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]

Posted in PPROM and Infant Loss Awareness

[infant loss] [poem] [birthday] [angel birthday] [memorial]

Posted in PPROM and Infant Loss Awareness

This year our family and friends will once again be participating in the March of Dimes WalkAmerica fundraiser.  This is the annual “big” fundraiser for March of Dimes.  Our walk will be in Columbus on April 30.  Below is the letter we have sent, or will be sending, to family and friends.  We hope to raise $3000 to help research of prematurity issues and the families of premature babies.  If any of my online friends would like to contribute to a very, very worthy cause, I’d love it if you would make a donation to help sponsor me as I walk the 3 ½ mile walk in memory and in honor of my granddaughter Ellora.  You can make a donation by going to my March of Dimes site at http://www.walkamerica.org/ellorasgranny

Here is the letter that we sent:

March 10, 2006

Dear Family, Friends, and Clients of Pawsitively Purrfect Pet Salon,

This day last year was a joyous time for us, because our miracle baby, Ellora Faye, was born on at 11:02 A.M., after she and Michelle had spent 57 days on bedrest. She was incredibly strong and healthy, breathing on her own from the start. How we loved our beautiful little miracle girl! We spent ten wonderful days with Ellora before she contracted a serious infection that took us from us on March 20, at only 10 days of age.

Although Ellora was perfect, and so very strong and healthy, she still was a micro-preemie. At 29 weeks gestational age, although she did exceptionally well, her immune system was still not strong at this age. She was born too early and too soon for her body to fight the bacterial infection that took her from us so very suddenly.

This year, to honor Ellora’s memory, we are once again participating in the March of Dimes WalkAmerica on April 30, at The Sports Barn in Columbus . This annual fund-raising drive is to provide research funds to help save the lives of premature babies like Ellora, or to prevent premature births to start with, and also to help the families while their preemies are in NICU care.

We invite you, our family, friends, and clients, to be a part of Ellora’s Team with us. There are several ways you can do this:

1. You can make a donation to the March of Dimes in Ellora’s memory. Do do so, simply write a check to the March of Dimes and give it to Michelle and Josh, Kathy, or drop it off at Pawsitively Purrfect. If you prefer to donate by credit card, go to Ellora’s Team’s website at http:www.walkamerica.org/ellorasgranny You can read more of Ellora’s story there, and at the bottom of the site is a link to her grandma’s blog site, where you can read even more and see pictures.  Be sure to check to see if your place of work matches gifts to March of Dimes, as many places in our area do this, and it will double your own gift. Your gift is tax deductible. 

2. You can walk with us to honor Ellora’s life and to help us keep her memory and legacy alive! It will be fun to have you with us lending us moral support. We will be ordering T-Shirts for Ellora’s Team to wear in the walk. Please let us know what size you need by March 30, and we will let you know the cost, which will be minimal. Some teams last year had 20-30 members and more, so we would love to have as many of you participate as possible.

3. You can be a sponsor for Ellora’s Team, and help us raise money for the March of Dimes. If you would like to help in this way, let us know as soon as you can, and we will provide you with sponsor sheets, coin cards and boxes, and even a personal website where people can make pledges for Ellora’s Team online! If you will also be participating in the walk, please let us know your t-shirt size by March 30.

Thank you so very much for considering helping us honor Ellora’s memory, and to help March of Dimes be able to help other families to not have to face the things we have had to face this past year. We want to do all we can to help PPROM research and other prematurity issues, and to make sure that other families of preemies are able to take their babies home with them.

For anyone who is interested, we will also be selling prematurity awareness bracelets for a donation of $2 or more. Just contact us if you would like one :-)

Since we are working from several email lists that we used last year at this time, please forgive us if you happen to receive this email more than once.  Next year we will hopefully have time to compare lists and avoid duplications. 

Thank you for being there for us last year at this time.  We don't know how we could have gotten through everything without each one of you.  And thank you for considering helping us reach our goal of raising $3000 toward helping the families of other premature babies, in memory of Ellora.   

Josh and Michelle Stoneburner, and Kathy Kin

Happy Birthday, Ellora!  We love you and miss you so very much. 

Sweet baby, Heaven's Child you will always be,
Yet ours forever---our most precious memory...

Posted in PPROM and Infant Loss Awareness

This was taken right around midnight, before they started the drip to try to induce labor.  Josh and Chelle were so excited, and so optimistic about things at this point.     

Ellora's first picture.  I wish we had taken one before they hooked her up to the CPAP.  When we first saw her, she didn't have her little cap on, and had only the tiniest little oxygen cannula in her nostrils, so you could see her face much better.  This is the baby that we had been told to abort, because there was less than a 1% chance of her living, and if she did, she would "not be something you would want to take home," and other such doom and gloom.  She was perfect, as further tests later in the week would show. 

