March 28, 2013

Crap... and other hard things.


This journey has opened my eyes to so many possible trials.
Isn't the mental always harder than the physical?
Ultimately, as I have come to really SEE each situation I am faced with I can see the sunshine through the clouds.



Here is my list... 
I call it "Crap... and other hard things."
(Crap is referring to the latest possibility that my placenta is affecting my colon-- 
my ability to potty may soon be severely limited.)


1- Bed Rest, Doctors Appointments, Not Being Able To Care For My Family...
Actually, none of these things seems too bad.  (This does not mean that I don't sob when my baby asks me, "You going to doctors?" or that I don't yearn with my whole being to run a few steps from the car into the store.)  I remind myself often that bed rest is a gift.  I try to ask, what can I do today that I couldn't do if I were cooking dinner or cleaning my home.  It is a blessing to feel others serving you, even when you would rather get up and do it yourself.  I really, really, really love spending time with my husband- even it is in less than ideal circumstances (like urology appointments). Every hard thing has a silver lining.  I can spend my time whining about all I can't do, but that doesn't change anything.  Instead I hope I will always remember how I wish I could cook dinner for my family and accept this season of life.

2- Bad Luck and Placenta Percreta... This could NEVER happen to me!
Percreta was our first eye opener.  The odds were so slim-- and yet, this is my reality.  I think being diagnosed with Percreta just slipped me into a state of expecting the worst.  Sometimes I feel sorry for myself when something else goes wrong, but most of the time I think it's funny.  I like to think "Of course this would happen to me."  I also like to think that God lets it seem really bad so that I will experience great miracles.  Being faced with a lot of bad just qualifies you to really SEE His hand in your life.

I was sitting in church one Sunday prior to my Percreta diagnosis.  In the midst of praying with all my might that "my placenta would stay inside my uterus", I had a strong feeling envelop me.  It was love for the baby in my womb.  At that moment, with tears running down my face, my prayers changed.  I prayed that God would keep him safe, help him to grow, protect him.  In one instant I realized that I would rather a healthy baby than a confined placenta.  I let go of my plea for protection for me and plead instead for a placenta that fed my son.  My placenta is a bit out of control-- but I am so grateful that it is doing it's job... my placenta is feeding my baby and every day I thank Heaven for that miracle.

3-Death...
Death, for me, is not the worst thing that could happen, it is a natural and inevitable part of life.  Everyone should be told by their doctor that they could die... it changes you and makes you realize that you LOVE living.  How I cherish each diaper I get to change and each night I get to sit at the table and eat dinner with my family.  The truth is, we all have a chance of dying, I am just more aware of mine.

Percreta mortality risk (the chance of dying), is only around 9%.  I have a 91% of living through this.  Percreta morbidity rate (the chance of needing repeat surgeries or getting complications) is 40%.  I live in 2013, I am being treated by a team of the best doctors in the world and have access to the best medical technology.  I have a VERY good chance of living.  And, I'm counting on LIFE for both me and my son.   I also realize that  I have a greater chance of long-term complications than I do of dying.  Sigh...  THAT will probably be my fight.

4-Preemie Baby With Complications...
I will have a preemie baby.  One of the most emotionally difficult possibilities I have faced with this pregnancy is that of giving birth to a medically fragile tiny baby.  There are so many different levels of preemie babies and so many things that could be fine or could go wrong.  I don't think my baby will have long-term complications, but that is a possibility.  Anytime you get pregnant this is a possibility.  The time I spent learning about this journey (see www.understandingprematurity.com) has made me even more grateful for the healthy pregnancies and deliveries I have had.

Prematurity has got to be one of the most difficult trials both babies and parents are called on to endure.  Having to choose, over and over, whether or not to continue life support or do one more life changing surgery.  Having to watch your baby in pain or struggle.  Knowing that choosing life often times means choosing a very difficult life.  Feeling the pull of a baby in the hospital with other needy children at home.  Knowing when letting go is the best answer.  Oh, my soul aches for those of you who have made these wrenching decisions.

Raising a medically frail child or a child with disabilities has got to be one of the most beautiful and difficult experiences of life.  Preemie trials are often ongoing and continual.  My heart goes out to those of you who have experienced this or are living with it on a daily basis.  Having a premature birth is not an event, it changes you.  Some of the best people I know live this life and I would be humbled to join their ranks.  I'm not sure this is a life that any mother would choose to know.

