February 21, 2013

Week 19- Pregnant with Placenta Accreta/Percreta

A lovely picture of a uterus, showing the differences in a normal  placenta,
and a placenta with Accreta, Increta, or Percreta.  Percreta is VERY rare.
Placenta Creta occurs in about 1 in 2500 pregnancies today
(this number is about 1 in 500 if you have had prior c-sections).
Of those cases, only 5% are Placenta Percreta.   

{background info- Hello! My name is Jenifer and I am a stay-at-home mother to seven, wonderful children (2 boys and 5 girls).  I am currently pregnant with my eighth child (A BOY!!) and was diagnosed with Complete Placenta Previa (CPP) and Placenta Percreta.  Two of my previous births were emergency c-sections, I had one prior D&C after an incomplete miscarriage, and a surgery on my small intestines when I was in middle school.  

My placenta is on the anterior wall of my uterus adhered to the myometrium, directly over my previous c-section scars, and has spread (like a cancer) to other organs in my abdomen, mainly my bladder.  Doctors also note that my Percreta covers almost my whole placenta, not a small portion.  They are hoping to begin steroid shots at 32 weeks and deliver with a large team of specialists (and a lot of waiting blood) no later than 34 weeks (that will be around June 1st).  CPP suggests that I will probably begin bleeding prior to 32 weeks, if that happens I will be hospitalized until my delivery.

I also have Beta Thalassemia Minor which contributes to severe anemia.  I bled/spotted for the first three months of this pregnancy which led to visits to the Office of Genetics and Maternal-Fetal Medicine where I was originally diagnosed with CPP and possible Accreta, around 12 weeks.  I receive lots of blood transfusions and enjoy many doctor's appointments.  I am currently on pelvic rest, partial bed rest, taking vitamins, drinking green smoothies and trying to find joy in this journey.  

We feel SO blessed to have this baby and to be in the hands of skilled doctors.  This is a record of my pregnancy for my family and for those of you who may be experiencing something similar.  Yes, I share a lot, perhaps too much.  I am one who learns much from the experiences of others and I'm happy to share my experience with you, in the hopes that somehow it may help.}

Week 19--  
Doctor Appointments.
I met, for the first time, with Dr. W with OHSU Doernbeche's Perinatology.  After another intense ultrasound from "the best Sonographer in Oregon", we again discussed Placenta Percreta, Complete Placenta Previa, and what a dangerous condition this is.

This time I got the VERY direct abortion talk.  (It felt much like the "how babies are made" talks of my youth.)  My new doctor wanted me to understand that we were not talking about aborting a baby because it might not be born "perfect", we were talking about aborting a baby, to save my life-- for my other seven children.  She specifically said that this surgery WAS much less dangerous at 19 weeks than it would be as my baby and placenta grows.  She wanted to be sure that if I was considering terminating this pregnancy (ie. killing the perfectly healthy baby that I had just spent an HOUR watching suck his thumb and kick in our ultrasound) we needed to decide NOW not LATER.  I wanted the doctor to understand that I was very aware of the CHOICE I was making and it was a decision that we had not made lightly.

The last two cases that were similar to mine, ended up almost dying in the OR.  The last case, the mother needed over 40 units of blood.  She said, "If you are not scared, I have not done my job."

I wish I would have said, "The last two cases, the mother and babies both lived!!"  Scary, yes... but I still have a 90% chance of living!!!  I can handle 40 units of blood to save the life of my baby.  I am not ignorant.  I am CHOOSING this dangerous surgery to bring this baby into this world.  I understand the risk, I am willing to take this risk... NOW, let's talk about how we're going to WIN this battle.  In reality I was very quiet and Todd and I were both wide-eyed.  I finally asked, "How good of a surgeon are you?!!  Can you save our lives?"  THAT is what I wanted to talk about.

