She could die

I stopped writing about this whole thing because I was stuck on those words again.  They’re so difficult to read, let alone write.  Even as I sit here with spit up all over me and a beautiful little girl snoozing in the next room.  So. Difficult. to. read.

He insisted that there were a number of things that could be wrong, he didn’t think Downs was one of them, but so many others, all pointing to “incompatible with life”.  I tried to ask what either of those diagnoses were, I had never heard of either in my life, but he just wouldn’t calm down enough to hear or answer.  He did say how unfortunate it was that I was already at 29 weeks, if we would have caught this at the 18 week ultrasound there would have been a few more choices available to me, but as late as it was, my choices were greatly limited.  He insisted, again, that we needed an amnio.  I asked him when he would think it would be a good time to do one and he, excitedly said “today!  This afternoon!  NOW!” I asked about the risks of the procedure (there are always risks, don’t let them tell you there aren’t) and he said that while there was a risk of premature labor and delivery, we would at least have information available to us.

Information.

I asked him, “what is to be gained by doing an amnio today?” and his only answer was “information.  For delivery”

I pushed it further at that point (because, Oh. HELL no.) and asked, “Are you certain there is something wrong with my baby??”

“yes.”

“So you know there is something wrong with my baby and you want me to risk premature delivery, which will further complicate anything that might already be going on, so you can have INFORMATION??????”  I was going to have none of that.  Leave my baby alone.  If there was something wrong and she was okay right now, just leave her alone.  Go. Away.  He asked if I was refusing the immediate amnio and I replied that yes, I was in fact, refusing it.  That’s when he just said “Okay.  Sounds good.  We’re not sure which diagnosis it is.  BOTH are serious, we hope it’s a cyst and NOT CDH.  Pray it’s not CDH.  We’ll do another ultrasound in three weeks and check again for a clearer picture and hopefully by then we’ll be able to see what it is.”

And then he left.  Just like that.  Just walked out the door.

“I think your baby might die.  See you later”

I just stared at the tech.  Blinking.  She asked if I had any questions and I said “I don’t know.  I don’t think so, I, I, I ummmm, what did he say it might be?  Can you write it down?  I don’t know…”  She kindly wrote down the two diagnoses on a yellow post it note and walked me to the check out desk.  She let me know that the patient coordinator will be calling soon to coordinate the rest of our doctor appointments.  She asked if I was okay (ummmm, NO!) and then walked away.  I checked out in a daze and managed to get my son and myself to the valet parking to pick up our van.  I just sat there, waiting for our vehicle, absently rubbing my swollen belly, my mind racing with the possibilites and problems that we might be facing.  I might never get to hold my little girl that I had prayed so hard for, and looked so forward to meeting.  My arms could well be empty.  It was just a nothing, routine scan.

A life-changing, routine scan.

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