak for 10 months and 5 days until he told us he wanted to leave and return to Him.

    You are right that NO ONE can understand how you feel or completely know what THEY would do until they are in your shoes(or a similar pair). No one knows your child better then you do. You are there with her, you know her moods, you know when she is happy, you know when she is sad. For someone to assume you are doing this for purely selfish reasons, is wrong. I know not everyone agreed with our decision to do the things we did with our son, but it wasn't THEIR decision to make. It was ours. Just like your decision to fight with Emmie-Rose, is YOURS. Continued prayers for you!

    Angie

     

  • At 9/16/2006 01:19:00 PM, Anonymous Anonymous said…

    I'm shocked to read that no help is being given to this baby by the hospital. Human life should not be debateable. I will have Emma-Rose in my prayers, and also those of the hosp. staff that God will convict them of their sins toward this baby. I hope their eyes will be opened and do the right thing.

     

  • At 9/16/2006 01:38:00 PM, Anonymous Anonymous said…

    My thoughts and prayers are with you!! Emmie-Rose keep fighting!!

     

  • At 9/16/2006 01:38:00 PM, Anonymous Anonymous said…

    DON'T GIVE UP!!!!

     

  • At 9/16/2006 01:49:00 PM, Anonymous Anonymous said…

    As you said, I do know exactly what I would do if it were my child, exactly what you are doing. You are her parents and know, in your hearts, what is best for her. As far as her "not being perfect" - none of us are. We all have strengths and weaknesses, some are just more apparent than others. I would much rather deal with a person with a physical or mental disability than a person who's soul is broken. Please hang in there and know that your family is in my thoughts and prayers.

     

  • At 9/16/2006 02:49:00 PM, Anonymous Anonymous said…

    I'm sure Emmie-Rose can sense your positive spirit and endless love and she will need it, so keep heart! Your family will lovingly be in my prayers!

     

  • At 9/16/2006 03:44:00 PM, Anonymous Anonymous said…

    My thoughts and prayers are with you in a difficult time. Remember that all of us have feelings. That includes family members, patients and caregivers. I don't pretend to know what you are experiencing. But remember no one is in your shoes. You are the best person to care for your child. God will take her when he is ready regardless of medications,NEC, courts, caregivers, or food. Love her, care for her, cherish her for when HE calls, there is no turning back. And remember every minute you spend away from her is one minute you can't get back. It's obvious you are angry-and that's OK (to be expected and healthy)but stay positive because your daughter can feel that. She is a apart of you and your soul, don't let her feel your hatred and anger for what you 'think' is wrong doing on a hospitals part. Remember this is a time of high stress and anxiety, maybe you aren't the best person to judge others and their actions. Or anyone else who is reading this. Let go and let God. Love her.....and those who try to help you.

     

  • At 9/16/2006 05:10:00 PM, Anonymous Anonymous said…

    It touched me and inspired me when I read the baby knows her mom is touching her. Life is really amazing and wonderful for all and for all times. She has a precious life that was given by God!

    I pray that God will be glorified through Emmie-Rose's life! He can do far more than what we can imagine especially when situation is impossible for human.
    Give thanks to the the Lord for what He will do for Emmie-Rose!

     

  • At 9/16/2006 05:14:00 PM, Anonymous Anonymous said…

    Your family is in my prayers. Please stay strong and listen to your heart. Grow Emmie-Rose! God Bless

     

  • At 9/16/2006 05:51:00 PM, Anonymous Anonymous said…

    I read the article today and was so saddened to read all of this, have we not moved ahead in dealing with the term "quality of life"??? U of M knows my opinion on that phrase and all I can say is Emmie Rose is in our prayers, John and family are rooting for you!

     

  • At 9/16/2006 05:52:00 PM, Blogger Munkeesmama said…

    Still praying. Thanks for this post. Please let us know how she is doing good or bad when you can, most importantly as james dobson would say "focus on the family"!

