Monday, September 10, 2012

Surgery and Bedrest

I am sorry for my absence this summer from blogging.  Life has been busy and complicated.  I took "a page" from Tracey McBride of Frugal Luxuries fame (book and blog) and didn't worry about my blog.  Right after publishing her book one of Tracey's parents got sick and eventually died.  She was being pressured to do talk show interviews and appear on programs showing frugal crafts, etc....  She refused them all to take care of her family.  She even took the last eight months off from blogging again when her husband was laid off from work...  Anyways, I've been trying to keep all my commitments in the correct priority order therefore this blog comes last.

I am once again on bedrest.  When I was approximately eight weeks pregnant with Libby (our youngest) I experienced an "impacted uterus" for four days (aka, my uterus collapsed onto my bladder and blocked my body from being able to release urine.)  I had a catheter put in and then it fell out on its own.  Instead of heading back to the emergency room right away to have it reinserted my doctor recommended waiting to see if I could pass urine and thankfully I could at that point.  (Sometimes it takes weeks before the uterus filled with the weight of the baby lifts off the bladder.)  Upon receiving a correct diagnosis Jason and I realized that I had also suffered from an "impacted uterus" for about three weeks when I was pregnant with Katie two and a half years earlier, but it had never been correctly diagnosed because I could pass a little urine or bowel movement here or there.  (No one ever performed an ultrasound in order to get a correct diagnosis at that time.)

In July 2011-six weeks after Libby was born-I drove an hour away to participate in a novena of thanksgiving to the Infant Child Jesus of Prague for blessings we had received as a family (namely-the birth of our gorgeous baby girl-read previous blog post here.)  At the end of the church service-at the very moment when the priest held up the Eucharist and the entire church was on their knees praying to God-my uterus collapsed-while I was holding Libby.  At the time I did not know what actually happened-I just knew that I was in the most pain I had ever felt outside of childbirth....I was hot and nauseated and felt like I had to use the restroom, but could barely walk to get to the restroom.  When I did manage to get to the restroom nothing came out.  I managed to make it to my vehicle to call Jason while sobbing because I didn't know what was wrong.  (Now realize I have had five vaginal non-medicated natural births-I can handle pain-my longest labor was 26 hours with 14 of those hours being stuck in "cervical transition-the most painful part of labor" because the baby was stuck and not fully engaging the cervix.  This uterus collapse felt as painful as that intensely painful childbirth except I had the intense fear because I didn't know what was wrong and I was alone with a baby.)  Jason immediately went into "rescue mode"-he found a neighbor who volunteered to take our other four kids plus our niece who was visiting-so that he could drive to get me.  I was bad though and in effort to take my mind off my pain started driving home.  (Don't do that!!!  Wait for help!!!)  The really funny thing in hindsight is that I later realized that I was actually parked in the parking lot for the local hospital located near the church....I could have just walked hobbled while carrying the baby to the emergency room.  After dropping off the kids Jason called me to talk to me while we were both driving so that he would know if I got in an accident, etc., etc.  He repeated something that our neighbor said-and since I had been praying to God asking what was wrong with me-I suddenly realized that my uterus had collapsed once again....I ended up parking my car in Steubenville and Jason drove me home until I could see my doctor the next day.  (I refused to rack up thousands of dollars in medical bills only to be told to "see my ob-gyn" like I had been told the two previous times I had gone to the e.r. for this condition.)  I had a few pain pills left from when Libby was born so I just took those until I could see my doctor....he confirmed my self-diagnosis and then gave me more prescriptions for pain meds and bladder infections while I decided what course of action I wanted to take for my condition.

So-the normal procedure for a collapsed uterus is a hysterectomy.  Thankfully I did not "have to" have one right away because my uterus didn't collapse through my cervix into my vagina-it instead was painfully flipping and flopping back and forth between my bladder and my bowels-meaning sometimes I couldn't urinate-sometimes I couldn't have a bowel movement-often there was pain during intimate moments....but I wasn't forced into a traumatic surgery that I was vehemently against.  I had time to think and pray and pursue non-traditional methods in an effort to preserve my fertility and the very organ that helps to regulate my hormonal levels-those things that help to make me a woman.  Most women if they are not going to have either a full hysterectomy (where they take both the uterus and ovaries and fallopian tubes) or a partial hysterectomy (where they take the uterus and fallopian tubes, but leave the ovaries) end up trying to use a pessary insertion.  Thankfully my local ob greatly discouraged even trying this route since he said that in his experience pessary insertions were messy, ended up causing more infections than they prevented and basically don't work in a condition as bad as my uterus was.  I started researching different options and came across this amazing doctor , Dr. Toaff, located in the Philadelphia area.  He was willing to immediately complete a pelvic floor lift surgery on me....the problem: I cold not lift anything for two months (including the two month old baby), then lift nothing over 10 lbs for another four months (this means again: no lifting the baby) and then after six months never lifting anything over 20 lbs....(like my toddler size children-or any of the numerous boxes that we process at our UPS Store) my wise husband lovingly nixed this wonderful idea slowly over the course of a few months as a viable option for us to pursue.

