The Whole Story

Let me preface this post by saying that after a day or two in the hospital, especially in the PICU, days began to blend together.  I am trying to remember things as they happened and even though it's only been a month, my brain has literally turned to mush.

Let me also say, this has a lot of details of her last hours that may be difficult for some.  I am writing it out, so it is not forgotten.

Have tissues at hand.

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There are moments where I can't erase the last pictures I have of you - those in the hospital - from my mind.  They are painful and they are real.

I so desperately want those last pictures that are to remain in my head to be those of Easter.  Your playful spirit bouncing...the light in your blue eyes.  But, even those are painful knowing that a week later I rushed you to the hospital, only to have you flown from one hospital to the next.

I had taken you to your 4 year old well child exam on April 24th.  You had been running a fever...again.  After learning what an otherwise healthy and smart little girl you were, and me telling the doctor that you were feverish, they took one last temperature and sure enough, it was 101.9.  The doctor felt as though it was something viral since you had just finished an antibiotic for strep throat the day before.  I was told to alternate between tylenol and ibuprofen every 4 hours.

That evening, I drove your oldest sister down to the children's hospital.  I kept tabs on you while you were home with dad.  I kept asking if he was alternating meds.

On Sunday, the 27th of April, Ena flew in to help momma out with you girls while I finished out the school year.  I took her back to the hospital to wait for your sister to be discharged.  We drove up the hill to have dinner with Jay and I grabbed a few groceries.  Dad had asked if I'd grab pedialyte, so I grabbed some Gatorade knowing you wouldn't drink the other and a few other essentials at the store.

When I pulled in, I pulled everything into the house.  I took one look at you and thought, "We need to go!"  You were unresponsive on the couch with a glass of juice gripped in your hand.  I pulled the glass out of your hand and set it on the coffee table.  Your eyes just opened in slits and rolled back into your head.  I didn't receive my typical greeting..."Momma!"

I picked you up and carried you to my bedroom so I could put clean jammies on you.  You had spilled some juice on yourself.  I put a coat on you and ran out the door.  You were limp, just like a rag doll.  I tried the health care center, but they had closed early.  So I immediately got onto the interstate to get to the hospital.  I called Jay in tears asking him to meet me at the ER.

When I got there, they put bracelets on both of us and took us right back.  They weighed you, took your temperature, and checked your oxygen levels.  They immediately put oxygen on you.  All the while, you were just limp.  Jay came in and they took us into a room.  They pulled your jammies and as we took off your underwear, we noticed that you had soiled them.  We cleaned you up and they put a diaper on you.  You were breathing so quickly, it was almost as if you were panting.  They started an iv.  You started to perk up a little.  "I want my mimi (the word you used for blanket)."  I brought it over to you.  You fought the oxygen and Jay kept it over your nose and mouth.

"I want my mommy."  I was happy to comply.  More snuggling.

They noticed blood around your mouth but they weren't sure what it was from.  They took an x-ray of your lungs.  The right lung had a lot of white to it, meaning it was full of infection.

The doctor came in and told us that she needed to intubate and do it quickly.  She was also going to start a femoral line in your leg.  They moved you into another room.  They pulled a chair over in front of the door-they told me they were going to fly you to the children's hospital.

I sat there and cried as this team worked on you.  Jay stood next to me, pulling me into him as he cried too.  I explained to the case worker that I had just come back from that hospital.  Jay decided that he would drive me in my car back down.  The case worker did whatever she could for us including a blanket for the car.

We followed you to the elevator for the helicopter.  I had given them my cell phone number so that they could call me when they got you there.  I kissed you and told you that I loved you.

I fought sleep all the way down.  I knew how to get to the hospital-Jay did not.  As time passed, I started to worry that the Mercy Flight team had not yet called.  Just as we were about to pull into Phoenix, the crew member called.  She was okay-critical, but there.

You were placed in the PICU.  I knew where to park and how to enter through the ER since I had done it just mere days before with your sister.  We headed up and they were still working on you.  They took us into a "conference" room to wait.  Jay stretched out on the floor and fell asleep.  I fell asleep with my head on the table.

The doctor finally came in and it all was just a blur.  Testing was done, cultures and blood tests.  It'll be a couple of days...  They felt as though you had had a hemorrhage in/around your lung.  You were running a fever.

Later that day, they placed a chest tube.  The tube was meant to help drain any fluid that was around the lung.  They also had a tube down your nose to keep stuff out of your stomach.  You were quite the sight!  The highlight of my first day was you squeezing my fingers.  It sure warms a momma's heart.

