March 11, 2013

Week 21- Pregnant with Placenta Accreta/Percreta, Placenta Previa, Thalassemia

no, this is not me.
but, it will be someday... minus the glasses.
i love central lines!

{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 currently going to Oregon Health Science University (OHSU) in Portland to meet with specialists there.  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 21--

Doctor Appointments.
Oh, how I love doctor's appointments.
This week we went to an Echocardiogram and met with our Gynecology/Oncologist  Dr. M.

Sitting in a small waiting room at the hospital it was Todd and me, with ten other very old people.  We try to talk and make jokes about the People magazines we're reading.  They look at us with sadness in their faces.  It is probably sad to see a young, pregnant mother sitting in Cardiology waiting room.  Wow.  There are so many things people deal with in this life.  So many health issues, so many different journeys.  I'm grateful for mine.

An Echocardiogram is just an ultrasound of your heart.  It's just like a regular ultrasound but a lot more boring with no baby moving around.  It took over an hour and Todd fell asleep.  I would have also if I hadn't been laying in an awkward, uncomfortable position with cold gel being rubbed around my chest.  As far as we know everything looked normal and this was just a cautionary test.  

We met for the first time with our main Gynecology-Oncologist surgeon- Dr. M.  (Although I do not have cancer, these are the best surgeons.  Placenta acts a lot like cancer.)  We waited for a few weeks for this particular doctor because she is the best.  I had heard so much about her that I was surprised to see she was a young, simple girl.  She was about my age with her hair pulled back in a braid and was a bit socially awkward.  She is the kind of doctor that you might not want as your pediatrician, but you most certainly want as your surgeon.  I could just feel that she is brilliant at what she does.  AND-- she is the FIRST doctor that didn't even mention abortion to me.  She was kind and talked about my surgery like it was something she did often.  SHE WASN'T SCARED OF ME OR MY CONDITION!!  I can't tell you how comforting it was to have a doctor talk to me with confidence and HOPE!  She made it seem like even the worst case scenario (which mine seems to be) was not that bad.

We talked for over an hour about the particulars of my surgery.  If they are able to operate as a planned, scheduled surgery (meaning if they don't have to rush me into surgery because I am hemoraghing), things will proceed as follows.

1- Anesthesia-   My surgery will hopefully be scheduled (around 34 weeks), up at OHSU, in their main operating room with many scheduled doctors.  They will start with a spinal block and I will stay awake.  I will get a central line (in my neck) and two iv ports in my arms.  It is better for me to stay awake as long as possible so they aren't worried about how much anesthesia the baby is getting.  Once they put me under, they have to hurry to get the baby out quickly.  The ports in my neck and arms just make things easier to pour straight to my heart if they need to.

2- Balloons- Some doctor will put balloon catheters into the main veins and arteries of my uterus and placenta.  These balloons will stay deflated while the baby is inside me (allowing blood flow to the placenta), and will be inflated after the baby is removed to try and limit my blood loss.  Since blood loss is the main cause of death with this condition, I'm grateful for this additional precaution.  I like balloons.

3-Stents (I've been calling them shunts, but they are different)- The Urologists will go in and put a tube in each of my Ureters.  (We talked about those last time.) The Ureters are tubes that go from your kidney to your bladder.  Things get swollen inside there when they are operating and they want to be sure not to cut those tubes.  (Although they did say it is not too difficult to repair them if needed.)  These tubes are also just precautionary markers to make surgery go smoother.

4- C-section- As I understand it, Dr. W., the Perinatologist, will deliver the baby.  They will do a large transverse cut down my stomach to give them a lot of room and to try to remove the baby from the top, without going near my placenta.  There will be a big panda team of doctors waiting to take my little guy to the NICU.  I will get to see him and then they will put me under for the big surgery.  Todd can stay in the operating room with me until they put me under.  I would want him to stay with the baby anyway, once the baby is out.

5- Hysterectomy- The Oncologist, Dr. M., will do the major hysterectomy part.  They hope to leave my ovaries and will only take my cervix depending on how involved it is with my placenta.  The hard part of this surgery will be stopping blood loss from the many involved veins.  There are four main arteries, but with placentas, little veins become big veins, so they have to tie off or cauterize a lot of different veins.  When they remove my placenta, my bladder will tear.

6- Bladder repair- The Urologists will repair my bladder.  They say bladders are pretty easy to repair so everything should go smoothly.

