January 10, 2015

Surviving Accreta- The story of Jenifer and Ben Moss

I'm telling my story in first person, although every time I write I, I mean WE.  This is not my story, it is OUR story.  My story is a story of a mother, a miracle boy, a couple, a family, a community.
Pregnant!
Choosing to get pregnant with my 8th baby was one of the hardest decisions I have ever made.  I believe that God knew how difficult this pregnancy would be and that He needed me to choose.  As Todd and I prayed and cried together, asking God to bless us with one more pregnancy, we did not know that this was the first of MANY opportunities we would have to choose life in the upcoming year.  

Looking backwards, I can see that my uterus was not healthy prior to getting pregnant an 8th time.  My 5th and 6th deliveries were emergency c-sections.  My 7th delivery (only a year and half prior to this pregnancy) was a VBA2C (vaginal birth after 2 c-sections).  The doctor had a difficult time delivering my placenta.  Knowing what I know now, I believe I had undiagnosed Accreta with this delivery.  I bled a lot as I was recovering.  My periods from this time, until I got pregnant again with Ben, were extremely heavy and clotty.  I'm certain that my condition was made worse because I started with an unhealthy uterus.

I could tell right away that something was wrong with my pregnancy.  I was crampy and spotting bright red blood and I was certain that I was miscarrying.  As I was busy navigating out of town guests, Thanksgiving and Christmas with 7 kids and extended family members, I kept bleeding.  An early visit to my OB showed very elevated levels of pregnancy hormone, an ultrasound showed a placenta attached low in my uterus, and one very strong beating heart.  I remember looking at that little peanut with a beating heart and being surprised.  My sense of loss was so strong, I knew that I was miscarrying.  And yet, I could see this strong heartbeat.  Later I learned that I was pregnant with twins and had miscarried one.  Even this early on in my pregnancy, my OB said, "That is one miracle baby.  He wants to live."

Diagnosed with Placenta Accreta
I continued to spot, sometimes more than others, and around 12 weeks I was referred to a Maternal Fetal Medicine doctor for further testing.  I wrote about my experience in a blog I titled "In A Moment."  At this appointment I was diagnosed with Complete Placenta Previa and Placenta Accreta.  We also found out that we were having a little boy and I KNEW that he was mine!  I was referred to Oregon Health Science University (OHSU) put on complete pelvic rest and partial bed rest, and told to expect a risky pregnancy.  

My early diagnosis was SO helpful.  I was able to prepare physically and emotionally.  We were able to grieve, to plan, to gather resources and help.  Because I was diagnosed early, I was able to find a team of doctors experienced enough to operate on me and a hospital big enough to have the blood supply I would need to save my life.  

What is Accreta?
Placenta Accreta affects 1 in 2,500 pregnancies.  Because of new birth control methods, more abortions, and the rise in c-section rates, Accreta is becoming more and more common.  I had never heard of this condition prior to being diagnosed.
Placenta Accreta occurs when a placenta attaches to the wall of the uterus instead of the uterine lining.  A placenta is a big sack of blood vessels designed to keep your baby alive and growing.  The placenta is usually delivered after your baby is delivered.  When your placenta is attached to the uterus you are at risk for hemorrhaging or requiring a hysterectomy to remove the uterus and placenta together after birth.

The most severe case of Accreta is called Percreta.  With Percreta, the placenta actually grows through an old c-section scar and attaches like cancer, onto other internal organs.  Your bowels, bladder, and kidneys are most often affected.  The risks of Accreta are many, hemorrhaging, prematurity, hysterectomy, damage to organs such as bladder, bowels and kidney, and both baby and maternal death.    [While I was in the hospital on hospital bedrest, another mother with this condition died in childbirth.  Oh, how Katrina Lawrence and her family hold a special place in my heart.]  Although I believe these statistics are inaccurate and out of date, I was told I had a 10% chance of dying (mortality) and a 70% chance of needing repeat surgeries (morbidity).

Here are some of the Early Warning Signs of Placenta Accreta that helped my doctors diagnose me...

1- Prior uterine surgeries or births.  I had 2 prior emergency c-sections and one prior dnc after a miscarriage.  Some evidence suggest that certain birth control methods can increase the risk of Accreta.  Just be aware-- healthy pregnancies need a healthy uterus.

2- Placenta Previa.  ANYTIME YOU HAVE A PLACENTA ATTACHED LOW IN YOUR UTERUS AND YOU HAVE OLD C-SECTION SCARS YOU SHOULD SUSPECT ACCRETA!!