The next couple of days were fairly uneventful.  It was a series of tweaking your meds; what was a good way to keep you sedated and comfortable?  As they rolled you from your left side, to your back and to the right side...you'd cough around the breathing tube.  I didn't have to look at you to know that you were coughing because the alarm sounded like "Jingle Bells", but I looked at you anyway.  They did have your little wrists restrained so you wouldn't yank anything out.

You were so puffy and they tried to balance that out too.  Diuretics or not.  More fluids or not.  A different type of med.  Or not.

The night of May 1st or 2nd (again forgive me for brain fog), they decided to put in your PICC line.  They needed to pull your other lines because of the possibility of infection.  Sadly, the team that was putting it in, seemed confused.  Jay really looked out for you that night and momma is so thankful he did.  Even while you were sedated, you sat straight up in obvious pain.  The team had to call the nurses to further sedate you.  All the while momma slept and Jay watched over you.

On May 2nd, they fixed your first chest tube and put in another.  They discovered a hole in your right lung which was allowing air to escape into your chest cavity, which then collapsed your lung.  This new chest tube was keeping the air out of your chest cavity.  They were also now seeing "disease" in your left lung too.

On May 3rd, I went down to the 3rd floor to talk to Aunt Cori.  It was an update conversation.  When I got back up to the room, I was immediately greeted by the doctor.  He told me that he felt as though we needed to do a procedure called ECMO for you.  I listened to the doctor, heard the possible complications that included bleeding on the brain, but also heard that things were dire.  If you didn't have this procedure, you would probably die.  He told me that it would pull blood from your body, throw it around in a machine, warm it, oxygenate it, and put it back into your body (not his exact words, but that's the gist).  All of this to give your lungs a break.  You would still be on the vent, but it would be turned down to the maintenance level.  You would also have a 24/7 ECMO tech.  The doctor said you would be on this machine for the minimum of a week.

After talking it through with me, he talked it over with Jay.  I looked at Jay as if to say, "What do I do?"

So, I had to sign consent for blood, anesthesiologist (who was going to put in a new iv line), the surgical team, etc.  It was going to take some time.  At this point, I was really quite done signing consent for stuff.  Not only was I signing consent for you, but I had signed for consent on things for your sister.

While you were gone, the infectious disease doctor came to talk to me.  He told me that of all the children he'd seen that were put on ECMO, you were the best candidate he had ever seen.  All of your other organs looked great.  This machine was just for your poor little lungs.

You came back; huge machine, extra person in the room, lots of checking.  They checked your pupils, rolled you, etc.

After 24 hours on the machine, your numbers had started to improve.  You were weaned down to the maintenance level on the vent and seemed to be doing well.

Aunt Cori and your cousin Eleisha flew in on Monday, May 5th.  Jay and I got the opportunity to go out to lunch with a gal from my old church.  She had brought me some comforts from home.  Then we picked up Aunt Cori from the airport.  She came back to the hospital and she loved on you.

Just that day, they had increased your feeding tube feeds and all of your numbers looked really good.  Jay decided to head back home to work for a few days and my friend was going to drive him back.  Aunt Cori was picked up at the hospital, but she took a few minutes before leaving to read "Goodnight Moon" to you and stroke your piggy tails that our night nurse Nicole had lovingly put in.  I willed you to wake up and say, "Where's the mouse?"

So, I snuggled down.  They were fiddling with the blood thinner, but other than that, a quiet night.  When I think back, "Jingle Bells" wasn't happening as much that night; you weren't coughing around the tube.  I watched an episode of "Once Upon A Time".  I made up the couch all comfy like.  I covered my eyes and fell asleep quickly.

It was the calm before the storm.

At around 12:30am, the PA that was on with the doctor, came over and poked me, "Mom!  Mom!"  If you are like me, you wake up more easily if your own kids are saying "mom" not some strange person.  As I came around, the doctor came over and said (as best I remember), "We believe Cora has a bleed on her brain.  Her pupils are not responding and she is no longer coughing."  I responded with, "What does that mean?"  "If she has bleeding on the brain, there is nothing more we can do.  We're going to take her down for a CT scan."

It was a flurry of activity, multiple nurses detaching meds you didn't need so they could fit everything into the elevator.  The night nurse continually checking your pupils and was calling out your name.  After they wheeled you out, I called Jay in tears.  It was well after 1 by now.  He kept saying that he shouldn't have left us.  He said he'd had a bad feeling about leaving us when he did.  He tried to get me to find the chapel, but I was afraid I wouldn't be there when you got back.  I saw them coming with you and I told Jay I had to go.