I watched in wonder as Dr. W switched into action.  SHE IS AMAZING!!  My eyes teared over as she explained to me the details of my case.  This doctor gets it, and she knows how to save my life and the life of my baby.  She will not do the actual surgery, she will coordinate with other doctors.  She told me the specialists she is going to try to get for me-- the BEST doctor who deals with blood conditions and pregnancy, a very senior surgeon with OB/ONCOLOGY (placenta acts much like cancer, so the Oncology Dr.'s are the best surgeons), Urologists, etc.  She detailed the tests that she wants me to have as we get closer to delivery.  I will have a scope of my bladder and an MRI with a controversial dye so they can see the placenta outline better.  She said we would have to battle radiology to get them to use the dye on a pregnant woman, but that she feels the benefit outweighs the risk.  Again, that test will be later on, around 28 weeks.

For the first time this pregnancy, I felt so validated.  She addressed the back pain I was experiencing and showed me how kidney pain, liver pain, and back pain were different.  She suggested transfusions to keep me over a hemoglobin of 8, but wanted me to see a specialist as soon as possible.  She tested my urine for blood and sent it out for cultures.  She was concerned about my previous intestinal surgery and how the scar tissue or adhesions from that surgery could affect my upcoming delivery.  She double checked the images of my cervix to be sure it was still tight.  She said that pain is not commonly associated with my condition, but acknowledged that some women can feel crampy as the placenta spreads to other organs or abdominal muscles.   I really felt like she took everything that I told her and respected my opinion.  She talked to me like I was smart, and she really seemed WAY smarter than me.  It made me laugh, but I kept thinking how like a woman she was-- instead of dismissing my symptoms as unrelated to the Percreta, she was able to look at me as a whole and understand that everything was related.  I completely trust her.

Dr. W says to call 911 or RUSH to the ER the second I think I'm spotting or bleeding.  I'm 2 hours from OHSU, but they will life flight me from my hospital ER if needed.  She says whether I live or die is more about the capacity of the blood bank than the skill of the surgeons.  THANK YOU FOR DONATING BLOOD FRIENDS!!!

I will return next week to meet with the other doctors that she recommends.  

Test Results.
CBC- Hemoglobin 8.1, Hematocrit 26 (no transfusion, check again in 7 days)
No blood in my urine!
Two ultrasounds (internal and external) again confirm Percreta, where tendrils of my placenta have entered my bladder.

Physically at 19 weeks.
I feel weak and dizzy and light-headed.  I won't be surprised if they transfuse me again soon. I'm surprised that my blood has only gone from 8.2 to 8.1 and yet I feel my symptoms so much more.

I cramp if I walk too much or do too much.  I also feel symptoms of a UTI, which I'm sure is related to my Percreta.  Still not spotting or bleeding AT ALL.

We bought a gel-top for our mattress (from Costco) and a leather recliner.  I hope these will help my resting times to be a bit more comfortable.

Mentally at 19 weeks.
Most of the time I'm doing really well.  There are times when I sit with my kids and my heart just loves them. I can't stop my tears.  I cry a lot when I rock my baby to bed.  As tears stream down my face, she asks, "Wrong? Mom?  Wrong?"  Sweet girl.  I cry a lot during church songs, I cry a lot when my kids hugs me. Sure, this is affecting me on an emotional level. Oh, how I love my children and I am SOOO glad to be home with them.

They told me to come ready to stay in the hospital when I went for my Portland appointments.  The thought of staying in the hospital from 19 weeks on was REALLY hard to handle.  My family needs me.  I WANT to be here for them.  I want to rock my baby to sleep.  I want to hear about their day.  Immediately, I knew that being at the hospital is WAY harder than being at home on bed rest.

I am completely amused at how often people tell me this is a DEADLY condition.  I asked my MIL, who recently battled breast cancer, if they were constantly telling her that she could die?  She said that she hardly ever heard that... the doctors and nurses were always trying to give her hope.  I wonder why it is so different with this pregnancy.  Seriously, EVERYONE points out to me the fact that I could DIE...  Sigh.  I'm ready to be done with that and to start focusing on how I and my perfectly healthy baby can LIVE!!