3- Spotting or bleeding early in pregnancy.  Although this does not mean you definitely have a problem, most of the women I have talked to with this condition also began their pregnancy with spotting.  I believe that as I miscarried one twin, I shed much of my uterine lining making it easier for the placenta to attach right into my uterus.

4- Placenta Lakes.  Even an untrained eye can see the black swiss cheese lakes that show up on an placenta in early ultrasounds, these lakes are actually a mother's blood.  If you are pregnant-- LOOK AT YOUR PLACENTA during the ultrasound.  Black craters in the placenta do not guarantee there is a problem, but it should be a red flag!!

5- Elevated maternal serum alpha-fetal protein levels.  Doctors do not need to do an amniocentesis.  A regular blood test can show elevated protein levels that suggest something is wrong.

Bed Rest and High-Risk Pregnancy
I quickly discovered that when I was active, I bled.  When I put myself on bedrest, I stopped bleeding and cramping.  I (again meaning we) decided that I had to be very careful.  I knew that I could still lose this baby and potentially even lose my life.  I needed to be able to say that I did everything I could.  Although bedrest with a family of 7 children is tricky, I would spend almost the next year learning that it is possible.  Family and friends, neighbors and church members came forward to drive my children around, shop for us, bring us meals, and help take me to doctor appointments.  The sense of family and community we experienced is indescribable.  As unlucky as this pregnancy was, I felt SO lucky to be loved by many.
At 28 weeks I was admitted to the hospital for hospital bed rest.  (I wrote this blog- Sunday Morning Love, before I was admitted.)  While in the hospital I received blood transfusions, steroid shots, daily monitoring, an MRI, many ultrasounds, a PICC line was inserted into my chest, and the hospital planned for my upcoming surgery.  On the mother/baby floor I was their most concerning patient as they were always prepared for me to hemorrhage and require emergency surgery.  
Trained doctors repeatedly expressed concern for the seriousness of my condition.  Experts continually recommended that I terminate this pregnancy to save my life for the seven living children I had waiting for me at home.  Deciding to keep this baby and risk my life was a very difficult decision and one that nobody makes lightly.  Many opposed my decision, many supported my decision, and everyone worked together to save our lives.  I could write a whole book (read this post- A Good Nurse) about my love and admiration for the medical profession in general and the care I received specifically.  These brave, skilled men and women became my neighbors, my friends, and then my family.  They spent hours and hours on me and my little boy.  They worked with God to save my life and I am SO grateful for them.

Delivery!
We scheduled Ben's birth for June 6, 2013.  I was a hospital celebrity.  My husband's aunt who works with the Red Cross in Idaho, called ahead to the Red Cross at OHSU telling them to be prepared with O+ blood.  I had a huge team of doctors, residents, nurses, anesthesiologists, oncologists, gynecologists, urologists.  You name it, they were there.  

Interventional radiology inserted an Internal jugular in my neck and I had two extra-large IV ports in my arms.  If I remember correctly, they had 5 major access lines to deliver blood quickly in case of hemorrhaging.  They also inserted balloon catheters into the main arteries of my groin on the right and left side.  The plan was to be able to inflate the balloons during surgery to block the blood flow into my abdomen so they could operate.  

I knew they would have to perform a hysterectomy.  I was hoping they would keep my ovaries and my cervix.  They ended up leaving my ovaries, but taking my cervix.
I fought with my anesthesiologist.  I desperately wanted them to allow my husband to be in the operating room for the birth of my baby.  They refused many times.  Finally, I cried telling them that there was a very real chance that I might not make it through surgery.  I begged them to give us that one moment.  I wanted that "It's a boy!" moment.  I wanted a birthday celebration in the midst of one very scary operation.  Once the baby was born, Todd would leave, they would put me to sleep, and the baby would be rushed to the NICU.  My beloved anesthesiologist finally agreed.  That man not only allowed Todd to stay for the delivery, he also kept me alive for the next 11 hours of absolutely intense surgery.  He is my dear friend and life-saver.  That one moment-- was absolutely worth the fight.  I knew my baby was alive, doctors were fighting for me, and my life was in God's hands.  Live or die-- all would be well.

Months later I learned that my right iliac was cut during surgery and I nearly bled to death.  Doctors fought for my life all day as I bled out over and over again.  The blood bank was literally running blood products in coolers down the hospital hallways to my room.  They had empty containers of blood lying in piles of ten on the operating floor.  That day I received over 200 units of blood.  200 strangers literally became part of me that day.  

