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...

Wednesday, September 27, 2006

Sep 27 - Still Here.

Stephanie and I hanging in there.
Our hearts are aching but we keep going.
Our other little ones need our love and attention too.

The business of living has set in again...
Trips to Sam's Club for groceries, cooking at home,
Lowes for around the home stuff, mowing the grass
and yard work at home, helping Z with homework
etc for school.

I start back to work full time on Sunday morning 10/1/06 after
being off on FMLA for weeks now.

All the things we stopped 66 days ago have started
once again. Seems strange after living
between the hospital and home for all that time.

M and B keep asking Mommy and I when we are going to
bring Emmie-Rose home. I start to cry every time we tell
them she is in heaven now with Jesus.

Thank you sooo much for all the words of love and support.
Emmie-Rose touched the hearts of so many people.



Love,

Chris & Stephanie

Sunday, September 24, 2006

Since You went away


Since You went away
My life just isnt the same
I thought I would be okay today
But I guess I was really wrong
It hit Me like a Ton of Bricks
That You arent where You always are
The Lord took You away from Me
But I know there is a reason why
I know Your in a better place
But I wish I could have had more
Though Our time was too short here
One day it will be so much more
Please say Hello to Everyone
And know I am right here
I will never leave You
You can always call back here
Love,
Mommy
9/24/2006

Saturday, September 23, 2006

Sep 24 - Baby Girl



Life is filled with hello's and goodbye's.
The hello’s are so much easier than the goodbye’s.

For 66 days I’ve picked up the telephone and
called the nurses to see how you are before
I fell asleep at night. Even though I know
you are in better hands now, I still feel
myself reaching for the phone to call...
to see how you are doing...

Lord I’m just checking in on my baby.
Read to her.
Give her hugs and kisses.
Make sure she is tucked into bed.
Keep her safe and warm.

Baby girl, Daddy misses you so very much.
Sweet dreams little princess...

Thursday, September 21, 2006

Emmie-Rose Payton J.B. Yannella Obituary


Yannella, Emmie-Rose Payton J.B.Ypsilanti Township, MI
Our sweet Emmie-Rose, age two months, went peacefully Tuesday, September 19, 2006 from the arms of her mommy and daddy to the open arms of Jesus. Emmie-Rose was born July 15, 2006 in Superior Township, the daughter of Christopher J. and Stephanie J. (Brendtke) Yannella. Throughout her short life, our Emmie-Rose had many struggles, which she fought hard to overcome. In addition to her loving parents, she leaves to mourn her passing and celebrate her homegoing- her sisters, Zabrina and Mackenzye and brother, Brenden; maternal grandparents, Pamela and Alfred Brendtke of Ypsilanti; paternal grandfather, James Yannella of Willoughby, OH; great grandmother, Anna Wallen of Ypsilanti; uncle Chad and aunt Amber Brendtke; aunt Dawn and Uncle Bob Cipra; great aunt Jan and great uncle Frank Pimentel; and cousins, Jacob, Alyse, Connor, Tiffany, Hayley, Jayme and Amy. The funeral service will be 11-00 A.M. Saturday, September 23 at STARK FUNERAL SERVICE Moore Memorial Chapel. Burial will follow in Knollwood Memorial Park. The family will greet friends at the funeral home 5-9 P.M. Friday and 10-00 A.M. until time of service Saturday. Please sign her guest book at www.starkfuneral.com.
In Lieu of Flowers, A Memorial Fund in Emmie-Rose's name has been set up.
If you wish to donate to Her fund, please send donations to
Key Bank: 100 South Main, Ann Arbor, Michigan 48104
Attn: Ian Glasford

Wednesday, September 20, 2006

Sept 20th Mine for Awhile


You were Mine for awhile
And Now You are the Lord's
A True Angel since Day One
And now have earned Your Wings
God has a Plan for Everyone
Though We dont know what it is
Just look to Him to Guide You through
And always follow him too
Love Forever,
Mommy

Sept 20th Unusual Kind of Day

Unusual kind of Day
My normal routine is broken
Every since You went away
The Lord hnd more inportant things
For You to do and say
He took You from My arms tonight
To be with Him on High
And told Us not to worry
We'd see You another time
It broke Our Hearts to let You Go
But We knew God had better plans
He took You very peacefully
Tonight He made You His.
We Love You more than Life itself
I never thought I would be here now
To lose a Sweet Little One as You
I figured You'd bury Mom
Today is the Start of a long road ahead
But I know the Lord will Help Us through
We would Love to have You back with Us
But We will be able to see You soon enough
Love Always and Forever, No Matter What Sweet Princess
Mommy

My Prayer to You Miss Emmie-Rose

My Prayer to You Miss Emmie-Rose

Lord, She is Yours Now
Please take care of Her
We love Her So Very Much
But know You Love Her too.