     

  • At 9/16/2006 07:09:00 PM, Anonymous Anonymous said…

    Stephanie and Chris,

    I don't know you but just read your story in the Ann Arbor News. I CANNOT even come close to imagining what your family is going through right now. I am also a parent of a preemie and also live in Michigan. I am HORRIFIED to read what is happening to your family!! I could have named the hospital if someone told me the story without giving me that info. Our daughter was hospitalized at U of M (not during the NICU - that was at Beaumont). After our experiences at UofM we swore we would NEVER go back and we haven't. We travel to Cleveland for her care now (Rainbow Babies and Children's Hospital). UofM is simply the worst at child and family-centered care and your experience really shows where they stand. We found them to be famous at making their own decisions and doing what is in their own best interests and saying "sorry" afterwards after our child was already traumatized. This was a pattern not just a one time event.

    I am so sorry for all that your family has to go through right now! And all of this because some people think that they know more than God and what is in the best interests of Emmie-Rose and your family. They will decide for you! My husband and I as we sit here and discuss it get angrier and angrier. We just cannot imagine that this is happening!!

    I cannot imagine walking into that NICU every day and knowing that they are not providing the very basic necessities that she needs. And then having to leave her there in their "care" would be absolutely unimaginable. Having a child in the NICU is the one of the most difficult things a family can go through. Having the hospital add on additional stress by refusing to not care for your child and not allowing you to transfer her care is simply cruel and unbearable.

    We are definitely praying for Emmie-Rose and the entire Yannella family. She may be small but God is using her in a very big way! She has certainly touched our lives!

     

  • At 9/16/2006 07:33:00 PM, Anonymous Anonymous said…

    God bless you and your little fighter! I will continue to pray for you and your family. KEEP FIGHTING, EMMIE-ROSE!

     

  • At 9/16/2006 07:59:00 PM, Anonymous Anonymous said…

    I am so saddened to know that in what is called the land of milk and honey that this precious life is being denied.As long as God is allowing this child to live thereshould be no reason why the doctors who took the Hypocratic Oath to preserve life should ever be willing to literally "starve"someone to death especially a child.It was bad enough what happened to Teri Schiavo now its happening to a child and its not right by any stretch of the imagination.Our prayers are definitely with you and your precious baby.

     

  • At 9/16/2006 08:07:00 PM, Anonymous Anonymous said…

    Emmie-Rose's story is breaking my heart. She so wants to live and is not getting the opportunity to prove the adults wrong. I hope that you find the strength to continue to fight for her and that she gets the help she so deserves.

     

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

    if I am understanding correctly, her intestines are dead. how can she be fed if her intestines are dead?

     

  • At 9/16/2006 08:33:00 PM, Anonymous Anonymous said…

    A prayer for your precious Emmie-Rose.
    I am catholic, and I'd like to offer the intervention of Saint Padre Pio for Baby Emmir-Rose. May His light shine on Her, and Bless her.
    Please say this prayer for Emmie-Rose, -Saint Padre Pio will listen!
    God Bless you, Emmie Rose, and KEEP FIGHTING little one!
    "YOU GROW GIRL!!"
    (((((Hugs)))))
    Alexa (Mom of a 29-week Preemie, Emily)

    Prayer for the Intercession of St. Pio of Pietrelcina

    Dear God, You generously blessed Your servant, St. Pio of Pietrelcina, with the gifts of the Spirit. You marked his body with the five wounds of Christ Crucified, as a powerful witness to the saving Passion and Death of Your Son. Endowed with the gift of discernment, St. Pio labored endlessly in the confessional for the salvation of souls. With reverence and intense devotion in the celebration of Mass, he invited countless men and women to a greater union with Jesus Christ in the Sacrament of the Holy Eucharist.

    Through the intercession of St. Pio of Pietrelcina, I confidently beseech You to grant me the grace of (here state your petition). Amen.

    Glory be to the Father... (three times).

     

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

    I'm so sorry there are brutal critics out there. No one should ever judge a person in a harsh situation. ?? We wonder why the people jumped from the towers on 9-11 ?? Why? We don't know, but if we were in their shoes we would.

    I'm behind what Jerilyn said. There are children's hospitals out there who will fight along with the child. Sounds like your daughter is fighting! My prayers will be added for you and your family.