Ellora is holding her Daddy's finger.  You can tell from her little chin up in the corner just how small her head was compared to Josh's hand.     

We took this picture without Chelle knowing that it was going to be taken.  This is the very first time she got to really see Ellora, other than a few brief seconds in surgery, and she had been drugged at that point.  That funny look on her face is her saying "Oh, she's so TINY and BEAUTIFUL!"   

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.  
To read all of my posts on PPROM pregancies, click here.
The PROM List:   http://www.kanalen.org/prom/list/
Picture Gallery: http://www.kanalen.org/prom/gallery/
Log in with username: prom Password: bedrest 

This letter was written on March 3, 2005, at this same time, last year.

Dear Friends and Family,

Well, did I say that at the hospital there was a lack of tension and nothing but good news to several of you just yesterday? Me and my big mouth :-) What a night we had! Let's just start this update by saying, please pray for NO CONTRACTIONS!!! Not even itty bitty ones!

I went into Chelle's room, and she was hooked up to the monitor, so I thought that she had arranged for them to do it while I was there, like we had talked about. Then when I walked up to the bed, I saw all these tubes of blood the nurse had lying there, and then noticed she had an IV drip. Scared me to death, cause I knew that meant trouble, and not just monitoring so Grandma could see and hear!!!

Right before I had gotten there, and while Josh was running an errand, she had a bleed again. When they hooked her up to the monitor, it was registering small intermittent contractions. This is exactly what happened the first weekend she was in the hospital, the time they rushed her to Labor and Delivery and wanted to induce for abortion. Luckily, if anything would have happened last night, the baby would have been 28 weeks, and the picture certainly would have been different this time round. Thank God!

Anyway, they monitored her all night long, checked for internal bleeding, lots of blood work for infection, IV drips of fluids which can sometimes stop premature labor. (They will not medicate in her situation to stop labor, as usually labor with PPROM patients is because of infection, and it is better to deliver the baby.) They also did ultrasound scans to see if there were any placental problems, but they could not figure out what had caused the bleeding, just like the last two times. No apparent cause for either the bleeding or the contractions. They kept trying to decide whether to send her to L&D for better scanning and monitoring, but after the bleeding officially stopped, and they compared several of her monitoring strips, they decided everything seemed to be ok for her to stay put in her "luxury suite."

I stayed the night, and when I left this morning, everything had stabilized once again. So hopefully the little one will continue to stay inside Mommy where he/she can continue to grow and develop those lungs. I got to see precious little hands, feet, and face on the ultrasound, and little arms and legs stretching out. What an active baby!

So Week 28 was official at midnight and came in with a bang! It is so exciting to be at this point, and know that the baby has a wonderful chance to live and not have any major problems if for some reason Chelle would go into labor "for real." Of course we continue to hope and pray for the baby's birthday to be April 14.

Thanks again to everyone for all of your prayers and your love and concern for not only Chelle and the baby, but for Josh, and all the rest of the family.

Specific prayer requests for this week:
1. That Chelle continue to remain infection free. As I've said before, that is one of the biggest risks for PPROM patients.
2. That the bleeding and contractions she had last night were just another weird freak thing and that the baby will be delivered on April 14.
3. That as the days in the hospital are now over 50 days, Chelle will continue to be able to at peace and be able to cope with the bed rest for what will hopefully be another 6 weeks.
4. We also are asking for prayers for my dad, Chelle's Grandpa. He was admitted to the hospital back home on Tuesday with pneumonia. He is 81, and in really great health for his age other than the pneumonia, but of course we are all very concerned about him. They have not been able to get the congestion to break up yet, so that would be our specific prayer request for him---that the congestion breaks up and his lungs begin to clear. 5. And would you all also please pray for Chelle's brother BJ? He just found out that a dear friend and mentor in Boy Scouting died instantly of a heart attack at the Scout camp yesterday. They were close, and this will be very hard for him. He will also be responsible for planning and participating in scouting's Broken Arrow Ceremony either at the funeral home or at the funeral itself, which will of course be hard.

Chelle's address remains the same as in previous updates.

God bless each of you for being such a support!
Kathy

I sent a second letter out that day, as the first one didn't make it to many people on several email lists that I was updating about Chelle and the baby, so here is the 2nd letter.  It was to be the last I wrote before Ellora was born at 29 weeks exactly one week later. 

Hello everyone,  I always have trouble with my messages getting through to the group when I write from webmail.  Since it hasn't come to me, I am assuming that it didn't get to any of the rest of you either, so will write again. 

Today is officially Week 28 for Chelle and baby.  But we had to have some scares thrown in just to keep us on our toes.  I went in to see Chelle last night, and the nurses had said they would do the monitoring and the scan while I was there last night so I could see, as I hadn't for quite awhile. So when I walked into the room and saw the monitor there, I didn't think a thing of it UNTIL I walked around to hug Chelle and saw that she was hooked up to an IV and the nurse had 5 test tubes of blood she had just drawn!  I was scared to death. 