Sigh.  Last week, I stopped reading the Preemie book.  I have laid this possibility on my internal alter.  I cannot comprehend how this would change my life and mold my soul.  I know that I would get through it somehow, but, like most mothers, I would rather suffer myself than watch as my baby endures much.

5. Hysterectomy... the end of an era.
Many women who have Accreta are faced with the devastating news that this will be their last pregnancy.  I know what it feels like to yearn for a child.  This ache, which can come from a number of different situations, has got to be another of the most heart wrenching of life's trials.  I have a mother's heart and even with a house full of children, I understand that pain.  I cannot imagine living with that emptiness and yearning.  What a difficult trial.

For me, I have known for some time that I had a little boy.  His spirit has called to me from the heavens and my spirit hungered to know him.  I KNEW I had a baby boy waiting... and I gave birth to FIVE girls.  Today I cannot imagine life without any of my sweet girls, I am so grateful for them. And yet, this son is the one that kept me having children.

Finding out that I would not be able to have any more children immediately after finding out that I was expecting a little boy, was not difficult for me.  I felt finished and complete.  I'm certain that the Lord gave me years of yearning for a son so that I would know, beyond a doubt, that this baby was meant to be mine despite his difficult entry into the world.  This has been one of my greatest tender mercies throughout this pregnancy.

Honestly, the thought of never having to worry about birth control or monthly periods is actually a blessing.  I'm also grateful that I don't have a choice.  My uterus is finished and our family is complete.  Todd said, "I wonder if God knew that both you and I would never be able to choose to stop having children.  We both love kids so much that He made the decision for us because He has another work for us to do."  I thought that was a sweet way to put it.

Yes, I would be feeling very differently about my impending hysterectomy if I wasn't expecting my 8th baby and even if I was pregnant with a girl and might have that impending "I have another one..." feeling.  But, this is not my situation.

I do hope I get to keep my ovaries.  Hormonally it is good to keep your ovaries.  I understand that they may have to take them and I just think that if that happens then maybe it is because synthetic hormones will be a blessing in my very hormonal life.  We'll see.  I also kinda wanted to keep my cervix.  It doesn't look like that will be happening... and so they will just sew me up.  Lovely.

As so many of my fertility organs are going to be removed I thank God every day for the fact that I had children young.  I'm thankful for the blessing of carrying 7 almost 8 children in my womb.  I'm grateful for a uterus and cervix and ovaries that have served me well.  I am grateful to be married to a kind man who is a wonderful father, spouse and mate.  What a miracle pregnancy and  birth is.  An absolute, complete miracle.

I realize that many struggle with fertility while many others endure the challenges of poor life choices, some have cancer, medical challenges are numerous and intricate and difficult.  I have not taken the miracle of life for granted.  My children are gifts from God and I am grateful and in awe of my opportunity to participate in this wonder.  As I bury my uterus, I will do it with a holy gratitude for the experience it has given me over the past 15 years.  I am not sad that I will have a hysterectomy.  I am so grateful.  Life is beautiful.

6. Blood, bleeding out and transfusions...
Blood equals brain power and oxygen and energy.  I know what it feels like to be weak and hazy and appreciate what it feels like to be able to exercise without fainting.  I'm grateful for blood an our ability to make it.  My body doesn't make blood well sometimes.

Often, major surgeries involving the placenta, include great amounts of blood loss.  Blood loss is the number one cause of death with Percreta patients.  The last two Percreta surgeries at OHSU, required 40 units of blood transfusion.  Just so you know, you don't even have 40 units of blood in your body you have 10 or 12, it was coming out as fast as it was coming in.

I am a HUGE wimp, or at least I began that way.  I hate needles and IV's and transfusions.  I guess I've gotten used to them over the past 15 years and I realize there are worse things (like catheters).  When they transfuse me, I always ask for a big hot pack over my arm.  Warm blood goes in so much smoother than cold, peanut butter blood.  I also insist that they start the transfusion very slow, so they don't blow out my vein at the beginning and have to redo the IV.  I've also learned that larger IV's hurt more going in, but transfuse blood so much better than the small ones.  Blood transfusions-- I got that one down.  (Thank you to every one of you who have donated blood-- you have saved MY life.)

