Thursday, January 26, 2012

CHD Awareness Post


January 25th.
Its always a black mark on the calendar.  With impending dread, the day approaches shrouded with a shadow of uneasiness....and gratitude all at once.
Its our "what if" day.


If you've followed this blog for any length of time, you've heard fragments of Evie's heart journey.  But being honored with a request to write down her story to be included in the "When Life Hands You A Broken Heart" Heart Stories as part of the upcoming CHD Awareness week collection, Ive been prompted to consolidate the snippets Ive shared here on the blog.  Forgive the length.....experiences like these don't come in short, concise packages.
This very night four years ago seems like a good place to start.....




January 25th 2008
Our 10 day old baby girl Evangeline (Evie) was thriving, or so we thought.  She was a whopping 9 lbs when she was born and aside from the brief moments after birth when she appeared "blue" and was given blow-by-oxygen, we had every indication that she was healthy and normal.


Her behavior began to vary slightly throughout the day.  When I would nurse her, I remember her feeling sweaty and clammy.  Odd, I thought.  And then I noticed some bruising on her arms.  I called the pediatrician who told me to watch it and bring her in if it changed or got worse.


It was a Friday night and we had dropped our other 4 children off at Grandmas house and gone to dinner with some new friends.  I slipped into a back bedroom to nurse Evie.  She refused to eat.  I wasn't overly concerned.
Returning to the living room of our friends, we began to notice a strange breathing pattern in Evie.  There was a "catch" in her breath whenever she would exhale.
Id had 4 babies prior to her and was familiar with "varying" breathing in new babies.  They all breathe a little funny sometimes.....right?
"Is she ok?" my friend Wendy asked.
Looking back now, this was the first of many life-saving "red flags" that began to prompt something in C and I.


Leaving their house at close to 11:00pm, we decided perhaps it would be wise to swing by Urgent Care just to be on the safe side.
The lights were out and the parking lot was vacant.
Nuts.
They were closed.


Back at my mother-in-laws house, I tried to feed Evie again while C roused the kids to load them up in the car for our 45 minute trip back home.
Again I took her to breast.
Again she refused.
Again the catch in her breath left me feeling uneasy.


With a foolish sense that we were "over-reacting" C and I decided to leave the kids with Grandma and drive back into town and take Evie to the ER.  The whole way there we speculated that we'd be sent home....eyes rolling by annoyed nurses....at our making a mountain out of a molehill.


I carried my bundled baby snuggled warm and safe in her blue fleece and wrapped in a crocheted blanket and filled out forms at the desk.  We were kindly escorted back to triage where a routine examination began.  It was here that my own blanket of security began to rapidly unravel and our world came crashing in on us....


Evies weight check showed a dramatic drop in weight.  With a sense of alarm, the triage nurse called for help when she couldn't get a pulse ox read on Evie (this measures oxygen in the blood.  Sats should be close to 100 for "normal" children...Evie's were in the teens) We stripped her down to her diaper.  She was cold....very cold!  The thermometer taking her temperature registered at 70 degrees.  Evies body was shutting down and we didn't even know it.


The nurse urgently swept Evie up in her arms and ran through the double metal doors.  "I need help NOW" she yelled.
(Looking back now, we realize that arriving at the hospital even a few minutes later would have been.....too late)


We found ourselves shoved in the corner of Evies room as doctors and techs from every corner of ER left their patients and came hustling to Evie's side.
Dr. B was a commanding presence that took charge.
A sick, sinking feeling washed over me as I watched the medical personnel file in one after the other. 
This was not standard procedure. This was not “nothing”. 


Twelve individuals in scrubs circled her bed jockeying for position.
In a matter of seconds, life seemed to drain from her tiny body. She lay still and unresponsive to their rough stimulation. She was in cardiogenic shock. 
Her frame was ashen. 
No color. 
A picture of death. 

