Posted in PPROM and Infant Loss Awareness

This is the latest in a series of posts from last year during my daughter's PPROM pregnancy.  If you are going through a PPROM pregnancy yourself, please contact us at mkin@udata.com, and we will be do our best to direct you to the help and support that you so desperately need to get you through this experience.  We advise you to read the PPROM website, and to join their email support group, as this was the only group or site we found that gave us any real hope at all in a situation that we had found most doctors felt was completely hopeless. 

This is the only picture we have of Michelle holding Ellora while she was still alive.  They had not wanted them to hold her until she was two weeks of age. This was the one and only time Chelle held her daughter...

One year ago today, at 9 A.M. on Palm Sunday, my beautiful little granddaughter, Ellora Faye, left this earth to begin life again in eternity.  How we wish things had turned out differently for our little angel;  how we wish that she was with us yet today.

If any of you have ever wondered what the hardest thing you may ever have to do as a mother might be, let me tell you what the hardest moment of all was for me.  It was sitting there watching my daughter Chelle hold her own daughter Ellora for the very first time, knowing all the while that Ellora was going to die in her arms within minutes. 

As a mother, you want to fix things for your children, to make all the hurts of life better for them.  To be totally helpless to help my daughter was the worst moment of my life. 

As a child, my daughter once had a doll that had broken. She wanted the doll to be "all better" so badly, and she cried such tears of sadness over the poor dolly.  At Christmas, I bought her a new doll exactly like the old one, and put it under the Christmas tree.  You should have seen her eyes light up when she saw her sad and broken doll baby made perfect again by the magic of Christmas.  I will never forget the look on her face. 

I thought of that that moment when I sat on the floor weeping and praying as Ellora passed from this world into the next in her Mommy's arms.  I wanted to be Chelle's Mommy again, and be able to "fix" Ellora, and make her well, to be able to make the infection that so suddenly took a perfect baby and made her so very, very sick just go away.  I wanted to make Ellora's little face glow a healthy pink again, and make her tiny fingers hold her Mommy's finger once again, and see her kick those strong little legs.  But I couldn't do anything....nothing at all, but watch my daughter's face as her heart was ripped apart. 

I hope and pray that none of you will ever have to go through this experience.  I have always been prepared to lose my grandparents and parents, and even my spouse.  But never in my life did I ever expect to lose a child or grandchild.  Ellora is supposed to be here with us still, basking in the love of her family, and playing with her new birthday gifts that she would have received at her first birthday party.  How she would have loved the pink balloons we launched at her birthday celebration.  I can almost hear her laughing as she watched them soar heavenward. 

For reasons only God understands, Ellora's stay with us was all too short.  We thank Him for allowing us to have the privilege of knowing her and being able to let her know how very much we loved her.  We were thankful for the chance to prove that a PPROM pregnancy can result in a perfectly healthy and normal, albeit premature, baby.  We are thankful for our faith and our family, which are the only things that sustained us through this time of our lives.  And I personally thank God for a daughter and son-in-law who valued life so very much that they were willing to fight tooth and nail to prolong a pregnancy that they were told to terminate.  Because of their courage and faith, I was able to know and love a beautiful little princess, Ellora, for ten glorious days. 

The letter below is the final update that I sent out about Ellora at this same day, last year. 

Dear Family and Friends,

It is with the heart that is breaking, and with a life that now has a very big hole in it, that I write you this final update on our precious little Ellora.   Sunday morning, at 9:00 A.M., she passed away peacefully in her mommy's arms. Although her life was short, her and her parents' 10 week battle to save her life, and her own 10 short days with us, have touched the hearts of literally hundreds, if not thousands, of people around the world, and inspired many other mothers to fight to save their baby's life.

Our little miracle baby was so very strong and healthy, and the doctors had no warning that we could lose her, let alone so very quickly.  They believe that she contracted a rare bacteria infection in her blood stream late in the day on Saturday.  At 2 A.M on Sunday, Josh called to tell me that she was responding to the antibiotics, and that they had caught the infection in time. 