    But I am located in Salt Lake City, UT and we have a Primary Children's Hospital. I know a lot of children are brought here from all over the country. They offer a lot of help and, if the parent's can't pay they take from their donations. It is a very tender hospital.

    Here is their website: http://intermountainhealthcare.org/xp/public/primary/

    Good luck with everything. (((hugs)))

     

  • At 9/16/2006 09:51:00 PM, Anonymous Anonymous said…

    My heart goes out to you. I pray that God lets little Emmie-rose Grow.. Shame!!! on the hospital for not feeding her. I also wanted to let you know I email Nancy Grace of CNN your story. I hope she will do a show on this.

     

  • At 9/16/2006 11:14:00 PM, Anonymous Anonymous said…

    I remember only too well when a doctor at U of M told us that our son would probably not live past puberty and that if he were us he would put him in an institution because he would be a burden for the rest of his short life. Isn't it ironic that he was far from the burden that was to be our lot but turned out to be the greatest blessing of our lives. He was diagnosed with Cerebral Palsy and Microcyphelia. That was in 1974. He lived to be 23 years old and was loved each and every day of those years. God chose to take him home a November morning in l995 and although we miss him terribly, we wouldn't trade one day of his life with us. He never walked, fed himself or spoke a word but graced us with smiles that would melt the coldest heart and was truly loved by all that came in contact with him. We never knew how many lives he had touched during his lifetime until the day of his death. Then it was brought home to us the true reason he was given to us. God worked through him in ways that we didn't even know. So, I feel that this little angel of yours has been sent to touch peoples lives and I must say she has indeed touched mine. I pray strength and grace for you and your family and a healing touch for this little one. God bless you,

    Evelyn Millican
    Monroe, Michigan

     

  • At 9/16/2006 11:50:00 PM, Anonymous Anonymous said…

    Every day I read this post and every day I'm amazed by amount of caring and compassionate people who write and give hope. I only wish the doctors at U of M would care a fraction of what has been shown here.

    Bless you all and my prayers for Emmie-Rose and her family.

    Russ

     

  • At 9/17/2006 04:54:00 AM, Anonymous Anonymous said…

    I'm praying for all of you that you can find a Dr. to give your little girl the care and respect she deserves.

     

  • At 9/17/2006 05:57:00 AM, Anonymous Anonymous said…

    My prayers are with your family. As a mother myself I think you are doing what any loving mother would do for there child. I pray you find the care Emmie is entitled to as a human being.

    The Everett Family
    Maryland

     

  • At 9/17/2006 06:32:00 AM, Blogger Jan Steck Huffman said…

    Thinking of you all, and I agree - it shouldn't be their decision as to "quality of life". Thank god no one decided that for our child.

     

  • At 9/17/2006 08:24:00 AM, Anonymous Anonymous said…

    I have read your blog and am praying for God's will to prevail. A few things stood out to me as I read.

    First, medically, what exactly is 'wrong' with your child? It has not been mentioned decisively but rather brushed over. Something with the intestines was mentioned: small and/or large; how much, percentage is ‘dead tissue’; are there any other complications; etc. Something must warrant the use of these terms you frequently quote: futile; imperfect; quality of life. Whether or not these are the best terms to use is another issue, however, there must be something that has warranted both medical and law professionals to selected them.

    Secondly, in regards to this statement made on September 10…

    “The fellow (pretend doctor) was on call and we explained that we would like to have the dead tissue removed from her because we were never given that option to begin with.”

    Definition
    A Postdoctoral Medical Fellow is one who:
    1. Has been awarded the M.D.
    2. Is engaged in a program of advanced clinical training beyond the doctoral degree

    Meaning, they are specializing in a specific area. They are a Professional with a degree and it is quite offensive to hear you term them a “pretend doctor.”

     

  • At 9/17/2006 08:35:00 AM, Anonymous Anonymous said…

    Would it help to put pressure on the hospitals? Who should we contact?