My face felt hot. My hands were shaking. C held them firmly as we watched helplessly. This tiny baby whom I had protected, held and caressed was at the mercy of frenzied hands, probes and needles. A huge orange tackle box was rushed into the room.“Infant Crash Cart” in bold letters sent chills down my spine. Dr. B shoved a ventilator tube down Evie’s throat. I cringed. 
Still, no movement from Evie. 
Someone flipped her on her stomach as a six inch needle was plunged into her spine. Fluid was drained. I knew this was a spinal tap looking for infection such as meningitis. Normally this painful procedure would be performed under anesthesia. But, no cry from Evie. 
No response. 
No movement. 
Words were swirling around me. HepatitisGroup B StrepMeningitis. All viruses I knew could be deadly in one so small.
C took me by the shoulders, urging me to leave the room. “Mandy, these images will stay with you forever. You don’t want to see this”. 
The horror was unbearable, yet, not a single instinct could pull me away from the nightmare. I had an acute sense these could be my last moments with my baby and I had to be by her side. I couldn’t bear for her to be alone with strangers. I glanced up to see Dr. B who had stepped outside the door and was speaking in a hushed tone to another doctor. Her face was masked with doubt and I watched her close her eyes and shake her head with disappointed resolve.
She didn’t think Evie would make it.
Oh my GOD!!
She was giving up hope.
The reality slapped me in the face. I wanted to scream. I wanted to beg her to do something. C cupped my face in his hands. His gesture snapped me back to a reality that seemed untouchable in the chaos whirling around me. “We’ve given her back to the Lord Mandy.  She’s in His hands.” I choked on my own words. “I know.” My world was crumbling.
God, be here,” was all I could breathe. Fragments of a familiar song began to minister to the deepest recesses of my breaking heart.

“Blessed be you name when Im found in the dessert place
Though I walk through the wilderness, blessed be your name.
Blessed be your name, on the road marked with suffering
tho there's pain in the offering, blessed be your name.
Every blessing you pour out I’ll turn back to praise
When the darkness closes in Lord, still I will say;
Blessed be the name of the Lord
…you give and take away
my heart will choose to say
Lord blessed be your name.”

Dr. B snapped at a nurse who had unsuccessfully stuck Evie repeatedly to try to get an IV line in. Her angel-hair veins were collapsing.  It was like trying to thread a needle in the dark. “I need that in yesterday!”, she barked. A new young blonde nurse cowering under the order took up a needle and began to prod for Evie’s tiny angel hair veins. Oxygen was cranked up, yet her saturation levels were still alarming at dangerous levels. The room was spinning. I calculated my breathing trying to take in oxygen for Evie.
And then, a break through. “Im in!” The nurse had successfully threaded a needle into a vein.“I want that secure NOW” Dr. B emphasized. A collective sigh erupted around the room.  Fluids were opened wide to try to help stabilize our baby. Constant adjustments continued on her oxygen intake, more blood tests were drawn, but the census in the room began to dwindle. Someone explained to us that Richland Hospital downtown had been notified of Evie’s condition. They had a specialty Neonatal unit and were sending an ambulance to transport her to a better equipped facility.

Evie still lay motionless. She was only a shadow of the baby I had placed on the bed two hours before. There was no movement. No color. The only indication of life was the irregular beeping of the monitor mirroring her heartbeat. The nurse left us alone for a few minutes telling us that the transport team would be there shortly. Bruises dotted her arms where unsuccessful attempts to get a line in had marred her perfect complexion. Her tongue was forced out of her mouth aside the vent tube down her throat. Her lips were dry and cracked.

I rode in the ambulance as the transport team escorted Evie to the next hospital.  Dozens of papers requiring signatures were given to me during the drive.  Numbly I signed.
Once at Richland, we were separated while they tried to re-stabilize Evie.  C and I were given a quiet private room to wait in. 