Right before I had gotten there, she had had another major bleed.  But just like the other times, they found absolutely no reason for it. Thank God the baby was fine, and the contractions tapered off and stopped!  Chelle felt no pain at all, and couldn't believe that they were real contractions.  So we don't really know what is going on.  Maybe we'll never know. 

So we dodged another bullet.  The neonatalogist was in this morning and said that the baby is now about 2 1/2 pounds and that is still growing proportionately.  He sees no sign of any compression injuries at all, and says that is a good sign that there has been no lung compression either, even though the AFI still remains below 3.0.  He says that we are well into the 90% range for survival if Chelle does go into labor at this point.

What a way we have come the past 50+ days!  I got to see the baby's sweet little face on the ultrasound screen, and it is beautiful!  Thanks once again to all of you for all the wonderful help and advice you have given, and thanks to the owners of the website for all the information.  I honestly don't think we would have had the knowledge to have gotten to this point without all of you.  We continue to pray for all of you and your situations, too,

Blessings,  Kathy, Mom to Chelle and my precious grandbaby, who PPROM'ed  at @ 20 weeks, now 28 weeks, and hoping for an April 14 birthday.  Due date May 26.

Posted in PPROM and Infant Loss Awareness

Posted in PPROM and Infant Loss Awareness

Posted in PPROM and Infant Loss Awareness

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 and we will do our best to direct you to helpful and hopeful information. We advise you to read the PPROM website, and to joing their email support group.  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.  To read all of my posts on PPROM pregancies, click here.

This letter was written on Feb. 3, 2005, at this same time, last year at.

Dear Family and Friends,

As you all know, today was official "Viability Day." Hip-hip-hooray! You should see what all these doctors can do once you cross into day 24 that they couldn't/wouldn't/shouldn't do prior to this.

Blessings, Kathy

Posted in PPROM and Infant Loss Awareness

Posted in PPROM and Infant Loss Awareness

Many of you have wondered what a PPROM pregnancy is, and why I feel such an urgency to inform people about it.  PPROM is an acronym for Preterm Premature Rupture of Membranes, and happens in only 1-2% of pregnancies, most often at a time when the baby is able to survive outside the womb.  So only a very small percentage of PPROM's happen in the 2nd trimester or earlier.  This is why doctors know so very little about the condition, and almost universally recommend abortion as the only option for a mother who PPROM's early in a pregnancy.

PPROM is, for me, a Right to Life issue.  Yet it is never seen addressed as such.  PPROM patients are not aware that their baby is considered a poor risk, and an insurance and lawsuit liability. They may not be aware that while a doctor is telling them to abort their baby because "there is no hope," a mother across the hall, who has fertility issues and is pregnant with multiples, is having everything humanly possible done to help prolong her pregnancy until a good outcome can be expected for her babies.  The mentality toward PPROM babies seems to put less value on the lives of these precious little ones who are so loved by their parents, than on the lives of other preterm babies who are in distress.  Many of us on the PPROM support list have very strong feelings about this disparity in treatment and are making an effort to better inform women about PPROM.

My daughter was pregnant with her first child this time last year, and she PPROM'ed at approximately 21 weeks, although she now thinks it began about a week prior to that.  She was given only 2 alternatives by the doctors at our large university hospital---induce labor for an abortion or go home to abort on her own.  You can read more about her story in my other posts that are specific to her situation.  I, too, was a PPROM mom 3 times, although late enough in the pregnancy that helping my babies was not an issue, thank God!

My purpose, along with many other moms who have been through a PPROM pregnancy, is to encourage those going through this horrifying crisis in their pregnancy, to consider a third alternative---to wait and see what happens.  This option is rarely given to a PPROM patient.  The ladies on the PPROM support list have for the most part decided to continue their pregnancies, and there are many losses, but there are many success stories as well.  Many more than most doctors will tell you.  Our daughter was told that her baby had less than a 1% chance of surviving long enough to be born alive, and if born, would be "something you don't want to take home." 

If you read the success stories on the PROM support website, and join their email support list, you will be amazed at how many success stories there are.  It is a long, hard battle, but it is possible that you will deliver a live baby, and take that baby home.  I want those who read this to have hope, but a realistic hope.  It is true that the statistics are not good, but they are better than most people realize.  In most cases, you will be your baby's only advocate, so you need to be armed with information. 

What do you do if you suspect that you have PPROM'ed, or that this has happened to a relative or friend?  First of all, make sure this is what has happened.  Any leakage of fluid should be checked out by a medical professional.  Make certain that an abdominal ultra-sound is done to measure the amount of amniotic fluid.  This is called an AFI reading (Amniotic Fluid Index) and will tell if your fluid level has gone down.  It also gives you a baseline to know whether or not the fluid level increases or decreases as time goes on.  Do not trust to just the fern strip tests, as often these are inaccurate. 