We wish We had More time with Her
But We understand You have other Plans
We wont question You Dear Lord
Please Just keep Her in Your Hands!!

Watch over Her and Hold Her tight
As She now has seen the Light
Help Her understand the Way
Until We meet again one Day.

Love, Mommy
May You Rest in Peace Sweet Princess
September 19, 2006
9:47 p.m

Sept 19th A Very Sad Day!!!

To All of Our Loving, Caring Readers out there, Ms. Emmie-Rose fought Her last Battle tonight. Our Baby Girl passed away tonight around 9:45 p.m. She went fighting all the way. She is a True Hero in Our Eyes!! She has touched alot of lives in the short time She has been with Us. We are so proud of Her and all the things She has done in Her 66 Days with Us.

We Love You Sweet Princess!!! Forever and Ever, NO MATTER WHAT!! We know You are in Heaven now looking down on Us. We are so happy to know that You arent hurting anymore. Please know that Mommy and Daddy adored You and Loved You and still Love You now.


Further Information on Funeral arrangements will be posted at a later date.

Thanks again to All that Care!

Love,
Stephanie and Chris and Miss Emmie-Rose May You Rest In Peace Sweet Princess

Tuesday, September 19, 2006

Sep 18 - For all our web readers.

Emmie-Rose says Thanks for the video capture card gramps!

WXYZ Channel 7 News video from 9/18/06




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,
By
Close Friend Kelly L.

Sept 18th Will the Craziness EVER stop???

I guess I am the new appointed Spokes"lady" for the Blog right now. I feel the need to give updates on Our lives more often due to the ever changing situation We are dealing with right now.

Today, We went to the Hospital to visit Our Sweet Little Emmie-Rose. She is doing pretty good. Her vitals signs look really good.

For now thats about all I know...

YOU GROW GIRL!!!

KEEP ON PRAYING!!!

Love,
Stephanie and Chris and Emmie-Rose :)


Channel 7 in Detroit requested an Interview with Us and We will be on the 6pm News this evening. 9/18/2006

Sunday, September 17, 2006

Sept 17th Another Day of Craziness!!!

Hey Everyone,

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

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

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

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

YOU GROW GIRL!!!


KEEP ON PRAYING!!!

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

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

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.

===========================================================
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
===========================================================

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

Sep 15 - Court

The hospital did not respond to our legal demands yesturday.

We did get their attention yesturday with everyones help
contacting all the diff media outlets! Thank YOU!
The hospital was freeking out calling our lawyers asking what
in the world were we doing with the media.

We spent most of the afternoon at the lawyers office.
We are waiting for the phone call this morning to head into court
to start filing paperwork.

The hospital seems to want to play hardball because they did not respond to any of our demands yesturday.

Emmie-Rose was still going strong last night. Mommy held her for
a long time yesturday afternoon. We had visitors come and say hello
then came home to rest.

Will fill everyone in as things unfold today.

Thursday, September 14, 2006

Sep 14 - Media Hold!

Been on the phones most of the morning with Lawyers.

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

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

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

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

Chris & Stephanie

Wednesday, September 13, 2006

Sep 14 - Media Help Please!

Since when is murdering a child legal in the state of Michigan?

When I stop and think, this is the most bizzar situation that anyone can be put in. I am having to spend hours each day to keep a baby that is fighting for her life alive.

Isn't that the hospitals job?

We need media exposure at this point!
Our legal team has contacted the hospital and its been cleared to talk with the media.

What is happening is that every hospital that we are contacting is being scared off because of the Pediatric Ethics Committee meeting finding:

ETHICS COMMITTEE RECOMMENDATION
Since physicians have determined that the patients condition is terminal and incurable, further medical interventions other than comfort measures are futile and transfer to another facility does not serve the best interest of this child. Furthermore, since continued medical interventions offer no reasonable medical benefit to the patient and such interventions serve only to postpone the moment of death, the treatment team is under no moral obligation to continue life-sustaining treatment. The parent's right to seek a second opinion has been met. Since it has been determined that no additional interventions can be offered to this child, there is no benefit in transferring her to another facility.