I knew by the way they walked, bringing you back, extra slow, that there was a bleed.  Even before they wheeled you back into the room, I was begging God to take me instead.  Life seemed to stop right then.

The doctor confirmed what I already knew.  There was a bleed on both sides of the brain, one more severe than the other.  I begged him, isn't there something that can be done?  "No.  We can keep the machine on until you can get family here."

I called Jay back.  I called dad.  I tried calling Aunt Cori and my friend Sharon.  I continued to beg to keep you-my precious baby.  I called Miss Nekol, Aunt Jessica, and Miss Meagan.  I woke them all up to talk to me.  Miss Katie called me.  I cried.  They cried.  A lot.

So...I waited.  Aunt Cori finally got word and she was coming.  Jay and dad were on their way down.  Sharon was driving in from a couple of hours away.  I sat on the foot stool and stroked your hand, telling you just how much I loved you.  Or I stood and stroked your hair.  I had some ounce of hope that you could still hear me.  You looked so peaceful, but your little tongue was sticking out from your mouth...an image I won't erase.

I was receiving texts and calls.  Aunt Cori came in, then Sharon, Jay and dad.  Dad seemed ready, but I wasn't.  The doctor and nurses moved things *and you* just enough so that I could lay with you on the bed.  I snuggled up as best I could with all the wires and tubes with you-your warm little body-my baby girl.  I wished to see your blue eyes again-just once.  Sit up and argue with me.  Tell me, "Momma, I love you.  Can I give you a hug?"

I supposed that I was ready.  Is anyone ever ready to turn machines off and watch their 4 year old slip from this life?  They removed as much as they could, so I could see your precious face.  I laid there with my hand on your chest, feeling your heart beat beneath it.  Jay asked the doctors to silence the alarms.  And so we waited...me sobbing while my hand was on your chest.  Jay stood up by our heads.  I kept whispering, "Go to Jesus", but inside I was selfishly wishing you'd stay with me.

There were a couple of moments when I thought your heart had stopped, but I carefully repositioned my hand and there it was.  It eventually slowed-the whole process seemed like only minutes.  And then I felt it...nothing.  I looked at Jay and shook my head 'no.' crying - repositioning my hand to try and find it, but there was nothing.  I laid there with my hand on your chest waiting for the doctor to call the time.

After I was out of the bed, I continued to stroke your head.  Decisions still needed to be made.  Autopsy or not?  Did dad and I want a hand or foot print cast?  Dad chose a foot; I chose your right hand because you sucked your right thumb.  Did we want a lock of your hair?  They took ink hand/foot prints too.  Did we want to give you one last bath?  Did we want your mimi to go with you?  *That was a resounding NO from me.  For as much as it brought comfort to you, it has brought an equal amount of comfort to your momma."

At some point, in my cold, exhausted and grief stricken state, I laid down on the couch and fell asleep while all of the little things happened.  Aunt Cori helped to give you a bath.  When all was done, the room was so quiet compared to just days before.  The shift change happened and I got hugs from the doctor and nurse who would have cared for you that day.  Through everything, the doctors and nurses were top notch.  I never doubted your care for a moment.

Numbly, I gathered everything in the room up, trying not to look at you because you weren't there anymore, at least not spiritually.  We got everything out to the cars.  Sharon had me eat.  Jay brought me coffee.  Aunt Cori drove and I thought surely I would sleep, but I didn't.  We met up with Jay at a rest stop and he followed us home.

I spent a lot of time on the couch that day, holding your mimi, loving on your sisters.  I called my doctor's office and begged for something to help me sleep.  After taking one pill and drifting off to sleep, dad woke me up and when I looked around, I had to ask where I was.  I still felt as though I was at the hospital.  I even thought I saw your monitors.

Whether it was Wednesday or Thursday afternoon, I spent that time with Jay getting arrangements made.  Dad seemed out of sorts, so I grabbed the dress that you wore for Easter, your white tights with pink hearts on them, some underwear, and your dress shoes.  I picked a pink, fluffy casket as it seemed fitting for you.  Once we seemed to have things figured out at the mortuary, we headed to the church.  From there, we headed to the cemetery.  We asked to see the children's section first.  The man showed us the section and I asked which plots were available.  He showed us three.  When he showed us the third one, Jay and I looked at each other and without question or comment to each other, looked back at the man and told him the last one.  Then from there, it was a matter of details, figuring out the hymns for the service, scriptures, etc.