God led me via "a friend of a friend/local acquaintance" to UPMC Women's Rehabilitation Center.  So within a month I was driving back and forth to have internal physical therapy, which greatly helped to control my pain plus gave me some greatly needed emotional support regarding my nearly constant pain.  Another friend recommended trying acupuncture, which had previously helped to reverse her prolapsed uterus.  In January I began to experience my ribs dislocating (usually during the middle of the night after I would fall asleep) from the tension of my pelvic ligaments trying to hold up my now completely collapsing pelvic floor.  Now my weekly chiropractic appointments that helped to prevent migraines were increased to two to three times a week to pop anywhere from two to eight ribs at a time back into place.  By the middle of February I was a wreck-I was physically ready for a hysterectomy-but not emotionally.  Jason and I went away for Valentine's weekend and I was unexpectedly able to be anointed on the Feast of Our Lady of Lourdes.  When I next saw my physical therapist she was excited about how much healing had taken place inside my pelvic area (and believe me it wasn't because I had actually been doing my exercises faithfully-it was from the anointing I had received.)  By the first week of March though I was away from my house and kids thirteen to twenty hours a week.....if I missed one appointment with either the physical therapist, acupuncturist or chiropractor then I was driven to my knees vomiting in pain (even taking pain pills).  I was also building up a tolerance to pain pills-not an addiction that I wanted to develop just to keep my April I could finally say "yes" to the wasn't a matter of "if" I should have was just a matter of "when".....I could now emotionally stand in front of God and say, "I did everything I could to preserve my uterus/hormones/fertility."  I also knew that I should try to schedule my surgery when it was most convenient for my family-not because it became an emergency due to a further collapsing of my pelvic floor.  I was also at the point where I wanted to be able to take care of the five miracles God had already blessed me with-I wanted those hours of my week back with my children.  Jason and I had already come to terms with the fact that we were not going to have any more children naturally-even if God had blessed me with a miraculously healed pelvic floor we weren't gong to take the chance of another bedrest situation that I may never recover from.

The search was on for a local surgeon that was qualified to do the extensive surgery I needed....we prayed and God protected us-we kept having surgeons turn down my case-until via a casual acquaintance who overheard an unexpected conversation (you know the kind of conversation where you are wondering "why am I talking about this personal stuff to this particular person?") led us to Dr. John Wright and Dr. Cathy Saunders and Heritage Valley Health System in Beaver, PA.  By the time everything was in place in July we had to make a decision-we had a choice: surgery immediately in August or not until January since the recovery time would be so extensive.  (Remember: I need to work Christmas time at the store.)  Jason pushed for the immediate surgery in August even as I half-heartedly objected due to the fact that our two oldest were playing travel soccer and we had the beginning of the homeschool year.  Jason won and God provided the childcare/cleared the calendar for the first ten days, followed by an amazing, dear friend volunteering to come and stay for the next ten days.  (Her family even had enough frequent flier miles that the ticket was free.)

While meeting with Dr. Wright we had a short debate on whether we should actually keep the uterus.  He said that he was amazed by how much it "had lifted" from my physical therapy and acupuncture treatments.  We finally decided that it wasn't worth "taping it into place" and taking the risk of an unexpected pregnancy that would destroy all the other repair work that had to be done and from which I might never recover from. At this point both my bladder and bowels were also collapsing.  The vagina is the next thing to start collapsing and I really didn't want to start having a Josephite marriage.  I also had fibroids forming once again in my uterus.  My August surgery date rapidly approached and I once again battled my fears of anesthesia (that risk that I may never wake up).  I was once again prayed and anointed over by two wonderful priests, received the eucharist and made my confession, and made a last visit to a dying friend that died one week after my surgery, kissed all the babes goodnight and then woke up at 3:30 am to make it to the hospital by 5:30 am.