     

  • At 9/17/2006 11:19:00 AM, Blogger Sunny said…

    hi. This seems a little too obvious, so excuse my ignorance if this has already been addressed, but can she be transferred. My triplets were in the NICU at East TN children's hospital, and I am fairly certain that they treat micropreemies regularly. In fact, I know a mommy whose child has NEC. It's scary and inconvenient, but totally doable. YOu are a great mommy. Do you what you know is best. You are right. It's easy to be an armchair quarterback and say "I would never..." but most of us have no idea what we would do in your shoes. Keep your chin up! Praying for your angel!

    Sunny
    Knoxville, TN

     

  • At 9/17/2006 11:36:00 AM, Anonymous Anonymous said…

    I'm very sorry the hospital does not respect your family enough to have you make decisions about the life you created.

    I hope you find a medical team who is willing to give you all the respect and care deserved. I had baby in NICU (nothing like this, though) and I couldn't imagine if they told me to just give up. I wouldn't have the great 4 year old I have today, and every moment I have him is precious, and was -- if it was a day, or a hundred or a thousand or tens of thousands, etc.

     

  • At 9/17/2006 11:40:00 AM, Anonymous Anonymous said…

    Keep fighting Emmie-Rose! I will keep her in my prayers, as miracles can happen. Although, I don't have any experience witht he insurance issues....I do have triplet boys that were born at 26 wks and are now healthy happy 7 yr old boys. I have also known others that have had babies born at 24 wks and are doing well. I'm so sorry for what you are going through.

    How dare this hospital-and that they deprive the care from her that she needs. I couldn't even believe what I was reading. She could be one of those "miracles" and they definitely shouldn't be depriving her of food and blood transfusions. I would also want to do everything I possibly could to help my children. I'll be praying and praying!

     

  • At 9/17/2006 11:42:00 AM, Anonymous Anonymous said…

    Have you contacted our U.S. Senator? I couldn't find a phone number for her office but here is Mrs. Stabenow's email address:
    "Senator Debbie Stabenow" senator@stabenow.senate.gov

    There is a NICU in Marshfield Wisconsin. My sister is a nurse there. They have very experienced, loving staff there.
    Kathy Stahl, Ann Arbor, MI.

     

  • At 9/17/2006 01:37:00 PM, Anonymous Anonymous said…

    We have and will continue to pray for her.
    I know this may seem ignorant but I wonder if you couldn't take her out of U of M
    before they have a court order to let her die. This reminds me of what happened to Terri Schaivo and I would hate to have this happen to her. Even if you don't have permission to take her to another hospital you as her parents are responsible for her even if it means showing up at another hospital
    without letting them know ahead of time.
    With prayers for courage for you and life for Emmie-Rose

     

  • At 9/17/2006 01:49:00 PM, Anonymous Anonymous said…

    U of M will not release the baby, even to the parents. It is my understanding that at first they said they wouldn't release the baby unless parents had a doctor who had a treatment plan for her willing to accept her. The parents found a doctor willing to treat her, then the U of M blocked the transfer thru the hospital that this doctor works for (Toledo Hospital). Now, U of M says that trasfer to another facility is not in the best inetrest of the baby. (Meaning, they won't release her to another hospital) I don't see how it's their choice to make.

     

  • At 9/17/2006 02:09:00 PM, Anonymous Anonymous said…

    I had a preemie with NEC at U-M Holden, long ago, and although his course was much different from your daughter's, I would read up on what "dead bowel" means if I were you. Does it mean that she can't process anything but saline and glucose? Is that why lipids were withheld? Read the online medical journals on this condition--as your doctors for the citations-- and that should help you understand what the doctors are doing. It is unfortunate that this is now an adversarial relationship. By the way, the September 16th portion of your very moving blog is almost impossible to read because of the colors. Hope you change them, and best wishes to you

     

  • At 9/17/2006 03:01:00 PM, Blogger natalie said…

    I am a proud mother of a 23 weeker and was told a similar story when she was born. They wanted me to end her life and I just could not come to terms with this. I used to pray every night for God to take her or heal her. Thankfully 2 years later she is still here with us and doing wonderfully. Keep on fighting for your daughter. They are starving her to death and this is illegal. You can reach me at dwolf@stblaw.com or 718-829-2621 for support. Babies can survive from NEC and shunts. I belong to Preemie-list@yahoogroups.com and there are plenty of preemie moms there to help give you support. Provied you are willing to live with the outcome then it is your decision to keep your daugther alive. I am with you 100%.