The one thing that seemed difficult was writing an obituary for the newspaper.  I had never written one before.  Period.  Let alone having to write one for your own precious 4 year old.  I sat at the computer a lot, staring at the monitor.  I would write some and then read it to Ena and Aunt Cori.

When I dropped the obituary off, the funeral director mentioned that you were a beautiful little girl.  That you were.  No doubt.

The services were held on Monday, May 12th.  We had friends and family who came from all over.  My boss was even able to get the preschool closed for the day so my co-workers could be there with me.  Again, much of it was a blur.  Jay had a quiet presence that day, but his love for you was so evident.

There are parts to this story that I am choosing to leave out, mainly because I want to remember the good over the bad.

It has been a month since you went to be with Jesus and I miss you just as much today as I did a month  ago.  The outpouring of love and support in the last month plus has been beyond overwhelming.  We are thankful for it all.

Now as we go from now into month 2, 3, 4 and beyond, I'm not really sure what to expect.  What I do know, is that you are missed by many - more than just family.

I will love you for always sweet Coraline...always.

Pennies From Heaven

There it was just laying there

shining in the light.

I bent to pick it up

the tears were coming

I just didn't care.

The light that danced around

was like bits of your spirit

effortless and free

with love enough to abound.

Your sisters and I

stood quiet and alone before you

a handful of pennies

to tuck within

as you prepared to fly.

So as we go from day to day

we look carefully

for evidence of you

a penny for us to see,

knowing you're saying "hey!"

You were a gift from above

and the pennies remind me

that while I had you for a short time,

I was there to send you into heaven

with a heavy heart and an armful of love.

© Written by:  Kati Iannello (mom)

May 31, 2014

Ten Tips For Parents (Grandparents)

I've been thinking over these past nearly 5 years *I'm including 9 months of baby baking*.  I've been mulling things over and over in my mind.  I guess when you lose a child, you have a lot of things you may wish you had done differently.  So here is a list of things to do now.  Don't put them off.

1. Take pictures.  Lots of them.  Don't be afraid to be in pictures with your kids.  I have terrible self-image and while I hate seeing myself in pictures, being in pictures with my girls has been a wonderful gift to me.

   

   Last picture of all of us girls.  Easter~4/20/14

   
   
2. If you have the capability...take videos.  As many as you can.  I'm cherishing the ones I have and wishing that I had more.  I love her little voice.  I miss hearing her.  A lot.

  

 

     3.  Regardless of how your day has been, always tell them that you love them.  Daily.  Even multiple times a day.

     4.  Love on your kids.  Seriously.  Hug them.  Kiss them.  This goes hand in hand with #3.  I have to say that my 11 year old still will hug and kiss me in front of her classmates.  But, you didn't hear that from me.  Maybe there will come a time when she won't, so for now...I'll take what I can get.

My last full body snuggle caught on camera.  4/24/14

     5.  Document parts of your children's lives.  The first time they roll over.  Sit up.  Crawl.  Pop a tooth.  Laugh.  Even if you put it in a notebook...do it!  This can also piggy back with picture taking, videos, loving on them...all of it!

     6.  Do stuff with your children.  Am I saying to spend money like a crazy person?  Nope.  Simple stuff like taking your kids to the playground, going for a walk, riding bikes together, drawing together, coloring together...whatever you are willing to do...DO IT!  Also?  This ties into most of the other stuff too.

     7.  Study your child.  Know what they look like.  Do they have birth marks?  Other noticeable characteristics or features?  Cora had some for sure.

Angel kisses and stork bites.  She's my baby!

     8.  Talk to your children.  Depending on how old they are, children crave time with their parents, when you are able to talk to them one-on-one.  They learn from you.  Just before Cora passed away, I had been working with her on L words.  Words like:  lap, lip, like, etc.  They would come out:  wap, wip, wike, etc.  I'd tease her because she'd come over to me and say, "Momma, I want to get in your wap."  I'd say to her, "You want a wap?"  Then I'd tap her on the forehead.  You know?  Wap?

     9.  Your children don't love you with conditions, so don't love your children conditionally.  Love them unconditionally.  If their needs are met...they will love you no matter what.

     10.  Learn to say 'yes' once in a while.  If you're anything like me, I am saying "no" to a lot of things.  Can I stay up late?  No.  Can I have a cookie?  No.  You get the idea.  There are things that you can say no to and need to be a solid NO, but there are some...that could potentially be a yes.

