Tuesday, February 25, 2014

THE OTHER SIDE

I always envisioned my pursuit of having children as though I were running down a hallway towards a door. This door would open up to a world where I would have my family.  As years passed and I remained childless, the hallway grew longer and the door further away.  When I closed my eyes it felt like something out of a Twilight Zone movie. I could see this door but no matter how hard I tried to reach it, I could never seem to get there.

And then one day....BAM!!!  Not only did I reach the door, I slammed right into it.  Having a baby for the first time is scary enough but finding out you're having triplets is down right terrifying.  Don't get me wrong, I was ecstatic but the thought of being responsible for three little lives just like that, scared the "#@%&" out of me.

So the day came and I was finally able to walk through the door into a world I have longed for most of my life.  As a young girl, I always pictured this world full of children running, laughing and playing.  A world of trips and adventures, quiet family moments and everything in between.

The door opened, but what I saw was completely different.  This is not to say that the moments I have envisioned do not exist but they exist in a very different way.  The view from beyond the door has been much more frightening than I had expected.  There are far more strangers than I had thought there would be.  Far more doctors, hospitals, procedures, needles, insurance companies, pharmacies, medications, private duty nurses and therapists than I had imagined.  It is as if I walked through this door and was immediately standing on the edge of a cliff not knowing for the life of me what I should do.

What could I do?  I knew I couldn't turn back or start over.  I didn't want to.  My dream, although be it different, had come true.  However, I felt as if everything I was being told about Caden and everything that was happening to him was slowly pushing me off this cliff.

What I did see were the possibilities on the other side.  I saw my three beautiful children growing, learning and becoming amazing people.  I saw the future and knew I had to help my family get there.


So this journey began with the slow descent down this medical mountain. I have been battered and bruised along the way but my son has felt more. His trip has taken its toll on him.  As strong as he is, it has weakened him some.  He has scars, both physical and emotional, to show for it.

I am not sure if we have reached the bottom yet.  I, unfortunately, don't believe we have.  My son's health continues to fluctuate and we still don't have many answers.  We may have to continue down before we can begin to climb, but we will persevere and slowly make our way to the other side.

There have been and will continue to be setbacks.  We will often be steered in the wrong direction by those we thought we could trust.  Caden will occasionally fall.  But we have hope.  Despite the blood, sweat and tears, we have hope.  Caden, through his strength and determination, will look every challenge in the eye. He will face his enemies and he will defeat them.  I have to believe this.  It is what keeps me going.  I will hold his hand through the entire journey and will never let go.  I will carry him when he is weakest as he will carry me when I begin to lose hope.


I do believe in my heart that one day we will reach the other side.  And oh, when we do......


Wednesday, February 19, 2014

BEEP, BEEP, BEEP...even in my SLEEP!

Birth day for preemie parents is quite different from the "norm".  I barely got a glimpse of my three tiny babies before they were quickly taken away from me and whisked off to the Neonatal Intensive Care Unit.  I spent what seemed like an eternity in post op and then after four hours, was wheeled into the NICU to see my children through little plastic cages.  We could not hold them or touch them.  Just to enter the NICU you had to scrub up as though you were a brain surgeon preparing for surgery.  There is nothing warm or kind about a NICU. They are loud with the sounds and beeps of every monitor known to man.  Parents sit next to the isolettes staring through the window trying to catch a glimpse of their tiny newborn amid the oxygen devices, heart monitors and I.V.'s.

I was discharged 5 days later and had to leave my little ones behind.  We came home to an empty house, empty cribs and empty hearts.  The bond a mother should instantly feel with her new baby does not exist immediately for the mother of a NICU preemie.  I was able to spend about an hour a day with my children and if lucky, hold them for a short time.  But mostly, I just watched as doctors and nurses worked to keep my babies alive.


We were able to hold Caden for the first time when he was 5 days old.  The NICU nurse gently placed him in our arms and untangled his many wires.  It was the first time we were allowed to hold one of our babies and a moment I will never forget.

As routine protocol for all babies born at less than 32 weeks, my three were given head ultrasounds at one week old.  The next day Caden's doctor sat us down and we immediately knew something was wrong.  She told us Caden had a brain bleed.  It was mild (grade 1) but the bleed could mean he may someday have a mild learning disorder.  We were devastated.  Thinking back I have to laugh.  What I wouldn't do for him to have nothing more than a mild learning disorder.