As I bled out, the balloon catheters in my groin burst.  One of my surgeons later told me, "It was one of the worst days of my life.  There was blood everywhere, you were dying in our hands, and we loved you."  I gained almost 100 lbs of fluid, was put on a respirator, and they were unsure how my heart or my mind would hold up.  Although they had not been able to stop my bleeding, they called in the trauma team who packed my abdomen and locked me into a belt that held my insides together, I still have scars on my thighs from this strong belt and stretch marks from the weight I gained.  I was moved into trauma ICU and was assigned two nurses who didn't know if I would live through the night.  The time I spent in the ICU was sacred.

Baby Ben was put on a cpap machine, but he was doing well.  For a baby born at only 33.4 weeks gestation, he was large at 5.5 lbs, he was so sweet, and he was healthy.  Half of my heart lay in the NICU, the other half kept beating in the ICU.

3 days later, a team of experienced trauma surgeons cleaned up my insides and they were able to repair my damaged right iliac.  I had lost circulation and feeling in my arms and my legs, one of my legs was cold and one was hot.  I had blood clots in my legs, so they inserted a IVC filter near my heart. As they were inserting the filter, they caught a large blood clot seconds before it entered my lungs.  Once again my life was spared.

Later x-rays, and CT scans would reveal an abdomen littered with stitches and staples.  My bladder was damaged and repaired, my uterus and cervix were removed, and my ureter was damaged.  I was on major pain medication, the most intense IV pain reliever they can give, and I was still in constant pain.  I had a catheter.  My bowels were not working as they were in shock and my body was full of intense medication.  I couldn't walk, my vision was blurry, my mind was hazy.  I had a baby in the NICU that I was so worried about and a family at home that I was fighting to see again.  My skin and eyes were deep yellow with intense jaundice.  I was scared for my children to see me.  I had an open-wound down my stomach that would take months to heal.  It was gross and painful.

I knew that having Ben would be difficult.  But, I had NO IDEA just how tough my recovery would be.

Recovery
Long-term pain is incredible.  I gained a new respect for those with chronic pain.  Wow.  I was in Trauma ICU for about 2 weeks.  Ben was in the NICU about 3 weeks.  They eventually transferred me back to the Mother/Baby floor and allowed Ben to room in with me.  Todd was the primary caregiver for Ben for almost one year.  My damaged bladder and open stomach wound were my most difficult challenges.  I was so weak that I couldn't walk for months without a walker or wheelchair.  My feet had nerve damage and were on fire.

I was released home (Read this post- Coming Home) with daily visits from the sweetest home health nurses and physical therapists.  I was on a boat-load of medication, daily blood thinning shots (in my sore stomach), intense dressing changes.  I had catheters that continued to leak, clog, and cause infection.  Follow-up doctor appointments, continued blood transfusions for anemia and saline transfusions for dehydration.  I couldn't eat.  I couldn't lift over 10 lbs and caring for myself was difficult.  Caring for my family and preemie baby was nearly impossible.  My pain during this time was indescribable.

I eventually ended back in the ER where they discovered damage to my left ureter.  My kidney was not draining, it was full of infection that went septic leaking into my bloodstream.  I was readmitted to the Cardiac ICU and given bags and bags of antibiotics.  During an emergency surgery they inserted a stent from my kidney to my bladder.  I gained 40 lbs in two days from all the antibiotics and fluids they were dumping into me.  This time, I felt like I was going to die.

Can you believe that while all this was happening my family was planning a cross-country move? Yes, I was released from the hospital as my house was being packed up and I moved from Oregon to a hotel in New York.  I quickly found some good doctors and continued my recovery.  Meanwhile, my family of 8 were being constantly cared for by my parents and in-laws who worked tirelessly cleaning, packing, cooking, and parenting.  How grateful I am for those that served our family during this year.

Reconstruction.
Just shy of one year after Ben's birth, I went in for a major reconstructive surgery.  Doctors had mistakenly stitched through my ureter and a urologist in Rochester wanted to try and cut the damaged part off my ureter and reattach it to my bladder.  I had a fistula that ran from my bladder to where my cervix used to be, fistulas are very difficult to repair.  I had a hernia almost the whole length of my stomach scar and I had scar adhesions throughout my abdomen.  They wanted to perform many different reconstructive surgeries, but each surgery required a 6 week recovery time during which I could not lift over 10 lbs.  As a mother of 8, with a baby who weighed more than 10 lbs, I asked them to combine surgeries.

