The Day She Died, Part 2

Soon after 2:15am, the nurse who'd been with me all night washed Elliana's hair and put her in one of the infant gowns we'd brought to the hospital.  We wrapped her up in the blanket Beth had given her on the day we got the 'it's a girl' news.  And we put the hat on her that Beth's 8-year-old daughter had knitted, just for Elliana.

Everyone talked so quietly.  Everyone whispered.  After 2:15, everyone whispered.

One of my sisters arrived shortly after 2:15.  She got to hold Elliana for a little while.  And cry with me.

Then everyone left, and it was dark and quiet.

They told us that we could keep Elliana with us as long as we wanted to.  They said that even if we sent her to the morgue, we could get her back if we wanted to.

Was this really happening? 

Jason and I tried to sleep.  Elliana laid on my chest.

I kept dozing off, but I couldn't fall into a deep sleep.  I kept waking up, startled.  It felt like I couldn't breathe.  I wanted to sleep so badly.  I was so tired.  But it almost felt like every time I fell asleep, I stopped breathing.

I called the nurse once - sometime in the very early hours of the morning - to tell her that I couldn't sleep, and I was so tired.  I don't remember what she said.  But it didn't help, anyway.

I do remember that a couple hours later, the nurse came in and put an oxygen mask on my face.  I remember her saying that every time I fell asleep, my oxygen was dropping.

Part of me wanted to scream, 'WASN'T I JUST TELLING YOU THAT?'  And part of me just didn't care.  I wore the oxygen mask.

Maybe I was just waiting for Elliana to move?  When you have a newborn sleeping on or beside you, you just 'know' that the baby is there - even when you're asleep.  And when they move or squirm, it's like a signal that they're ready to nurse.  I knew she was gone.  But maybe having her there with me - feeling her weight on my chest - maybe I just couldn't fall asleep, or even breathe, because I was 'waiting' for her to move?

Sometime on that Saturday morning, some friends came to see us.  I remember that the room was so dark.  It was dark outside - so cloudy.  I remember S coming and sitting beside me.  I remember K talking with Jason.

Then more quiet.  More silence.  No baby crying.

Every time the nurse came in, she spoke so quietly.

Jason and I tried to talk about when to have Funeral Home Man come.  But I couldn't pick a time.  I couldn't decide when to hand my baby over to a strange man and never hold her again.

I think sometime later in the morning, I knew that more family was coming.  We knew that they were going to bring Elijah.  We weren't sure if it was a good idea for Elijah to see Elliana or not.  Her color was so... not alive.  We didn't know if it would 'help' Elijah to see his little sister like that.  So we thought we'd let him decide.

Shortly before family arrived, the nurse took Elliana in her bassinet (which she may have only laid in that one time) out to the nurse's station - just for the period of time that Elijah and other family members came.

We just weren't sure.  Would it be 'good' for Elijah to see and have the opportunity to hold his dead sister?  Would family members want to see and/or hold a dead baby?  It was so awful, and so morbid, to think about.

But... it was awful.  And it was morbid.  And we had to think about it.

Elijah came in first by himself.  He brought several of Elliana's things - things that had been gifts for her.  A blanket, a little elephant with a purple ribbon on its ear.  He asked where Elliana was and we explained.  We asked if he'd like to see her or hold her.  He said he'd rather not.  And that was ok - I did NOT want to pressure my 10-year-old to do something he wasn't comfortable with.

My brother and sister-in-law came in.  They did want to see her and hold her.  I was glad for that.  :-)  And I was so comforted by their tears - which just sounds weird.

And then my sisters came in.  And they wanted to see her and hold her.  And they cried with me.  I think they started asking me about what we wanted her to be buried in.  Or maybe that was Sunday.  I can't remember which day.  They did go shopping - it must have been Saturday when they tried to find an outfit for her.

We were talking about what to bury her in.  New mommies and daddies don't do that.  Aunties don't do that.

Think this post will have to be in three parts.

The Day She Died

I've been hesitant to write about this day.  Publicly, anyway.  It was a dark day - emotionally, mentally, physically - even outside, it was a dark, cloudy day.

Not that 'dark' is really anything new here on my blog.  ;-)  But that day, October 6, 2012, was particularly dark.

She was born at 10:56pm Friday night, October 5.  All efforts to revive her stopped around 11:20pm.  I didn't know it at the time, but as soon as the 'cease efforts' decision was made, my doctor sent someone to get our photographer, Beth.  We'd been told that no one would be allowed in the OR.  But my doctor gave us a beautiful gift - pictures of our first few minutes with Elliana.