No it has not been met! We can't get an unbiased assessment of our child because of the committee meeting!

When she had her surgery on 9/3/06 the doctors said she would be with the lord in two days. We accepted that.

She is still here! She is still hanging on for her life.
I cannot accept the fact the hospital can not open their eyes and help a child that is still alive and fighting every day!

Media:

Please email us directly and we will let you know how to contact us

Chris Yannella
cyannella@comcast.net

September 13th ONE MORE BLOW!!!!

Well here's the deal... We have been on the phone all morning with Docs trying to get her transferred to another Hospital for a Second Opinion. Problem with that is the Docs at U of M are talking these other hospitals out of accepting Emmie-Rose for the Second Opinion that Rightfully We are allowed to receive.

We called Toledo back for a letter of acceptance and explaination to send to the Insurance Company for an appeal. In turn, The Doc tells Us that They have spoken to U of M and U of M has discouraged them from taking her due to another Ethics Committee meeting that We werent even told about or asked if We wanted to attend. The way the Docs at U of M are going We will NEVER get an Unbiased opinion. The Ethics Committee is now involved at Toledo even though they have NOT even assessed Emmie-Rose's condition firsthand and without an overturn decision by that Committee, the Doc that is willing to take her case is not allowed to do so.

They have now taken it upon Themselves to take away her TPN (nutrients She needs to grow, her "food") and her Blood Transfusions, Platelets and Lipids. She has had all of these things since birth until last Sunday when She had her surgery. They told Us She would die in two days, a week later She is still here and We asked them to give her her TPN, Blood and Platelets back and they did (yesterday). Yesterday they called a meeting to let Us know that "THEY" have "decided" amongst themselves that they are going to NOT feed her anymore or offer Her anymore Blood, Platelets or anything else that will help her to grow. So basically they want to starve her and let her blood run out so She can die. What does that sound like to you??? Torture if you ask ME!!

We just dont understand how a group of people who call themselves "doctors" can just "decide on a whim" that because this Child isnt "PERFECT" in their eyes that She isnt worth fighting for. They keep feeding Us the line "Well, do you know how hard it is going to be down the line/in the future". WHO CARES ABOUT TOMORROW, Lets work on today. They feel that Emmie-Rose is a "dead" issue and they have been just waiting for her to die. GUESS WHAT PEOPLE, LOOK WHO's STILL HERE!! NOW WHAT????????????? So their next course of action is to keep everything away from her that She has needed since birth and see if that makes her die. They let her blood get so low that that could have killed her. They are tired of dealing with Emmie-Rose because they see Her as "imperfect" and thats what they want to save is the ones that are going to make it "Long term". Who knows but the Lord who will make it the next 2 minutes let alone a yr from now. Obviously, U of M is trying to play "god" here and take it amongst themselves to kill Her at this point.

We need an Unbiased Second Opinion that We are entitled to as well as requested from the U of M team. We need someone out there to give Our Little Girl the chance. We want Her to live or die with Respect and Dignity that any Human being has the right to have. U of M is just completely giving up on a Living Human Being and that is NOT Right. We need to fight for Our Loved Ones and Stand Up for them when No One else will. Emmie-Rose is a fighter and until the Lord calls Her home, Mommy and Daddy are going to be fighting for Her every step of the way. There is a reason She is here and touching so many lives in the process. As long as She is going to fight, So are We.

Please Help Us!! IF Anyone has any contacts to help Us out with this situation, please either post or email Us. We need help from Everyone to Help Our Little Girl to get the Care She so deserves. This is a very time sensitive thing, We need to move quickly before U of M decides to take things into their own hands with more bad decisions.

Love,
Stephanie and Chris
Emmie-Rose's Mommy and Daddy

We need help finding a Doc to accept her and look at her without hearing one side only. If anyone knows a Neonatologist, a Ped Surgeon, Ped Doc with Nicu experience... Please pass Our story on. We need to move pretty fast.

Thanks for reading!

Please Continue the Prayers!!

You GROW GIRL!!!

Sep 13 - Back On the Phones



Beaumont said no.
It's pretty sad that with all the great hospitals in the area, nobody wants to help this child that keeps fighting every day for her life.

Our only hope is Toledo Children's.
They are willing to take her and help her.
It's a logistical issue making sure insurance is in place, doctors sign off then baby can transfer down there. I need a headset. I feel like my phone has been attached to my head all morning long here.