Just over 3 hours later, though, she took a sudden turn for the worse. Her doctors wanted to transfer her to Children's Hospital, which they felt was better equipped to handle the infection.  But every time the transport team tried to transfer her, she would code and need to be resuscitated. We were waiting for her arrival at Children's, when we received the phone call telling us to hurry back to University.  They could not transfer her. 

We arrived back at University in time for Chelle to reach into Ellora's isolette, hold her little hand and tell her "Mommy is here," and tell her not to be afraid.  The doctors and nurses brought a rocking chair over, and let Chelle hold her daughter for the very first time, and she died about 15 minutes later in her Mommy's arms, with Daddy and Grandma close by. The doctors and nurses who had taken care of Ellora wept along with us. 

We were able to spend several precious hours afterwards holding our precious little girl, free from any tubes or wires at all.  We finally could see her hair under the little cap she had to wear all the time---it was brown with light gold highlights that looked like it could turn blonde.  We held her little hands, and those cute little feet and knees.  And we were finally able to kiss her sweet, beautiful little face, and feel the softness of her skin against our cheeks.

How wonderful it was to see that adorable little mouth that had been hiding under the tape—she had her Mommy's little "pout face" mouth, as I always used to call it, and her Mommy's nose, too. There were many tears, and it was so very, very hard to say good-bye.   Chelle kept saying, "I know it is just her body, but it is such a CUTE little one."  All the grandma's and grandpa's got to say their final goodbyes, along with Uncle BJ.  It was sad to do, but we all had our pictures taken holding our little angel, so that we could treasure these brief moments of finally holding our sweet, sweet baby forever. How hard it was to pass her from our hands into God's hands.  

To those of you who we have met through email lists and websites for PPROM patients, I want to assure you that Ellora's death had nothing at all to do with the PPROM.  That was a battle we won, and we hope that none of you will become discouraged because of her death.  We believe one of her missions in her short life was to give hope and inspiration to other PPROM patients, and a reason for all of you to continue to fight the medical world's opinion about aborting PPROM babies, and continue your own fight to save your baby.  If you don't do this, Ellora's and Chelle's long battle loses much of its meaning.

This precious little child was perfect, and amazed the doctors with her strength and good health, and especially with her breathing with no assistance when she was only exactly 29 weeks at birth.   She was and will continue to be our miracle baby.  So don't give up the fight! PPROM is not always a death sentence for your baby, and it is a battle that is won more often than your doctor will tell you.  Perhaps Chelle and I will write a book on PPROM success stories when the timing is right, in memory of one PPROM baby who beat the odds and amazed all the doctors with her 5 minute APGAR of 9, and breathed every breath of her life until the last 4 hours completely on her own.

Why did Ellora die?  The best answer we have been given so far is that the doctors feel there may have been an undiagnosed congenital and/or chromosomal heart condition, one that didn't show up yet at this age.  They said despite the infection, they should have had 24-48 hours after she took a turn for the worse to try to fight the infection, especially with the antibiotics seeming to take effect.  But our precious little girl's heart gave out after only 4 hours.  Her doctors need answers as badly as we do, and have sent her precious little body
to Children's Hospital where they feel a better infant autopsy can be performed to give us all the answers we need, and that Chelle and Josh need to have answered for future pregnancies. 

A memorial service to celebrate Ellora's life will be held on Saturday, March 26, at the Fredericktown United Methodist Church in Fredericktown, Ohio.  I am not sure yet as to the time, but anyone who needs to know may contact me at mkin@udata.com.  Sympathy cards may be sent to:  Mr. and Mrs. Joshua Stoneburner

I will let you know as soon as possible where Ellora's parents wish to have memorial contributions made, as a final decision has not yet been made on this.  (Even now, a year later, we are once again walking in the March of Dimes WalkAmerica fundraiser.  If you would like to help save the lives of premature babies, please click on my links on the sidebar, go to Ellora's March of Dimes website, and contribute to this very important cause!)       

