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We’re just volunteering to be head sheep of this weird little herd in our area, with every intention of pointing to our Shepherd.

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Gray

Its been a minute, I know.

The last post was nearly 4 months ago, when we heard a heartbeat that didn’t belong to either one of us, but then again sort of did.
I’ve struggled a lot with what this blog and our story would look like once we got our happy answer.

It been a fantastically wonderful difficult hard beautiful gross confusing 4 months.

As a quick update:
We’re having a boy.  His name is Truitt Charles Bush.  More on his name in another post, because that’s a meaty one.
Our boy is big, healthy, active, and we already see ourselves in him.

Struggle

I know, this may sound a little ridiculous and probably makes me look extremely hard to please.  It is what it is.
Being pregnant is hard.  Harder than I was prepared for.  If it were just the physicality of it, I’d probably not post about it.
Physically, I am mostly fine.  My body, however, was not “made for this” as so many crunchy folks like to say.  No judgement to the crunchy, i consider myself partially crunchy (as partially crunchy as one can be after taking the amount of hormones I did and excising weird stuff off my innards with laser beams).  If one more person looks at me and says “your body knows what to do!” I am going to give a very detailed explanation of how NO my body DOES NOT know what to do, it is VERY CONFUSED.  There is another HUMAN in there.
My migraines are now peaking at 5-6 days a week.  I am still able to work full time by keeping a watchful eye on the weather, my sleep schedule (lol at sleeping while pregnant, amirite?) and medicating (safely) often.  I am on a strict no-Botox diet until Truitt says hello from the outside (we listen to a lot of Adele, I’m not sorry), and since I’m bellybutton deep into the second trimester, it doesn’t look like they are letting up any time soon.  That’s difficult for me, because I feel like a flake.  Beyond work, I can’t make a lot of commitments,  because having migraines and hurting almost constantly is exhausting.
Beyond that and some scar tissue induced round ligament spasms, I’m a pretty perky prego.
Mentally, I’ve been a mess.
“WHY?!  You’re pregnant!  It worked the FIRST TIME!”
I know, it usually doesn’t.
“This is exactly what you’ve been praying for, working for, trying so hard for!”
Indeed.
“You must be so EXCITED!”
No doubt about it.  The English language is not adequate enough to explain how we feel.

But why us?

I decided to go public with our journey because I didn’t really know anyone who’d been through this.  I’d found some random faceless women on some message boards and online groups, and I’m thankful for them.  But I thought surely someone I know has done this, been through this.  And then I thought maybe I/we could be that someone that someone knew, when they dealt with this.  There had to be others.  I wanted to find the others that I already knew I knew, I just didn’t know.

Boy, did we.

We have been overwhelmed with the echoes of “me too” we have gotten after going public.  People who have told us publicly and in confidence.  People who are searching for community.  Families who are actively dealing with this hurt and struggle and journey and understand the hardship and just get it on a level that no one else can.
We have found so many great confidants in this journey.  People who are public with their journey, people who are not.  Several have reached out to us, as we are a bit ahead of them in the journey, just as we reached out to a few couples who have been instrumental in our own journey.
We were made for community.  Doing this alone is not healthy, I honestly don’t get how people do it.  We need one another – we are good for each other.  We would have been lost and overwhelmed without this little community that we scrounged up from the depths of the internet and high school and and friends of friends of friends.

In this community, not everyone wins.  Not everyone has the happy ending they set out to find, especially not on the first try.

Sweet friends that I knew that I knew (I just didn’t know) who are dealing with this are seeing more loss, failed cycles, bad news.  My heart is so broken for them.

They didn’t get to/haven’t yet heard their heart beat.  Or they heard their heart beat, and then have experience the death of their baby.

My heart hurts.  A lot.

I feel so guilty that it worked for us.  Like I should maybe hide my joy and excitement and annoyance with migraines and pregnancy discomfort because how dare I?  These friends still hold such a special place in my heart, and I want so much to follow their journey, hold their hand, be a shoulder to cry on, a listening ear.
But I am pregnant shoulder.  My ears still hear my baby’s heart beat.  My belly feels his kicks.  He is still “mine”, for now.

Solution

I don’t have one.  This post doesn’t really resolve into a great epiphany of understanding and enlightenment.
I don’t have it figured out.  I don’t know that I ever will.

I know that we are not pregnant because I ate enough pineapple, or took the right drugs at just the right time, or prayed hard enough with just enough faith.  I am pregnant with a healthy baby boy because of God designed science, and because God has a plan for this person.  It has nothing to do with me.  It is for His glory alone.