I don't know exactly what time surgery was over.  I do know that the end of that surgery was really hard - physically.  I think we left the OR sometime around midnight.  As I was being wheeled out into recovery, Jason carried Elliana.  I couldn't see them for a minute, and I panicked.  Everyone was quick to reassure me that Jason was holding her, and that they were right behind me.

I don't think I got to see my mom hold Elliana for the first time.  But I have pictures of that moment.

I am so thankful for the pictures.

**I don't like telling this like a 'story'.  I don't know why.  I just don't.  So... I think I just need to write what I remember.

I remember what she felt like laying on my chest.

I remember Beth taking pictures - she was so discreet.  But I knew she was there.

I remember Jeremy and Gina standing beside the bed.

I remember wanting Gina and Beth to hold her.  It was so important to me that other people got to hold her.  See her.  Feel her weight.  Because up until that night, I had been the only one who had ever 'held' her, so to speak, in utero.

I remember such heaviness - in my heart, on my chest, on Jason's face.

I remember my mom asking Jeremy if he would pray as Elliana went from her brief life here into eternity.

And I remember Jeremy praying.

I remember the nurse coming over and listening to Elliana's heart - checking to see if she still had a heartbeat.

I remember that my dad and one of my sisters were on their way.  I remember that my dad was going to get to the hospital around 2am.

Around 1:30am, the nurse came over to me, indicating that she wanted to listen to Elliana's heart again. I asked if she would please wait until after my dad got there - because I wanted him to hold her before she was gone.

I don't remember getting from recovery to my room.  I don't remember where Elliana was - if she was still with me, or if Jason carried her.

I do remember that when we got to the room, I thought:  This is not where the new mommies go.  This isn't right.  This isn't the hall for new mommies. 

I remember nurses trying to get me settled.  And all I wanted to do was just be with my baby.

I remember my dad arriving.  He held Elliana.  And I have sweet pictures of that, too.

This is my favorite one of my parents - 'Mimi' and 'Granddaddy' - with their 14th grandchild.  :-)

And after my dad held her for a few minutes, I remember him giving her back to us.  

And I remember looking at the nurse with tears in my eyes, and telling her that if she needed to listen to Elliana's heart again, it was ok for her to do it.

She listened.  Then she looked at me.  Then she looked at the clock.  It was 2:15am. 

Think I might need to finish this post tomorrow.  Can't do anymore tonight.

The Day She was Born

The first half of that day had been somewhat normal.  Well, the 'normal-while-I'm-in-the-hospital' kind of normal.  Drop-ins from the nurses, Elliana's heartbeat in the background, visiting with friends.  All was well.  I had finally resigned myself to being in the hospital until 34 weeks, which was only 2 weeks and 2 days away.  I wasn't excited about it, but I knew it was necessary.  And I was OK with it.

I hadn't slept well the night before.  I'd been awake for at least a couple hours.  I remember giving up on trying to go back to sleep and just watching the last couple episodes of Downton Abbey, Season 1.  So after a morning full of visitors, nurses, and vitals, I think I fell asleep.  Around lunchtime - I fell asleep for a little while.

The day before (Thursday, October 4) one of my new friends (my favorite ultrasound tech, 'A'), came up to ask me when I'd like to have my ultrasound on Friday.  She gave me two options - first thing in the morning with some other tech, or 2:00 in the afternoon with her and the leftovers from their Breast Cancer Awareness bake sale.  It was kind of a no-brainer.  I picked 2:00 with her and the goodies.  :-)

Shortly before 2 on Friday, my nurse came and unplugged me from the monitors, put me in a wheelchair, and wheeled me to what would be my final ultrasound.  Had I known what would happen later in the day, I would have asked my morning visitors to stay and watch Elliana's last 'dance recital' - a phrase coined by my dad.

The ultrasound showed increased amniotic fluid - she had quite the swimming pool in there.  A friend came during the ultrasound, and she ooh'ed and aah'ed over my little girl, making me quite the proud mama.  When the doctor came in, I asked her one of my most difficult questions - would she please help me be able to picture what her lip was going to look like?  I didn't want to be shocked when I saw her for the first time.  The doctor explained as best she could.

My friend had brought chips, salsa and cheese dip to share with me.  Once back in my room, I asked my nurse if I could be free from the chains of the monitors for just a little longer so I could enjoy my chips from the couch instead of the bed.  She agreed. 

Now I wonder if... well, there are so many 'maybe I should have's.' 

