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Jan 3, 2017

One day at a Time

Happy New Year, everyone.
I hope you found yourself, surrounded by the things and people you like most, as we all headed into 2017.

It has been just over a week since we lost our baby, and I am moving slowly, trying to work through the emotions, to level out, to decide what I should write about, or not write about, etc.

I am sure no one wants to read about constant wallowing and self-pity, but I am more than allowing myself to feel those emotions when they rise up in my throat.

I am very fragile right now.
Physically and emotionally.

I have learned over the last week that, although I probably weigh the least I have in years, I am not physically strong to take on normal tasks.
Putting away Christmas decorations and general purging and organization used to be met with a cut-throat, get-er-done attitude, but after three hours of work in a day, I am generally exhausted.

And my emotions...well...ha...obviously they are all over the place.
Tip-toe lightly around me, and try to stay neutral and up-beat, and I'm golden.
Mark, innocently enough, thought that by joking around with me, would help me forget about everything....but I guess I'm not in the mood right now for crazy antics.

I have not been sleeping well at night.
That is the time when I am all alone with my thoughts, and boy do I have many.
Be it questions, or flash-back to the event, or sadness, or anger....it all comes flooding back.

I tend to spend a couple hours doing research on my phone until I'm too exhausted to think anymore, and can finally fall asleep.

What answers am I looking for exactly? Not sure.
As futile as it may be, I'd like to know if there is some measure we could have taken to help prevent what happened.

I know most people are quick with the "you can't blame yourself" pep talk, but honestly, I am absolutely okay knowing that if it WAS something to do with me, and not the baby, that could have been remedied.
I'm all for knowing.

See....IVF, regardless of all the technology and science behind it, still has a very wait and see approach.

Sure, there are things to test with at the start, but turns out, there are a lot of variables that don't remain constant. All the expensive, invasive test we put our embryos through don't guarantee anything.

I pushed for a follow-up consultation last week, while infertility coverage remained, and the doctor asked a lot of questions about me in the weeks prior to miscarrying, then provided a lot of information and insight about the baby and its development.

He asked about my cold...and what my fever was at it's highest.
A high fever in the first trimester could lead to miscarriage.

And then there is my immune system...sometimes inflammation can cause an increase in these cells called natural killer cells, and maybe that had something to do with it.

He recommended I get a miscarriage blood panel completed this week to hopefully rule out these things.

But of course, ruling them out doesn't give us any more answers other than it wasn't my fault.

So then you need to question the embryo.
The PGS tested, chromosomally normal embryo.

And what we learned was that, after the embryo implants and starts developing, it can actually develop an abnormality that wasn't previously caught in the PGS testing.

Fun, right?

Because the cells that are biopsied for testing after five days of development do give a clear picture...but then the cells multiply, and continue doing so...and this could likely breed new complications, which could mean something like Down's syndrome...which could lead to a late, spontaneous, first-trimester miscarriage.

That's why they always recommend additional, in-utero testing.

And here I thought it was just to re-confirm what we already knew.

Silly, silly me.

The nurse asked me if I wanted to biopsy the baby for this testing, and naturally, I declined.
Fuck you cutting up my baby. My precious, baby boy.

Because this was three days before I received the information that the baby could possibly develop something bad that could terminate the pregnancy.

If my blood results come back negative, we have to assume the baby was growing incorrectly.

So, this is where we are at.

And of course, I'm sure you are wondering about the future.

The truth is...we were given options...one's that included taking a forever-break, trying again, donor eggs...everything was laid out on the table for us.

At this point it comes down to sanity.

Could I do another round of IVF? Sure.
I'm a logistics queen. I can set-up insurance and get pre-authorizations and budget the ever-living hell outta this thing.
Those needles and early morning appointments don't bother me, and they sure as Hell didn't give me any crazy weight gain or other terrible symptoms (aside from being bat-shit crazy half of the time).

The hardest part isn't the needles, or the surgeries, or the...gulp....money.

It's the waiting.
The worrying and waiting for results.

You suck out the eggs and they give you a number, and then you spend up to seven more days watching those numbers plummet, hoping you have anything left for testing.

And then you get them tested.
And you hope and pray for three weeks that what little amount of embryos you had, anything will be normal.