We are living in a weird gray area.  Yes, both Mister and I.  This is a family journey, not a female journey.

We are over the moon excited about our son.  We have a son.  I feel him move so much, he keeps me awake, he’s sassy and possibly left handed.  He parties all night and is a total grouch like his Daddy at early morning ultrasounds.  He is soothed and calmed down by listening to Mister snore.  Yes.  Snore.
Pregnancy is what we’ve gone through hell and high water to achieve.  I am so excited I get to experience it, I love it.  I thought it may never happen for us, for me.
Its gross and weird and sometimes it sucks and is hard and it hurts, a lot.  The anxiety we’ve both experienced during our short time with our boy is overwhelming, and he’s not even “here” yet.

We are broken over those who are still struggling.  When we see a friend get told “I’m sorry…”, again.  When another family learns that IUI isn’t enough.  When they don’t know why its not working.  When they don’t know what to do next.  When someone else tells them to “just relax” or “quit thinking about it” or “have enough faith.”

This community is still so important to us.  We are still very much a part of it.  We are attempting, again, a support group of sorts, beginning next month.  I have mixed feelings about leading a group of struggling families as a big ole pregnant lady.  This is too important to us to ignore just because we have our baby growing, but its something that must be handled with a grace and dignity I haven’t quite figured out yet in order to be sensitive and understanding to others.

We are overjoyed.  We are anxious.  We are broken.  We are thankful.  We are conflicted.

We are gray.

 

 

Recalculating route…

Today we had our final monitoring appointment.

When we left our clinic on Thursday, doc had canceled our Saturday monitoring appointment because I was a “slow grower”.  Not much had changed between our Tuesday appointment and Thursday appointment, all 20-25 of my follicles were still mostly too small to be measured.

NOT the case today.

We’ll backtrack to this weekend for a minute.  Saturday I started feeling a bit “uncomfortable”.  That was to be expected.  Sunday afternoon and evening, “a little uncomfortable” was now “ok this sucks.”  Again, to be expected.  But I don’t have to like it.  Sunday evening/night, I was just one big ball of grump and tired.  My gut hurt all over.  It hurt to touch (I’m pretty bruised up at this point from all the shots), it hurt to move, it hurt to go over bumps in the road, and I drive a Wrangler.  No bueno.

At today’s appointment, Doc asks how I’m feeling and how this weekend was for me.
Uncomfortable.
Well, he says, lets take a look!

As soon as he flips the ultrasound on and gets to the appropriate neighborhood, Nurse says:

WOW.  That’s a TON!  I’m going to sit down, we’re gonna be in here a while.

They were huge.  The ovaries.  The follicles.  And there were so.many.of.them.  As he measured, I started counting on my fingers.

28.

We thought my number had dropped a little between Tuesday and Thursday, but NOPE.  The little slow pokes caught up, plus a bonus one!  This whole exam was extremely uncomfortable.  I was glad when it was over.  For a minute.

Doc looked over all the information he’d just rattled out to my nurse and took a deep breath.

From the beginning, our biggest concern was ovarian hyper stimulation syndrome.  We tried really hard.  But you’re there, and its happening.

Well, crap.  ok.

Rabbit trail:
OHSS, as defined by the MayoClinic:
Ovarian hyper stimulation syndrome may occur after using injectable hormone medications during in vitro fertilization (IVF), a treatment for infertility. Injectable fertility medications stimulate the development of eggs in the ovaries, but it can be difficult to tell exactly how much medication you might need.
Too much of the hormone in your system can lead to ovarian hyper stimulation syndrome (OHSS), where your ovaries become swollen and painful. A small number of women may develop severe OHSS, which can cause rapid weight gain, abdominal pain, vomiting and shortness of breath.

The more you know, folks.
He continues to tell me that my trigger shot tonight will likely make it worse, and that he wants me on additional meds to help control the effects of OHSS.  He’s not comfortable proceeding with our current plan of a fresh transfer, 5 days after my retrieval.  He wants to freeze everything he gets, and wait a month or so until my ovaries return to a zen place and a normal human person size (they’re fist sized, folks) before he did a frozen embryo transfer (FET).

Bummer.

So, recalculating route:
Our egg retrieval is set for Wednesday morning.  I just paused from typing this paragraph so Mister could jam the largest needle that a human has ever made (I may be exaggerating) in to my bum and pump in a bunch of HCG for my trigger shot.