Caden was the strongest of our three in utero.  As a matter of fact, I nicknamed him my "Belly Bully" because he took up so much space leaving very little room for the other two to grow.  His Apgar scores at birth were excellent and he was the first to take a bottle by mouth.  He was also the first baby to come home.  At seven weeks old, Caden was discharged from the hospital.  However, just prior to discharge he had a brain MRI to see if there was anymore damage.  And this became the day his journey began.

Caden's brain bleed had progressed to a grade 3 (severe) which almost never happens and he had significant PVL (white matter loss).  We were told that he may develop cerebral palsy and that with extensive therapy, he should still be able to reach milestones although he would be delayed in doing so.  Again, what I wouldn't give for that to be the truth.


Caden came home on oxygen and an apnea monitor so the beeps and wires we so dreadfully hated in the NICU found their place in our home.  Nonetheless, our first baby was home and we were slowly beginning to feel like the parents we had longed to be.  Two weeks later, Emily arrived home.  She came home wire free but weighing less than 5 pounds.  Ethan

struggled to breathe on his own and therefore, spent the most time in the NICU.  He was the smallest of the three and was the one doctors were most concerned with in utero.  But on Tuesday, November 23, 2010, our family was finally complete. Ethan, with his oxygen tank and apnea monitor, came home after spending thirteen weeks in the NICU.  Two days later we celebrated Thanksgiving.  Although it had been a rough start and we knew we had a long road ahead, we had so much to be thankful for.




Wednesday, February 12, 2014

The Power of Music

I found this song (can't remember where) and thought the words were beautiful.  Caden and I both love music so much.  Caden does not have many "working parts" but he's always had good hearing.  He and I listen to music often, especially when he's in the hospital.  Just last night I sat with him downstairs in the dark, listened to Lullaby Themes on Pandora (great station) and rocked him back to sleep after he had awakened from severe abdominal pain.  I wish I had been able to take a picture of him sleeping peacefully on my shoulder.  He was so beautiful, calm and pain free.  A few tears fell as I stroked his soft, warm cheek.  It hurts so much to see my little boy scream in pain with very little I can do to help him.


(Caden sleeping peacefully during a stay at CHOP last Spring)



Because Caden and I love music so much, I will often share lyrics and suggest songs which help comfort me.

http://youtu.be/3YK3JR-4Wpg

"He's My Son" by Mark Schultz

I'm down on my knees again tonight,
I'm hoping this prayer will turn out right.
See, there is a boy that needs Your help.
I've done all that I can do myself
His mother is tired,
I'm sure You can understand.
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.

Sometimes late at night I watch him sleep,
I dream of the boy he'd like to be.
I try to be strong and see him through,
But God, who he needs right now is You.
Let him grow old,
Live life without this fear.
What would I be
Living without him here?
He's so tired,
And he's scared
Let him know that You're there.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow.
See, he's not just anyone.

Can You hear me?
Can You see him?
Please don't leave him,
He's my son.

Monday, February 10, 2014

ONE and DONE?



Next time I make a request, remind me to be a bit more specific.  Don't get me wrong, I am the luckiest person in the world to be blessed with my triplets.  I just never thought I would be one of those people who could actually have her own reality show. 

Infertility controlled my life for ten years.  It encompassed my every thought, feeling and dream.  It played a big part in the failing of my first marriage.  I was bitter, jealous and angry.  When Matt and I married in 2008, we agreed to pursue having children for no more than one year.  I was afraid of losing my second husband to the perils of the infertility. 

One year later and with little hope left, we attempted one last round of IVF.  Two fertilized eggs were implanted, fingers were crossed and the endless two week wait began.  Then the call came.  We were pregnant.  It was very early in the pregnancy and I had miscarried once before, but finally there was hope.

I never wanted a big family.  Like most little girls I dreamt of marrying my Prince Charming, having two "perfect" children, and spending summers dinking lemonade on my front porch swing.  As years of infertility changed those dreams, I realized that having just one precious child would be more than enough for me.  I was in my late thirties and my husband was pushing forty.  We both worked full time and as public school teachers.  Money was tight.  Financially, having one healthy child just made the most sense.

At my six week check up we were told I was pregnant with twins.  More than I bargained for but I would finally have my "perfect" little family.  Eight weeks later, we were told the one egg split and that there were three tiny heartbeats.  TRIPLETS....seriously?  Apparently, the Man upstairs thought "One and done" meant one pregnancy rather than one baby. 

My pregnancy wasn't easy.  If it's possible to be allergic to being pregnant, I most definitely was.  I developed an unexplained rash, severe heartburn, pre-eclampsia, and I vomited daily.  I ended up going into labor at 26 weeks and was put on hospital bed rest to try to keep the little ones in.  I made it to just over thirty weeks.  Welcome to the world Emily Hope (2 lbs. 8 oz.), Ethan John (2 lbs. 3 oz.) and Caden Christopher (3 lbs. 4 oz.)