And if you get some normals?
That is so great!

So you prepare for a transfer.
And you transfer one of those normal embryos, and you wait for two long weeks, praying and worrying and wishing time away...for your beta result, that has a 70% chance of being negative.

And then maybe you slide by with a positive?

Well....we now know that you can't just assume all will be well....you have to do more testing, and more worrying and more waiting....to see if you can carry a pregnancy past, well....10+ weeks...the supposed safe zone.

At 10 weeks of pregnancy, after you have a confirmed heart beat....you know what the percentage of miscarriage is?

2%.

Hi...nice ta meetcha....I'm Mrs. 2%

And there are countless others.

The roller-coaster of emotions can literally drain you of everything you ever recognized about yourself. You are just a shell of a person with a smile on their face, trying to get through another fucking day.

But you know what trumps ALL OF THIS?

Hope.

The hope that maybe, just maybe....we could beat all this.

The hope that my dream to become a mom may actually happen.

So that's where I'm at...stuck between hope and a hard place.

Time will tell, loves.
Until then, we are making plans for fun outings.
We will reconnect with friends.
We will likely buy a sensible, grown-up car this year.
We are going to live simply, one day at a time.

And see how it goes.
I'll check in from time to time, to update about life.
Because it's going to keep going....
Thank you for reading. XO

7 comments:

  1. It sounds as though you have a good plan moving forward. Take care of yourself while you heal, physically and emotionally. I have been through four miscarriages, two of them with PGS tested embryos. I waited too long for psychological treatment (more than two years) because I felt like I was handling things really well. I probably was, but you don't have to struggle through it. This year I found a therapist who is skilled in EMDR, and the anxiety and stress that was caused by the grief of losing my babies was taken care of in no more than three sessions. I hear EMDR is very effective (and it was for me), but some people don't like it.

    Also, I went on to have all of the immunological tests done. It turns out I have elevated NK cells and was positive for ANA (anti-nuclear antibodies). This cycle I've added prednisone and intralipids and feel very positive about my chances. We waited too long for this testing as well because I always felt my problems with miscarriages were immunological. I always felt that my body was "killing" my babies. When you fall into that 2% category, I feel that it's time to look at the non-standard treatments that immune testing can provide instead of continuing with the same old standard of care. I've been keeping you in my prayers and thoughts as you move through this.

    Finally, don't be afraid to move the line in the sand. I said I was done after the last miscarriage, and wouldn't try again with my own body. It was time for a break, and after time and therapy, I felt ready to try again with a new strategy. It's absolutely ok if you are done, but it's also ok if you're not. Making sure you and Mark are on the same page is key, and my husband and I took time to ensure we really were on the same page because he wasn't done after the last cycle (but he would have respected me if I had insisted I was).

    Hoping so strongly for you!

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  2. Your body has been through so much, take the time that you need and don't overdo it lady. My hope for you is that you figure it all out, find some peace and smile again sooner than later. It sucks donkey balls when you are in it that's for sure but don't give up hope, because for sure there are many more wonderful things, moments and life events for you and Mark to share! I know this to be true!!

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  3. I was given advice after my first baby loss but the only piece of that advice I remember is to feel whatever it is I'm feeling and not apologize for it. So I"m passing that on to you. It's ok to feel sad, mad, silly, happy, crabby, whatever so feel what you are feeling and don't worry about it. Keeping you in my thoughts.

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  4. Hoping right along side of you sister. I will never understand why some people have to do all this garbage to get to motherhood. But I'm right next to you...cheering you on however I can. ��

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  5. My losses were harder on my body than I ever imagined possible. Pregnancy has been way easier than recovering from my later loss. Take your time, take it easy, heal, regroup. Thinking of you every day.

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  6. Thinking about you Tia - another blog friend of mine just lost her baby at 5 months, and I couldn't help but think that the two of you would be great mothers, and there are other people out there who don't deserve to have kids. :( Hugs to you!

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  7. This all sounds like a good plan. I love that you are taking some time to regroup and travel - its good for the soul and helped us as well in our IVF journey (we took a little break two summers ago to travel to the BVI and it was so nice to feel refreshed and ready for the next steps).

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