No answers. No Options. Only Questions Remain.

No answer.  That's the answer.  The answer is wait.  More.  For an explanation.  There is no evidence of a trisomy in the quick assay, known as an Insight. There will be more digging into the genome now.  O God.  Did my X do this to my son?

No answer.  Or answer.  Either way, it doesn't change much except prognosis.  An answer would have research and stats to help guide the prognosis.  No answer means more waiting.  No answer means does any known 'syndrome' or 'condition' fit what Everett has?  Enlarged lateral and fourth ventricles, absent cerebellular vermis, absent corpus callosum, significant VSD (heart defect), intestinal/diaphragmatic hernia into the lungs, dilated kidney and renal pelvis' and who knows if there's something else.  There isn't a system that goes untouched.  Everything is affected.

The question, now more than before possibly, is does Everette hurt?  Studies are showing that at 20 weeks gestation, in utero babies can feel pain/external stimuli.  Clearly.  Kipton used to kick Keith's hand every time he touched me.  There's not a person/doctor on the planet that will convince me that a newborn doesn't feel pain.  I had a preemie.  He felt pain.  We were ushered out of the NICU all the time so we didn't hear his screams while they stuck and restuck him repeatedly.  If he laid on a button on my shirt, he would squirm away from it.  At times when he had reflux, he would scream.  Ask any mother of a colicky baby, babies feel pain.  Ask any mother, you would take it away if you could.

So what happens if Everett is in pain because we choose to deliver?  What if his VSD and his intestinal herniation lead to congestive heart failure, making my infant son die PAINFULLY, drowning in his own fluid?  What if the intestinal hernia so cripples his lungs that breathing itself is painful?  What if pooping is so painful that there are endless screams as it tries to make its way through the herniation in his lungs, causing him to stop breathing?  What if his kidneys don't work and fluid is constantly backing up?  What if 'viable' life is something so short of life that it is painful and barely recognizable?  What if all these things *don't* take his life, but rather make his existence painful and miserable?  What if his existence is based only on the ability to mediate pain?  Is existing really life?  (And herein lies the judgment I warned you would come.  I can only imagine the comments and scoldings to come)

On the flip side, almost all of the termination 'options' are not options in our hearts.  D&E. D&C.  He could FEEL what was happening. How is that different than him FEELING his own death outside the womb?  It seems even less humane.  The other possible option is a pharmacological cocktail to induce labor.  Just so he can (most likely) be in pain. 

There isn't a good option to be had.  Hopefully tomorrow with genetic counseling, we will have more insights and more leads to explanation.  We should have the full genetic assay studied and interpreted by the end of the week.  Then, I'm sure, there will be more appointments.  Especially if we try to see what the viability of life really is with all these abnormalities.  There are at least 4 prenatal specialists we'd need to see.  And so many surgeries, if surgery is even possible.  The doctor didn't seem to think that many of the malformations could be fixed.  Possibly only the VSD.  She didn't even mention shunting.  She seemed very grim about the diaphragmatic herniation-- possibly more somber about that than anything else.  She offered no treatment options for that.

And the numbness continues.  The disbelief abounds.  The fog persists. And questions remain.  With no answers in sight.  I have cried and screamed inside my head until it pounds every night.  I have cried so much my tear ducts hurt.  I feel so empty and overwhelmed I can't often think straight.


And then Aiden hugs me.  Kipton calls my name.  And for a moment I am restored.  And then, I remember.  And I hug my boys.  I kiss them.  And we play trains.  We read books.  We play caboose.  And I want to quit everything just to be with them every second.  But I'm so exhausted I can barely play trains.   I can barely read books.  I can barely play caboose.  Afterall, I'm still 23 weeks pregnant, the mother of a sweet but strong-willed 3 1/2 yr old and 19 month old who doesn't sleep through the night, a wife, and business owner. 

But I will play and read and hug and kiss and write so that I can make it through this.  If you see me, don't expect some of the emotion you read, I can't and expect to keep going if I do more than give sterile details.  Because still, a week later, we have no answers, no options, and only (different) questions.