It's Never Boring

Do you ever feel like you are spending most of your life just trying to figure your life out?  It's been like that lately.  Logistics.  Being a PRN at work I feel like most of my job is just trying to nail down my schedule and find hours I can actually work.  I'm a stay at home mom 50 hours a week, and I have to go to work outside of those hours, day or night.  In addition to that I've been trying to schedule the kid's summer activities, manage our finances, go to counseling, and solve all our medical mysteries.  Adulting, am I right?  On the medical mystery side of things, life has been quite interesting this past month.  Even more so than I expected.

I spent a lot of time as we waiting for our karyotype results preparing myself to accept what fate had handed to us.  If we had something frequently fatal written in our chromosomes, in our very DNA, it explained so much, and there's little we could do about it.  By the time our results finally came in, I fully anticipated seeing an abnormal marker, and was ready to embark on the journey to acceptance of what this might mean for our life.  Imagine my surprise and confusion when we learned that not one, but both of us had normal karyotypes. How?  How do we have normal chromosomes and yet, 7 losses?  That in combination with Kevin's DFI result really meant that genetically speaking, we should be able to have a viable baby.  It was shocking and thrilling, to feel that little spark of hope again, that just maybe, we could complete our family with one last rainbow baby.  Even with that hope, the medical side of my brain was spinning.  I could blame 6 losses on Kevin's DFI before surgery.  Was our loss of Vincent just a "chance loss"?  Did it have to do with my blood or MTHFR?  Somehow tie into autoimmune?  Was it something else entirely? 

After our results came in, we set up a consult with our fertility doctor.  We've been working with him since 2014, but we haven't sat down to talk with him and go over everything in years.  We wanted to make sure we weren't missing anything and everyone wanted to be on the same page.  For the appointment, I tried to summarize our history into one page.  Everything we knew was a problem and everything we had ruled out.  It kind of turned into a horrifying type of resume.  I wanted to lay everything out clearly and ask the doctor if there was anything I had missed or anything more I could do.  We waited about a month before he had an opening to see us.   

When we sat down with our doctor it was a comforting place to be.  It's probably not a good thing when the fertility clinic feels like home, but those people have been so good and kind to me for so long and I trust them.  The appointment was at least an hour of the three of us just talking in his office.  He told me on the one hand, I seemed more well read in this area than some of the physicians he knows, but on the other, he was sure I had gotten to that point out of necessity, and he was very sorry for that.  We discussed all the theories.  "The more we learn the less we understand about all of this" and that type of thing.  I expressed how unless there was something brand new I just didn't think there was anything left.  He looked up, like with a twinkle in his eye y'all, and said, "Actually there is."

I was just like...wait, what?  And he explained even since the time I had been in last this was new.  At a conference he was at he learned about this new study that suggested 25-30% of women with recurrent pregnancy loss were testing positive for endometritis.  Now don't confuse that with endometriosis, you've heard of that before, it comes with fibroids and bleeding and major symptoms.  That was ruled out for me ages ago.  Endometritis is more at the cellular level.  They test for it by doing a uterine biopsy and looking for CD138 cells (I believe they are plasma cells.)  I had so many questions.  Could I have had this my whole life or was this a flare up thing?  He really didn't have the answers, it's all SO NEW.  But one thing I do know is that inflammation is so highly correlated with autoimmune and that blew my mind.  He said that was a very good point.  When this was introduced to him he thought 25-30% of patients? Impossible.  Until he started testing his own patients with 2+ losses.  He told me about a fourth of them have come back positive.  And the treatment is simple, it's basically an antibiotic treatment.

SO.  My mind is blown.  Could I have possibly been on an antibiotic for something before we got pregnant with Aidia and forgotten?  I want to get this information out there.  I'm not excited about a uterine biopsy but I've done lots of painful procedures that I've had to be awake for, what else is new.  It has been such a headache to work this out.  Between the insurance and job schedules (and then there are only certain cycle days you can have the biopsy done.)  But my doctor is an angel and offered to do his portion of the biopsy for FREE so I could focus on paying for the pathology portion (it's a send out lab.)  He really wants to know if I have endometritis.  So my biopsy is in like, 4 days.   

Meanwhile, life has pressed on.  I think for many people, miscarriage may seem like a short term hardship that ends, but for many parents it doesn't feel like that.  We continue living it.  I go to work and stand outside the door of a newborn baby and its mother, and I have to take a little breath of courage to myself before going in to do my job.  My heart shatters just a bit every time, as I smile and congratulate them.  Not because I don't feel joy for them.  But because I feel so aware of how empty I am.  How I am not almost 5 months along as I should be.  The grief doesn't stop and the struggle to continue to look to the future with hope is just that, a struggle.  It's work.  It takes a lot of energy.  Sometimes you're hanging in there by a thread and it's just a normal Tuesday. 

Sometimes all Aidia wants to watch is the "Big Brother" episode of Daniel Tiger where they get everything ready and then his mom has a baby at the hospital.  She will cry until I change it to that episode because she's so fascinated and excited by it.  That part doesn't make me sad, I love her for it.  She adores babies and she's only 2.5 years old.  I hope someday I can give her that experience. 

Some nights I stay up and cry half the night.  Sometimes it feels like it just barely happened.  Like just today, I got a bill from an OB I saw during my pregnancy that wasn't processed correctly.  It doesn't just stop for me.  I've been asked if I'm "feeling better" as if having a miscarriage (or 7) was like having the flu or something.  No.  I'm not feeling better.  But I'm being as strong as I can be and having faith even on the days that I feel the most sorrowful.  It seems like having children is difficult and sacrifice enough, it shouldn't be this difficult to actually HAVE them.  It's a sentiment I've heard expressed often in the infertility community. 

For me, it's hard to be baby hungry and know I have the ability to get pregnant, but I'm so afraid to be pregnant and gamble if they would survive or not.  It's the worst kind of gamble.  It's your health, the baby's health, your sanity, your family's stability, your finances.  All of it. 

I lost a lot of ink when my tattoo healed because it had such fine lines, so I had it touched up/ redone a bit and that was healing for me a bit.  Sometimes when everything hurts a lot emotionally it helps to have something physical or tangible with me to represent all the memories, work, love, hurt, for all my babies.  It's been such a journey.

forget-me-nots

The longer I've been off any medication to manage anxiety and depression, the more difficult it is to run a normal life and keep a happy environment for my hubby and kids.  I can still manage it but it takes much more effort and comes with more breakdowns.  It's a sacrifice I'm willing to make when growing a healthy baby, but it's a harder sacrifice at the moment.  My meds can't be taken while pregnant so I can't restart them now (it takes a few months for them to work and it's very hard on the brain chemistry to start and stop them if we're going to try again.)  So it's actually easier to stay off for now since I'm already off. It's one of the reasons we don't want to put off trying if we're going to try again.  I'm already doing one of the hardest parts.  I've been working at counseling but it is hard to feel yourself slipping and gradually declining.  If the unthinkable happened and we had another loss, I would definitely take like a year off from all of this at least and go back on my meds.  But hopefully with everything we've learned, and however the biopsy turns out, we will have our last rainbow baby on the way later this year. <3