Thursday, May 10, 2012

Please Don't Take My Sunshine Away....

Our brand new baby boy was 3 days old.  My husband sat in the chair across from me, while I cuddled baby Ryder close and sang little songs and nursery rhymes softly in his ear - most of which he was hearing for the first time.  It was a precious moment, but as a first time mom, the moment should have felt different.  I began the next song...

You are my Sunshine
My only Sunshine
You make me happy
When skies are grey
You'll never know dear
How much I love you...

And then I paused, horribly stunned at the words I was about to sing.  My husband and I made brief eye contact and then quickly looked back to the sleeping baby in my arms.  Our eyes - already damp, swollen and tired - filled with tears and we sobbed silently, so not to wake Ryder.  I finished the song... 

Please don't take my sunshine away.

We were at the Alberta Children's Hospital. Some time later we were escorted to an operating room, and after a prayer with our Pastor, I hesitantly handed my precious, fragile, sweet Ryder over to a lovely nurse.  I'll never forget that moment as I watched her walking away - rolling an IV pole with her left hand and cradling my baby in her right.

This is Ryder's story ~  

In the months leading up to the arrival of our first baby, we had been spending quite a bit of  time in Calgary.  Driving around one day with family, our attention was drawn to a big, colorful, beautiful building on the side of the hill, that would soon be the brand new Alberta's Children's Hospital.  Naively, I commented on it's fun exterior appearance, and in agreeance, my husband stated his hopes aloud, that it was hopefully a building that we would never have to see the inside of.  

Two months later...

On August 15, 2006, the highly anticipated, most handsome little baby boy was born to my husband and I, in our hometown of Brooks, Alberta.  We named him Ryder Ty, and we knew he was special from the moment we laid eyes on him.  My husband asked for reassurance more than once, that we were indeed the proud parents of a perfectly healthy baby boy.... and that is exactly how it seemed.

There was no need to be worried about Ryder's health.  I had had a perfectly healthy pregnancy, a smooth delivery and now we were officially beginning our journey as parents!  What we had hoped would be a brief hospital stay, turned to worry and constant buzzing to the nurses about issues that our baby was having with holding any of his feedings down.  After two wasteful days of holding him in different positions while he ate and hearing that the amount of regurgitating that he was doing was normal, our fears grew.  Perhaps he had Pyloric Stenosis, the same thing that I had indeed had as an infant?  After much convincing, the Dr. ordered an XRay that showed some type of blockage in Ryder's digestive system (hopefully nothing serious), and sent us along with our brand new baby and an address, to the Alberta Children's Hospital in Calgary. 

After what seemed like the longest drive in the history of driving (rush hour included), we arrived at the Hospital on Richmond Road.  We were kindly greeted and escorted into the Emergency Room, where the questions began and a sense of something much more serious came over the room.  Before you know it, it seemed like there was 20 people in the room.  One of the first questions we were asked was when the last time the baby had been attached to an intravenous... he hadn't been!  Ryder was dangerously dehydrated, his skin was tenting, murmurs were heard in his heart, his blood pressure was nearly impossible to read, his jaundice levels dangerously high, and he was lacking any vein big enough to accept an IV.  But they did it.  They did everything.  Within minutes, he was being rehydrated, and being cared for.  They saved his life and so began our journey at the Alberta Children's Hospital...

That night it was determined that Ryder would need surgery.  He had some type of duodenal atresia, nothing that could be determined beforehand, but much more serious than what we thought could have been Pyloric Stenosis.  But he was stable, and the next day would be a big one.  With his Daddy sleeping beside him in a chair, we tried to get some sleep - the next day would be a big one and he would be 3 days old!

We met with the surgeons the next morning, when they would explain the surgery process and how things would go.  There would be a number of things that had to happen leading up to the surgery, including an echocardiogram.  Doctors wanted to get a good look at his heart, as they had heard a murmur that needed to be looked at closer before any major surgery could happen.  

By then, our family had all come to be by our side.  We seemed to fill any waiting room we were in and wouldn't have had it any other way.  Our friend and Pastor had also arrived at that time and the timing of his arrival couldn't have been more perfect.  