    Donna
    Mom to a 33 wk boy 5 and 23 wk girl 2 with mild cerebral palsy and failure to thrive diagnoses.

     

  • At 9/17/2006 03:41:00 PM, Anonymous Anonymous said…

    For the person that can't read the latest entry due to the colors....just hightlight the text and you should be able to read it.

     

  • At 9/17/2006 04:31:00 PM, Anonymous Anonymous said…

    To all of you praying and sending good wishes to our Emmie-Rose, thank you, thank you, thank you!!!Now to all you people who have negative comments/and or questions.
    1. Emmie-Rose has a necrotized bowel. That means she was born with a lower intestine and it became infected and has "died". You need a certain amount to have a resection of the bowel and according to her surgeons, there was not enough good tissue to do this.

    2. You have been informed on the blog of everything we have been told by the doctors. We have explained everything to you that they have explained to us.

    3. Our question to the doctors, and to everyone else is this----You stated that she has this condition and would die within a couple of days. We allowed the doctors to treat her as they recommended. It is now 14 days later and she has not died, she is still here smiling, looking around. Can the doctors expalin what is happening??? No!!! Well neither can we but obviously something is taking place in Emmie-Rose's Life!!!God has a hand in this. All we ask as family is that she be treated as any other sick baby and be given the care she has received since birth. What difference does it make to the doctors and hospital??? They can't tell us what is happening--they don't do any testing or checking to find out what is happening. So tell me, Duane, who are you to question our baby's life and the decisions we are making in her behalf???We are trying to do what is best for Emmie-Rose. If you don't agree with us, don't bother to check her blog. We should not have to explain ourselves to you or anyone else. We have tried to be honest and just let our family and friends know about Emmie-Rose. . We will fig ht forever for Emmie-Rose.

    Pam Brendtke Emmie-Rose's Nanna

     

  • At 9/17/2006 04:38:00 PM, Blogger Truthseeker said…

    You are in my prayers constantly. Spreading the news.

     

  • At 9/17/2006 04:53:00 PM, Anonymous Anonymous said…

    Have you tried contacting Shriner's children hospital? I don't know if they take babies, but I know that they pay for treatment for children... give the parents a place to stay and there is no cost to the family. It is worth looking into...

    God Bless you and your family.
    You are in my prayers.

     

  • At 9/17/2006 05:01:00 PM, Anonymous Anonymous said…

    I hope all is well with your daughter. I have a daughter who was born at 24 weeks getation. And was in the hospital for 6 and1/2 months. If anything could go wrong it did. Our drs. tried to prepare us for the worst and did not expect her to survive, but I wouldn't hear it! She proved them wrong and some even appologized for not having faith in her!
    I will pray for your daughter. Stay strong you are your daughters number one advocate

     

  • At 9/17/2006 06:50:00 PM, Anonymous Anonymous said…

    Many hugs and prayers. I hope you can find a doctor who will respect Emmie. You are right people just don't know until they are in "your" shoes.

    It is not up to the doctors and its not up to you. This fight Emmie is giving is between her and God. Thru Him all things are possible.

    Devos Childrens Hospital in Grand Rapids is a wonderful facility. It has been chosen by March of Dimes as one of 3 in the nation for prematurity awareness and study.

    I am the mom of 3 preemies. My youngest did not survive. She was born at 21 wks and was considered not viable. They did nothing to help her at our local hospital. We were told those same sort of things re: quality of life,she won't be normal etc etc. No one knows the outcome just God.

    You keep pulling for your sweet girl and as long as she is alive and fighting she deserves the best care. I know some micropreemies who are very much "normal" and live wonderful lives despite their early start.

    Blessings to you and your family.