In most cases, it is hard to find meaning and purpose in a life so short, but not in the case of my precious little granddaughter.  Her days in the womb and her 10 days here on this earth with us saved the lives of several babies from abortion, as their mothers did not know until they read Chelle and Ellora's story that it was possible to continue a pregnancy after PPROM, since doctors almost universally recommend abortion as the only option.  She also has inspired many other PPROM mothers to bravely continue on in their determination to
save their babies lives. 

And most importantly, she was a ray of sunlight in the darkness for us;  a symbol of hope in a hopeless world;  proof that statistics are only numbers and the odds can be beaten through determination and God's help;  and a sign that miracles can and do happen---Ellora was and will always continue to be our miracle baby.   We had hoped and prayed up until the last minutes of her life for a final miracle, but for reasons we will never know, God had other plans. 

Perhaps her mission in life was already accomplished.  One of the pastors of Chelle and Josh's church gave me a verse for them, Isaiah 61:9---"And their offspring shall be known among the nations… All who see them will recognize and acknowledge that they are the people whom the Lord has blessed."  I know from the emails I have received that little Ellora Faye Stoneburner is known among the nations, and that many, many people have been touched by her short journey upon this earth. 

Few of us who have lived over 50 years have touched as many lives as did this precious little child.  As her grandmother, I am so very, very proud of what Ellora has done and will continue to do to inspire others to great things.  Our family is truly a people whom the Lord has blessed because of our short time with this incredible little girl. 

She gave us such joy while she was with us.   Her feisty and spunky little spirit were incredible. How she could kick those tiny little arms and legs around!  Seeing how much she hated the few wires and tubes she had, and how she many times would rip them off showed us what a fighter she was.  And did she ever hate having a wet diaper! Her fingers were so long and slender;  I told her she was going to be grandma's little piano player.  She loved to lie there by the hour and hold her Mommy's finger, and most definitely responded to her Mommy's voice and touch.  I know that she knew how very, very much she was loved, and I know that she loved us in return. 

I know that now she is now dancing with the angels, in the presence of our Lord Himself, in the company of her great-grandma and cousin. 

Chelle and Joshua are of course grieving horribly now, and trying to make sense of it all.  They have so many questions.  Why did God get them through the really impossible odds only to lose their baby when the odds were about 95% or more in their favor?  Why did He grant their pleas for a miracle so many times, and not this time?  Will the problems encountered in this pregnancy prevent them from being able to have other children?  So many questions, and very few answers….  

It would help so very much if those of you who have been touched by Ellora's story would write me a brief, or not so brief, email that I can put in a scrapbook for Chelle.  I don't think she even begins to realize how many people know about her struggle to save her baby, and how many have prayed so diligently for her and her child, nor how many fellow PPROM moms have been touched and inspired to continue on in their struggle to save their own child's life.  Please write me a brief email telling how Ellora's life has touched yours, and email it me at mkin@udata.com.  I would like to have them in time to put in a scrapbook to display at the memorial service on Saturday, but will be happy to add others as they come in.  I think these emails would help ease the pain of Chelle's grief.

To all of you, we thank you from the bottom of our hearts for all the prayers and all the letters and cards you have given us all.  Our family can never, ever thank all of you enough for the support, comfort, strength, and encouragement you have all been to us. We know that Ellora would never have been with us in this world without your support and your prayers.  Please know how much we appreciate everything you have done during this long journey. 

Blessings,
Kathy

(Please note that although we did not know the reason for Ellora's death at the time, we found out about 2 months later, from autopsy reports, that she had died from a bacterial infection, klebsiella pneumoniae, that had originated in her intestine near the liver.  Once it attacked her liver, this caused all of her systems to fail very quickly.  Her death was not due to PPROM, and the autopsy showed no abnormalities or problems from her PPROM experience, despite the fact that she had from "no discernable" to a high of only 3.0 AFI's throughout the 10 weeks of the PPROM.  We hope and pray that her life will continue to inspire other PPROM parents to continue the fight!)

[PPROM Pregnancy] [PROM] [premature rupture of membranes] [support group] [bedrest] [pregnancy complications] [positive outcome] [low AFI] [low amniotic fluid]  [NICU infection]  [klebsiella pneumoniae]

[infant loss]  [placenta abruptia]