Ryder's echocardiogram would not deliver good news.  On top of his pending surgery happening later that day, he would also require heart surgery soon after.  His heart had 3 holes, one being very significant.  We left the cardiology unit and with our parents and Pastor John, went to the Hospital Chapel, where Ryder was baptized.  It was beautiful.  

Later that night, and in the midst of this crazy whirlwind, we took our baby boy to the operating room.  Even more fragile that we originally thought, words just can't describe the feeling of handing over your baby.  But we did.

No word of a lie, there was some sort of world fire-works competition going on in Calgary that night, and as our entire family somberly watched the beautiful fireworks out the window of the hospital cafeteria, we were paged over the intercom to meet our baby, back in the ICU.  It was over, and he was okay.  It turns out he had an Anular Pancreas, which means his Pancreas had grown around his duodenum and was constricting it.  He had not been digesting anything at all for his first 3 days of life.  It is nothing short of a miracle that we got to the hospital when we did the day before.

We knew that the recovery from his surgery could be lengthy...  About 6 weeks or so in the Children's Hospital.  We spent our first 10 days in the ICU, surrounded by fantastic teams that would check in on and watch over Ryder.  'Baby's first photos' are certainly different than your average newborn... countless tubes, ventilators, machines, cords and drains... but they're our baby's first photos, and they're perfect.  

When Ryder was 2 weeks old, we graduated from the ICU and headed to the unit.  Things were tougher there.  A lot more work for Mom and Dad, for sure.  Learning what all of the alarms and beeps meant, when to call for help, learning more medical terminology than I'd ever care to recall again and how to hold a brand new baby while juggling his wires, cords, IV and machines.  We encountered a dangerous hurdle soon after, when it was determined after a high fever, that he was fighting a dangerous blood infection.  Not good.  He was way too tough to let that slow him down though... 

And then he was famous!  As the halls of the hospital were optimistically buzzing of the near opening of the new hospital, the Calgary Herald did a great big 3 part story on their "Hospital of Hope", and our Ryder made the front cover!  It was a great little boost that we all had fun with!

My husband and I would take turns, alternating nights sleeping in the recliner beside Ryder's hospital crib.  We were more than incredibly lucky to have family just down the road, who would open their entire home to us during this time.  Whoever wasn't sleeping on the chair that night, would be able to go to a warm bed with a hot shower and healthy breakfast in the morning.   Lifesavers.

Ryder was about three weeks old when he received his first feeding by bottle and ate like a champ...  All 2 ml's of it, which is less than half a teaspoon!  We slowly worked our way up, weighing him after every feeding to ensure he was getting what he should.  He was also on a constant feed by an NG tube, to make sure he was getting adequate food to help his body grow. 

Ryder's heart was working overtime, and as close as we were getting to the finish line of Part One, Part Two was in the near future.  At 6 weeks old, he was ready to come home for a bit of a break before his big heart surgery, and we said "so long" to the Children's Hospital on Richmond Road.  We were one of the last patients to be discharged before they started transferring children to the new hospital.  

We brought our little guy home.  Finally.  We were taught how to properly insert his NG tube, to ensure that he was getting as much nutrition and extra calories as possible.  I was also able to nurse him (starting at about 4 weeks old, and against all odds).  His little body was compared to an adult running on a treadmill all day, trying to consume enough calories to gain any weight.  In his 3 months of life, leading up to our trip to the Stollery, he was able to gain a whopping 2 pounds.  We are so thankful for that time at home together.

On November 16th, 2006 at 3 months and one day old, Ryder had successful open heart surgery to repair Atrial and Ventricular Septal Defects.  Another miracle.  Another team of miracle workers and heroes.  Another amazing experience....  And a short one.  I still cannot believe it, but we were home 7 days later... ONE WEEK!  His broken heart was mended, and the rest is history....

Please support the Alberta Children's Hospital or any CMNH close to you.  I never thought this would be our story, and now know how many similar stories there are out there.
This kind of world class care that we have available to our children is essential and something that I will support for the rest of my life.
I hope you'll consider the same. 

**This post is dedicated to all of the Mom's, sitting in a Children's Hospital,  singing to their "Sunshine's" right now.**


  1. What an inspiring story and amazing little boy you have there!

    1. Thanks Julie! He's one in a million, that's for sure:)