There are times when I feel completely anxious.  When I was waiting for my referral to OHSU to be processed, I got scared.  When I go to a regular OB or hematology appointment and feel like I know more about my condition than they do, I feel anxious.  From the very beginning of my pregnancy I have KNOWN this was a different pregnancy.  I did not need doctors to tell me I was fine, I needed them to listen and tell me what was wrong.  For me, I don't feel anxious when doctors tell me I need to expect hard things... I feel anxious when they can't tell me what to expect.  We left OHSU with a whole head full of hard things in my future-- but we left with PEACE.  They have seen women like me before, they know what to do, and they are aware of me.  I'm not anxious as long as I feel like I'm in good hands.  I really do feel that after this week.

I will tell you the BEST thing I heard this week.  My MIL said, "Jen, I'm praying for you every day.  I'm praying that you and Todd will be blessed with WISDOM."  That was PERFECT.  I pray for that too!  So many people offer advice or warning or try to tell me to take it easy... sometimes their well-meaning "go sit down" makes me feel like they are judging me.  I hate to feel like everyone around me thinks I'm being dumb with my health, this baby, or my other children.  It helps so much to hear encouragement, faith, and HOPE.  I do believer that Todd and I will be blessed with wisdom.  I will know when I'm doing too much and I will feel when something is OK.  Even if I start to bleed, I am certain I will know exactly what to do.  I'm so grateful for a sweet MIL who trusts us and prays for us during this crazy time.

My advice?  No matter what you are struggling with in life, TRUST YOURSELF.  (It's not really yourself that you are trusting-- it is God.)  Listen to the voice of the Spirit that is within you.  As mothers, as women, as children of God, we are entitled to divine revelation.  We will know when we need to worry and we will feel when things are fine.  If you think something is wrong, keep seeking until you get answers.  DO NOT STICK WITH DOCTORS WHO YOU DON'T FEEL COMFORTABLE WITH!!!  Doctors need to FEEL right to you.  Trust that voice inside you.  You will feel peace when things are right, even when things are still hard.  I think anxiety comes from feeling out of control or from continually being told to ignore what you feel is right.

Today, I feel so grateful to be working with these doctors and to be getting the very best care.  19 weeks is close to 20 weeks and that is pretty close to a viable 25.  I'm going to get through these next few months!  This time next year you are all going to be looking at picture of me with my darling family and adorable youngest boy.  In the mean time, I'm going to enjoy this journey... bumps, scars, blood, surgery and all.

Life is good.


Jennie Plastow said...

Wow! Thanks so much for that post! I needed to hear your positive attitude about going through it all. You amaze me! Your faith, is so comforting. Good luck with everything! You are in my thoughts and prayers constantly. I'm so glad you found the doctors that you did. I agree, you have to feel safe and comfortable with your doctors. I'd be so lost without mine. Keep me posted. Lots of love and prayers coming your way!

Momzoo said...

You are in my prayers, thank you for being such a beautiful example of Godly womanhood and motherhood!

Mama Rachel said...

Your example of faith and trust in the Lord is so inspiring! Thank you for sharing your journey with us.


Amber said...

Wow Jennifer-- prayers your way-- I think you are right-- it is the unknown that is the most difficult, but it sounds like you are in good hands and you will be able to get that baby here safely and you too, but keep us posted. Hugs and prayers!

pioneerfamily said...

Wow! Our prayers are with you. I pray for the time you get to hold that sweet boy in your arms!

pioneerfamily said...

Wow! Our prayers are with you. I pray for the time you get to hold that sweet boy in your arms!

beckyjune said...

You have always been such an amazing example of faith and courage. We will be praying for you, your family, that little baby boy and all who take care of you. Heavenly Father is always aware of us and our needs/concerns and I know He is keenly aware of you and the sacrifices you have made and continue to make for your family.

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