Elijah, 3 (Eagle River, AK) | Down Syndrome, Acute Renal Failure, Disseminated Intravascular Coagulation, Hypotension Shock, Meconium Aspiration Syndrome, Respiratory Failure, Portal Vein Thrombus, Persistent Pulmonary Hypertension, Hypoxic-Ischemic Encephalopathy, Congenital Hypothyroidism

ELIJAH, 3 (Eagle River, AK) | Down Syndrome, Acute Renal Failure, Disseminated Intravascular Coagulation, Hypotension Shock, Meconium Aspiration Syndrome, Respiratory Failure, Portal Vein Thrombus, Persistent Pulmonary Hypertension, Hypoxic-Ischemic Encephalopathy, Congenital Hypothyroidism

written by his mother, Theresa

photographed by Sugar Six Photography 

Elijah was born dead after being at the hospital for only 15 minutes.

We almost stopped at the mall on the way to the hospital.  

When we arrived at the hospital I sent my Mom and the littles to get a bite to eat.  They would meet us in a room later to see the baby being born.  The older girls went with Ronnie and I.

"I am about to deliver."

Apparently the nurses did not take me seriously.
Walk down a long hallway.  Pause for contraction.  Get weighed.  Sign some papers.  Change into hospital gown.  Pee in a cup.

"Are you kidding me, I am about to deliver a baby here."
"Well, we will check you soon to see if you need to be sent home to labor and come back."

"Umph, that ain't happening."

"Let's hook you up to monitors."

"CAN YOU WAIT A MINUTE, I AM HAVING A CONTRACTION HERE!"

"I cannot get heart tones. We gotta get her in a delivery room."

"CAN YOU WAIT TILL AFTER THIS CONTRACTION?!?!"

"No, we have to go now."

Being ran down the hallway on a stretcher I vacillate between hollering and telling the nurses, "I am usually a very nice person."

"Epidural or natural?" was asked in the middle of a contraction, during the high-speed race.

"Natural,"  sweetly answers my lovely daughter, who has read all the midwife books.

"EPIDURAL!" I say holler, after having read the same books.
I am trying to not push.

"She is pushing.  Check her."

"Oh *#@$!!  There's the head.  We gotta get to a room."

"There's not time.  Push."

"I CAN'T!"  Yeah, I am not big on pain.

"YOU HAVE TO!"

Next thing I know I feel his little self all 9 lbs 6 ozs come sliding out.

Great, I can relax now.  
Wait a minute, why is it so quiet?
The room fills with medical personnel.  Seventeen of them.

"What's going on?"

Silence.

"What's going on?"

Silence.

"WHAT'S GOING ON?"

"It's going to be ok," compassionately answers a daughter.
I look over and he is not moving.  I look at my other daughter.  "It's going to be ok," she says with fear and trembling.  Ronnie is speechless.  I cannot hear nor understand the quiet talk of the nurses surrounding Elijah.  They are giving him shots.  They are trying to resuscitate him.  A couple of them are overwhelmed and have to leave the room.

"WHAT IS GOING ON?"

"We are working on him."

15 minutes pass. 

"How long will they keep this up?"

Silence.

20 minutes have gone by. 

"How long will they keep this up?"

The only man in the room, besides Ronnie, is standing at my feet, pulling on the umbilical cord.  

"Has anyone ever hit you?"

He looks at me and laughs.  

"Because I am about to hit you."  Dude, you don't know how serious I am.

He continues to stare.

"This is better than cable, eh?"  Yeah, I'll humor the guy.  Then maybe he will stop staring and pulling. The girls swear he is the maintenance man.

A doctor comes over, "Your baby is very sick.  He has been without oxygen for over 20 minutes.  We don't know how long he has been without a heartbeat.  His cord was wrapped around his body and he has aspirated meconium.  We don't know why this has happened.  We will do all we can.  Do you have any questions?"

"Are you the best person to be working on him?"

"I believe I am."

"May God guide your hands and your decisions."

"Tell him 'bye'."

They wheel him over and I place my hand on his tiny chest.

"Elijah, mommy loves you.  Get better."

He startled, opened his eyes for a second, and looked at me.