7. Morbidity- surgeries, catheters, drains, infection, bowel or bladder reconstruction, impaired bladder or bowel functions...  urine and feces and blood, oh my!
Blah!!!  Yuck.  Ewe.  Ouch.  Puke.  Poop.

I am NOT super excited for the lessons I am learning about my waste system.  I don't like poop or pee or long scars down my belly.  I am not a fan of catheters or even the word vagina.  Spreading my legs at an OB appointment is bad enough, spreading my legs again and again for nurses and doctors and residents to study my bladder and bowels is not so fun. Sigh.

I KNOW that there is a very high likelihood my hardest physical trials will come AFTER my surgery.  Recovery is going to be difficult and very well full of improvements followed by setbacks.  I keep preparing myself for "worst case", only to realize that there is ALWAYS a case that could be worse.  I really don't even want to know what the real worst case is.

I am preparing myself for bladder and bowel issues after this surgery.  Possibly my recovery will take months and I might not ever return to the normal I once knew.  I am grateful for every trip to the toilet I have taken for the past 35 years and can't help but appreciate the ability to pee and poop without having to see or touch any of it.  If I have to have a major reconstruction effort, I know that I am not the first person in the world who has had to do this.  Surprisingly, I know many people who have had bowel issues.  I'm ready to start learning new terms- like colostomy and drains and other yucky things.  I'm grateful for modern-day technology.

And, as horrible as this seems to me, I keep saying to myself... I'd RATHER it was ME than anyone else in my family.  I actually HOPE I am the one dealing with the bowel re-section NOT my tiny preemie baby.  I'd pick this over that.  I'd also pick LIFE with a bag of poop under my shirt, over death.  I'd also rather be enduring than watching my husband endure.  I'd rather have a cancer-like Placenta (that is also feeding my baby) than an actual cancer (some foreign mass invading my body).  When my pregnancy is over, my placenta can be removed and will not grow back... cancer is a different story.  I'd rather health challenges while I'm young and otherwise healthy than when I'm older (not that I get to choose any of these things).

8. 9. 10.  The unknown...
None of know what our future holds.  We just don't.  How are you going to cope with your current trials?  How are you going to cope with the surprises on the journey ahead of you?

Yes, trials are tough-- they are supposed to stretch us and refine us.  This life was not meant to be the Garden of Eden OR Happily Ever After.  This is the middle-- the school.  This is the part where we learn and grow and try to endure our journey with grace and gratitude.  This life is a life where the fruits are mixed with the thorns, where sorrow increases our joy and struggle increases our triumphs.

Months ago, I listened to the story of a young, college-aged girl who jumped off of a red rock cliff becoming completely paralyzed from the neck down.  (Yeah, loosing movement in your whole body might be a bit more difficult than pooping in a bag... actually, she probably does poop in a bag too.)  She told of a day where she sat looking in the mirror wondering if she would ever marry (she did) or have children.  She was crying and asking God, "Why every bad thing was happening to her?"  She felt a clear, loving voice tell her, "Do not covet, for I have given you more."  Her life was changed.


I feel that- I am so blessed.  I really have been given much, we all have.  Sure, I have a lot of crappy health things on my plate these days.  But, I have been given much.  I have a beautiful home (that we have to move out of next month), I am married to my best friend, I have seven (almost eight) amazing children who I adore.  I have a wonderful extended family who is serving me daily and church and community and blog friends that feel like family.  It is spring in Oregon and I am surrounded with breath-taking beauty.  I live a very blessed life.  I am grateful every day for all that I have.

We are so blessed even and especially as we climb our individual mountains.
Oh, how grateful I am to be able to SEE the sunshine through the storms.
I hope you can feel the joy moments of life even when it is hard.
This day, right NOW, is a gift.  A great gift.
We are a part of a very unique, eternal university.
We are being molded and refined.  It is a beautiful process.
I am humbled and grateful for this opportunity.
I would choose this.

Even when it is hard, especially because it is hard...
Life is so good.

Week 23- Pregnant with Placenta Accreta/Percreta, Placenta Previa, Thalassemia


See that Percreta picture?  That placenta (the light pink part) is growing through the front of the uterus, heading towards the bladder...
My Percreta goes through the front, the cervix AND the back.  I am EXTRA lucky.
Seriously, someone buy me a lottery ticket-- this is my month.
ps- this "normal" is not really a normal placenta... it is a women with complete placenta previa (a placenta that covers the cervix.)  Normal placentas are usually higher in the uterus.  I imagine that is why most c-sections are lower.
{background info- Hello! My name is Jenifer and this is the story of my high-risk pregnancy.  I am currently pregnant with my eighth child (A BOY!!) and was diagnosed with Placenta Previa and Placenta Percreta.  I also have Beta Thalassemia which contributes to severe anemia.  While this has been a difficult pregnancy and we anticipate a difficult delivery, IT IS WORTH IT!  

