The Story of Emmie-Rose: A Special Poem for Emmie-Rose

Monday, September 18, 2006

A Special Poem for Emmie-Rose

A Plea for Emmie-Rose

Lord, We're down on our knees tonight
The same place we've been every single night
Praying against the awful odds
We're hoping this plea can be heard
See Emmie-Rose here, she needs Your help
We've done all we can do ourselves
The doctors they just don't seem to understand
We loved her before she was born
She's a fighter and just needs a helping hand
Lord help us, we're sure You'll understand

Each night as she sleeps
Our sweet baby Emmie-Rose
We just want to keep
We go in to hold her tiny hand
Give her kisses on her nose while we try not to cry
Gotta be strong for our hero, please don't make her die
We smile sadly through the tears and give a little sigh
In this land the tiniest have to fight for their lives
Sometimes it seems they don't have that right
We love her and promise to be her voice

Lord, Can You hear us?
Are we getting through tonight?
Lord, Can You see her?
Can You make her feel alright?
Can you weigh upon the hearts
Of the ones who hold the key to her life?
And let them give her what she needs
It's a plea from the heart
From a mother and a father
Who know all you need
Is Love for Emmie-Rose, our daughter

written with Love,

Close Friend Kelly L.

40 Comments:

At 9/18/2006 01:47:00 PM, Anonymous said…

You do not know me, but I have been reading your story and want to say, keep on fighting!!!! I am praying for your WHOLE family and especially for Emmie-Rose. YOu are doing the right thing by fighting for her. She DESERVES so much more than what the hospital is doing. Stay strong!!!!
At 9/18/2006 02:21:00 PM, Lloyd Family said…

We are parents of a 29 weeker. We have just found your blog and we stand behind you 100%. Emmie-Rose hasn't given up so everyone else should keep fighting. We became very close to one of our son's Neonatologist. We would love to contact her about your daughter and see if she can help in anyway. Can you please e-mail us a "condensed" version of your daughter's story so that we can pass it own to the doctor? Our e-mail address is reljsw@gmail.com. You are in our prayers. Keep fighting!

Richard, Jenny and Daniel
At 9/18/2006 02:21:00 PM, Anonymous said…

Amen amen. God bless little Emmie-Rose and her brave family.
--Kevin, praying every day from Boston area.
At 9/18/2006 02:48:00 PM, Dawn said…

Amen
At 9/18/2006 03:14:00 PM, Munkeesmama said…

Amen, and lots anf tears shed. Grow emmie grow. Keep on fighting baby girl!

I wonder if there is a way to arrange a icket outside of the hospital entrance. not necessarily blocking people from entering. just hold candles sing songs of praise, etc. let the hospital know we are serious and we are fighting for her. Man i wish i was local!
At 9/18/2006 03:15:00 PM, Anonymous said…

What a heart-wrenching poem. It was lovely, and tragic...

I cried and am still a little choked up after reading it.

God bless you, little Emmie-Rose. My thoughts and prayers are with you!!
At 9/18/2006 03:44:00 PM, Anonymous said…

I'm the mother of four, including triplets who were, of course, preemies too, though not nearly as early as Emmie-Rose. What is happening to you is outrageous and terrifying for any mom who's ever had an early child. I've sent an email to U of M hospital, as have many from the forums I go to. Keep fighting for your miracle child. There are so many pulling for her and praying for all of you!
At 9/18/2006 04:07:00 PM, Anonymous said…

Praying for your little girl Emmie-Rose. Her story has touched many people on the internet. I came here to your blog today to get an update.
At 9/18/2006 05:10:00 PM, Anonymous said…

From the Mom of a 24 week, 1 pound 5 ounce now healthy 2 yr old I will keep you in my prayers!