Wednesday, they’ll fertilize my eggs with Mister’s contribution, and for the first time ever, Mister and I will be parents.  We’ll let our sweet little blobs grow for 5 days, and the fighters that make it to Day 5 will all go in the freezer until I can get to a healthy place again.

We will be parents.  We will be responsible for lives other than our own.  We will make decisions that are best for tiny groups of cells living in petri dishes.  The responsibility started weighing on both of us today.  Its a weird place to be in, to know that we’re making all of these combinations of our DNA, these individuals.  These future babies and children and adults that we haven’t met yet, but on Wednesday they’ll be real and exist, and then on Monday we’re putting them in a freezer for at least a month for a couple, years for the others.

I’m in a weird SciFi movie.

We’re bummed about this turn of events, with the the feeling crummy and the extra stress on my body, and the added wait when we’ve already been waiting 3 years.  However, I know its the right decision.  We picked this doctor because he was of similar heart and spirit.  He’s protective of his patients, both the ones he can see in the exam room and the ones he needs a microscope to see.  He is a good steward of life, and we want to be good stewards of life, too.

Its a weird world we’re living in, and Wednesday its about to get a lot weirder.

Your eyes saw my unformed substance; in your book were written every one of them, the days that were formed for me, when as yet there was none of them.  Psalm 139:16

While this was a surprise to us, it was not a surprise to God.  He knows our children’s birthdays.

Remission

“Good morning, Mrs. Bush.  You are endometriosis free.”

I don’t normally appreciate any greeting, in person or electronic, before 8:00am.  Particularly any that refer to me as formally as “Mrs. Bush”.  I also don’t normally hug and cry in front of grown men I’ve known for less than 36 hours.  Friday, April 17th was a weird day.

It’s been ten years since I was last in Atlanta.  Ten years ago, I was doing one of my first and biggest “grown up” things by hopping on a plane with my best friends and spending the next 3 weeks visiting friends in Germany.  While at the airport in Atlanta, I got super nervous, started pouring sweat, and then emptied my stomach into three (yes.  Three) “turbulence discomfort” bags, all before taking off.  I’ve done a lot of growing up since then, but my somatic anxiety tells haven’t changed one bit.

Last Wednesday, after meeting my parents at Big Bad Breakfast in Birmingham (excellent recommendation, Brittany!) for my last real-food meal (for a whole week), we hopped in Favre (my sweet new Southern Miss gold Jeep) and headed to Atlanta for my pre op appointment with the Center for Endometriosis Care.

I was given the opportunity to enroll in two separate studies regarding endometriosis, with one aiming to genetically link endometriosis and infertility.  All of the “awareness” noise we make is meaningless without action behind it.  I’m very excited to be a part of the action.  

After a conference with my wonderful doctor (he likes to meet you formally before he meets you on his exam table), I had a rather painful exam.  Doc diagnosed me with pelvic floor dysfunction.  I’m still learning what that is and what that means, but here’s the short (and Internet appropriate) version:  my pelvic muscles have been spasming like crazy for a long, long time.  When a part of your body feels pain, it contracts.  This part of my body has been feeling a lot of pain, for a long time.  It keeps contracting, over and over.  Now, it has a hard time knowing when that’s appropriate.  This is one of the main causes of my daily pain with things that shouldn’t be painful.  Next month, I will start a very specific form of physical therapy to help reprogram my muscles.  More on that at another time.

I was sent to our hotel with a lovely gift bag.  Inside was a humongous bottle of Miralax, some Dulcolax, lots of Gatorade, and a Fleet Enima.   This goes to show that with proper southern hospitality and etiquette, a colon cleanse can look like a spa gift basket.  Sounds like a party, right?  It wasn’t that bad.  Not something I’d actively choose to do on a Wednesday night, but I know it could have been a lot worse.  

As mentioned above, my anxiety lives in my tummy.  Occasionally, it pops up to make itself known to everyone else.  My anxiety heaves made their appearance once I was in the pre op area, putting on the awful gown and getting my IV Thursday morning.  More props to my nurse for being Johnny on the spot with the bag and ear sticker. Considering I had just emptied the contents of my entire digestive system a few hours earlier, there wasn’t much to put in said bag.  They started giving me ALL of the anti-nausea and anti anxiety drugs, which was super.  Shortly after, my doc came in, cracked a few jokes, and then did the most wonderful thing.   He took my hand and put a hand on Mister’s shoulder, and he prayed over us before surgery.  After a kiss from mama and daddy, they gave me the real good stuff, and I woke up a few hours later with searing pain in my right side.  This was odd to me, even very drugged, as 99% of my pain has always been on the left.