PPROM is not always a sudden gush of fluid.  It can sometimes better be described as a "slow leak."  If you have been constantly damp, it could be a sign of PPROM, and should be checked to be certain. 

What will happen next is dependent upon where you are in your pregnancy.  I personally had PROM'ed in 3 out of 4 pregnancies, but my own were later in the third trimester, whereas my daughter's was early in the 2nd trimester.  I had emergency c-sections each time due to various reasons each time, once because of a prolapsed cord, and twice because of a compressed cord. 

If you are in your 2nd trimester, you will probably hear the awful words, "We need to induce labor."  The doctors will want to do this to prevent infection in you, the mother, and feel that the baby has no chance to survive.  However, if you are not in active labor, and the baby is not in distress, take time to think through your options.  I encourage you to wait and see what develops, while taking all the possible precautions you can to prevent PTL (Preterm labor) and infection.  It is still possible to fight for your baby's life, and you just might be able to take that precious little one home one day.

Ask your doctor to test for infections.  Even if none are present, ask for prophylactic antibiotics.  Most doctors will give a series of antibiotics for at least 2 weeks to prevent infection.  Blood should be drawn every 1-2 days to keep track of your WBC.  You should have your temperature monitored, and check your drainage for foul odor or color. 

Most doctors will hospitalize you for monitored bedrest at 24 weeks.  If you push for it, many doctors will hospitalize you earlier for your own well-being.  Rarely will they be doing anything specifically for the baby earlier than 24 weeks.  If you live far away from the hospital, are bleeding, or any problems you consider serious, please consider hospital bedrest.  It is hard to be on complete bedrest at home, and should infections or labor develop, you need help quickly.

If you have reached 24 weeks into your pregnancy, your doctor should administer steroids to help boost your baby's lung development.  This is of vital importance, because lung maturity is crucial for the survival of a micro-preemie. 

Other options are amnioinfusion or an amniopatch.  These have worked for some patients, so are something to consider.  Most likely you would have to go to a hospital other than your local one for these procedures, as they are not done at many places. 

Most doctors do not want to consider tocolytics to stop PTL prior to 24 weeks, but there are a few ladies who have successfully convinced their doctors to do this.  Most feel that if labor has started, this is a sign of infection and is meant to be.  However, I have read of many ladies who have had PTL and shown no sign of infection.  Their labor subsided, and they gave birth to preemies that became PPROM survivors.  My daughter was in PTL 3 times during her PPROM.  The doctors would not give tocolytics to her, despite her begging, and luckily the PTL stopped on its own each time.  Her baby was born alive and well, with an APGAR score of 9 out of 10, at 29 weeks. 

I must tell you that although Ellora was born so strong and healthy, and with none of the problems normally associated with PPROM, she developed an infection that attacked her liver at 10 days of age, and we lost our little miracle girl.  Those ten days were glorious days, though, and we were so blessed to have them.  Ellora's death was not due to PPROM.  She beat all the odds we were given concerning the pregnancy, and came out a winner in this battle. 

As her Granny, I want her story of surviving PPROM and doing so well until the infection developed to still be an inspiration to others that statistics really don't mean a thing...they are just numbers.  Just think, Ellora was given less than a 1% chance of being born alive and well, and after birth she was given a 95+% chance of survival.  In both cases, the numbers meant nothing, and the outcome was the opposite of what the numbers had to say.  Your baby is not a number, and could be one of the babies that beats the gloom and doom odds that the doctors give you.

Just what are your chances of having your baby survive a PPROM pregnancy?  The overall statistics that I have found give several milestones that you will want to try to reach.  First of all, if you have made it 48 hours post-PPROM, this is tremendous!  50% of PPROM babies are delivered within 48 hours, and of course if they are born prior to 24 weeks, have little to no chance of survival.  I do personally know of three 23 week babies that, although not PPROM babies, survived this early birth.  Another milestone is reaching the 2 week mark.  Another 25% of the PPROM babies are delivered within 48 hrs-14 days post-PPROM.  So celebrate when you have gotten this far! 

This means that 25% of the PPROM babies are delivered 2 weeks or more into the PPROM pregnancy.  This will mean different things for you depending on what week you find yourself at when you PPROM.  But for all of you, each day is another day to give your baby time to grow and develop inside Mommy, which is much better than the best NICU.  The studies I have read vary dramatically about the survival rates for these babies.  I do know that the survival rates for the mom's on the PPROM support loop seem to be MUCH higher than the rates that we hear told about in the various studies doctors report. 

I wish all of you well, and will be back another time to give you advice on how to keep your pregnancy going as long as possible.  In the meantime, please go to the PPROM Support website, read the information you find there, and most importantly---sign up for their support email group.  These ladies will help get you through whatever the future brings....one day at a time. 

