Answers Part 2- The *Me* Factor

I think I've been teasing you all with this post for months!  In fact, it's been well over two months since I wrote about the snowball of events that resulted in Siena's death at the time of her birth.  (You can read that here.)   The main reason I have put this post off is because we have had a steady stream of incoming information and results and plan making.  I wanted to share as much information as I could (within reason).

From the beginning we've known the answer to what was wrong with her (generally speaking) but no solid answers as to why any of it happened in the first place.  The truth is we will never really know that specifically, but what Siena did do was finally wake my doctor up to the fact that what I've been experiencing were not "normal" losses.

Maybe she woke me up a little bit too.



See, I had known since my pregnancy with Lucie that something had "happened" in my body and that things were really out of whack.  It started with out of control weight gain that no one could explain, which had never happened in any pregnancy before.  I think my midwife/OB team ordered at least 3 thyroid tests during my pregnancy because they just could not believe it could have been normal.

But it always was.

Then after delivery, I was losing 2-3 lbs/day for the first week or two and then it stopped cold turkey and I was unable to make that scale budge another inch.  Only now, since I wasn't pregnant, for some reason my doctor in Utah decided this was normal and refused to acknowledge that we eat a very healthy diet and I exercise more than regularly and that it was anything other than my own darn fault.

Then Lucie was tiny and slow growing and my milk supply was perpetually on edge.

Then my period showed up at only 7 months PP, even breastfeeding around the clock with all the "rules".   Rules which had kept my cycle in check for a minimum of 11 months, including with a failure to thrive baby who was definitely not eating enough (Caleb).

Oh Heidi..it's normal....

Oh if I had a dollar for every time someone told me this.  It's ok to admit you even thought it while reading through the above section.

Then it took a few extra cycles than normal to conceive.  My cycles were down to 24-26 days, but I finally did conceive so I didn't worry.

I made it past 8 weeks and then 10 and I was sure things were safe, but they weren't.

I miscarried and my doctor (back to MN doctor now) was supportive and encouraging.

My cycles were not.

When I got pregnant again, I ended up finding out that my last "cycle" had been weeks 4-7 of what appeared to be a healthy pregnancy.  We saw baby on ultrasound right away with a good heartbeat.   The dates didn't line up with any of my charts and I wondered how that could be, but we celebrated thinking I must have forgotten to record something.

Then my pregnancy got crazy.

Siena was born.

Siena died.

And things got even crazier.

Right away we knew that something had gone wrong in my pregnancy early.  Something structural...foundational...affecting her nutrition and growth and snowballing into her laundry list of problems.   All of the early results and information pointed this direction, although each doctor (my local OB, Mayo, and the NaPro provider I consulted with) had a slightly different hypothesis as to what exactly that was.

Mayo has been the least helpful of all (should this surprise us?).  The basics of what they are saying is that there was a placenta issue.  Siena's placenta was extremely small, attached poorly, and all over not that healthy.   They have no explanation for this and no interest in figuring out why it might happen only assuring me that it's unlikely to happen again (how can you say that if you don't know why it happened?).  Provided, of course, I wait a minimum of 18-24 months before attempting to even think about being pregnant again since anything prior to that would gravely endanger my life.

Yeah, they've said that to me a couple times before.... Maybe this is a case of the little boy who cried wolf and I'm not taking them seriously when I should, but I think they are still crying wolf judging by the response of other providers.

My local OB who I have seen for many years and walked the crazy Mayo yo-yo with us during Siena's pregnancy agrees that it was a placenta issue.  His theory is that when development reached her umbilical cord/placenta and the placenta was supposed to take over for the corpus luteum that it didn't do it's job.  Looking at my overall history (something Mayo has consistently refused to do) he agrees with me that a hormonal or other maternal factor could be playing into the strangeness of all of my recent experiences, but admits that this is not his area of expertise.  He agreed to work with a provider trained in NaPro Technologies and the research of the Pope Paul VI institute.

Enter my NFP/NaPro Technologies provider.  From my first visit with her, looking at my charts since Lucie was born (I had them all), she had a theory.  Her theory revolves around the corpus luteum as well, only instead of the placenta not taking over for it correctly, she hypothesized that it was not doing it's job in the first place.  (For those who are not following this, I will summarize in a very non medical way...the corpus luteum is formed from the follicle that releases the egg and it supports the baby with hormones until the placenta takes over around 11 weeks.)  She didn't think it had developed properly AND said this could effectively be proven looking at my hormone levels during a current cycle.