     

  • At 9/17/2006 06:55:00 PM, Blogger Bryan said…

    Found this today & linked from my blog. I've also told some of the bigger blog name people, and I hope that it will draw attention to your daughter's fight. I can't imagine why the hospital won't feed her during her fight. If for some reason the food could hasten her death, that couldn't be worse, because she has already beaten their best case.

     

  • At 9/17/2006 07:04:00 PM, Anonymous Anonymous said…

    Wow. I am praying for your family. I cried as I read this blog. Shame on the medical community that is turning their backs on your daughter.

    I hope you win your battle.

     

  • At 9/17/2006 07:10:00 PM, Anonymous Anonymous said…

    YOU GO NANNA!!!!!

     

  • At 9/17/2006 07:15:00 PM, Anonymous Anonymous said…

    I have recently been told of your blog. I have read through all the archives. I just wanted to let you know that you are all in my prayers. It is very obvious from what I have read that your Emmie-Rose wants to live.

    May God grant her the ability to live for as long as He deems fit for her.

     

  • At 9/17/2006 07:27:00 PM, Anonymous Anonymous said…

    I just saw your story and was moved to tears. I gave birth to triplets at 24 weeks, and went through much of what you are going through. They weighed 1.8, 1.6, and 1.4. They are now 9 months old, weigh 13-16 lbs., and are doing great! So keep fighting!! It sounds like Emmie-Rose is a true fighter herself and is doing remarkably well. I will keep all of you in my prayers because I know that is what got all of us through some very difficult times.

     

  • At 9/17/2006 07:47:00 PM, Anonymous Anonymous said…

    I just can't stop thinking about Emmie-Rose. I came across this interesting article. Although, it is a couple years old if you find drs that are able to help your daughter you might want to inquire about this treatment.

    Part of the article states "Tappenden has found that adding butyrate, a short-chain fatty acid, to an intravenous nutrition solution not only causes intestine to grow back but makes it more functional as well." Not sure if this would apply to Emmie-Rose, but just wanted to pass along the information.

    Here is the website:
    http://www.medicalnewstoday.com/
    medicalnews.php?newsid=9027

     

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

    My thoughts go out to you all! My prayers are with you and your baby girl.

     

  • At 9/17/2006 08:40:00 PM, Blogger Munkeesmama said…

    Continuing prayers daily, and checking blog hourly for updated. Fighting for you sweetheart.

     

  • At 9/17/2006 08:45:00 PM, Anonymous Anonymous said…

    i have a daughter named emma and am pregnant with my son-on-the-way. i cant imagine going thru what your family is and i want you to know that my family IS praying for your family and your little girl.

     

  • At 9/18/2006 11:15:00 AM, Anonymous Anonymous said…

    I hope you get the miracle that you are hoping for, that Emmie-Rose improves and that you and her care providers come to agree on the best course of action for her health. If not at U-M, then somewhere else. You deserve a good relationship with the people who hold your daughter's life in their hands (whoever they be).

    You are in a fight for your daughter's life. Like another poster I noticed some things in your posts that concern me. Your family needs you, and it looks like in this time of great stress you are directing some of your much-needed energy into hostility towards modern medicine and your daughter's disappointing medical team. Some of that is understandable because of what's at stake--but some of it is misguided, and it's being exacerbated by the well-meaning but hysterical comments from strangers on your blog. Put your energies where they are needed!

    * As the poster noted, fellows are not "fake" doctors--they have completed the credential expected of doctors. It might be a fellow at another institution that knows how to best address her condition--and it would be tragic if you failed to listen because some miguided soul gave you the idea these doctors aren't real doctors. They are real doctors. Please know that. Please be open to hearing from all medical personnel who might help Emmie-Rose.

    * Teaching hospitals have their frustrations, but if they won't educate doctors where would we be? The doctors whom you loved and trusted so much at St. Joe's were all, at one point, residents getting their training at some other hospital, helping care for the babies of other families struggling with scary diagnoses who were gracious enough to allow them to learn.