We NEVER regret our decision to get pregnant with this baby and are so grateful for this experience!!

 Accreta affects about 1 in 2500 pregnancies.  (It is pretty rare!)  If you have had previous uterine surgeries, your risk of Accreta increases to 1 in 500.  I have had two previous c-sections and one D&C, following a miscarriage.  Although I was at risk, prior to being diagnosed with this condition, I never knew Placenta Accreta existed.  Accreta is becoming more and more common as abortions and c-sections becoming more common.    

Would I have decided not to have another baby if I knew I had a greater risk of Accreta??  NO.  Even with a higher risk, it is still VERY rare.  To me, the gift of bringing a baby into the world outweighs the risk of something being wrong.  For years I knew I had another little boy waiting to come to my family.  This pregnancy is a gift, I believe LIFE is worth the risk.  

I would however, have opted NOT to have a D&C for my miscarriage if I knew it would threaten my ability to have safe pregnancies in the future.  I would also NEVER choose a c-section for convenience-- my c-sections were both emergency.  I am also glad that I found a doctor willing to deliver my last baby VBA2C (it is rare to find a doctor who will attempt a vaginal delivery after 2 prior c-sections).  Vaginal deliveries are better and safer.  Surgery in your uterus DOES affect your ability to have healthy babies in the future.  Mothers need to be made aware of this BEFORE we choose optional surgeries.
yes, this is a pregnant uterus with four placentas and no baby.
not realistic, but it does show the different levels of accreta.  
What is Accreta?  Accreta is where your placenta attaches to your uterine wall instead of to the lining of your uterus.  There are three different levels-- Accreta, Increta, and Percreta.  Accreta is where your placenta is attached to the first layer of uterine wall, deeper than the lining-- often Accreta's can still deliver and save the uterus.  Increta (17% of all Accreta cases) is where the placenta has grown into the muscle wall of the uterus-- this usually requires a c-section/hysterectomy.  The rarest form of Accreta is Percreta where the placenta actually grows through the wall of the uterus and attaches to other organs in the abdomen   Percreta is very dangerous and will require a c-section and repair of other internal organs that are affected.  Percreta affects only 5% of all who have Accreta.  (What is 5% of 1 in 2,500 births? Very rare.)  Most commonly, Percreta involves the bladder which is in front of the uterus (anterior placenta).  Sometimes Percreta involves the bowels with a posterior placenta.  Rarely it involves the uterus, bladder, cervix and bowels...  this is my condition.
can you see how complete placenta previa WITH placenta percreta can lead to a pretty crazy ultrasound?
Often, Placenta Previa and Accreta or Percreta go together.  Placenta Previa means your placenta is at the bottom of your uterus over your cervix.  (Most healthy placentas attach high up in the uterus.)  When the placenta is low, it is more likely to be positioned over old c-section scars (which are usually in the bottom front of your uterus.)  It is easier for the placenta to attach and seep through old scar tissue than it is for placenta to attach to healthy uterine wall-- this makes sense to me.  It is important to note, however, that you can have Percreta or even Accreta on your first pregnancy, or without any previous uterine surgeries.  This condition is just one of those things that could happen in life.

Accreta is most dangerous when undetected prior to birth.  After the baby is delivered, the doctor will try to deliver the placenta.  When the placenta is attached to the uterine lining, it will come out easily.  When the placenta is attached to the wall of the uterus, it will be difficult to remove after birth.  Undetected Accreta will usually result in a placenta that tears during delivery- some comes out and some remains inside the uterus hemorrhaging.  While they are cleaning up the recently delivered baby, the mother will start to feel sick, often begin throwing up and then will begin to hemorrhage   Wise doctors will recognize the hemorrhage and rush the mother into an emergency hysterectomy where the uterus will be removed to stop the bleeding.  If the mother has an undetected Percreta, as they remove the uterus, the bladder will tear and they will need to reconstruct the bladder also.  Diagnosing this condition prior to birth is so important.