So we did.

Awareness of progesterone deficiencies in pregnancy is becoming much more common.  Even my local OB was familiar with the labs she ordered to look for that.   Turns out not only do I have low overall progesterone during my cycle, it is dropping much too early in the cycle (only 8-9 days after ovulation) instead of remaining high until it is confirmed that I did not conceive that cycle.  There are also several other hormones that are low.  Hormones that are produced by the pituitary gland that could absolutely prevent a follicle from correctly developing into a corpus luteum and supporting a new baby.

These hormone imbalances could also definitely be playing into my body's absolute refusal to drop pounds as well.   Kind of a false hypothyroidism.  I have the thyroid hormone, but it's not able to work correctly without the other hormones that are supposed to be helping out with it's job.   (That is a way over simplified explanation....in no way have I been diagnoses with hypothyroidism only that this other hormone deficiency could be getting in the way of the thyroid hormone doing it's job.)

So the initial round of "prescriptions" included upping my B-6 and D, switching to a GAPS diet (or other anti-inflamitory diet), a list of lab work, and to take a personal retreat (bonus of a Catholic provider who was as concerned about my spiritual preparedness to take on this road).

I finished that list (although my GAPS diet is somewhat modified for the purposes of I lack the time for strictly GAPS for just me and I lack the funds to do full GAPS for 7 people) and then I checked back in.

The plan now that we have the lab results is to add progesterone supplementation every cycle (trying to get pregnant or not) from P+3 (3 days after ovulation) for 10 days or until I start bleeding at which point I can stop.  If I make it to P+12 I am supposed to take a pregnancy test and then "fly up there" (her exact words) so they can start me on progesterone injections and develop a testing/management plan.

Since progesterone doesn't have as much to do with the first half of the cycle (although it's still involved), in order to address the other problems I have started low dose naltrexone (LDN) to hopefully get my body to boost production of those suppressed hormones.  She's hopeful that this will be successful, as I've been able to conceive relatively easily and supporting the pregnancy has been more of the problem.  LDN is gaining recognition for its possible off-label use for a range of fertility issues and other auto-immune issues and has been used successfully in Europe and the US for years.

So there you go.

I'm not a doctor and I've probably explained all of this somewhat poorly, but you get the idea.  A theory was proposed, tested, and is not in the process of being remedied (hopefully).  There are no guarantees in any of this and what we really don't want is to get trapped into the obsessiveness of cycle watching.  It goes against pretty much everything we have practiced in our marriage up to this point.  We having been talking and praying a lot about how to move forward with all of the information we have with the goal of getting my body healthier, yet also continuing to be open to life (because we are) without being hyper-focused on a new baby as the only acceptable outcome.  We want to try to avoid the emotional swings and let downs of that P+12 pregnancy test every month, but I know that it will be very hard.

Both the NaPro provider and my OB are perfectly comfortable with "whenever" as the timeline for another baby at this point.

I find that both terrifying and comforting.

I worry at the possibility and rejoice in the hope.

I want to never be pregnant again.

I want to be pregnant right now.

Ultimately, it's not my call but I am very grateful to have the information we need to give any future babies the best chance possible.

And just think....if this was really Siena's story, how much more of a miracle does that make her?

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2 comments :

Lisa Steger said...

She is definitely a miracle in every sense of the word. :)

Abigail said...

Sending lots of love and hugs. Also sending you this message--I'm right there with you. I've had to supplement aggressively progesterone for 10 of our 11 pregnancies. While not pregnant, our NaPRO doctor has me on both estrogen and progesterone for P+3-p+12. Also, HCG shots on P+3, 5,7, 9. I *do* have Hashimoto's hypothyroid--if you are comfortable sharing what your TSH, T3, and T4 numbers are feel free to message on Facebook. Sometimes what doctors call "normal" technically isn't because the ranges are so large. Just a thought. It does require a lot of focus on the charting and knowing just where you are, but it does become a second nature and not as stressful once your cycles begin to play more nicely. Be assured of my prayers for you on this journey!! And I commiserate with you on the weight gain...oy vey! (And lack of loss!). Sending big hugs!!