I have an appeal in thru the state to have her insurance coverage pay for everything while she is there. The hospital said she needs the second opinion, Mcare should pay for it!
Waiting on the results.

I need to run to the bank and open an account for fund raising. Funds would cover transfer costs and medical costs. Looking around $2000.00 a day for her care if Mcare falls thru. Will pass along more info once I have that.

Our Lawyer, Here we go with the L word, has contacted the U and they know the media storm is brewing. He had to tell them first. Look out world, help save my kid don't sit there and tell me you won't try anything more!

Emmie-Rose was doing great last night.
We found out that after she finished her blood, and TPN last night they switched her back to what she was on before. Which is basically nothing.


Keep your prayers going!

Love Chris & Stephanie

Tuesday, September 12, 2006

Sep 12 - Food!

Sep 12, 2006

I was a Y2K IT project manager for a Cleveland based bank. We never did anything unless we met in the meeting, everyone agreed on it, then put the plan in action.
I though I had never spent so much time in meetings in all my life.
I think between all the meetings we have had with the staff up at the hospital, the hospital meetings are winning for the most time spent in a conf. room.

Monday -

The doctor's hands are basically tied now that the "Un-Ethical" committee has ruled. Even though he personally may want to try things to get Emmie-Rose to a point where we can try for something down the road, He can't because the hospital will begin to question him why he is providing aggressive support.

The biggest part of a second opinion is finding a doctor and hospital that will accept her.
Pittsburg Children's is the leading center for intestine transplant. They would not take her because she did not match their transplant criteria.
Rainbows Babies and Children's - could not offer anything more than "comfort care" and would not accept her.
Toledo Children's will take her but our insurance would not cover her there.

Our only other option at this point is Beaumont.

We were finally able to get the doctors to give her blood and TPN last night!
Stephanie told them, how would you like it if you went a week without food?

So far so good. She did well overnight last night.
She got a nice bath and got all cleaned up by one of the few nurses that is professional and takes the time with her she needs. We appreciate that greatly!

There is more going on here today. Sorry no update last night as Steph and I came home last night and collapsed on the top of the bed we were so tired.

We appreciate all your love and support!

May the Lord show us the way to glorify him!
I think the Lord and Emmie-Rose are both showing us that now.

All our love,

Chris & Stephanie.

Sunday, September 10, 2006

Sep 10 - Evening On the Phones

Talked with the surgeons again tonight and they also have said tonight that they can no longer offer us any help. We are more than welcome to a second opinion.

Since the "No-Ethics" meeting on Friday the entire hospital has completely washed their hands of this baby. Kris, you are totally correct… I believe now that the hospital and insurance are thinking this is a waste of time now. She should have died days ago what is she still doing here.

We ran home and got on the phone tonight.

I only have three potential hospitals lined up for transfer.

Being the weekend I mostly talked with Fellows and not the Attendings.
I need to plead my case with the doctors, see if they can offer her a treatment plan, then work on getting her transferred.

I'll be up in the morning taking my oldest to school then coming home to get back on the telephones.

As soon as we know more I will be sure to update everyone.


Chris

Sep 10 - Hello World! I'm still here!

Sunday afternoon... Stephanie and I have been up here for along time now.

The hospital called in the middle of the night to say her blood pressure and heart rate had slowed down. We jumped out of bed and ran up here.

Stephanie wanted to hold her when we got up here. Then all of us fell asleep in the room.
Emmie-Rose in mommys arms.

Her heart rate and blood pressure came up after she knew mommy had her in her arms.
The little stinker just wanted her mommy.

The lord is awesome! Funniest thing.... We were standing in line in waiting for our eggs to be cooked downstairs and was hearing a lady and her mother telling their story about her 5 year old son. He has had all kinds of issues with feeding and gut issues. Many of the things she was describing we are going thru now. All of us got our food and sat down together for what seemed forever talking about each others issues and milestones.
I think we made a new set of close friends.

After our chat we had a meeting with the doctor and demanded they start TPN and asked to talk with the surgen.

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.
We are waiting to see if this is going to happen or not. We have the one transfer option still on the table. I'm going to try and call around tomorrow to find some others as backups.

We are not out of the woods, her skin is somewhat pale today, she is probably due for blood which she has not had in a week.

We are so humbled by all the prayers and support.
I know the prayers are working!!!!

Will keep you updated as soon as we can.

Love Chris and Stephanie.