Easter 2011 (8 months old)

I will continue to "catch" you up on how Caden's story began, but also want to share Caden's life as it is today.  I decided to write his "Can't" and "Can" list.  Parents of special needs children hear the word "can't" all too often.  It's frustrating to constantly hear doctors say "We can't do much about
this" or therapists say "He can't do this, but maybe somday...".  Trust me, we know what our children can and can't do.  Caden will be three and a half at the end of February and here's his "Can't" and "Can" list:

CADEN CAN'T:

Roll over
Sit up
Stay in a sitting position without falling over
Crawl
Walk
Talk
Eat food by mouth without gagging, retching or vomiting
Go a day without vomiting
Sleep through the night without waking up in pain
Chase his brother and sister around the house
See very well or track consistently
Hold his head up with control
Pick up his pacifier when it falls out of his mouth

In fact, physically, Caden CAN'T do much but...


CADEN CAN:

Smile so big it lights up the sky
Laugh a belly laugh that will make you cry
See his mommy and daddy's face
Understand the world around him
Dream
Think
Listen
Hope
Communicate "yes" by raising his left arm
Cry to let us know he's in pain, hungry or tired
Hug (with a little help)
Say "YEAH" when he's super excited

But most of all....Caden can LOVE.

Caden is the happiest toddler I know.  Despite everything he goes through on a daily basis, he rarely complains.  We are very lucky.  Caden shows, expresses and understands emotion.  I couldn't imagine not being able to see his smile or hear his infectious laugh.

Here's a short video montage of Caden's smile and laugh:

http://youtu.be/YlYRdkuDNxM

video

Friday, February 7, 2014

WHY THE UNICORN???

Why the unicorn?  I wanted to create a background for this blog that best symbolizes my three year old son, Caden.  I thought about Winnie the Pooh. You see, from the time I found out I was pregnant with the triplets back in 2010, Caden has been my "Pooh Bear".  But Pooh, although cute and cuddly like Caden, does not portray the fighter in him.  Caden has a strength like no one I have ever known.  As his name translates, he is a "warrior".  He has endured and persevered through more in his short life than most do in a lifetime.

Would a warrior best symbolize my son then? Possibly, but my vision of a warrior lacks the compassion, gentleness and kindness which Caden possesses.  He is beautiful with a pure heart.  Caden brings a sense of tranquility to an otherwise crazy world.  His life is a gift to all who know him or have had the opportunity to meet him.

I then remembered what one of Caden's many doctors once said to us.  He told us that there are a few people who fit into a medical category so unique they've been labeled "medical unicorns".  These few individuals are mysteries to even the best doctors.  Caden is our "unicorn".  He has been passed around from doctor to doctor, hospital to hospital, in search of answers; in search of a diagnosis that ties all of his medical conditions together.  It is impossible to think that one little boy can carry so many symptoms with so many different health issues and not have something to explain it all.  Some of the best doctors in the world have said they "have never seen a child like Caden before".  Or as his doctor who first labeled him a medical unicorn once said, "Caden, like a unicorn, is almost mystical; a mythological being".

So when I found this picture of the unicorn it just made sense.  A unicorn is strong, brave, stoic and proud, yet gentle, kind and beautiful.  Caden is all of this and more.

If you are wondering what to expect from this blog, I can not honestly tell you.  I will write what is on my mind at the time but carry in my heart always.  My posts may be simple, random thoughts or quotes  I find inspiring.  You will see pictures and receive updates on how Caden is doing, both the highs and the lows.  I promise to keep a sense of humor.  For those of you who have a chronically ill or special needs child, you know that a sense of humor is how we survive each struggle, each set back and each and every day.

I have become an advocate for my son.  This was a long, hard process.  When his medical conditions first came to light I felt scared, helpless and alone.  I did not know how to best help Caden and had no idea who I could turn to for answers.  I am hoping to help other parents find the strength and courage to advocate for their children.  I am hoping to meet others, like me, because having a special needs child separates you from the "norm" and can leave you feeling lost and alone.

But mostly, I am writing to help my son tell HIS story,  This is his journey and I am just along for the ride.  A ride so scary I want to get off at times but know I can't.  A ride which has given my life purpose and defined who I am.  A ride we will take together as a family and although it may never end, we will cherish every up and persevere through every down.

Thank you for being a part of his world and for coming along for the ride.  I assure you, Caden's journey will simply amaze you.