And then, they will sew me up.
Recovery will be tough.  I will most likely spend a day in the ICU.  If the surgery is bumpy and extra long, they will have to wake me up while I still have the breathing tube in.  If it is a fast surgery they will have time to take the tube out before I'm completely awake.  She said I will probably wake up with a tube in and be pretty out of it for a day or two.  As far as I understand they try to send you home as quickly as they can after surgery because the risk of infection is much greater at the hospital.  I will have a catheter for two to four weeks while my bladder heals up.  (That sounds fun?!)  And, it will be a tough recovery.  BUT, I should live and be back to normal in a couple of months.

Sigh.  Sounds fun, doesn't it?!!  We haven't met with NICU doctors yet to find out about the journey our little guy will be making.  I am most dreading that.  Cut me open, give me a catheter... but please don't make my baby suffer.  Ugh.  I'm not sure I can handle a preemie, preemie baby.

On Friday morning I had a CBC and I had an 8.6 Hemoglobin.  They transfused me two units of blood and I had another CBC on Monday-- my Hemoglobin was only 8.7.  Two units of blood should raise your Hemoglobin two units.  So, I should have gone from 8.6 to 10.6.  It is not good that I only went to 8.7.  It suggests that I'm having a delayed hemolytic transfusion reaction.  Meaning, my blood is rejecting the transfused blood.  Blah.  My doctor doesn't seem too concerned.  But, I am.  I just don't want anything else complicating this pregnancy or surgery.  I read somewhere that 1 in 250,000 transfusions have this type of reactions.  I think I need to play the lottery this month.

Test Results.
Echocardiogram- pretty normal as far as we know.
CBC- Hemoglobin 8.7, Hematocrit 26 (delayed hemolytic reaction?)

Physically at 21 weeks.
I feel fine.  A friend told me her son-in-law said, "She sure looks healthy."  I'm so grateful to be home on bed rest and not in the hospital.  I still go places, sit, stand, and lay down.  I am SO grateful I'm not bleeding or spotting.
My belly is growing and for the first time I am just so grateful my baby is growing that I don't even care how big I get.  I don't think this little guy will get to bake the whole time, so I want him to be BIG when he does come out.

Mentally at 21 weeks.
It was hard to hear the details of the delivery.  Afterwards Todd and I were a bit empty.  It's one thing to read about someone else's story.  It is another thing to be sitting in the chair, looking at the hands that will one day cut your insides out.  (Sorry if that is too graphic.)  I want to live.  I'm so grateful for skilled doctors.  I don't like statistics.  I really like my bladder, and overies, and cervix, and uterus.  This surgery and recovery sounds awful-- but completely 110% worth it.

The thought of being awake while they cut into me makes me nervous.  But, I would do anything if it was better for my baby.  I used to have nightmares about getting a shot and now I try not to think about central lines and large scars down my abdomen.  I have a friend who just had a similar surgery.  Reading her description makes me gag.  She is positive and hopeful but to me, it sounds awful. This is going to happen to me whether I like it or not.  It doesn't sound fun.  But, it is my journey.  I can choose to have a tantrum or choose to accept this path and climb the best I can.  Today, I'm choosing to just take one day at a time.  The surgery does loom ahead of me like an upcoming exam that I can never quite prepare for.

I bought a sweet little boy outfit- size newborn.  (My other babies hardly wore newborn size.  I think it will be a few months before this little guy fits into newborn.)  It is HARD to feel connected to this baby.  This pregnancy is such a medical oddity that so much of it is learning and testing and waiting... it is more about blood and placenta than it is about sweet baby boy kicks and funny cravings.  It is also more about ME than HIM.  I hate that.  I try to hold that sweet little newborn outfit and imagine there will come a time when he is discharged from the NICU and I am all healed up.  There will come a day when he is just my baby boy and I am just his regular mother.  I will hold him without being afraid that he will die and he will be a symbol of LIFE not the possibility of death.  I can't wait for that day.

 Finally, I have been amazed at the feelings of guilt I am feeling.  So many people call, or bring meals, take care of my kids, tell me they are praying for me and my family, bring me books and cds, and come to my home to clean or care for my family.  So many people are serving me at this time.  Although this is hard, it really is EASIER than normal life.  Honestly.

