Saturday, April 6, 2013

Well some results are in...

And one of them is that Nationwide ain't on my side.... You know how the elderly gentleman spun out of control in the right lane, kept spinning into my lane, hitting my van in the front? Turns out, I rearended him.  Yeahhh.  That is news to me.  Currently, our 21st Century insurance is arguing with my "victim's" Nationwide.  We will see how things turn out.  Ah financial issues, our old friend...

So the available distractions from the great mysteries of death, life, and the will of God are increasing in number and intensity.  I am also trying to hyperfocus on organization and spring cleaning now that I ... feel better and oh only about five pounds lighter due to the consistent supply and consumption of brownies and lasagna and the like these weeks. Nice try guys... keeping my weight up. :) You have been such a blessing.  I mean even on my best days, every time I open the fridge I feel like I'm in an episode of Chopped.  I'm quite sure there would have been several days I would have forgotten to cook at all, let alone know how to.  :)

Life sure goes on.... Dan is even preparing for a business trip to NYC next week (though for just two days). The older girls have rehearsal for their choir concert almost every night next week. The younger girls have had the croup for days.

And how am I doing? Well, somewhere in between "pretty good" and "how do I go on?" :S  I like the sunshine. I like normal clothes. I love not being quesy.  Yet I wept today while picking up toys, because I found the mommy in the "Kiss and Care" cow set Felicity likes... but I still can't find the calf.  :S

I've actually had a couple tear-free days now, though not consecutive ones yet. Other than some minor physical symptoms, the occasional sad note or drawing from Annemarie and Claire, and my husband's more constant inquiries if I'm "okay," I have moments where I actually wonder if all this was some bad dream, and where on earth I came up with this awful story I keep writing about.  But then there are aching moments of sadness when something changes from the before to the after, and it can be the darndest things... Most recently, it was finding that we'd left a computer running for a couple months.  The moment it was turned off, I felt yet another of those tiny changes from the beloved reality of the past to the emptier present, and it is so bizarre but golly it hurts.

Sometimes these more unreasonable things bother me more than the obvious things which do (indeed) prove this all is real: like today when Women & Infants (yeah the same hospital that performed my surgery) sends me this big fat envelope congratulating me on my pregnancy and telling me now's the time to schedule birthing classes.  Also in the packett was a brochure with a newborn's hand saying "This is Why." (I assume the end of this sentence is "[why] we do what we do.")  Two weeks ago, I was handed the sister brochure to this one, with a smiling older woman going into surgury, and the words "This is Why" on the front as well.  This was particulary odd since I was handed this brochure within minutes of finding out my baby was dead, and the biggest question was (and still is) "Why?!?!"  And somehow I don't think it was to become a smiling surgury patient at this somewhat insensitive hospital....

But yes, back to this post's title, we are a tiny step closer to finding out some answers.  I've had only one follow-up doctor's appointment so far, though there are many more to come.  And I did actually receive some results on Perpetua. I had imagined I'd receive these results in an office with a large, highly-polished desk, surrounded by inane floral decor.  Instead, the first pathology reports suddenly appeared while I was perched on a high exam table, decked out in a paper skirt, fighting the urge to yell and throw things because I was also between an ultrasound machine and a huge wall chart of "Your Baby's Development Week by Week."

Now I'm still waiting on the (hopefully) more conclusive autopsy results. But I will type verbatum the results of Perpetua's genetic testing, delivered in the sensitive manner described above:

"Results & Interpretation (Verified): Female result with a gain of 912 Kb at 6q14.3 of uncertain significance."

Say what?  The dear doctor, pulling from a decade's old bio-chemistry degree, tried to decipher this along with me.  And very basically, it means Perpetua did have something abnormal in one pair of chromosomes, with the right chromosome having more genetic material than the left.  This particular chromosomal abnormality has only been observed in one (!!!) other patient, ever.  And in that case, the baby lived.

The conclusion of a page of barely comprehensible findings states the following two sentences:
"The significance of the gain at 6q14.3 is uncertain.  Genetic counseling is recommended."

So yeah, I think I'll wait for the autopsy, which I hope and pray will be in English and intended for those of us with liberal arts educations.  And baby girl, I don't care what rare thing, significant or insignificant, was different about you.  I love you perpetually.  :)

The most positive experience I've had since I last posted was meeing with a fellow mom who has experienced this type of loss, and has actually had to do so three times.  I stayed out with her till 11; I don't think Panera dared kick out two sobbing ladies from the table way in the back, hee hee.  She gave me a necklace with silver threads wrapped around two shining beads, to remember my lost little ones: Gabriel and Perpetua.

It is perfect.  Such a comfort to have something tangible to hold when I think of them, especially after my hands have (again) automatically sought my once rounded belly.  It is so helpful to remember, in this time when I feel so literally empty, that I am never alone.

"So do not fear, for I am with you; do not be dismayed, for I am your God.
I will strengthen you and help you; I will uphold you with my righteous right hand."  Isaiah 41:10

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