Friday, September 08, 2006

Sep 8 - Major Blow to Patient Care

Friday 9/8/2006

Today Emmie-Rose’s Hospital has hit a major blow against us.

I believe some of the staff believe we are not providing the correct care for her and had us meet with the “Ethics” committee.

At most hospitals the Ethics committee is usually made up of staff, social workers, clergy, and parents of other children.

We had a room full of the staff, 1 surgeon, 2 social workers, and Stephanie and I.
Let’s just stack all the cards against us.
After wasting 2 hours going over the issues, it is their Ethical recommendation to not continue life saving treatments to our baby!
This includes vent support which she has been on since day one.
Why don’t you just turn the knife back and fourth after you stick it in our hearts!
According to the committee we as parents of our child can not tell the U of M Doctors how to provide care to our child. They reserve the right to discontiune support when they feel like it.

They have not fed Emmie-Rose since 9/3/2006!

She had physical therapy this morning with NO problems. They moved her all over, pulled her legs in and out… no changes in facial expressions, no changes in heart rate etc. SHE WAS FINE!

Now they dropped a bomb on us like this! What the Beeeeeeeep!

I spoke with some other doctors tonight at some different hospitals that seem more willing to be able to work with her condition but they want to wait until Monday to see how she is doing before agreeing to a transfer.

I probably can not get a restraining order until Monday as well to keep the U from pulling the plug on her without our consent and give her food.

Help! Tammy can your connection help us get one ASAP?

I never thought I would be the voice for children that can not speak for themselves but here I am. Betty thanks for doing some research for us while the hospital had our hands tied wasting time.

Thanks to everyone that has helped get this little girl to where she is today!
We are not cruel and mean parents; we just want to give a fighting chance to our daughter, which despite the odds against her, keeps pulling thru.

Keep the prayers coming! We know they are working!

Love Chris & Stephanie

Wednesday, September 06, 2006

Sep 7 - PICS!


All right here they are...
I was able to use the nurses computer last night to burn pics to cd and get them home.















Sep 06-2006 - The update.

Wow a lot has been going on the past two days.
We have been in a lot of meetings the past two days over Emmie-Rose's care.

Over the holiday weekend we called and left a msg to Dr. Kato's office in Miami.
Thank you Betty!

Tuesday:
He got back with us and did a conf. call with Stephanie and I and a room full of
the staff at the U. I think the staff at the U were surprised that the Yannella's were
calling around checking out their options because they were very interested in knowing
why a transplant team from Miami was contacting them.

The team in Miami went over Emmie-Roses condition and status but she did not fit
the paramaters they were looking for. She would need to be totally off the vent breathing on her own, and somewhat older. It is very hard to find doner organs for such a small baby.

At least we tried that avenue.

Wednesday:
Had three meetings this morning.
First meeting with the head of doctors to go over issues we had with the surgen that worked on Emmie-Rose. I am sad to say that I am glad I have lawyers on retainer.

Second meeting:
While we were in the first meeting, our doctor was reassessing Emmie-Rose because she seemed to be looking better and her vitals were better than the days before. Even tho the intistine is a loss she continues to look better. This has the staff totally baffeled because they would have thought she would have gone into shock and passed away by now.
Oh darn! Proved you wrong! Emmie-Rose power strikes again!

Third meeting:
Emmie-Rose is still going to pass away and here are the reasons why. After the second meeting the doctor called around asking why she may be acting the way that she is.
They put her back on some of her meds and will she what she does here in the next few days.
They not giving us false hope, but do not want to give up trying because she is not giving up!

Its now Thursday morning and Stephanie fell asleep in the room with Emmie-Rose in her arms.
I ran home to do some laundry, shave, shower, and head back up with Stephanie.

Expect Miracles!
Jenn - Ava's mom, gave Stephanie a bracelet that says that.
Ava should come off the vent sometime Thursday. She was having problems with feedings
which I think they have worked out. Emmie-Rose misses her best friend Ava now that
they are in diff rooms. The will always be sisters from diff. mothers...

Emmie-Rose is in gods hands. We are thankful for every hour and minute she is with us.
Sleep well pretty princess. We love you soooooo much...
Forever... We promise... No matter what...


Love Chris & Stephanie

Sunday, September 03, 2006

Sep 4th - A quiet evening

Its 2:11am

I filled the NICU's digital camera and I'm camped out in the nurses office bloggin and printing pics on their HP Photosmart printer. The nursing staff is being great and helping us out with whatever we need tonight. I asked nice and here I am.
I zipped up the pics in a few zip files and emailed them home.