Sammie
At 9/18/2006 05:28:00 PM, Anonymous said…

Dear Emmie-Rose's mommy and daddy-
As a mother who has had to make heartwrentching decisions and finally allowed my daughter to tell ME when she was ready to leave--I know your pain. Noone can play God and no matter what one thinks, it doesn't make it so! Emmie-Rose is still fighting! It's all she knows! She has determination to thrive but is not being allowed to. I don't care what her long term issues are or what may be down the road! Right now there is a little girl struggling to survive and a hospital full of capable doctors who don't want to put forth the effort due to the percentage of survival rate! Forget statistics!!! Let the baby try! She has a right to try! I let my sweet Madison try for 9 months! They asked us numerous times to take her off life support. I refused until she let me know her time here was done! God is the only one who knows the future!
I am praying for you Emmie and your mom and dad and siblings. This is such an injustice and I feel so helpless. Please look to the Lord for comfort and strength. I hope somone outthere will hear all of our cries and try to help Emmie-Rose.
GROW GIRL! GROW!

Praying hard: Stacey Rushmeyer
www.caringbridge.org/visit/emmarushmeyer
www.caringbridge.org/visit/madisonrushmeyer ^i^
At 9/18/2006 06:22:00 PM, Anonymous said…

What do your other children think about all of this? How are they dealing with it?
At 9/18/2006 06:26:00 PM, Anonymous said…

What a horrible position to be in. I know all too well. Please hang on to your faith. It will see you through no matter what comes your way. Praying for your family as you walk a road not easily trod.

In His Hands...
Stacy
At 9/18/2006 06:31:00 PM, Anonymous said…

Hi there l am from Australia and l back you 100%,as l know exactly what you are going through.
18yrs ago l had a little girl weighing 1 lb 11oz and today she is a healthy young lady.the way l got through those tough days was to think postive and never give up as l have a mirical and so will you stay strong and Emmie-Rose will be in my prayers.hugs to you all.
At 9/18/2006 06:44:00 PM, Anonymous said…

Your family is in our prayers.
At 9/18/2006 06:55:00 PM, Anonymous said…

Thank you for sharing your poem Kelly.
-------------------------------------

Visit Emmie-Rose's MySpace page at
http://www.myspace.com/thetiniesthero

The page will be turned-over to Chris and Stephanie (if they wish it) with all your loving comments when they have more time.

If you don't have a MySpace account, they are free, and easy to get.
At 9/18/2006 07:13:00 PM, Anonymous said…

Although I do not know you, your story has touched my heart. What a special little girl Emmie-Rose is and how lucky she is to have you as parents! Take care and I'll be praying for you all!
Keep fighting little girl!
At 9/18/2006 08:35:00 PM, MaryMGlynn said…

This is the Founder of a charity called Heavenly Angels in Need
I think we should do a potision or something to help fight for Emmie-Rose's life.
Our charity is here for you. http://HeavenlyAngelsinNeed.com
Please let us know if there is anything we can do. Bless you, Mary Glynn
At 9/18/2006 08:46:00 PM, Anonymous said…

I came across your blog, and I am horrified that you cannot find anyone to give your baby the care she deserves. I'm not sure if you have tried, but try Riley Hospital for Children in Indianapolis. Here is a link to their contact page http://rileychildrenshospital.com/contact.jsp?locid=26
I will keep you family in my prayers.
At 9/18/2006 08:46:00 PM, bc said…

I dont know you or your family but I was reading your story and I just wanted to let you know that I am praying for you and your baby. May God Bless you.
At 9/18/2006 09:18:00 PM, Anonymous said…

I pray that God will be your strength and your guide during this very difficult time. I don't know you or Emmie-Rose, but I do know that your faith will get you through this. No-one can take that away from you.

You are in my prayers...

Aisling Gamble
Calgary, Alberta, Canada
At 9/18/2006 09:35:00 PM, Angoraknitter said…

Shedding tears, anger, saddness, helplessness...all things I feel while reading about what is happening to your precious angle. It's not fair! It's not right! I wish I were your nurse so I could hook up the TPN and feed her.