The nurse finally 'nudged' me back into bed and hooked me up to the monitors.  I remember hearing Elliana's heartbeat in the background.  I can't remember at what point my friend left, but I do remember that once things got scary, I was alone.  I think it was around 4:30.  I remember the nurses coming in with their all-business faces on and studying the screen carefully.  I remember them telling me to roll over to one side to see if that made Elliana happier. 

After her heart rate dropped 4 or 5 times within a 45-minute period, they called the doctor.  The doctor came rather quickly (which, in itself, was scary), and started talking about how we may need to go ahead and deliver her.  I remember her saying that there was really not much they could do for her while she was still 'in', but there was a lot they could do for her once she was 'out'.  And if she was struggling, she would be better off being delivered. 

By that point, I was an absolute mess.  The nurses made phone calls for me - I was afraid if I tried to talk to Jason on the phone, I would cry through the entire conversation and really freak him out.  But I might as well have called him - he was so panicked when he arrived, afraid they were taking me to surgery at that very moment and that he was going to miss her birth. 

But things had calmed down by the time he and my mom arrived.  Elliana's heart rate had been steady for a good while - probably an hour.  I began to think... Things might be ok now.  Maybe we just had a little scare.  She's going to be fine.

Jeremy and Gina came by.  Beth came with her camera, since we'd had the scare a little earlier.  We spent the next couple of hours together, watching the monitor and trying to distract each other with conversation.  I think Jeremy and Gina left for a little while - they were celebrating their anniversary.  The nursing shift changed, and I was NOT happy about that.  My two favorite nurse/friends were going to be off for the weekend, and I didn't know the nurse who was taking over. 

Alarm bells went off sort of subconsciously in my head when my nurse/friend handed the baton to the night shift nurse and said to me, 'You are her only patient tonight.  Her only job tonight is watching you and the baby.'  That brought me comfort.  But it scared the hell out of me, too.

I can't remember exact times, and as vivid as so many of my memories are, I'm afraid that I remember things wrong.  But as best I recall...

At about 9 or 9:30, these were the people in my room:  Jason, my mom, Jeremy & Gina, and Beth.  The night-shift nurse had been in a couple times to check on me and Elliana.  But the last time I remember her walking into the room, she *walked* into the room.  She went straight for the oxygen mask above my head, tore the plastic off, and put it on my face.  She said Elliana's heart rate had dipped and stayed down for about 90 seconds.

They paged the on-call doctor.  The on-call doctor came and talked with us about going ahead with a delivery.  Elliana was in distress, and she needed help.

I wasn't ready.  I. Was. Not. Ready.  Yes, we'd known for months that she probably wouldn't survive.  Yes, I'd spent hours in front of an ultrasound screen looking at a 'broken' baby, hearing the same 'poor prognosis' over and over again.  But I wasn't ready.  I wasn't ready for her to come that night.

I remember saying a temporary goodbye to my mom, Beth, Jeremy, and Gina.  I knew I'd see them after my surgery - and I hoped it would be under very hopeful circumstances - with a baby in the NICU.

I remember the nurses wheeling my bed down the hall.  I remember going down the Labor & Delivery hallway, hearing another mom in labor.

I remember the big double doors swinging open.  It was quiet.  It was late on a Friday night, so there weren't many people around.  I remember Jason not being with me.  He was getting 'gowned up'.  I remember seeing compassionate looks on everyone's faces.

I remember being wheeled into the OR.  I *think* it was the same OR that Seth had been delivered in.  :-)

I remember the anesthesiologist talking to me.  She was so friendly.  So kind.  So reassuring.

I remember the flurry of activity.  The movement around the room.

I remember the anesthesiologist telling me about the drugs she was going to give me.  I remember telling her that I wanted to be completely alert the entire time.  I remember telling her that I didn't want her to give me anything that would make me drowsy.

I *don't* remember the spinal.  Or maybe I remember bits and pieces.  It's strange.

I remember Jason coming into the room in his cap and gown.  I remember him sitting beside me.  Close to my head.

I remember the drape in front of me - I couldn't see my tummy anymore.

I remember the doctor coming in.  And one of the nurse-midwives who was there to assist.  I remember the doctor doing lots of 'testing' on my tummy.  Poking in different places, asking if I could feel pain or pressure.  I remember it taking a while before I didn't feel pain anymore.

I remember shivering.  I couldn't stop.  I think I remember that it had to do with the anesthesia.  I couldn't stop shivering.  And I really wanted to stop shivering.