Posted in PPROM and Infant Loss Awareness

Posted in PPROM and Infant Loss Awareness

This letter was written on January 28, 2005 at this same time, last year.

WEEK 23~~!!!!

Dear Family and Friends---Hi to all,

Well, Chelle and baby have reached week 23 and both are still doing great. The doctor came in and patted Chelle's tummy this morning and wished our little one a happy birthday. 

The baby is going to be a musician like Mommy and Daddy.  When they check the heartbeat, he/she kicks the microphone with his little feet in perfect rhythm....every 4th heartbeat. It is so cute! Idon't know if you all remember, but Daddy Josh was in a band for many years, and Chelle went to New England Conservatory in Boston, majoring in opera. Sounds like baby will be more attuned to Daddy's style of music with the "drumming" he's doing...lol. Chelle is listening to lots of classical music and opera, Gregorian chant music etc. They tell her the baby can hear the music now, so she is hoping that this music will counteract, or balance out, the baby's musical taste :-)  Seriously though, this kind of music is very relaxing for Michelle, and a relaxed Mommy is less apt to go into labor.  Several friends have teased her and said, "Hey, I thought the goal was to make the baby want to stay inside there...with that kind of music, he's going to want to dash right out!"  

There has been no serious problem since the last bleed. Just some minor leaking.  She found out from one of the nurses that her leaking is pretty minor compared to what most women experience who go through this.  

They will give her the steroids by next Thursday, which is to help the baby's lung development. Next Thursday is our milestone day--- week 24 will be here, and survival statistics for 24 week micro-preemies is very high. It varies from 60-85%, depending on what study you read. This week in and of itself is also important. In week 23, viability (there's that word again...) increases 3-4% PER DAY!!  OSU is a level 3 NICU (Neonatal Intensive Care Unit) which is the highest available, so the baby will have the best of care. Of course we all hope that Chelle will be able to carry the little one until April 15, which will probably be the official birthday if she carries that long. Although this would still be very early (her due date is May 26), at that point, the risks of infection harming the baby far outway the risks of premature birth.  We think this would be great, as Josh's birthday is April 18, and Chelle's is April 19th, and Uncle BJ's is April 23.

Continued prayer is needed for:

• No more significant bleeding or leaking of amniotic fluid
• That there will be no signs of premature labor until the baby's lungs are well developed.
• For continued peace and the sense of God's presence for Chelle.
• For Chelle and Josh's business to thrive during this time as they need will need not only their regular expenses, but also anticipate that there will be lots of hospital time for the baby even given the best case scenario. That means money for meals, parking garage, and all sorts of things along that line. They have a voucher system, but it is still $5 a day minimum for parking. Josh is now working 4 grooms a day at the shop, and trying to get in the things that only he or Chelle can do.
• And a selfish request....please pray that BJ and I can keep up the pace of working 12 hour days, helping with Chelle in the evenings, and be able to cram enough rest into the time we are able to sleep to keep us going physically and mentally during this time.

I continue to be amazed by my dd. She is the picture of grace and serenity. I have never seen her so calm and at peace. We have your many prayers to thank for that. She is even relaxing and letting go of her "control" issues....she likes to be in charge, and it has been hard letting others do things that she should be doing. But she is doing absolutely super, and I am really, really proud of her.

A nurse came in this morning and told her "what a trooper" she has been. Apparently most women would not go through all this for their baby, which none of us can even relate to let alone understand.

Michelle has really enjoyed all the cards and letters of encouragement, and the flowers and plants, too.  It helps make a drab hospital room look much more pleasant when you know you are going to hopefully have it be your home for a long, long time.  

Please continue to join with us in prayer for February four or more...

Blessings to all of you wonderful prayer warriors!
Kathy

Posted in PPROM and Infant Loss Awareness

Hi all,

I have been reading all of your emails with great interest, and passing many of them along to my daughter Chelle, who entered the hospital with PPROM and a suspected, though unconfirmed, partial placenta abruptia and pre-term labor at @ 21 weeks, 13 days ago.  Our university hospital wanted her to induce for an abortion when she was admitted, or to go home and "let things happen."  Never was she given the information that we have found on this list and website---that it is indeed possible that she could successfully carry this precious little on until there is a good chance of survival.  She would have continued the pregnancy even without the information found here, but the encouragement has certainly helped!

Chelle did not have internet access in the rooms she was in previously, but they just "hooked up" last night, and so hopefully she will feel like writing to you on her own when she feels up to it.  She has had just a couple of minor bleeds since admission which have her scared to move, so she hasn't been up to getting her laptop out herself yet. 