Stephanie has fallen asleep with Emmie-Rose in her arms in the room.
Emmie-Rose loves being held. She knows mommy has her and all her levels stay right were they need to be.

Its quite up here with all the parents gone. Its just us and the staff.
I had a nice talk with one of the nurses who talked about her 1st and only grand baby.
I guess you can all it a peaceful night.

Sweet Dreams Emmie-Rose, Sweet Dreams Ava.
I'm outta here and off to bed. I'm sure tomorrow will have a lot more in store for both of us.

Sep 3 - September Really Sucks

The doctors came in around 3:00 and talked with us.

There is nothing more they can do for Emmie-Rose.
As far advanced as technology is, doctors do not have a way to help repair
the intistine when its damaged.

The doctors gave us the three options:

1: Do nothing and let her body start shutting down on its own
2: Let us hold her while they begin turing equipment off
3: Say goodby and walk away then have them turn life support off

Stephanie and I are heart broken. She looks like a normal healthy baby
moving, looking aournd, squeezing our hand. Everything wrong is in the inside.

We are scared, sad, and have no cluse what to do at this point.
We love her more than anything and we are trying to make the best decision.

We love you soooo much Emmie-Rose!

Love Mommy and Daddy.

Sep 3 - After Surgery

Emmie-Rose went off to Surgery this morning aroun 8:00am
Stephanie and I were exhusted and went off to the room and fell asleep.

A knock at the door around 11:30am...
The surgen came in to talk to us.

Her entire small intistine is completely gone.

Emmie-Rose is in a private room now in nicu room 4.
She is doing great after surgery. We know the infection from her intistine will overtake the rest of her but they are doing everything right now to make her confortable.

Words can not express how Steph and I are feeling right now.

I will post more after we talk with the doctors and see if there is anything we can do as far as transplants etc... She has fought this so far... Mommy & Daddy are not going to give up on you
Emmie-Rose!!!

Lots of love...

Stephanie and Chris

Saturday, September 02, 2006

Sep 3 - Surgery

Waiting game yesturday.
Surgery was bumped to 8:00am this morning (Sunday) to give Emmie-Rose a recovery
day after all she has been thru the past day.

She was doing better mid day saturday. They took her off the oscillating vent and put her on a regular vent machine becuase she was not peeing at all plus her lungs were getting more than they needed. They are still pulling nasty stuff out of her stomach every hour.

The plan is to put in a port in her neck so it is easier to draw blood etc
and to open up her belly to see whats going on.

Praying and crosing our fingers, toes, etc!
She is a little fighter and we are tyring everything we can
for her to fight thru each hurdle we have come to.

Love Chris and Stephanie.

Sep 2 - 8:00am The Wait

The doctors did their rounds at 7:00am. Checked her belly and pretty much have said the same things we already knew. They are scheduling surgery for her at some point today to have them take a look and see what is really going on.

She has been like a pin cousion all night. They have been trying to do CBC's and blood gasses to watch her vitals all night. She seems like she does not have much blood to give them. The doctors woun't give her a transfusion at this point for frear of causing other complications.

Z, M, and B played with friends then went to stay over nana & papa's house last night.
Steph and I are camped out in a nesting room and have been checking on things all thru the night. We watched Ava and Emmie-Rose have their nightly chat by beeping at one another and then they both settled down and went back to sleep. Too cute...

Will pass along more as this day unfolds...

Love Chris & Stephanie

Friday, September 01, 2006

Sep 1 - Urgent Update

One Step forward... Two steps back...

We are here at the NICU writing this entry.
Forgive my gooder english and spelling errors.

About 4:00am Emmie-Roses tummy began to swell up.
They were worried about an infection causing problems with her belly.

Surgens came in to take a look.

They discovered there is a hole in her intistine.
They placed a drain in her stomach to drain out the fluid and have her on
4 diff heavy duty antibiotics.
They should know more tomorrow if the hole is isolated or if the entire intistine
is gone. If it is just a hole... it can be repaired.

If the entire intistine is gone. There will be nothing more they can do for her.
Quoting the doctors "She can not live without an intistine"

Stephanie and I are camping out in a room here for the night to monitor whats going on.
She is 50/50 right now and we are praying hard that she turns around and this bump in the road can be fixed.

Keep Emmie-Rose in your prayers!

God Bless

Love Chris & Stephanie