I remember the doctor starting the surgery.  I could feel a lot.  A whole lot more than I had during my 2 previous c-sections.  I didn't feel pain, but I felt a lot.  I'm not sure if that was because I'd asked for 'less' drugs, or if it was just this particular experience.  Or maybe I was just more acutely aware.  I don't know.

I remember the moment she was born.  10:56pm on October 5, 2012.  I remember the anesthesiologist telling me (rather excitedly) that she had SO MUCH blond hair.

I remember Jason saying something like, 'Did you hear that?  I heard her cry.'

I remember that I didn't hear her cry.

I remember Jason walking over to where she was.  He didn't stay there long.  I think the doctor asked him to step away for a little while so they could work on her.

I remember Jason coming back over to where I was and showing me a picture that he had taken of her. That picture of her - that one - is the only memory I have of her looking strong.

I remember waiting.  And waiting.

And then, I remember the NICU doctor coming over to us and telling us what she'd tried.  And how it wasn't working.

I remember asking her to please try one more time.  I remember starting to panic.  I remember crying.  I remember praying.

And then, I remember a brief moment of relief - when the doctor told us that she'd been able to intubate Elliana.  But the relief only lasted a second.  I remember the doctor telling us that even after getting the tube down, Elliana's heart rate kept dropping.

I remember her saying that she felt like she'd done everything she could.  She said that the next step would be CPR, and she really believed that Elliana's suffering would only be prolonged if she continued her efforts.

I remember crying and nodding my head to indicate that it was ok for the doctor to cease her efforts to revive Elliana.

I remember the doctor asking us if we'd like to hold Elliana.

I remember Jason bringing her over to me.  Seeing her face for the first time.  Seeing all of her beautiful hair.  I fell more deeply in love with her.

I remember them unwrapping her and laying her, skin to skin, on my chest.  It wasn't until a couple of days later that a nurse told me this:  as soon as they laid her down on me, she pinked up.

But I couldn't see her.  I wanted to see her.  So I tried to move her so that she was more on my shoulder.  And now I wonder... I hate wondering... should I have let her stay on my chest longer?  Would she have been warmer for longer?

I remember hearing her try to take a breath.

I am so thankful to have heard her take a few breaths.

And I am so thankful that I got to kiss that sweet little head, and feel her hair under my fingers, and gaze upon her little face - 'broken' lip and all.

Maria and Jaxon

My friend had her baby.  And, 10 days later, he’s still breathing.  :-)

My friend, Maria, has so sweetly given me permission to write about her and her baby boy, Jaxon.

I’ve written about how Jaxon was given a poor prognosis before he was born.  What I haven’t said is that he was diagnosed with Tetrasomy 9p.  The same genetic disorder that my Elliana had.

Maria had her c-section on Monday, September 23.  And Jaxon was born alive.  Breathing on his own.  Not in distress.

He lived.

I’m not sure how long they were in the hospital, but I know that they’re home now.  I think the doctors sent him home expecting that he won’t live for very long.  So my friend, Maria, is mommying him for as long as she has him.

And I hope that that’s very long time. 

Maria and I talked on the phone for a little while last night.  I wish we lived closer.  I wish I could meet this new mom and this little boy.  I wish I could hug them both.

But oh, this just hurts so much.  I do love this little boy, Jaxon, so dearly.  I’ve never met him, but he has a connection to my little girl.  And I want him to survive.  I want him to live. 

And at the same time, I miss my little girl so much.  SO. MUCH.

Please pray for this little boy as you think of him.  I don't want his mom to have to say goodbye to him.

Tomorrow is Elliana's first birthday.  I’ve been trying to think of what to do on her birthday.  I’ve wanted to do something special with the kids.  Levi, in particular, is excited about Elliana’s birthday.  He wants to send her some balloons.  He also wants to send some cake with the balloons.  Not sure how we’re going to manage that one, but we’re definitely gonna try.  :-)

I’ve also wanted to do something meaningful on her birthday.  Something significant.  And I think I finally know what I want to do.

Elliana was born with a broken body.  She died because we live in a fallen world.  A world where there is sickness and brokenness… and death.  I’d like to do something tomorrow to love someone else who is suffering and hurting because of this broken and fallen world.

I think of parents of NICU babies – babies who are sick or ‘broken’.  Babies who may not survive.  And I really want to do something to love one or two of those parents.

So tomorrow, I think Jason and I will do a little shopping.  We’ll put together one or two gift bags for parents of NICU babies in honor of our baby girl’s birthday.  And then we’ll take them to one of the hospitals.  Maybe we'll offer to go and pick up some lunch for these parents.  Not sure if I can do the hospital that Elliana was born in.  Maybe.  If I can’t, we can go to a neighboring town’s NICU.