Eventually, a  team of doctor, social worker and support counselor filed into our private room. Seeing the looks on their faces made my own heart stop. We were told our baby was very, very sick. And then the news. The news that our daughter had a broken heart.
Her heart!
They explained that Evie had Transposition of the Great Arteries (TGA).  Basically, the two main arteries coming out of the heart developed opposite.  So instead of blood flowing through the body and mixing, her blood was not circulating through her lungs and oxygenating.  So since birth, she had slowly been suffocating.
A rough sketch was drawn on a napkin representing a normal heart and her heart. They looked nothing alike. We were told that they were working to stabilize her enough to make a Life Flight to Charleston and that she would need surgery as soon as possible. At last they called us in to say good bye to her, telling us the chopper had just arrived and they'd be taking her soon. She was almost unrecognizable under all the tubes and wires. She'd been intubated a second time and harsh tape had left marks on her once flawless skin. Dark 'glasses' shielded her eyes from the strong lamp she was under to stabilize her body heat. Still no movement. No response.

We followed by car feeling utterly helpless. The Charleston hospital called to get a verbal release to perform an immediate temporary cath procedure that would insert a balloon into her heart to open a space and create mixing and oxygenating of blood until surgery could be scheduled. They stated the risk that she might not survive.

Upon arriving at the hospital, we were shown into the Pediatric Cardiac Intensive Care Unit.   There was something almost sacred about this place.  Within the confines of the busy, bustling, medical college hospital, there was a sense of reverence walking into the unit.  Every tiny soul here was fighting for their life and the hushed tones of nurses and compassionate care of the patients families made this home to our girl for the next several weeks.  Our family and friends came to be by our side as we waited for three endless days, for a schedule opening for Evie's life-saving-surgery.  We were completely overwhelmed by the hands of support extended to our family.  
A lovely home in Charleston was offered to us to stay in and bring our other children to be close to us for the weeks we were there.
Meals from friends and strangers were brought to us.
A prayer chain was established and emails began flooding in from literally around the globe from people who had heart about Evie and had small groups, bible studies, friends, family, neighbors and Sunday school classes praying.


The morning of her scheduled surgery, we arrived at the hospital at 6:00am to hold her..."one last time".  








During the 7 hour procedure, we received periodic digital pages from the hospital updating us while she was in surgery.  Never have I prayed so hard as the hours her heart was completely stopped.
Time stood still.  Such a helpless feeling to only be able to wait.
We prepared for the worst.  And hoped for the best.

Returning to the hospital, a nurse met with us to "prepare" us for what Evie would look like post-surgery.  Our baby had been through unspeakable trauma, but our little fighter could not have been more beautiful to us.  




This began a long, slow and sometimes painful road to recovery.  It wasn't smooth sailing, but with "two-steps-forward, one-step-back," (and a lot of scares along the way), our Evie has come so far!  Her road to recovery took a few detours through multiple dangerous heart rhythm (tachycardia) issues that had to be controlled through medication.  Then 2 additional surgeries to investigate chronic lung disease.  She battled Congestive Heart Failure for the first year post-surgery.  She's overcome GERD, Failure to Thrive, and auto immune disorders. She's spent cumulative weeks in the hospital for recurring pneumonia of her weakened lungs.  SHe's undergone over 20 chest X-rays, 4 urinary cath procedures, 4 blood transfusions, multiple CAT scans.  She's been intubated 6 times and had 22 ECHO's and 16 EKG's.  Lets not even count the number of blood draws to date! 




Four years ago tonight began a long and very painful road for our wee girl. Four years ago tonight began a process that I wouldnt trade for anything. I would never have chosen it, but it has been incomparably redeeming! We have seen the hand of the Lord restore and heal what was broken. We have seen Him comfort in real ways that can only be experienced when the comforts of this world fail you. We have been recipients of the Body of Christ rallying to support and be extensions of the hands and feet of Jesus to us. Our marriage has been strengthened through walking a road of pain together. Our faith has been strengthened through seeing God meet us in our dispair. We have seen answers to prayer that astound us! 
We have seen miracles!






