The ride home

I have spent a great deal of my life working to convince myself and the world that I am a strong and capable woman.  “I CAN DO IT” has been my mantra since I was a very small girl.  I didn’t want help and I didn’t want interference.  It’s a thing. I can’t be weak.  It’s a stupid thing, but it’s a thing.

When I got into the van and started pulling away from the hospital where our appointments were, I was shaking, visibly and hard.  I asked my son to sit in the way back.  If I was going to freak out and cry he didn’t need to see it.  I got closer to the street from the parking lot and my mind was racing with what to do next.  Should I call my husband?  Does he need to know now, or should I wait until he gets home from work?  Is this an emergency?  Am I over reacting?  What should I do?  Do I call people?  Who?

By the time I had pulled into the street I realized I could do nothing.  My baby could die.  All I could think was that my baby could die.  I knew nothing else.  Not even the name of this horrible dragon that was attacking my family.  I only knew it was there and it could take my baby.  I started sobbing and turned the corner, the wrong way because I was disoriented.  I couldn’t figure out how to get out of downtown OKC.  I decided to call my husband because I found myself emotionally and physically lost.  I called him and just vomited out the words of what happened.  All of it.  Inbetween sobs.  Then I started to apologize for calling while he was at work, but I didn’t know what else to do, I was so lost I couldn’t find my way back to the highway to get home.

I’ve never been that lost before.  I’ve never not known how to go forward in my life.  Not to that extent.

My amazing husband calmed me down, talked me off of my ledge and walked me through how to get to the highway.  Then he kept me on the phone until I was in the town we live in.  He didn’t want to hang up until he knew I’d be safe and okay.  I hung up with him and called my best friend. I didn’t know what else to do and I didn’t want to be alone with my 11 year old in the van to hear me cry.  She listened as I told her the whole story.  She stopped her day so I could have an ear to listen and promised her prayers when it was time to hang up.  I was nearly home when I called my mom.  I told her what was going on and she promised to pray for our baby girl.  She didn’t know her name, no one did, we’ve not announced names in years.  There was too much drama in name picking so we decided to not announce anything anymore, until it was on the birth certificate.  It was a surpise we kind of liked having.  Anyway, she promised to pray for our little girl and I replied “Her name is Lucy.  Pray for Lucy.”

We had reached the point where surprise was going to help no one.  Suddenly it became very important for everyone I knew to know her name.  If she wasn’t going to live long once she was born we were damn sure going to be calling her by name for as long as we could.

She is my little girl.  Her name is Lucy.

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.

This is where things get complicated.

This is where things get complicated.  I had to break out my calendar to even try to write it out, everything just swims together in my mind, crashing like waves against each other.  I spent a good amount of time not getting emotional about it at all, reactions like that just aren’t something I do often.  I don’t handle other people’s reactions to my reactions very well either, however, just thinking about writing this next bit makes my stomach turn and my eyes leak.  Sometimes Mary Poppins is obvious, you can see the perfection, other times Mary Poppins doesn’t look quite like herself and you’ve got to look hard to see just how perfect imperfection can be.

I took my glucose tolerance test in August.  I failed, again.  It’s a thing.  So, gestational diabetes, again.  I was bummed because it’s a pain in the rear, but I figured I could manage it just fine, I’m a big girl and it’s not gonna kill me.  This is the only complication of pregnancy I ever have, so whatever, it’s all fine.  I started sticking myself several times a day and watching my sugars, impressed with how well I was doing, really.  My next doctor’s appointment was spent discussing management and the upcoming “old lady” ultrasound.  I couldn’t wait to have it again, it’s always such a joy to see the baby in there.  It’s such a great comfort, knowing everything is fine and all is well.

On September 18th I went in for the ultrasound, I just had my 11 yo aspergers son with me, my husband decided not to tag along this time, no biggie, just a routine growth scan, no need to take more time off of work when we were saving up the time for when the baby arrived.  I remember watching the scan on the large TV on the wall and seeing the tech silently measuring her heart over, and over.  I remember a large black mass (it looked, to me, to be the same size as her heart) next to her heart that the tech was also measuring repeatedly.  We talked about how many kids I had, their ages, that this was the first girl in 17 years and how excited we were to meet her soon.  I was 29 weeks pregnant.  We only had 10 or so weeks left and were quite excited about delivery day.  After quite a lot of measurements the ultrasound tech changed out her wand for a 3D wand and looked for, and took several pictures of, the baby’s sweet face.  She had such chubby cheeks and the cutest button nose.  Then, she just got up and walked out.  She said she would be back with the doc in a bit (again, a perinatologist was necessary because I’m old) and left.

She forgot to hand me my pictures.

My son and I sat in the dimly lit room, quietly waiting for the doc to get done with his other patients.  He was working on school work (never stop schooling, right? LOL) and I was busy on my phone.  Fifteen minutes later she came in, flustered about, apologized that the doc was taking so long, and assured me he’d be in soon.  She gave me my pictures after I asked about them, apologizing for being so absent minded.

She kept apologizing.

Fifteen more minutes passed.  I was so ready to go home, the appointment had started late (not uncommon for that clinic, so I was a bit prepared) and instead of a quick in and out we were waiting, and waiting, and waiting.  I was just annoyed that we hadn’t left yet, I had no idea how miniscule that inconvience would feel so very shortly.

Finally another ultrasound tech came in.  She was again apologetic that the doc was taking a bit and glooped up my belly for yet another scan, “just to recheck some things”.  As she was scanning, focusing on our little girl’s heart, the doc came in.  Enthusiastic barely begins to describe this man.  He was like a meterologist on tornado day, he stormed into the room, rushed to the large monitor on the wall and started waving his arms around, very nearly jumping up and down.  “THIS!  THIS!! VISUALIZE THIS!!  WHAT IS THIS????  WHAT ARE WE LOOKING AT???” To say he was alarming is an understatement.  My breath was gone.  He came over to me and asked of the tech, repeatedly, “Orient me, ORIENT ME!!  I can’t tell what I’m looking atthat’stheheart?Whereisthestomach,whatsidearewelookingatORIENT ME!!” He had me roll to one side, jostle my belly, roll to the other side and jostle again, each time hoping for a different view.  Finally he looked at me and said “There is something wrong with your baby.  Her heart is on the right side of her body, there is a huge mass pushing it over, I don’t know what that mass is, it could be two different things:  A bronchogenic cyst or a Congential Diaphragmatic Hernia.  If it’s the hernia there are likely other abnormalities as well and it’s entirely likely that your baby is not compatible with life outside the womb.  We need to do an amnio right now to see what else we’re looking at.  She could die.”