Accreta can be diagnosed by careful ultrasound technicians pretty early in pregnancy. 
Here are some warning signs that helped them diagnose me--
1- I bled early in my pregnancy (the first 12 weeks).  I believe that I miscarried a twin and in the process shed much of my natural uterine lining making it easier for the remaining placenta to attach directly to the uterine wall.  Accreta is not supposed to cause bleeding early in your pregnancy-- but, i do know others who have had a similar experience.
2- Early ultrasound showed a low-lying placenta.  Placenta Previa paired with previous c-sections should immediately raise a red flag that Accreta might be present.
3- My placenta had Lacunae or black lakes in it.  In the ultrasound, my placenta looked like Swiss cheese.  It has gotten more swiss cheesey as it has grown, but the black lakes were certainly present early on and were good early warning signs.
4-  I just knew something was wrong.  Although my OB continually assured me that things were "fine"  I just didn't feel like this was a normal pregnancy.  I pushed to see a specialist and the minute the fetal medicine doctor saw my ultrasound he diagnosed me.  Trust that gut feeling you have and seek the proper diagnosis.
5- Scoping my bladder showed placenta vessels invading.

My placenta is on the anterior and posterior 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, my cervix, and my colon.  Doctors also note that my Percreta covers almost my whole placenta, not a small portion.  This is extremely rare.  They are hoping to begin steroid shots at 32 weeks (to help my baby's lungs develop) 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).  If I begin bleeding prior to 32 weeks, they will life flight me to OHSU and keep me hospitalized until I deliver.

My delivery will be a scheduled surgery in the main OR.  They expect over 20 doctors and it could take up to 8 or 9 hours.  The last two Percreta patients at OHSU required 40 units of blood transfused and had a very intense surgery.  A healthy adult only has about 10-12 units of blood in their body.  Yeah, that is a lot of blood loss!

I am currently being treated by a team of specialists at OHSU.  The head doctor I work with is in Perinatology and Fetal Medicine, my surgeon is in Gynecology/Oncology, I have a Hematologist that specializes in Obstetrics and a Urologist.  Additionally they are coordinating with the blood bank to ensure there is enough blood ready for my extensive surgery and I've met with Anesthesiologists.  In time, I will meet the NICU team.  Yes, I have MANY doctor appointments.  We feel SO blessed to have this baby and to be in the hands of skilled doctors.  

I have been on complete pelvic rest and modified bed rest since 12 weeks of pregnancy.  My husband and other kind family members are taking care of my home and family while I spend most of my days sitting or laying.  This time of resting has been difficult, but it has also been a great gift.  I am thankful for every week that this baby is growing bigger and healthy inside of my womb.  I can't wait to meet this little guy-- our grand finale!!

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.  Thank you for being a part of this journey with me.  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 23--  

Doctor Appointments.

Hematology-
They continue to do a lot of blood work to see if I'm having a hemalytic reaction to my blood transfusions.
I feel good and my blood looks good, so no transfusions.
She explained a lot of blood stuff that went over my head.  Basically, I needed the assurance that they would be prepared with blood when the time comes for my surgery.
This doctor wants me to call her directly if I am concerned or begin to feel bad.  I had been trying to leave messages with her nurses or nurse practitioners when I felt I was having a reaction and she said in the future contact her directly.  Thank goodness!
Blood is looking good this month!
She ordered more lab work and sent me over to do labs following our appointment.

Perinatology-
Prior to my appointment I had another intense ultrasound which lasted over an hour- both external and vaginally.
The baby looks good, but my placenta is not good.
The whole bottom of my uterus looks like Swiss cheese placenta... there is no discernible defining line where the uterus usually is.

I can not accurately describe what it is like to see my ultrasound.  It is almost UNBELIEVABLE.

Your uterus is like a balloon, on the right (or front of your body) is your bladder.  The tie at the bottom is your cervix that opens during delivery to let out the baby and placenta, and to the left (or back) is your bowels and intestines.  Other organs are squished all around your continually expanding balloon uterus.
On an ultrasound you can usually see the border of your uterus.  It looks like a white line, in the shape of a big circle.  The placenta is usually inside the border of the uterus.  The bladder also looks like a smaller circular spot next to your uterus, and your cervix looks like a thick, fat carrot at the bottom.