During my surgery they removed my uterus/sent the fibroids off for testing and also found endometriosis (no surprise there since that's a reoccurring condition I have already been diagnosed with.)  In the five weeks since my last pelvic exam and the surgery though my left ovary had also collapsed and was entangled/rolled up in my uterus.  The uterus had rolled into a ball so tight that they could barely see it.  (I hadn't had any acupuncture treatments since June/internal physical therapy since April.)  The doctors managed to untangle the ovary from the uterus-I guess one could say they were "adhered" together-and tack it back into place.  They inspected the inside of my bladder via a camera and then taped it back into place, though there was some bleeding that occurred.  They then pushed all my bowels back into place and taped it up with mesh as well.  (They were careful to state that they used as little as possible due to my "young age.")  They tacked my vagina to a ligament to help hold it into place.  The second surgery surprise was that they found that my uterus had developed adenomyosis.  This is a sponge-like condition of the uterus (basically endometriosis within the uterine walls.)  Your uterus should be a firm muscle-like your heart.  When andenomyosis occurs the uterus muscle becomes sponge-like and thin and the uterus becomes larger and larger.  Many women experience miscarriages and sometimes even uterus perforation-which can kill both the mother and baby.  Adenomyosis can only be diagnosed via internal examination and had  not been diagnosed in either of my previous surgeries three to five years ago.

The diagnosis of adenomyosis actually has given both Jason and I "final peace" about the surgery.  As Jason says we were faced with numerous awful options, but in the end we made the right and just decision after much prayer and research.  We can now laugh about my actual uterus collapse moment in the Church: I call it my "Job moment."  I was given a trial of suffering in God's house-and only through the grace of God-and many prayers from holier people than myself-I have survived.  I am not a saint by any means-and I often feel as any purification I am receiving from my suffering I waste on my complaining and whining of my condition.  (My usual line is that I would still be a great Creighton Model FertilityCare Practitioner without having to experience almost every area NaProTechnology treatment that there is to experience-for instance I shall now be on their post hysterectomy hormonal replacement system.)  I am but a humble servant doing her best to honor God each day, however poorly that offering of the good, the bad and the ugly in my life may be.

Oh-so why the bedrest...well, it's not complete bedrest-it's partial: I can lay down or walk, but need to avoid sitting as much as possible because it makes the blood pool in the pelvic floor-causing recovery time to be longer.  Sitting also puts intense pressure on the pelvic floor....I can actually feel the blood pooling/swelling starting when I have sat too long at meal times or to nurse.  It's God's sense of humor since I complained about not being able to walk for seven months during my last bedrest.  It can take anywhere from 1-3 months to recover-I am trying to be extra good so that I will get the go ahead to start sitting/driving again at the 4-6 week mark post-surgery: easier said than done since I frequently lean over and pick up Libby Lou while walking through the house-that habit dies hard.  At sixteen days post surgery it still hurts in the pelvis area, especially in two spots of stitches-it also still hurts to laugh or cough and there is still some post surgery bleeding...but I can finally go to the bathroom without pain (that took 10 days).  The lack of sitting/time with five kids to take care of is why it took so long to post this note after my surgery.

I have been so blessed by the amazing community of Steubenville: meals, rides for my kids, notes of encouragement and prayers beyond number.....I am humbled and only wish to repay everyone back with my own works of mercy when I recover....for now I offer my simple prayers of thanksgiving and offer up my suffering to whomever needs it most.

This is an especially personal post to write, but I know how the rumor mill works and I wanted to make sure that my story was told in my own words rather than "the telephone word of mouth system."  It also was getting really painful to keep explaining to everyone asking what happened....though I am at peace it doesn't mean that I want to keep talking about the surgery over and over again since it is rather complicated.  I also hope that this post helps others who may be experiencing a weak pelvic floor.  As Dr. Wright explained some women naturally have strong pelvic floors that snap back into place even after they've had nine kids-you can't even tell that they've had one, but some women are like me and their pelvic floor is weak and collapsing before they even had one child (for instance I have always been diagnosed with a retro flexed uterus, but was told not to worry about it.  Basically my uterus was tilted back instead of standing straight up and down and it was folded over like a curled up pillow-I was told this at my first pelvic exam as a teenager.)  As I ponder this "weak pelvic floor diagnosis" I realize more and more every day how much of a miracle each of my five wonderful children are.....and for any of my friends who may be keeping it a secret that they are pregnant because they don't want to hurt me-it's okay-I will rejoice with you....I have had fourteen months to "grieve" the loss of future natural children....God  has another plan for my life-I may shed a tear here or there-I mean I do still have my ovaries/some hormones!-but I will rejoice for those upcoming baby blessings....I am also a Creighton Model teacher-baby announcements are a part of my job!:)

May all of you experience the sweetness of the gift of healing from God (in whatever area you need it in),