With the knowledge we gleaned from friends, internet, and our own instincts about not terminating a pregnancy when both mommy and baby were doing very well other than the PPROM/PPA/PTL, Michelle put herself on bedrest and decided to remain hospitalized.  Nearly everyone has been supportive of her after she makes decisions, but no one makes suggestions or offers much advice to her, since the baby is "not viable."  She is so sick, as are all of us, of hearing the word viable used so loosely.  True, the baby had, and still has, very little hope of surviving if born.  BUT she is not in labor, has no infection, the baby is not in distress, and we do not understand the mentality of not wanting to proactively help her continue the pregnancy until she is 24 weeks.

Many questions she has had have been answered here already.  Her current concern is constipation.  They have given her colase, and it is not working well anymore.  They told her that she can use a bedside commode if she wants, but won't give her any opinion as to whether she should or not.  (Just like everything, they give no official advice, not even to continue the bedrest, until she passes the 24 week mark which will be Feb. 3.

We sure would welcome any advice from the rest of you about this.  She wants to know which is the least likely to cause more problems:   the pressure of pushing to have a BM on a bedpan or the moving around to use the bedside commode.  Any words of wisdom from those of you who have "been there, done that?"

We are also curious as to whether the rest of you have had the same trouble getting any advice or help at all from doctors prior to 24 weeks.  They have not even taken an AFI, and one resident said they had never heard of forcing fluids to replenish the amniotic fluid. No one has suggested the possibility of her "small leak" situation sealing over, which we have read about in many of your posts. She has not had any significant leakage since the original leaking and bleed when she was frist admitted, and it was not a huge loss at that time.  The only monitoring they are doing of either her or the baby are a WBC every few days, temp, and BP, asking her about any drainage, and checking the baby's heartbeat twice daily. That's it...

Posted in PPROM and Infant Loss Awareness

We stayed at my older dd's home this weekend, and not at the shop, so didn't have computer time.  Sorry not to have been able to update you all sooner. 

Chelle and the baby are still stable. Just a tiny bit of bleeding and fluid leakage yesterday morning, but nothing considered serious.  The baby is quite active and doing well.

Chelle has an amazing attitude and is in remarkably good spirits.  She was "promoted" to a room with an outside window.  It was totally driving her nuts to not be able to see outside. 

Believe it or not, Josh and I have done lots of internet research, and found that antepartum depression can set in for long-term bedrest patients with no outside windows.  So it seems that God spoke to Michelle and told her to be praying for and outside window before this became a problem. And the prayers were answered!

We will reach Week 23, God willing, on Thursday.  Sometime during that week they will give the corticosteroid injections to boost lung development.  Lots of Josh's and my research has shown that just the PPROM experience itself also boosts lung development, because of the added stress to the baby.  Any stress, as long as it is not in the danger level, promotes more rapid development of the lungs.  So you see, sometimes stress is a good thing.  Wish I could say the same for me...

We are finding out that the way Chelle's case has been handled is pretty widespread around the country.  How sad...  Most of it is due to liability.  The doctors do not prescribe bedrest, or for that matter, prescribe anything at all, in most places around the country.  The most that a PPROM patient can usually expect is a round of antibiotics to prevent infection.  This is done for the mother, and not the baby, so seems to be alright with doctors to take this measure as a precaution.  It does help the baby, too, because any infection in the uterus will cause premature labor. 

It is sad but true that absolutely everything Chelle is doing for herself is what SHE decided to do, on her own. After she decided it, everyone was quite supportive and helpful...but they were not the ones to tell her these things were options.  

We are also finding out that if the mom is having a multiple birth, or had fertility problems, the doctors are proactive in situations that arise before week 24, whereas in a "normal" pregnancy they are not.  Sounds awfully close to saying that one baby's life is more important than another's, doesn't it?

We were half joking around the other night, and Chelle said that if we were still in the Puritan days, she would name the baby Viable.  She has heard that word used so much the past 12 days, and usually in a manner suggesting that she induce abortion, or in a manner suggesting that the baby will not live.  We said that the baby would then be a walking testimony to how "viable" he or she really is!

Although we are still facing one day, one hour, at a time, we are all so very hopeful that with all the thousands of prayer warriors uplifting Chelle and the baby, that we will see a miracle.

Prayer concerns now are:
1. Continued prayer for the leak in the amniotic fluid to seal over, and that there be no more bleeds.

2. That the AFI (Amniotic Fluid Index) will be taken and be above 5. 

Blessings to all,
Kathy

Just minutes after writing and sending out the letter above, I received a phone call from the Josh at the hospital and had to send out the following emergency prayer request emails. 

Dear Family and Friends,

Just after posting my update, Josh called to tell me that Chelle has had another major bleed. It is tapering off, and we are praying that it stops, and that no contractions start as a result.  Please pray for this along with us!
Kathy

Dear Family and Friends,  

Michelle and baby had been stable and doing well for the past week. She has been on complete bedrest, hoping and praying to reach at least week 24. We are on week 22 day 5 today. Steroids will be given to promote the baby's lung development sometime during week 23.