On my ultrasound the whole bottom of my uterus looks like a blanket of swiss cheese placenta.  You can't really see ANY uterus border... it's just placenta with a lot of small lakes of blood.  Amidst this placenta there is a bigger lake-like thing, that is my bladder.  There is a darker, hard to make out carrot shape, that is my cervix, and there is a mess of placenta and bowel.  It's bad looking.

My room was full of doctors and residents and a sonographer and an even better sonographer and I'm asking questions like, "Is that my cervix?"  "Is that my bladder?"  And they are all looking at the screen with this look of "Wow.  That's bad."  I say, "So, they'll probably have to remove my cervix too."  And they say, "Yes, definitely."  It is UNREAL.

The sonographer was really trying to see the back of my uterus to determine how my placenta was involved with my bowels and intestine.  She was using a stick ultrasound up INSIDE me.  As she was trying to see deeper back into me she kept asking me to scoot down further.  I finally laughed and told her I could scoot further down, but she would need to do an episiotomy if she was actually going to see any further inside me.  (Sorry if that was too graphic.)  Just another fun day on the ultrasound table.
This picture confused me a little until I realized it is backwards from my brain.
The FRONT of this mom is to the LEFT...
if her placenta was growing through the anterior wall, it would hit the bladder in the center or left corner of the big picture.  In the Placenta Percreta picture can you see how the placenta has just grown out of the uterus and merged with the border of the bladder.  Because the bladder is smooshed right next to the uterus, the placenta just kind of merges them together fusing everything.  Yup, that is what is happening to me.
Placenta's gone crazy!
If her placenta was growing out the right or back posterior side, see how the intestines are there?
Yup.  It is a good thing that most placentas stay right there in the uterus.
The prognosis-- my placenta is attaching to my bladder (like we had seen previously), but it is also merging with my cervix and appears to be growing through the back of my uterus also, where my colon and intestine are located.  AHH!!!  That was new to me and not so good to hear.

My doctor thinks I look great and am doing well.  She said she will not rest easy until my uterus is out of my body.

The "worst case" scenario is that I will need to do some reconstructive surgery of my bladder and my bowels after delivery.  (As if I can even say worst case, because I suppose it could ALWAYS be worse.)  That surgery will involve a bag for urine and a separate bag for stool coming out of my abdomen for 4 months before they can reattach my bowels and bladder.  (I still need to read up on this stuff-- I know a few people who have had this, is it called a colostomy?)  Blah!!  That didn't sound too fun to me.  Hopefully it won't come to that.

This doctor said, "Don't worry, Dr. M (the oncology surgeon) is masterful with bowel reconstruction.  She's a great surgeon."  I am comforted by this, but would rather NOT need a masterful bowel reconstruction.  I told my Perinatolgist that Dr. M seemed to think my surgery wasn't too horrible.  With a laugh (meaning, yes, it is horrible), she explained to me that was NOT because it wasn't a tough surgery, it was only because I am skinny and in good shape.  She said that I should heal well and am easier to operate on than someone heavier.  I am glad I have SOMETHING positive going for me (I bet even that could change after 2 more months of low activity and high hunger... ha!)

Test Results.
CBC- Hemoglobin 8.3, Hematocrit 27
Echocardiogram-- very normal!
Ultrasound- shows Percreta in the anterior and posterior part of my uterus... blah.

Physically at 23 weeks.
I still really feel good.  I'm grateful that my mom is here caring for my home and family so that I can rest.
I try to get out often and visit with friends.
I do not lay down all the time (it makes me feel horrible!)
I sit and walk a bit, take car trips, go to church, watch movies and plays, and do things with my family.
I am not lifting heavy things, running or climbing stairs, driving, or walking for long periods of time.
(I am SO grateful I am NOT bleeding!!)
I do nap or rest frequently.  I am rarely alone at home or in the car (in case I begin to hemorrhage.)
I am in a lot of lower abdomen pain if I do too much, so i feel good about my limited activity level.

Mentally at 23 weeks.
We have had friends come visit and book group at my house.  My kids often invite friends over and I try to continue watching my kids play basketball or sing in their middle school play.  Todd and I sneak out to dinner and a movie when we can.  The more social I remain the happier my soul seems to be.  I am so grateful for all that I can still do so I don't spend much time focused on what I'm not doing.