Starving babies wasn't something that we were taught about in nursing school. What has the medical world come to.

I'll be passing this story on and putting it on my blog...and praying for Emmie Rose.
At 9/18/2006 10:03:00 PM, Anonymous said…

I'm behind you 100%! Keep fighting for Emmie to get the best care possible!!!

To the Drs., Lawyers, and hospital staff reading this: Please take care of Emmie. I know that the prognosis is not good, but the parent's wishes should be honored. Give Emmie the chance to fight... do the best you can and let her do her best and see what happens. Miracles do happen!

To the Family: I hope you don't need this service, but there is a non-profit organization called, "Now I Lay Me Down to Sleep" that provides free professional photo sessions for families of terminally ill infants. You can visit the website at: www.nilmdts.com . Although I am not a part of this organization, I donate my services to them by designing birth and bereavement photo card announcements. If you want my services for any photo birth announcements, feel free to email me at: admin@simply-yours-creations.com for some complimentary birth announcements for sweet little Emmie.
At 9/18/2006 10:03:00 PM, Anonymous said…

PLEASE! PLEASE!! Check into Children's Mercy Hospital in Kansas City Missouri. They are an EXCELLENT hospital with a cutting edge state of the art NICU. They use cutting edge treatments and are a very FAMILY CENTERED environment. The doctors do NOT blow you off or discount what you want to do or try. I have seen babies coded non-stop even if the child is terminal because it is the PARENTS WISHES! PLEAAAASE contact them. I've seen many kids with NEC at Children's, and they do fairly well. PLEASE call them.
816-234-3300. Ask to talk to the fellow!
At 9/18/2006 10:08:00 PM, Anonymous said…

God bless Emmie-Rose, you, and your family. Amen
At 9/18/2006 10:10:00 PM, Anonymous said…

Not for profit, many different ways to provide financial assistance, and they don't give a damn about the insurance card in your wallet.
God Bless You!Child
At 9/18/2006 10:11:00 PM, Anonymous said…
At 9/18/2006 10:11:00 PM, Anonymous said…

http://www.childrens-mercy.org
At 9/18/2006 10:43:00 PM, Anonymous said…

It seems that many of us don't understand that U of M WON'T LET EMMIE GO!! They refuse to allow her to be transfered to another hospital, because it is not in the best interests of the child in their opinion. (recheck the ethics committe ruling previously posted in this blog) Personally, I think they made some fatal errors in her treatment, and don't want to be found out my another doctor not associated with the U of M, which is why they refuse to let her be transferred. This is the injustice of it all...they REFUSE, to treat the baby, REFUSE to allow a second opinion from outside of U of M, and REFUSE to release her to allow her to be transferred to another hospital. Someone in an earlier comment said that the baby is not eligible for transplant, which is why other hospitals won't accept her which is WRONG! She had a doctor and hospital lined up, until U of M interfered!!!!!!!!!!!!!!!!! The only reasons that I am aware of that Emmie is currently not eligible for a transplant is that she is too small, and she must be off the vent. As hard as this baby is fighting, if the doctors would take care of her, she might have the chance to grow and get of the vent to become eligible for the transplant. Unfortunatly, we may never know if she could've, as it's my understanding that she is deterorating every day that she is not cared for, not only from not being given intravenous food and meds and blood, but also from the surgeon's shoddy work, which they won't at this point repair. It's disgusting, and evil, and wrong, and I hope against hope the legal system is able to intervene before it is too late!
At 9/18/2006 11:02:00 PM, Anonymous said…

My prayers are with your family.
At 9/18/2006 11:27:00 PM, Anonymous said…

Its all she knows

She knows how to live
She knows how to love
She knows how to give
us the chance to grow
and its all she knows

Is it a miracle?
We are all waiting to be a miracle.
When the tiniest hero
knows how,
that small spark of life
is a shooting star-
Lighting the way - to our miracles.