There has been some heavy bleeding again, so we ask once again for your prayers that God preserve and protect this little life until a reasonably safe birth is possible. Please pray specifically for the bleeding to continue to slow down and stop, that the internal exam will cause no infection that would complicate her PPROM situation, that the placenta will remain intact enough to nourish the baby, that the new bleed will not cause any contractions to start, and that Michelle will continue to be wrapped in His presence and remain calm and at peace, which is the most important thing of all to prevent contractions from beginning.

Thanks so much,
In Him,
Kathy

Posted in PPROM and Infant Loss Awareness

Posted in PPROM and Infant Loss Awareness

Posted in PPROM and Infant Loss Awareness

I have wanted to make this blog a place where women with PPROM pregnancies can find help, hope, and encouragement. Since this is a full year since Chelle was admitted to the hospital for what turned out to be nearly 3 months, I thought it would be appropriate to include the letters that I sent out to family and friends throughout her PPROM pregnancy, as well as helpful advice that we found out about from a wonderful support group that we were fortunate enough to find online.

Last year, the 15th was on a Saturday. Chelle's husband and I had spent the night with her. On the previous night, the doctors were still trying to determine for certain the cause of her bleeding and were talking about putting a cerclage in place. They seemed somewhat hopeful, so we were certainly not prepared for what Saturday morning was to bring.

That morning, a very young resident on the High Risk OB-GYN floor came in at 5:30 a.m., long before we were awake, and sat down on Chelle's bed. She told her that the final diagnosis was PPROM (Preterm Premature Rupture of the Membranes). She insisted that there were only 2 alternatives....induce labor for an abortion there at the hospital or go home and "let nature take it's course," and then return to the hospital to "complete the abortion process."

Chelle and Josh and I all asked about other options, but for this young doctor, there were no other options. She told Chelle that if she were to have this baby, it would be "something that she wouldn't want to take home," and other cruel things like this. She gave absolutely no hope at all for the baby to survive...none at all. When Chelle continued to question her, she arrogantly stuck her nose in the air and stated, "If you had been to medical school like I have, you would understand.' She treated us all as if we were a bunch of ignorant morons who knew nothing.

Soon after this, Chelle went into terrible convulsion type behavior. She just shook and shook and shook, and convulsed all the while. It wasn't long before she began to bleed profusely, and they rushed her to labor and delivery, thinking the baby would be born very soon. Thank God this was not the case.

The letter which follows will tell you more about that day. I hope and pray that if any PPROM patients or their families read any of the story of Chelle's PPROM on my blog, they will contact me by email or contact the PPROM Support group. We want to help you in any way that we can.

This letter was written last year on Sat. Jan. 15, 2005

Dear Family and Friends,

What a weekend we have been through! Michelle was admitted to University Hospital Thursday. They were discussing treatments through Friday and things were looking good. Then they discovered that she had PPROM (premature rupture of membranes) and also a slight placenta abruptia. At only 21 weeks, this was not a good outlook at all. Once they found this out, they were not nearly as willing to help her, although both she and baby are doing great other than the complications.

The high risk pregnancy doctors told her early Saturday morning they wanted her to induce labor for an abortion, or send her home with no treatment to wait for labor to start and then come in to "complete the abortion process." She refused, and she and Josh started to work to convince the staff to help them carry this baby until it has a chance of survival---this was not an easy task. And the next day was Right to Life Sunday....how ironic. Josh said he would chain Michelle to the bed, get court orders for help, call the media, whatever it would take to get them to help them carry this baby as long as possible.

Once they convinced the doctors to let her carry the baby as long as possible, and we were all celebrating this "victory," suddenly she started convulsing and bleeding profusely (the placenta had detached even more), and they rushed her to labor and delivery. We are certain this was from the shock of what she had been told. They said that when this happens labor is imminent and nearly 100% inevitable that delivery will occur, and at 21 weeks they gave no hope at all for the baby to live---no aveoli (air sacs) developed in the lungs yet at this point.

We called everyone we knew of to pray, and miraculously, the bleeding stopped, the contractions were very slight and then tapered off and ended. You cannot even imagine how thrilled we were to move to yet another room, as that meant that she had improved to the point that they did not think labor would resume any time soon. She has been in at least 5 different rooms in 3 days!

We are now playing a waiting game. Week 24 is the magic number. Please join us in praying for Feb. 4 or more. Michelle says to please stress the "more" in your prayers, as after Feb. 4 every single day adds to the chances of survival of the baby. Also please pray that no infection sets in for Michelle, and for no more bleeds. I think she and Josh would both appreciate prayer that the days of being flat in bed for what we hope and pray is months, with no movement will somehow pass easily. All of you who know Michelle know that she does not take kindly to not being in control, or to not being able to work and do things for herself.