I am very real and open with people (have you figured that out yet from this blog?) and because of this, I am surrounded by love and friendship.
Thank you for helping me through this little journey of mine.  I know I would be mental without you!!  Well, more mental.

I wrote a big LONG post about how I deal with each item on my "not so good" list.  (I'll publish that tomorrow in case you want to read for a few hours...)
Basically, my mentality is--  Life is good, even when it's hard.
Things could always be worse.
Most hard things come hand in hand with great blessings-- treasures of learning and growth that you would never have without experience.
And perspective--  People are going through hard things every day.
If they can do it, I can too.
A little "CRAP" in my life is nothing I can't handle.

Sometimes I get down and whine and tantrum... and those are good days too.  They make me appreciate the times when I feel faithful.

Today, I feel faithful.
Life is good, with or without proper plumbing.
Please, take a second the next time you are sitting on the toilet and just BE GRATEFUL for all you CAN do  (or doo doo).
ha!

March 22, 2013

Week 22- Pregnant with Placenta Accreta/Percreta, Placenta Previa, Thalassemia

Preemie born at 23 weeks...
{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.  I also have Beta Thalassemia Minor which contributes to severe anemia.

I am being treated by a team of specialist, mainly Perinatology, Hematology  and OB Oncology, at Oregon Health Science University (OHSU) in Portland.  I receive lots of blood transfusions, have had many ultrasounds, and try to enjoy my many doctor 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 22-

Doctor Appointments.
((Singing Hallelujah Chorus))
I had NO, NADA, ZILCH, ZERO...  NOT ONE doctor appointment this week!!!
It was SO nice!  I almost felt like a regular old pregnant mother...  well, aside from the bed rest.

Test Results.
In the spirit of no doctor appointments, I have rebelled against blood tests.
No lectures please.
I figured that I felt good and I wasn't in the mood to call Portland to tell them I needed more blood, so I would rather not know what my hemoglobin and hematocrit levels were.
(I'll be back in the lab on Monday in plenty of time for my hematologist to get my results.)
Yes, I rebelled this week... and it was SO nice. 
(I did wonder, every time the phone rang if it would be my doctor calling to reprimand me for not going to the lab... but I have yet to hear from anyone.)
I feel as cool as I did skipping class in high school.
The, um, ONE time I ever did that (after getting permission from my mother.)

Physically at 22 weeks.
I feel really good this week. 
That may be mental and as a result of the above freedoms.
I'm certain I'm gaining more weight with this pregnancy simply because I am so inactive.
My body is CRAVING movement.
I want to run up the stairs or skip for a minute...  ahh, to move big again!!
Still NO bleeding!!!

And, my baby is just about viable!! 
With the risk of hemorrhage being so real throughout this pregnancy, I am very aware of how important each week is where my baby is still inside.
I woke up this morning (day one of week 23) and wanted to sing happy birthday to my little guy.
He could live if I had to deliver him this week. 
(After bleeding for the first 3 months and being on bed rest since then, I am celebrating this small victory!!)
25 weeks is better than 23... and 30 is better than 25... they won't let me go past 34...
I hope I have a ways to go before this little guy comes, but it does feel good knowing he is growing and developing and is just about viable.
I'm almost on the 10 week count-down and it feels good!!
(I've been on bed rest for the past 10 weeks... so, not counting recovery time, I am almost halfway done!!)
Small victories!!

My husband was out of town for a few days this week, so my mom and I held down the fort.
I have been doing a bit more than I usually do... including one trip-- by myself, to pick my kids up from school.
It felt SOOO good!!  I can't even tell you how nice it was to feel normal for one afternoon.
Ahh... I do like being a bed rest rebel every now and then.
  
Mentally at 22  weeks.
I feel good!

Looking back, I can attribute much of my peace of mind to a sweet blessing I received from some church leaders who came to my home.  I feel so grateful to feel the power of God in my life.  He is real.  There is power in the Priesthood of God to bless and heal.  I know it.  I also know that everything is going to be okay.  I am grateful.

I've spent this week learning about Preemie babies and the NICU.
I am reading the book, "Preemies" by Linden, Paroli, and Doron. 
It is not a fun read, I wish I didn't have to read it.
But, it is very informative and I'm glad I'm preparing myself now.
In the book, they divide the preemies up by week or gestational age. 
The youngest group is 23-25 weeks, then 25-30, 30-34, and 34+.
One of my favorite things is reading that 34+ babies have just about the same rate of survival as full-term babies. 
I've been really nervous about the preemie time... but if I can make it to 32 or 34 weeks, I feel pretty confidant that everything will be ok. 
We'll see what happens.