I have very vague memories of the remainder of Thursday.  I know I had a pain medicine pump with a button.  I know that button didn’t work for the first few hours, and Nurse Melinda was very impressed with my pain tolerance.  I know I made mama text Student Doctor Bestie and ask her why I could taste everything they put in my IV.  I know I hated those leg compression things, almost as much as I hated the hospital gown.  That thing went as soon as I had the faculties to sit mostly upright with some assistance, and on went my leopard print gown with matching robe.  Leopard is a neutral and is flattering on everyone.

I was informed later Thursday and again on Friday morning what all happened on the operating table.  I had a cystoscopy and a hysteroscopy (a look around inside my bladder and uterus, respectively), and those areas were clear and free of endometriosis, fibroids, or polyps.  I had three small incisions:  belly button and one near each hip, where my doc excisised all the endometriosis he found.  I had a presacral neurectomy, and a surprise appendectomy.  Turns out, my appendix had endo on it, and was “glued down” to my intestines.   Doc didn’t like how it looked, he was in the neighborhood, so PEW PEW!  There it went.  I’m sure God gave us those things for a reason, but I can’t say I miss mine.  This explains the pain on my right side when I woke up.

The presacral neurectomy has been the biggest adjustment for me, so far, and was my biggest obstacle in the hospital.  Nerves are important, and the ones down there are in charge of a lot of stuff.  It took me a solid 24 hours before I regained the noggin to muscle control that one needs to go to the bathroom.  It took some serious focus and a catheter at 3:00 am before my body figured out how to empty my bladder all by itself.  I got a high five from Nurse Melinda once I did figure it out, though.  Friday morning, my doc came in and gave me the only news worth waking up at 7:15 with a catheter taped to your leg to hear.  I am endo free.  He got it all.  The chance of recurrence (regrowth) is less than 5%.  My endometriosis is in remission.  The good news didn’t stop there.  Doc had originally told us that we could start IVF a month after surgery, so we scheduled our first cycle to start in June.  However, he has encouraged us to wait 3-4 months.  Not because of healing time or because I wouldn’t be able to handle the treatments, but because he thinks he has fixed our problems.  He has encouraged us to give the good old fashion way of conceiving a few months, because he believes it to be possible now.  He hugged me again, blessed us both, I cried, and then Mister took me home to nap where nurses wouldn’t bug me or poke me.  Saturday we went to Steak and Shake where I had a cookie dough milk shake, and on Sunday, Favre brought us home.

I went back to work yesterday.  I’ve gotten a lot of surprise about returning so soon, but I promise, doc said I could sit at my desk and do stuff.  It helps that I love my job.  It helps that my property is small, and I can plan my day around specific needs (like being still).  It also helps that I have a rock solid work family.  I work in a relatively new company that makes a point of rallying around each other and supporting their managers and properties in any capacity.  I knew this on the professional level already, but they have gone above and beyond anything I expected with this surgery and potential IVF.  I have personally heard from my direct supervisor, my counter parts at other properties, the president of my company, and a few of the owners, multiple times over the last week.  Each time they have made it a point to be encouraging, supportive, and to make this time as easy as possible.  They didn’t judge me when all the feelings came out and I cried after a simple “safe travels”, either.  

I am still sore and moving a little slow.  I probably will be for another week or so.  I come home from work and immediately sit down, with the intentions of doing nothing for the rest of the day.  So far, that’s working out great.  We have wonderful friends bringing us meals while I continue to heal and figure out what “normal” is.  I have hurt every day for so long, I have no idea what endo-free life is going to look like in practice, but I’m pretty excited to find out.

While this month has been immensely stressful, it has been full of encouragement and hope.  There are a few uncertains still, and I have a feeling that pelvic floor therapy is going to be another adventure.  We are healing.  We are encouraged.  We are hopeful.  We are well fed.  And we are His.  To God be the glory, great things He has done.

Big Plans, Set Dates

Hurry up and wait.

That has been our lives, it seems, since Christmas.  Lots of waiting.  Waiting for phone calls from doctors, waiting for paperwork, waiting for insurance,  etc.  We’ve still got some waiting to do, but there’s now a light at the end of the tunnel.