    * U-M does not give only care about (or care for) babies who are "not perfect." Quite the contrary--most of the so-called perfect babies go home with their parents within a few days after birth. Many of your readers may not realize this, but the NICU and other floors of Mott are filled with "imperfect" babies getting medical care. It is heart-wrenching what is happening with Emmie-Rose, but it is related to (possibly misguided) medical opinion about her particular condition, not because she is "imperfect."

    * Based on my own experience at U-M, I doubt that the problem lies with ethics or lack of caring. It's about medicine. They believe based on their interpretation of the evidence (which may be absolutely wrong) that there is nothing they could do. It's not a whim, or a lack of character, it's how particular doctors look at particular conditions due to their education and experience. They may be biased and wrong, but it's not a character issue. If they are wrong, that is tragic because of the devastating impact that decision has had on your daughter. But that's a different problem than being unethical. This may seem immaterial to you, but I bring it up because I think it effects your strategy at this critical juncture. I think you are right to seek different medical information, because that is the kind of thing that will sway them. Good for you for doing that. Demands from strangers that these doctors should feel ashamed about not caring are not going to help. That may be gratifying for you to read, but what you & Emmie-Rose really need is hardcore medical opinion that contradicts the medical opinion given at U-M. Bless those of you commenters who are giving that, because in the end this is what will save her.

    My child was a NICU baby, and through that experience (and that of friends who have also had pediatric and neonatal critical care there) I have seen both excellent care and disappointing care from U-M. They do great things at that place, and they save lives. They also make the wrong judgment calls sometimes. U-M may have failed you in Emmie-Rose's case (I am not a doctor so I cannot judge). I fervently hope it is possible to turn things around. All my best hopes go with you to this end. It's clear that you know where your priorities lie--on your sweet newborn fighter of a daughter and her loving siblings. Don't let yourself get distracted by your anger, however well-deserved.

     

  • At 9/19/2006 08:15:00 AM, Anonymous Anonymous said…

    As a level III NICU nurse, it breaks my heart to hear of the devastating illness that Emmie-Rose is fighting. NEC is one of the worst things that can happen to a micropremie, and unfortunately, it happened to her. Sadly, while she may be able to survive for the short-term, she will not be able to live without a small bowel. Period. And she is not a candidate for a transplant.

    Sometimes families have a very hard time facing the truth. They believe that the doctors are trying to "play God" by withdrawing treatment... There is a reason NICU's were created: because these babies CANNOT survive without intervention (man made intervention, not God's intervention). Man has been treating this baby from day one and there comes a point when the treatments are futile and, yes, nothing more can be done.

    The reason another hospital cannot be found is because nothing more can be done. Yes, it is extremely sad. It is horrible for the parents, the child, the nurses (who are with this baby 24 hours a day), the doctors...everybody involved. It is horrible. It is not fair. Life is not fair and nobody is ever given a guarantee.

    If this child had been born 3 or 5 days earlier, prior to 23 weeks, medical treatment would likely have not been offered. We (NICU staff) can only do so much. When a child suffers the severe NEC that she has, it is devastating. No small intestine is not compatible with life. Yes, she can be kept on IV fluids (which she currently is), and could even be kept on TPN...which WILL lead to liver failure...and she will not be a candidate for a liver transplant either.

    I realize the parents have a right to decide what they want done for their child...but they need to be fully educated about the choices they are making. It is not a matter of "fixing" her and she will go home and live a long life. It is a matter of WHEN she will die and how much pain and torture they want to put their child through before letting her go be with God. Many people (adults) choose hospice for themselves when facing terminal illnesses....would Emmie-Rose do the same?

     

  • At 9/19/2006 10:52:00 AM, Anonymous Anonymous said…

    I am not sure if this will help, but please read this news article. When I read your story the other night from a board I frequent because I have preemie twins. I had to come and see what this was all about because a few weeks ago I read on foxnews.com about NEC and new prospects of treatments were occuring. I am not sure if this will help at this point, but the doctor in this research study may be able to help:

    http://www.foxnews.com/printer_friendly_wires/2006Aug07/0,4675,HealthBeatBabyIntestines,00.html

     

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