I have also received many sweet notes from friends of mine who have had preemie babies.
I can't tell you how nice it is to read their stories and feel like I'm not alone.  The best people I know have walked a difficult path and glow with all that they have become.

Anyone who has spent time in the hospital with their children (I have with Anna who had 3rd degree burns on her hands and leah and lily who were full-term but spent some time in the NICU), will tell you that it is a different world.
You meet people who are enduring much.  You meet children who have endured things no child should ever have to endure.
You feel sorrow and you see the hand of God. 
The hospital shows you the true strength of the human spirit and the amazing power of technology paired with the human body to heal and overcome.  Sometimes the hospital shows you our own inability to change nature.  Sometimes the best among us are called home too early.  (Doesn't death always come too early?)
I remember thinking (when I spent months in the hospital with Anna) that EVERY mother should spend a week in the hospital.
It re-sets our perspective and aligns us with what is really important. 
There are things in life that really matter, and things that don't.
Today, I am grateful for the perspective I have been reminded of.
Life is a gift. 

I also adopted a few coping mechanisms this week.
1. Don't look back.  (from this amazing devotional- "Remember Lot's Wife")
I have loved thinking about Lot's wife who turned to a pile of salt when she looked back.
I try to live in NOW.  If I'm cranky or snappy sometime, I apologize and move on, without dwelling and analyzing.  If my husband or family does something that bugs me, I just let it move quickly into the past and practice looking forward.  This has saved me, (CHANGED ME!) especially with family visiting.
I have some issues from my childhood that could resurface and drive me crazy.
I have definitely felt blessed with hope and joy as I've really focused on not looking back.

2.  Focus on the goal, not on the waves.  (From when Christ and Peter walked on water.)
There are things that make me anxious and thirsty and insecure.
When I think about timing or the future or specifics of money or planning or how my kids are going to manage the next few months or how long it will take me to recover...  I start to sink.
I have noticed that quite literally, looking at the waves brings doubt. 
When I take one day at a time, one hour at a time, one moment at a time, I feel peace and joy.
I know that God will give me what I need, when I need it.
If I sink, He will pull me up.
He does not always tell me HOW He is going to help me months before He actually does help me.
He likes it when I walk in faith.  When I trust that He is beside me and I am safe.
The world will focus on the storm.
My God created the waves and he knows just how to save a soul like mine.
My daily walk is peaceful and blessed if I don't think about the water swirling around me.
I'm actually enjoying these months of rest and excited for the experience that I am gaining.
I do remind myself every now and then to FEEL the JOY of NOW... and ignore the waves. 
He can take care of the storm... I am safe.
Life is good.

Thanks for walking this path with me.
You are my friends and we are never alone.
Let's keep on walking!!!  This is a good journey.

My journey so far...
Week 21
Week 20
Week 19
Week 18
Choosing Life
In a Moment...

March 21, 2013

happy birthday grandpa bart!


 What could be more fun than celebrating Grandpa's birthday?!!

Todd loves my great ideas...  we decided to buy a birthday package at a local bowling alley.
For our family it was CHEAPER to do a birthday party than it would have been to just take the kids bowling.
Plus we got mini-golf, pizza, a cake and a fun bowling pin memento.
(Sitting at a bowling alley is SIMILAR to bed rest, isn't it?!!)



we quickly realized we had two teams... the serious golfers and the little girls.
once we split up, the serious golfers were happy.  :)







some of us were not happy about our current skill level.
it is sure hard to be number six.
 after the meltdown, mom hands over the camera and helps with the JOY factor of mini-golf...






it was sad when a little sister put anna's ball down the last "hole in one" non-returnable hole.
sweet girl has learned lots of patience dealing with so many little sisters.
 glow in the dark bowling...


 cake and games...  what a fun afternoon!


Sure love my cute husband and father.
Happy Birthday Grandpa!  Glad we could celebrate with you...

ps-- you may notice that my dad cut his hair since he was here last time (here).  After picking him up from the airport, Leah ran into the house exclaiming "Mom!  Wait till you see Grandpa!  He's back to his old self again." Cute kid.  So grateful Grandpa could visit... and that he has come back to himself.