I know that what these parents really want is for their baby to be healthy.  To live.  I wish I could give them that.  But since I can't, maybe we can meet some of their physical needs?  And love them at the same time?  

That's what I hope to do, anyway.

If you have any suggestions for things to put into a gift bag for parents of NICU babies, feel free to comment below.

I know several people out there love my little girl.  If you’d like to do something to celebrate my baby girl’s first birthday, just go love someone who’s hurting.  Widows, orphans, the poor, the suffering.  Just go and love someone.

At this time one year ago, she was still alive.  She was kicking, and hiccupping, and objecting to monitors.  She and I were together in a hospital bed, entertaining visitors, watching Downton Abbey, and making frequent trips to the bathroom, thanks to all of her dance moves on my bladder.    Her heartbeat was strong.  She was squirming and… living.

October 3

I'm confused.  My memories are so vivid - so specific to days of the week.  Today is Thursday.  *This* Thursday, one year ago, was the night before she was born.  But today is October 3 - which was Wednesday last year.  I still had 48 more hours with her on October 3, 2012.  

You'd think this wouldn't really be a big deal.  But it is.

I think I'll focus on October 3.  Or try to, anyway.

I had an ultrasound on October 3 last year.  It was the first time we got really good 3D pics of Elliana's face.  I can't remember who did my ultrasound that day.  I remember who did it on Monday, October 1 - some girl I'd never met, who didn't know anything about us, who kept asking questions as if we had no clue that there was something wrong with our little girl.  

And I remember who did my ultrasound on Friday, October 5 - the day she was born.  My favorite tech, 'A'.  :-)

But I don't remember who did the ultrasound on Wednesday, October 3.  

I do remember getting lots of ultrasound pictures that day.  :-)

I remember that I finally discovered a sandwich that I liked from the hospital cafeteria.  And I remember the tree outside my window.  I remember watching an episode from season 1 of Downton Abbey.  I remember the nighttime nurse not being nearly as friendly as the daytime nurse (except Ruthe).  I remember chocolate chip pumpkin muffins and peppermint mochas.

I remember what her heartbeat sounded like.

I remember the routine - unplugging 3 monitor cords so I could go to the bathroom.  Throwing the cords over my shoulder, walking to the bathroom (well, waddling to the bathroom), having contractions, walking back to bed, plugging all the cords back in.  Hearing her heartbeat.  Hearing her move.  

She was an active little thing.

And she hated the monitors.  :-)

I remember the visitors I had that night, October 3. 

I remember them taking me on a 'walk' (in a wheelchair) just outside the hospital.  Because I hadn't been outside the hospital in a couple days.

Did I sleep much that night?  I don't remember.

This girl.  This baby girl.  My Elliana.  A friend reminded me recently that she lived.  She breathed.  She thrived when she was connected to me.  Right up until the end.  Which came all too quickly.  

Thanks to some very sweet friends, I have some beautiful yellow flowers sitting on my kitchen counter.  

She had the most beautiful golden hair I have ever seen on a newborn baby. 

Elliana Belle.  Belle means beauty.  She was so beautiful. 

Proud Owner of a Baseball Bat

I am now the proud owner of a baseball bat.  Thanks, B.  :-)

Before band and choir practice, I beat the crap out of one box of empty glass bottles.

After both practices, I beat the &%$! out of two boxes of empty glass bottles.

Throwing empty wine bottles has been really therapeutic.

But... beating an entire box of empty glass bottles with a really heavy metal baseball bat was awesome.

Glass shattered.  It flew everywhere.  It was loud.  And I had to work hard to break all of it.

Think I may go for a run in the morning.  If I can drag myself out of bed early enough, I think I'll go for a run.

Anger management.  It's  all anger management.

October 2

Having a hard day today.

Work kept me somewhat distracted.  I had tasks to do, a co-worker was around - I have a 'boss' to answer to (although it's hard to think of my friend, A, as my 'boss' (-:  ).  Being at work was good.

But thinking about quiet hours during naptime, and then the new-normal Wednesday night activities, and just remembering the first week of October last year - tears feel like they're about to spill over at any moment.

I'm really not sure what choir practice and band practice will look like tonight.  Emotions just feel really raw today.  And I'm not sure that I'll be able to get into choir director mode.  Most Wednesday nights, I think I can manage to be about 80% choir director/20% grieving mom - and that takes effort.  Tonight, it might be more like 40/60.  THAT could be interesting.

How is it that we don't own a baseball bat??