Before I got pregnant it was hard doing laundry, caring for my kids, cooking meals, shopping, budgeting, enduring...  I didn't have anyone helping me.  I didn't get to spend days at a time with my sweet husband while others cared for my kids.  In SO many ways, regular life is HARDER than times of trial.  And, I'm sorry.  I'm sorry that I'm getting meatloaf and prayers and dates with my husband and you are just enduring your everyday.

I'm sorry that my trial grows in front of me and is visible while your trials might be internal and just as hard.  I can stand up and testify of my trials and God's blessings at a church testimony meeting... while so many that I know are struggling with heartache or relationships or addictions or problems that nobody can see.  I'm sorry.

Life is hard for ALL of us.  No one is exempt.  I love this quote by President Packer, "Some are tested by poor health, some by a body that is deformed or homely. Others are tested by handsome and healthy bodies; some by the passion of youth; others by the erosions of age.  Some suffer disappointment in marriage, family problems; others live in poverty and obscurity. Some (perhaps this is the hardest test) find ease and luxury.  All are part of the test, and there is more equality in this testing than sometimes we suspect."  (read the whole talk, The Choice, here.)

Today, this is my test.  It is hard, but it is a blessing in my life.  My life is NOT harder today than it was prior to my pregnancy.  It is different hard.  I'm so grateful for the perspective that trials give to our life journey.  And, I'm praying for you.  Because I know that your journey is tough too.  I wish I could bring you a meatloaf or send you my mom to organize your closets for a week.  Because, sometimes it is nice to know that you are not alone.  We are never alone.  God is with all of us as we endure and enjoy our everyday journey.  Carry on friends!

Life is good!
{guess what?!!!!  i have NOOOOOOO  doctor appointments next week!!  NONE!!  What will I do with myself?}


beckyjune said...

We know that we will never be given more than we can handle and that God is truly at the helm, very aware of us and our circumstances. I am amazed and humbled, Jen, with your courage and faith. I would hope that I could handle such a trial with such grace and dignity but I honestly don't know if I would. We are praying for you and hope that you will both soon be healthy and happy and back together with your family as you ought to be.

Allie said...

Tiffany's frien here ...still reading your blog! And really reading every line with this trial you are having. We had a 29 34 weeks will be awesome...I PROMISE. Little? Yes. But you can hold him sooner and he will learn the suck/swallow/breath sooner and that means you can take him home sooner! :)

Also...if your hospital has that many amazing doctors...just think about the amazing NICU it must have. You will love NICU doctors and nurses more then your own. I promise. They are special, special people. They WANT babies to live. :) You will love the peace in the NICU, matter how many tubes and fighting lives you see around you. Please don't worry about him being alone in there either if Todd comes to see you every once in awhile...NICU nurses love holding their babies. It will be special. Trust me!

P.S. going to see Tiffany in a few days. I just know we will talk about how wonderful you if you feel your ears burning that will be why!

valerie in TX said...

Sweet friend, I love you and wish I could bring you a meatloaf...scratch that - you don't want me to bring you a meatloaf! Ha! But I could do laundry and take your kids to the park and pick up some take-out on my way over. :) Miss y'all so much, and praying for you and your sweet boy.

Katie Richins said...

I love your depth of understanding in those last paragraphs. Thank you for sharing iit. Really.

Jennie Plastow said...

Oh jenifer my dear! I have been thinking so much about you these past couple of weeks. Your faith and courage in your posts, keep me hanging on. I wish I could verbalize my feelings, the way you do. Everything you said... Seems to be exactly how I feel and can't express it. The guilt for the extra free time and all of the service offered. The disconnection with the pregnancy. The peace and joy, the fear. I'm just going to post a link from my blog and say, here read this... It's way better than anything I can try to express.

Having a preemie was so scary to me. Since surgery, it has been such a blessing. Those nurses love on my little man and take care of him as their own. It has been such a comfort knowing that he is so well taken care of. Especially on those days that I need to recover and can't physically see him. I have ached to have him home with me, but felt so much at peace, that since i cant physically take care of a baby right now, that the lord is providing a way for him to still have what he needs. The Lord continues to set angels in our path to pick up the pieces we can't seem to hold together ourselves through something like this. Hang in there sweetheart! You are constantly in my thoughts and prayers. The doctors have a good routine in place. I'm glad to read the extra things they will do for you. Those things literally saved my life. You are in good hands. Especially in our heavenly fathers. Recovery gets easier and better each day. I have even come to appreciate the catheter. Lol. Love and prayers headed your way through it all!

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