219 comments:

1 – 200 of 219   Newer›   Newest»
Danielle said...

What a great way to remember the great works God did! Thankful for all He did in her little life, and I am sure in the lives of many for many years to come! Love you guys!!!!

bobandkelly said...

Praise the Lord for he does marvelous things. Evie's story brings tears to my eyes every time...

Becca said...

She is so beautiful! Thanks for sharing her story . . . (I dont know if you went to Fellowship Bible Church? We have mutual feiends who told me I should read your blog) :-)

Rachel said...

Wow - that story brings tears to my eyes and gives me goosebumps. I can't imagine the strength it took to get through that.

Sarah said...

Oh Mandy, I just cry and cry every time I read her story! Thank you Jesus, for Evie!

Montana Wildflower said...

I'm glad it turned out the way it did for you. You're little Evie has come a loooong way ( I have an Evie too, only she's 19 months and her name is really Evelyn)

I could so identify with you through the story when and how you first found out. We went through exactly the same thing....only it didn't turn out good for us. Our little boy, Graydon, died in my arms on the way to the hospital, when he was 3 days old. We didn't know what happened until the autopsy revealed that he had Hypoplastic Left Heart Syndrome.

To add insult to injury, our small hospital called the sheriff on us and we had to go through an interview describing what happened. I knew as soon as I saw him come into the ER, he was here for us...and he showed before they even told us our little boy was gone.

What breaks my heart is that when he was born, our midwife saw that nothing was amiss. His heart sounded fine. He was a bit blue around the mouth and nose, but we just checked it off to being newly born.

Over the next few days, he failed to eat well and was a very sleepy baby. In the hours before he died, we went back for a PKU test and he was circumcised (I would never ever have that done again. I feel a lot of guilt knowing I allowed my son to feel even a moment of unnecessary pain in his short life.)he continued with a blue look, which I later found out was called dusking.

Before we found out what he died of, I thought there was something wrong with his kidneys just because he didn't eat and didn't have hardly any wet diapers. We were SO shocked to find out it was his heart....we had NO idea.

This is why I tell people the story of Graydon, to increase awareness.

CHD is THE MOST COMMON birth defect, affecting 1 newborn out of every 115 to 150. There are about 40 different kinds of CHDs, most of which are fixable if known about BEFORE birth. HLHS is a lot of little things that add up into a mostly unfixable heart, the most serious of which is failure for the left side of the heart to develop.

Most states mandate the testing of newborns for PKU (phenylketonuria) a lack of digestive enzyme that causes brain damage if not detected. The incidence for this is 1 infant out of every 17,000, yet there is a law requiring every baby be tested for it. There is no mandatory testing in any state to check for CHDs.

Right now, there is a movement to mandate hospitals check every newborn with a painless and easy Pulse Ox test and to get the word out to parents to insist their babies be tested. Some hospitals do it as a matter of routine, but many don't. Further, many new parents are met with resistance from staff when they specifically ask for the test to be done.

Just today, I recommended to a friend of mine to make her son and daughter-in-law aware of the test that they should ask for to have their newborn son, Abe, tested.

The other thing I seek to do is to help parents recognize the symptoms of heart trouble in their newborns. There were SO many signs that I didn't take seriously and brushed aside before Grady died, the most concerning being dusking, poor eating and very few and barely wet diapers.

So, now, using the loss of my son, I seek to make other parents aware and to spare them the agony felt by our own family with his loss. A pulse ox may not have helped him, because he was unfortunate enough to have a very difficult heart malformation where he likely would have died anyway, but I wish we would have known and been able to have the chance to help him sooner.

I am so very glad that things turned out for your Evie....I know how very close she was and I know how many times you have played over and over in your head the signs she showed before you realized how sick she was.

Please help get the word out.

My best to you and yours.

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