The next time I saw sweet baby he was hooked up to a plethora of machines.  He was alive.  For how long, we did not know.  The doctors and nurses kept saying they were sorry. Sorry?  Sorry for what?  He is in God's hands.  God determined this before the foundation of the world.  We are trusting in God's Sovereignty.  You would have thought we had grown 3 heads the way some of them looked at us.

We continued to befuddle the doctors. 

During the first week, one entered the room cautiously and looking very nervous.  Our pastor was in the room.  Again.

"The DNA test results have come back."

"And?"  I am expecting something horrific.

"It shows positive for Trisomy 21."

"Ok, and?"  Still waiting for a big revelation.

"Do you know what that means?"

"Yeah, he has Down's Syndrome."  I wish he would just tell us what the problem is.

"Do you understand what Down's Syndrome is?"

"Yeah, he has an extra chromosome, no big deal," I hear Ronnie say.

"Look, if that is his only issue, it's not a problem."

"Uh, that's all."  Cue puzzled doctor leaving the room.

No, we did not know that he had Down's before he was born.  Yes, I had prenatal testing.  No, if we had known beforehand, it would not have changed anything.  Well, I might have read a couple of books every book I could get my hands on.

Over the next few weeks, at the hospital Elijah continued his fight for life.  There were a couple of doctors that would come in every couple days with "We are going to have to talk about if what we are doing is just prolonging the inevitable.  We can keep him alive, but we have to think about quality of life."  No.  I am not having that talk.  God, if you want him, take him.  I am not strong enough to have that talk.  "We will have to talk about shutting all this off.  He is on a lot of support.  He should not be alive with all this support."  I would just tell them that he was in God's hands.  They said we would talk later.

After one of these 'talks' I closed the curtain around myself and wept.  I was weary.  I was tired.  It was so hard seeing that precious soul fight for life.  A nurse came over to console me.  "Did the doctor come in and talk to you."  I nodded.  "Well, she didn't tell you anything you didn't already know, right?" That made me mad.  I must have gave her 'the look' because she left and I never saw her again.

The hardest times were when the younger children would ask, "When is he coming home?"  I didn't know what to say.  I didn't know if he would come home.  "I don't know.  He may not come to our house.  We may only be home together in Heaven."  I wanted them to know that this is not our home.

Weeks passed and one of the doctors mentioned going home.  Home?  Is that possible?  I am still in the survival mode!  We actually didn't know the day were we going home until that day.  But what a glorious day it was!  A close second to the first time I got to hold him.

Elijah continues to follow-up with 10 specialists.  For the medically inclined, Elijah's diagnoses included acute renal failure,, disseminated intravascular coagulation, hypotension shock, meconium aspiration syndrome, respiratory failure, portal vein thrombus, persistent pulmonary hypertension, hypoxic-ischemic encephalopathy, congenital hypothyroidism, and trisomy 21.

Elijah has physical, occupational, and speech therapy 7 times every week.  Because of his weak muscle tone from the Down Syndrome and HIE, he must work extra hard and tires faster than typical kids.  He has undergone 5 surgeries including a heart catheterization. He has been hospitalized twice with pneumonia, once with dim survival chances.  He continues to face his challenges with a smile and fighting spirit.  

We anticipate a beautiful future for Elijah.  We cannot adequately express our humble thanks to the NICU staff at Providence, specifically Dr. Mary-Alice Johnson, and nurses Ashley Williams, Jessica Flitcroft, and Jon.  Today, Elijah's favorite therapist is Tiffany Johnston at Playful Learning in Eagle River, with Tara Acton a close second. Our friend Grace Mischenko was a great help with DS info as well as the personal blogs http://noahsdad.com/ and https://kimchilatkes.com/.  

This journey has taught our family to more fully trust God, to be able to ask for and accept help from friends and family, and to be more compassionate to all those we encounter.  We have grown closer and stronger and more fierce in our commitment to those we love.  However, unlike most others I read or speak to, if given the chance, I would take the disability from my child. 

But until we reach Heaven, I will live and praise God for the gifts that He gives.   Especially the precious gift of our beautiful, tenacious, Warrior Kid of Alaska.