February 16, 2013

Week 18- Pregnant with Placenta Accreta/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 and I had one prior D&C after an incomplete miscarriage.  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.}

Week 18--  
Doctor Appointments.
On Wednesday we met for the second time with the Dr. B. at the Center for Genetics and Maternal-Fetal Medicine.  After an hour-long ultrasound with a very skilled sonographer, our doctor explained that things were very serious.  My placenta is full of placental lacunae, which are dark lakes of various shapes and sizes seen within placentas with Percreta.  My placenta has indeed made it's way through my uterus and is connected to my bladder.  They could see blood flowing from my uterus to my bladder.  Additionally, I have a very large Percreta area.  Almost my whole placenta is attached into the muscle of my uterus.  The doctor explained that my c-section and following hysterectomy was going to require a very large team of specialists.  Although he is an experienced surgeon, at an advanced hospital, he does not have access to the team of surgeons that my surgery will require.  He said that the blood and vascular involvement of my placenta is going to add to the riskiness of this surgery.  He is referring me to Portland for all further care.  It is likely that I will meet with Urologists there to have my bladder scoped as it gets closer to delivery.  They will schedule an appointment for me, in Portland, in three weeks.

The baby is developing perfectly, he moves a lot, has a healthy beating heart and a well-developed brain.  There doesn't appear to be any chance of Spina bifida (which we were told was a possibility with this condition.)  Spine looks good!

I came to this appointment with a few specific questions-
1- Bleeding?  Why did I bleed the first three months?  He was unsure and said women bleed for many reasons.  He didn't think that early bleeding had to do with my current situation.  I have not bled or spotted for the past 4 weeks and my cervix looks good and tight.

2-  Blood?  When does he think I should get blood transfusions and what level should I try to stay above?  He said many pregnant ladies have Hemoglobin levels around 9 due to increased overall fluid levels (although normal is between 12-16).  He would transfuse me if my Hematocrit levels dropped under 25 (normal non-pregnant is 35-40), and felt that the baby is not affected until I drop below 22.  (My current blood levels are 8.2 and 26.)

3- Premature Delivery? Why does he want to take the baby at 34 weeks?  What is the risk of waiting until 36 weeks?  He said the risk is maternal death.  Recent studies show 34 weeks yields the best results for both the baby and the mother.

4- Bed Rest?  I wanted him to explain SPECIFICALLY what my risks were with regard to physical activity.  I have been cramping a lot lately and have had a lot of lower pain, is this normal or dangerous?
He explained that the risk of bleeding comes mainly from Placenta Previa not Accreta.  He said that if I'm feeling pain doing something, I should not do that thing.  I should pay close attention to my body and especially to anything that made me spot. There is no specific evidence that suggest bed rest will help me avoid bleeding.  He said I was just as likely to bleed in the middle of the night, in bed, as I was cooking dinner.  Bleeding is dangerous.  Prior to 25 weeks they will do what they can to stop the bleeding, but would be less likely to save the baby.  Bleeding after 25 weeks, I would most likely be hospitalized until my delivery.  25 weeks is the general fetus viability age, although he does know babies that survive younger than that.  The most proven and dangerous activity is any sexual activity or orgasm.  (I noticed this in the beginning of my pregnancy that my biggest bleeds were following intimacy.)  He said I should be strict about pelvic rest and use my judgement regarding bed rest.

Test Results.
CBC- Hemoglobin 8.2, Hematocrit 26 (no transfusion, check again in 7 days)
maternal serum alpha-fetoprotein levels- 1.999 (this is raised, suggesting Percreta, but still within the normal range)

Physically at 18 weeks.
I have a cute belly that makes me look definitely pregnant.  I have more energy than I did at the beginning of my pregnancy.  I am still cramping in my lower belly and on the sides, but I feel better when I take naps and don't do too much.  My back is starting to ache at night and I'm thinking of buying a better mattress and reclining chair for the rest of the pregnancy and recovery time.  I have also felt some changes in my ability to urinate.  Nothing alarming.  I have felt the need to potty more often and sometimes feel like I have to go really bad when only a small amount comes out.  (These are usual symptoms of pregnancy, later in the game.)  I was wondering if I had Percreta because of this, even before my appointment.

Mentally at 18 weeks.
I was not shocked to hear that I had Percreta (the most rare and worst case).  Since I have started reading about Accreta, I think I have just known mine would be serious.  Hearing the diagnoses from the doctor was actually reassuring.  I feel comforted that they will be able to prepare for my delivery and all will go well.