What is her power?
Helpless, she teaches us.
Silently, she invokes compassion
from stone,
The energy within her
melts the ice of fear.
Faceless humanity
becomes family because of her.

Precious angel,
Your face becomes us.
Such tiny hands, so small
But they held others into prayer;
Tears wash us clean-Yet,
Your eyes implored me
To find strength in faith.

She knows how to live .
She knows how to love.
She knows how to give
us the chance to grow
and its all she knows
At 9/19/2006 02:55:00 AM, Anonymous said…

I am praying hard for your family and your precious little one.
At 9/19/2006 06:02:00 AM, Anonymous said…

I keep seeing that U of M won't release her but a patient has a right to leave any time they want to regardless of what a doctor says. I work in a hospital and they can't make you stay against your wishes. You also have the right to a second opinion.

If need be tell them you are taking her home and need the equipment to make that possible. Then take her where you wish for that second opinion.

They are in such violation there. It blows my mind that a hospital is doing this.
At 9/19/2006 06:24:00 AM, Anonymous said…

Hi, A friend of mine just called to tell me about Emmie-Rose. I am praying and keeping you in my thoughts. I want you to know, I am raising a set of grandsons. They are twins, born at 24 weeks. they were 1lb 9oz and 1lb 5oz. They are now 1 1/2 years old and doing GREAT. They were born at Janet Weiss Hospital in Danville PA. It is Geisinger. I wish I could help you in some way, they thought the boys had gastro problems also but gave them the feeding tube and formula. PLEASE< PLEASE,, call Dr Cook in the NICU at 1-888-636-5924 and see if they will give you an opinion or give you options that you can legally do?? I AM Praying for you, My name is Frances Valentine 570-278-9509 if I can help at all, BIG HUGS, LOTS OF PRAYERS...
At 9/19/2006 07:50:00 AM, Anonymous said…

you can fill out a complaint form on the u of m hospital web site and it will go to customer relations. maybe if we clog up their system with complaints something will get done! Keep up the fight
At 9/19/2006 09:35:00 AM, Anonymous said…

I am an NICU nurse (not at this facility) and have seen situations such as this. While it is very unfortunate and heartbraking that we cannot save every baby, it is the ultimate truth. As healthcare providers, we must be the advocate for the patient and it is our job as educated professionals to help make the decision when nothing more can be done. This is not playing God. Intensive care is not leaving the decision in Gods hands. The faith we must have in medicine is that there is a system of checks and balances...there are multiple people involved and providing feedback. If things were being done inappropriately, someone would speak out against it and not let it continue.
To all the people posting comments:
1) Please remember you do not know all the details of this baby's case. While her parents have shared many things, we need to remember we are only reading one side of the story and CANNOT make judgements about her care without all the facts.

2)For the other parents of premies offering support, this is considerate of you. But again, we must all remember that each baby is different. Premature delivery is a very tenuous and individual situation. Just because one 24 week infant survived without complications, does not mean they all do. NEC can has a wide range of effects, from very mild complications to devistating and fatal. It can be a very ugly illness.

3) We must also keep in mind that there is a difference between providing care which will result in a lower quality of life and providing care which is futile. Having the capacity to live is much different than the body not having the ability to survive.

4)As for the "medical professionals" posting negative comments about the health care team, they must remember that they could be involved in a similar situation someday. Health care is not perfect. While we strive to cure everyone, this is not always possible. Please do not judge others, unless you're willing to face the same scrutiny.