Why am I writing these?  Maybe out of guilt that I didn't do some of these more.  Maybe because I miss Cora a lot.  Maybe because I know some people that really could hear these words and benefit.  Maybe because you just never know if today will be your last with your children.  Whatever the case may be, love with all of who you are.  Love without ceasing.

Loving You -- Part 1

Do you know how much I have loved you?  The joy of feeling you move in my belly, the squirming you did--the elbows, feet and hands pushing all over as you grew inside.  I lived to see you on the ultrasound machine.  The flicker of your heart beating was a joy, while the sickness seemed to consume me.

You came into this life perfect and pink at exactly 12pm.  My high noon baby.  Ten toes, ten fingers, blonde hair and blue eyes.  More than that, if you had been mixed up with another baby, I would have known...the angel kisses that touched just above your eyes and across your nose, as well as the stork that had left its bite mark at the nape of your neck, were tell-tale signs that you were in fact my baby.

You were an easy going baby.  Feed me, change me, keep me warm, and snuggle me...often.  And that, I could do.

Once you could walk and talk, you became 'little miss independent'.  You wanted to do everything your big sisters were doing, even more so after you turned two.  The words "I do it" were often part of your daily conversation.

Indescribable Pain

I have decided that there is no pain greater than losing a child.  I'd go through hyperemesis a thousand times over...do the PICC line over and over again...do a c-section over again with the accompanying bruising if I could just have one more day with her.  Hear her tell me that she loves me, wants to hug me spontaneously, and shadow me around the house.

My head knows that she's gone.  My heart does not.

I know she's gone.  I was there when she slipped from this life. 

Each day is new.  I am constantly going to look for her because it's just too quiet.  I'm wondering what she'll eat, what she'll wear, and what the next argument might entail.

I miss her little blue eyes...her sandy blonde hair...her attitude.

I miss her snuggles.

I miss her voice.

And I know I'm selfish, because I want her here...not to be in pain or to suffer, but because I miss her so.

My friends, I am in a great storm.  I have been swept up into it.  I smile and I laugh on the outside, but on the inside I'm crying.

Children are a gift.  And while I know there have been times where my children have driven me to the point of distraction...they have been my greatest joy...my greatest love.

Pouring Out My Heart

I wrote this particular 'heart pouring' nearly 6 years ago.  It was written: April 20, 2008.  I hope that as you read these words, you can hear my heart and the hurt that has been hidden from the 'public' for so long.  It may be TMI, but read on if you're not afraid.

What would you do if you felt no love?  What would you do if you felt like you couldn't talk intimately with the one who is to be the love of your life?  What would you do if you felt like your love's most desired interest was not in you, but in something else?  What would you do if every night you crawled into bed wondering, "Could this be the night?"  What would you do if you went to bed every night longing to be held, but never were?  What would you do if every time these issues were addressed, your love got mad, ignored you, or got frustrated with you?  What would you do if you felt like this was a real issue that happens more often than not?  What would you do if you were someone who lived far away from family and the only loving, family type affection is expected from your love, but they don't give it to you?  What would you do if you felt like your heart was breaking?  What would you do if you felt like there is no one to listen to you?

Darkest Moments

I'm not sure how to word this post.  I do know that I need to write it.  This year, having started out decent, has since been a series of difficult moments.

My job, while hard on some days, brings great joy.  I love how quickly I've seen some of the kids change.  Speaking, thinking, playing...all of it growing in these children.  And me...I'm just facilitating their journey.

My own children are much the same.  I find that my job has fostered a better understanding and way of helping them at home.  My littlest is making connections and figuring things out that she couldn't before.  I realize what a precious gift they are to me.

In the midst of this, I have been somewhere in a deep, dark hole.  And while I climb a little bit out, I slide back in...often further down than I had gotten out, if that makes any sense. 

I can't explain to anyone, the amount of hurt that I've experienced this year or that I continue to feel.  Words often don't seem to be enough.  And when there aren't words, there are tears.  And tears, can't explain anything either.  While I wouldn't wish to walk in anyone else's shoes, I often wish I wasn't in my own.

I always have said that I'd never allow the 'what if' monster to run my life, but it has certainly come to that.  I've asked a lot of 'what if' questions of myself as of late.  I often look at myself in the mirror and wonder who I really am.  I'm not recognizing the person that I see reflected in the mirror.  I question my heart; I question my faith in myself, faith in relationships, and faith in God.

I've always been deemed 'the strong one', but, I'm not.  I'm tired.  I'm broken.  And, I'm sad.