The hardest thing about this time is trying not to worry about things.  I am constantly worried I'm doing too much or not doing enough to plan for a very uncertain future.  I wish that I could just zap myself ahead ten weeks and deal with the surgery without the next two months of uncertainty and waiting.  I'm more afraid of dealing with the long wait than I am of dealing with something hard.  I am always reminding myself that my little guy needs this time to grow and develop.  I would much rather have him growing inside of me than struggling for life in the NICU, even if it is hard.

Another hard part is dealing with everyone else's concern.  Some of my family members are very worried and I can feel the stress from them and feel how this situation is affecting my husband and children.  Everyone has an opinion about what I should be doing and how they can help.  It is so kind, and a bit overwhelming.  I'm grateful so many people want to help, I'm not not sure how I need help or how to plan for the future.

I've had a pretty good week.  I've gotten out a lot and tried to rest often.  Sometimes I'm cranky or impatient, I can feel the undercurrents of stress this pregnancy places on my emotions.  But, overall life is good.  Today, I'm most concerned about my home and family long-term.  I have family members that are coming out starting next week, so that should help.  The thought of doctor appointments in Portland (2 hours away) is overwhelming.

My husband and I have had many discussions, I like to analyze and prepare and discuss possibilities and read journal articles and hear case studies; he likes to pretend everything is fine and focus on the day to day.  Both are coping mechanisms and I'm not sure which is more healthy.  I hope I can make it to 32 weeks without bleeding and having to go to the hospital earlier.  But, there is a part of me that thinks being in the hospital would allow me to focus completely on this pregnancy and not feel as torn between home and health.  (Is that bad to admit?)  Ultimately, I would choose home-- but it is a hard health/family balance.

My kids are aware of my condition.  They don't usually care about medical details but we do talk about the possibility that I could go to the hospital for a long time.  They are excited for grandparents to visit.  I can feel a higher stress level in the home, but that is to be expected.  They have asked if I am going to die.  I tell them probably not but that anyone could die, at anytime.  I like to tell them that even if I did die, I would still be near them.  I would pick their husband for them and whisper in their ear everyday.  They asked if I would tell them the answers to their spelling test and I said, NOPE.  I would remind them to study though!

This week my aunt commented on how calm I seemed to be.  She said, "You act like you just have a bloody nose and need some extra tissues."  Ha!  That made me laugh.  I wrote the previous blog post to let everyone know that even when I am peaceful and not freaking out, I am STILL very aware of the seriousness of this condition.  The odds are that both my sweet baby and I will be just fine after a pretty traumatic delivery and recovery.  But, I know that this is probably one of the most serious pregnancy conditions there is.  I know that I could die and my baby might not make it.  This is something I try not to dwell on, but that I am very aware of.  It is more serious than the possibility of a bloody nose, but there is LITTLE I can do today to change my situation.  This is a marathon, not a sprint.  I'm ready for the journey.

So grateful to be here at 18 weeks, grateful for an active and healthy baby, and grateful I am not bleeding.
My short-term goal is to make it to 25 weeks without bleeding.  It will feel good to know that my baby has reached viability!

Helpful Links.
Surviving Accreta- the blog of a friend of my cousin who is currently hospitalized with Accreta.
Placenta Percreta and the Urologist- a journal article about how Percreta can affect the bladder and what they do about it.

Thanks for reading.
Life is good.


Handsfullmom said...

Hang in there, Jenifer. I've been praying for you.

CTR Mama said...

Love your faith and determination! My mind whirls at the different aspects you have to juggle. Prayers for you and your family.

Anonymous said...

Jenifer, I don't know you but read your blog once in a while...I admire your courage during this trying time and I just know you will be rewarded with a healthy baby boy! All the best to you and your family!

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Marie said...

So many good thoughts and prayers for you all...
Please know your positive and nurturing attitude is such an encouragement to many, Jenifer. Keep taking good care of yourself and your precious baby. ❤
(...wish I lived closer!)

Jennie Plastow said...

You took the words right out my mouth on this post. I have been feeling much of the same way this whole pregnancy. I often wonder if I have percreta because I've had bladder issues from day one. The ultra sounds havent shown any issues there. So the doctors think its just Accreta. I have been feeling like either way...it will be fine so I shouldn't worry about it.

The uncertainty is a lot to handle. I'm sure it's even greater with your condition. I have no right to even think of relating to what you are going through! I can say however that you will know when you are to go to the hospital. As soon as the doctor talked to me about their desires to have me here. I knew without a doubt that the hospital was where I was to be. I'm so glad I listened. The Lord will guide every step of it. Even the scary and unsure parts. I look back now and see a little more of their purpose. Thanks for strengthening my faith! It will all be but a small moment!

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