I feel for this family and the pain they are feeling. I hope one day they can find peace. I also hope all the other people out there responding can find a more constructive way to help them than pointing fingers at a healthcare team that has provided the best care possible.
At 9/19/2006 10:52:00 AM, Anonymous said…

To "Anonymous" the NICU nurse:

Thank you for understanding this is a difficult problem. We are not stupid and do realize that NEC is a horrific illness. We also are aware of the prognosis. but do you realize and I state this again, WE DID IT THE DOCTOR'S WAY FOR OVER A WEEK!!!!! We prepared ourselves for Emmie-Rose's outcome. SHE IS STILL HERE!!!!!
ALIVE, SMILING AND AWARE!!!! The doctors cannot explain this and neither can we. But you cannot allow this child to be denied care. We are not out to bash or put down the U of M hospital system. If it worked for you, great!!! We have dealt with the system many times, never with any deal of satisfaction. It is so sad that because this situation has been made public (through no fault of ours) that people like you feel you must write to criticize and send hurtful words on this blog. Once again this blog was made to be a direct line for family and friends so they could keep up wirh Emmie-Rose. If you do not want to know about this situation, please do not read the blog. We are only trying to get through a really devastating situation.

FOR ALL THOSE PEOPLE OUT THERE WHO ARE PRAYING AND KEEPING GOOD THOUGHTS FOR OUR EMMIE-ROSE, WE THANK GOD FOR YOUR LOVE AND SUPPORT!!!!!!!PLEASE KEEP US ALL IN YOUR PRAYERS---STEPHANIE, CHRIS, Z, M,B--CHAD, AMBER, J, A---
GANKE ANN, JAYME, AMY AND AL AND I!!!!

Pam Brendtke EMMIE-ROSE'S NANNA
At 9/19/2006 03:53:00 PM, Anonymous said…

God bless you, little Emmie-Rose. My thoughts and prayers are with you!!
At 9/19/2006 06:39:00 PM, Anonymous said…

I am also a NICU nurse, and I am from one of the hospitals that was contacted for transfer of this little girl. I am so sorry to hear that things aren't going her way, but I do want to point out that UofM did NOT block any transfer, the hospital decided that she didn't warrant a move based on the paperwork sent to us. I want to point out that we, as medical personnel, caring for a child such as this is hard on us, and it is tiring to hear us made out to be the bad people. It certainly isn't true. One of the reasons that she isn't being "fed" is most likely because the bowel she has left is not healthy enough to withstand feeds...keep feeding a bad gut and things will be much, much worse. If they aren't giving her HAL/TPN it may be because her liver can't handle it, not because they don't want to feed her.

I wish the family the best of luck with their little girl.
At 9/19/2006 07:03:00 PM, Anonymous said…

From the UofM website - last paragraph reads as though the patient/parents have the final say, not the doctor:

Help with Difficult Decisions: Pediatric Ethics Committee FAQ Why is there a Pediatric Ethics Committee?
The University of Michigan has a Pediatric Ethics Committee because the best medical care requires not only medical skill but good moral judgment. The Committee’s main purpose is to offer help and guidance on moral and ethical questions, such as:

Should treatment be started or stopped?
How much should a child be told about his or her disease?
Is the promise of treatment worth the suffering it may cause?
What is the best thing to do when we must face the end of life?
How does the process work?
The Committee discusses a case only when a health care provider, patient or family member asks it to do so. If a case raises ethical issues, the Committee will meet with the family and health care team treating the patient. At the meeting, the doctors, nurses and social workers will explain the medical facts. Members of the family will express their concerns about the care and treatment of their child. If there are disagreements, they will be freely and respectfully discussed.

After a full discussion with the health care team and family, the Committee meets on its own to consider all the issues. It will then recommend the best course of action. A member of the Committee will talk with the family and treatment team about its recommendation. The Committee’s recommendation also will be written in the patient’s medical record.

Do I have to take the PEC’s recommendation?
No. The PEC’s recommendation is simply the group’s judgment about the best course of action for the patient. The family members and the health care team are responsible for the final decision.
At 9/19/2006 07:49:00 PM, Anonymous said…

God Bless you all! Keep on fighting little one. I'm praying for you and your whole family! May God grant you all the strength to forge ahead! Stay strong mom and dad! You are true definitions of parents! Love to you all!

The Story of Emmie-Rose

Monday, September 18, 2006

A Special Poem for Emmie-Rose

40 Comments:

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