Excision surgery is set for April 16th in Atlanta with the Center for Endometriosis Care.  A plan of procedures has been made, my employers have approved the necessary leave time, and our insurance companies didn’t laugh at us.  I will be having a cystoscopy, hystroscopy, laparoscopic excision of existing endometriosis, hysterosalpingogram, and a presacral neurectomy.  

Those are all great big med school words, and I had to google the last two.  As big and scary as it sounds, it will be three small incisions to get in, all of the major work happening under the skin. Two of these procedures are necessary for us to start IVF, so it’s nice to go ahead and knock those suckers out on one operating table.  One of these procedures (presacral neurectomy) is actually the removal of the presacral nerve, as it originates from the base of the spine, splits, and wraps around the uterus.   This is admittedly the more invasive procedure.   My current OBGYN in Hattiesburg once told me that my body was actively having contractions, just like labor contractions, every week, dealing with and trying to process the abnormal growths of endometriosis.  He jokingly told me that labor would be a breeze for me, and then wisely moved out of arms reach, lest I go to swinging.  The removal of this nerve will eliminate the pain caused by these contractions.  In that same thought, a side effect is that I may not feel contractions (that actually bring about a baby) should I get pregnant.  As I sit here towards the end of a really hard and painful week dealing with endo,  I just can’t be mad about that.  Contractions for years, with no baby?  Pretty sure I’ve earned it.

April 4th, I will be running my last half marathon with rampant and unchecked endo.  I’ve run the distance before.  I’ve run this exact race before.  This race, however, will probably be an emotional one.   It will hurt, it won’t be pretty, and it sure won’t be fast.  It is the most ladylike way I can think of to give endometriosis the middle finger.  Will I be cured after this surgery?  No.  I will always live with, always fight this disease, until the day the Almighty calls me home.  There is no cure.  Yet.  The best I can hope for is remission, until the day they find a cure.  If I can run my halfs and finish my full marathon with is disease in full force, unchecked and running amuck in my body, I just might be able to fly in remission, sans pixie dust.


Another big date has been set, and an appointment has been made.  We have our initial appointment to start our first cycle of IVF on June 1st in Jackson.  My wonderful doctor moved clinics on me (just across town), and joined another FE.  With that move came a few new nurses and staff.  I was wary, because I’m very emotionally attached to my IUI nurses.  I don’t just ugly cry in front of anyone, and “concentrated lady feelings” come with a lot of ugly cry.  They reassured me they were still there, there’s just more of them.  Since he has joined up with another doctor, their pricing structure has changed and is actually more affordable than we were initially planning.  Medications will be ordered, our wine shelf will again become the “lady feelings and needles” shelf, more awesome band aids will be purchased, and the ovarian stimulation will begin on June 1st.

So far, these two things have been just a concept.  Now, they are hard dates.  I can count down to this, look forward to this.  I know that I could wake up on April 17th and be well on my way to remission.  By the end of April, there’s a good chance that I will be virtually pain free, with every organ system south of my rib cage functioning properly.  If my prognosis is as good as it’s expected to be, we could be parents to itty bitty blobs in Petri dishes by June.   I could ugly cry just thinking about it.

I have hurt for 15 years.  I’ve gone to school, gone to work, gone to church, gone running, and lived life with this for more than half my life. Not because I’m brave.  Not because I have a high pain tolerance (that’s something you develop out of necessity, in my opinion).  Not because I’m “handling this well.”  Because this has been my life, and it has to be handled.  I can’t ignore it.  I get up and deal with it, because that’s what I have to do.   This isn’t the way most little girls imagine how their family would come to be, but I am already seeing God be glorified in the process.

We do have some specific things we covet your prayers for:

  • Preparation for surgery:  Finacially, that we would use what God has blessed us with wisely; physically, that I can maintain a healthy weight up until surgery, as I will likely lose a good bit immediately afterwards, and that all surgery prep will go smoothly; emotionally, that my pre surgery anxiety will be replaced by His peace.
  • Procedurs will be uncomplicated, go as planned, and nothing extra be needed.
  • Healing will happen as planned, with no complications, and I will be able to return to work and life on schedule
  • REMISSION
  • Safe travels:  Mister and I, along with my parents and my sister, will be in Atlanta for 5 days.  It takes a village, and God gave us a good one.

We still have a long way to go, our journey is far from finished, but our God goes before us.  Sometimes he is a cloud, sometimes he is a pillar of fire, but His presence is always known.  We are His, and He knows our babies’ birthdays.