On March 17, 2014 another team of doctors worked for over 8 hours to do both laparoscopic surgery on my kidneys, and open surgery on my stomach and intestines.  They once again cut down my middle and really fixed me up good.  The recovery was intense and painful, but SO worth it!!  I was VERY ready to get rid of that irritable stent, two nasty stomach drains, and lovely catheter that I had tracked around for almost one year.  Ugh.
Worth it.
Today I am doing well, so very well.  Ben is a thriving, healthy, ACTIVE, sweet little miracle baby.  Our physical recovery was only one part of this story.  This was an intense emotional and spiritual journey for me and my family.  I was not the only one who suffered, nor the only one who needed healing.

As I endured my Accreta pregnancy, I shared my life here on this blog.  The support that I (that we) received from family members, friends, and complete strangers is indescribable.  I could feel the very real strength that your prayers gave me.  Just writing about my experience publicly was therapeutic for me.  Through Hope for Accreta foundation, I met so many other women who had experiences similar to mine.   I continue to receive emails and messages from women all over the world who are called on to endure much.

I have learned a few things over the past couple of years.

I have learned that we are NOT alone.  God is with us.  Angels surround us.  We are brothers and sisters in this big world.  Our experiences are individualized, but the lessons we are learning are universal.  We need each other.

I have learned that our bodies are amazingly adaptive.  We can heal.  When the main arteries to my legs were cauterized, my body found another route to deliver blood to my toes.  Healing hurts sometimes, but it IS possible.  I have no doubt that our bodies were created by a divine creator.  I love my warrior body.  Yes, I've had many health trials, but I have healed.  AMAZING.

I have learned that LIFE is worth living.  Life was not meant to be easy.  Good people are often asked to endure really hard things.  But, even in the worst of times, especially in the worst of times, there is SO MUCH good in life.  People are good.  In time, we forget what pain feels like.  We remember feeling pain, but we don't often relive it.  Goodness, kindness, service, love, these feelings stay with us.  Although my surgery was two years ago, I still swell with love when I remember the kindness of virtual strangers for me and my family.  I feel the good stronger as the hard fades.  The good in life makes life worth the hard.  I guess I'm saying, I would choose again to endure the pain I endured to feel the love that I felt.  I would choose life, even knowing that life is hard sometimes.

I have learned that we are strong and resilient.  I am stronger than I thought I was.  I'm brave.  I'm optimistic and funny.  I feel like this experienced showed me what a beautiful marriage I have, what resilient children I have, and how blessed I am to be a mother.  Learning about myself has given me greater hope in others.  When I hear people afraid, I honestly KNOW that they are stronger than they think they are.

I have learned that faith is a CHOICE.  So many times I could have doubted God.  I could have chosen to be angry or afraid.  I had to absolutely choose to believe.  I chose to focus on the miracles not the mistake.  I chose to laugh instead of cry.  I chose to HOPE instead of FEAR.  I used to think that we had to figure out what we believed by searching our thoughts and feelings.  I don't think that way anymore.  I absolutely know that when hard times come we will have so many different feelings flooding our minds.  We don't need to figure them out, we need to CHOOSE what feelings we will feed and focus on.  There were many hours where I cried, complained, and was really angry at God.  Trust me, He has heard a lot from me throughout my life.  But, it always came down to a choice-- so what?!  This crap is happening are you going to stay mad or are you going to find the silver lining?  There was always sun shining through the clouds.  ALWAYS.  Faith is an absolute choice.  As I chose to feel His love, I was filled with His love.  As I chose to SEE miracles, I saw more and more miracles.  As I focused on the good things doctors and nurses did to help me, I saw more and more good things.  Before this experience I always felt that my faith was a gift.  Today I see that faith is an ACT.  We choose.  I love that.

I have learned that suffering is sacred.  Healing hurts.  Our natural instinct is to shy away from sadness, sorrow, or pain.  I don't think suffering is always bad.  Often doctors or nurses must hurt us as they are helping us.  Often we must endure in order to grow.  Like a butterfly that must break out of its cocoon on its own in order to be strong enough to fly, the hard things we endure in life are designed to make us the people we need to be.  I'm grateful for the opportunity I had to suffer.  I am a better person because of it, my family is stronger, my marriage is sealed.  I understand.

As a Christian, I believe that Christ suffered for our sins.  I believe that He descended below all things so that He could overcome all things.  I never understood this teaching until I tasted suffering.  I still don't fully understand the Atonement, but I have a glimpse of understanding.  Yes, it makes sense to me that the most holy of holies has suffered most.  Suffering is sanctifying.  He who is able to succor ALL men, has endured ALL things.  It makes sense to me.  Our ability to succor others is strengthened by all that we endure.