One very incredible Christian doctor will be their neo-natal intensive care pediatrician when the time comes, and has been the only doctor to be at all supportive. We are so thankful to have found him. He keeps popping in and out and keeps saying that he hopes and prays that each time he pops in, he continues to see her right there, bored to death in that same bed. And a great nurse told Michelle about a lady in her exact same situation who was here a few years ago at 17 weeks along, and stayed till week 34, and left the hospital with a very healthy and normal baby. Finding a support system in the middle of a group of people who for the most part were encouraging abortion has really helped us all to handle this better.

When I left Michelle tonight, she was resting comfortably, no bleeding or cramping at all today. She is getting IV antibiotics to prevent infection, has these really cool massaging anti-embolism thingies on her legs, and is on total bedrest, including no bathroom privileges. (She does NOT like the bedpan at all, and with the high IV drip, she is going to find that it will be a constant companion whether she likes it or not!) A physical therapist will be in tomorrow to help her learn some exercises to keep her muscles toned, and they will probably put a neat thing on the mattress to prevent bedsores, that is like a neat massage bed. I want one of them too!

She and Josh are doing an amazing job getting through this and are determined to do everything humanly possible to save this baby. They are so strong, and their faith is growing stronger too, as they see things happen already that medically shouldn't have happened. They are prepared for the worst, and realize that at this point it will take a bona fide miracle for them to walk out of the hospital with a child in their arms, but they are hopeful, and trusting God, knowing that He can and does still work miracles.

Thank you for supporting our family through this incredibly difficult time. Should anyone want to send an encouraging card or flowers, etc. to them the address is: Michelle OSU University Hospital

Blessings to all, and continue the prayers as we need to get through this one day at a time. Feel free to pass this information along to any other friends of Michelle and Josh that you like, and also to any church or other prayer chains you may know of. We appreciate all the prayers we can get!

Remember, Feb. 4 or more.... Kathy

Posted in PPROM and Infant Loss Awareness

I also invite those who feel led to do so, to please click on the link on my sidebar to contribute to our March of Dimes Walk America 2006 fundraiser.  Our team, appropriately names "Ellora's Team," will be walking in the Columbus, Ohio walk.  Our goal is to raise $4000 dollars in memory of Ellora.  This money will go toward researching issues relating to premature birth, including PPROM.  We have just set up this year's website for WalkAmerica, and invite you to visit, contribute in memory of Ellora and other PPROM and premature babies, and leave a message for us while you are there. 

Posted in PPROM and Infant Loss Awareness

I have seen a poem circulating around the various email lists that Chelle and I are on relating to infant loss, pprom pregnancy losses, and miscarriages. The poem is absolutely beautiful, and is written as if from your child, who is spending Christmas in Heaven with Jesus for the first time.

Each time I read this poem, it had nearly the same first two stanzas, but the last ones varied greatly from one version to another. I wanted to give a copy to Chelle and Josh for Christmas, along with a memorial ornament that I bought for her. (You can see the ornament at the Memorial Christmas Ornament website.)

However, trying to decide which version to use was impossible, as none really quite said what was appropriate for their situation. So I rewrote/revised the last 3 stanzas, which already had so many different variations.

Since then, I have found out the original was written by a mother named Wanda Bencke, who lost her 13 year old daughter to complications of cerebral palsy in 1998 during the Christmas season. She wrote the original poem to help her family through the Christmas season each year as the anniversary of her child's death also approaches. It is beautiful! I would have used it in it's entirety had I seen it first. You can read her story at ChristmaswithJesus.net.

These poems both mean so much to me, because although I am so thankful that we are spending Christmas with our children and their families this year, there is also a big hole in my family where Ellora and my mother should be. We thought we would have a happy little 7 month old baby crawling through the wrapping paper this year, and it was during the Christmas season that I lost my best friend--my mother.

The poems remind me that they are still with us in the ways that count, and that Christmas in Heaven must be so grand and glorious that we can't even imagine it. How can I wish that experience away from them and want them back here with us? I must admit that the selfish side of me wants them here with me so very badly, but I look forward to the day when we will be reunited as a family.

Below is the poem I revised based on the one that was circulating as "author unknown." The first 2 verses, as you will see, are nearly identical to the original by Bencke. I didn't want to mess with them, as since they were nearly the same in each version that circulated, I had guessed that they were from the original source and not really from "author unknown." The other stanzas are based on several other versions, plus some of my own thoughts and verse. Following my "version" that I gave Chelle and Josh, is Mrs. Bencke's original poem.

I hope that these will comfort others who are separated by death from loved ones this Christmas.

Merry Christmas with Jesus, Mom and Ellora! We love you and miss you, and long for the day we will celebrate this season with you in the magnificence of Heaven!

Christmas with Jesus