I have learned that suffering is more normal than a life of pleasure.  We sometimes believe that our trials are the worst, our tunnel vision makes us feel like a tragic victim as we endure hard times.  When hard things happen to us, it is natural to feel sorry for ourselves.  It takes effort for us to SEE suffering all around us, but there is more equality in testing than we sometimes imagine.  When we really look, we see that this life is full of tragedy.  And then, when we see that suffering is universal, our tendency is to loose hope, to curse God, and to ache for others.  Suffering is normal and holy.  I absolutely know that as we suffer, we are blessed with compensatory blessings.  To him who much is required, much is given.  I know it.  And that, my friends, is why life, even when it is hard, is so good.

When I look at my quilt of a body, I feel blessed.  Over two hundred strangers donated blood that became part of me.  Hundreds of people spent years and years in school to learn medical skills that have blessed my life.  I am so grateful for them, for their families, for their minds and hands and God-given gifts of healing.  Hundreds of people have literally held my insides.

My mother gave me life, God gave me breath, and so many have stitched me together time and time again.  My life has been spared MANY times.  I wonder why?  It is inspiring and humbling.  Scar tissue is stronger than regular tissue-- my scars have enlarged my heart and soul and I feel saturated with love and gratitude for so many.
I am a HUGE advocate of the Red Cross.  I believe donating blood is godly, the greatest gift you can give.  People don't need food or clothing or shelter, if they have no blood.  Blood is something that costs no money to give, only time and a little inconvenience.  Donating blood is giving of your life to save another.

Many Christians partake of the Holy Sacrament each week.  The bread and water we eat is symbolic of Christ's body and blood.  As we symbolically partake, He is becoming part of us.  As I partake of the Sacrament each week, I can't help but be grateful for so many in this world who have given their blood for me.  I am alive because strangers gave of themselves.  You literally are a part of me.  I love that.  In the USA we use 44,000 pints of blood everyday.  Blood does not have a long shelf-life, I think 2 weeks for regular blood and 5 days for platelets.  Donate blood.  It saves lives.
Life after Accreta is not easier than life with Accreta.  It's just different hard.  It feels so good to be one serving instead of the one being served.  I hope to continue to find purpose and meaning in my life.

I feel so grateful for every day that I am alive.  Birthdays are holy days for me.  I am grateful to be here to parent my eight beautiful children.  I feel lucky.  It may sound unbelievable, but I honestly think I would feel lucky and grateful for my life, even if I would have died that day on the operating table.  In time, I would have felt honored and blessed by my experience even if Ben would have died.  Someday we all will die.  We are lucky for the days we have now.  Life's experiences are refining gifts and holy opportunities.


This little boy was worth the effort it took to get him here.
Life is worth the struggle.
It is the climb that strengthens the soul.
I thank God for allowing me to learn from my Placenta Accreta experience.
I feel honored to be a mother.
I KNOW life is good.



If you made it all the way through this story I'm impressed!!
Would you consider voting for me and Ben as the 2015 Face of Accreta?
Honestly, I love everyone of these women.  Just vote for someone and help us raise awareness!
You can vote once every 24 hours.  THANK YOU!!

8 comments:

Diane Crocker said...

Oh my goodness Jenifer! You have such a gift of writing, sharing and inspiring! I have read some of this before, but chose to read it again today. What a blessing you are! Your beautiful children and family will always be in my heart and as an example of what can be done even in the most trying of circumstances. Thank you for sharing. God Bless you all!

Nancy Thompson said...

Wow! Amazing story. I'm glad that things continue to improve. It was nice to see the Moss kids again too. Philomath misses them.

nancy said...

hello. i read this

Bri!!! said...

Amazing amazing! I voted. Thank you for sharing!

Kristen said...

I cry every time I read your story. How awesome is God?!! I wonder how many of your children will go into medicine because of the miracles they witnessed. Thanks for sharing and being you, your blog is so uplifting. I voted once but it won't let me vote again!

Jennifer said...

This is a wonderful, beautiful, truthful story! Thank you so much for sharing. And for the record, after all that you have been through, your belly look so beautiful! Your family is gorgeous and each of you will touch so many lives through this experience. May you celebrate every day with love!

karris nicholas said...

I remember checking back on the blog every couple of hours like a stalker on the day you were to have Ben-I was so worried! Beautiful story!

Anonymous said...

I just happened to come across this blog looking for information since I was diagnosed with Placenta Previa and Accreta on yesterday. And reading this, I can't even express the blessing that this is. My husband and I have counted this a faith walk the whole way. We are in a city with no family or support center, just us, our 15 year old daughter, and God Who is always with us and has never left us. It's funny because I am not afraid because I don't believe that God would do or allow anything that is outside of His plan for us. God bless and keep your family and may He continued to be with you always!

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