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  Through the Eyes, Voices and
Hearts of Hailey's N.I.C.U. "Aunties"
  written and read by "Auntie" Cathy Penner    
       
       
 

Good morning.

For those of you who may not know me – my name is Cathy.  For the past 10-1/2 months I have had the profound pleasure of being one of Hailey’s primary nurses – or, as we prefer to be called – one of Hailey’s N.I.C.U. “Aunties”.

Hailey, Janet and Colin have been a large part of our N.I.C.U. family over these past months and today I have been given the honour of telling the story of Hailey through the eyes, voices and hearts of the many N.I.C.U. staff members who have cared for and loved this beautiful little girl.

Little Angels
(Author Unknown)

When God calls little children
To dwell with Him above
We mortals sometimes question
The wisdom of His love
For no heartache compares with
The death of one small child
Who does so much to make our world
Seem wonderful and mild
Perhaps God tires of calling
The aged to His fold
So He picks a rosebud
Before it can grow old
God knows how much we need them
And so He takes but few,
To make the land of Heaven
More beautiful to view
Believing this is difficult
Still somehow we must try
The saddest word mankind knows
Will always be “good bye”
So when a child departs
We who are left behind
Must realize God loves children,
Angels are hard to find

As the poem states – “the saddest word mankind knows will always be good-bye”; and at a time like this; it is human nature to want to focus on the sadness and sorrow; and to ask the perennial question “Why did we have to say goodbye?”  Today, I am asking you to try not to mourn a life that could have been; but, rather to join me in celebrating a life that was.  Some of you may be thinking how sad it must have been living an entire life in the N.I.C.U. facing challenge after challenge; but there have been many, many happy memory making moments as well.  I’m here to share some of these with you today. So without further ado – our story begins…

Hailey Marie Paterson was born on Monday, May 11th, 2009 at 10:47 a.m...  A petite little package she was, weighing in at a scrappy 2 lbs 15.2 ounces and just 13.75” in length.  What she lacked in stature and size, we would soon learn she more than made up for in spirit.

Colin and Janet knew before Hailey’s birth that she would have to face many obstacles; this did not deter these first time parents from trying to make Hailey’s stay in the N.I.C.U. anything but normal”ish”…for instance, within Hailey’s first week in the N.I.C.U. when her breathing tube was removed and she was doing well breathing on her own with minimal assistance – we thought it might be fun to give Hailey her first real bath complete with bubbles.  If you have been a regular visitor to “Hailey’s Blog” you will have seen a picture of Hailey soaking in her blue bathtub with the N.I.C.U. version of a spa towel wrapped around her head.   She was clearly hooked on being pampered – and I believe, it was that night that we began the makings of our little Diva; but, more on that a little later.  Mommy and Daddy were happy participants in this aspect of her care from that moment on and bath time became a ritual for the 3 of them whenever Hailey’s condition would allow.  Candles, lavender bubble bath and lotions of all kinds were the stuff night time was made of.  Just an aside - when Hailey wasn’t using these “candles” her Daddy had other uses for them.  Just ask him about the stuffed animals, the candle bonfires and roasting cotton balls.

Hailey spent a few more weeks in a tiny bassinette located in Bed #3 but, it wouldn’t be long before it became necessary to relocate her to a larger, more spacious bed.  She simply was accumulating too much stuff!!!  Now, if you can imagine – this tiny little person sleeping in a bed roughly the size of a twin mattress you might think we all were a little crazy.  Not so.  It didn’t take long before Mommy and Daddy had her new “condo” (known as Bed #11) all decorated with mobiles, important milestone signs and numerous stuffed animal friends. Her new crib suddenly didn’t seem so big.  Truth be told, Colin and Janet weren’t solely to blame for the extravagance that became Hailey’s bedside.  “Aunties” and other N.I.C.U. members just couldn’t help themselves at times and would bring in toys, socks, dresses, etc. for Hailey.  It got to a point where Colin and Janet had to rotate the “stuff” in order to give Hailey an actual place on her bed to sleep!!!  You may not realize this, but, the Paterson family started a trend when it came to bedside décor.  Baby bedsides in the N.I.C.U. have never been more personalized.  Clean and dirty infant clothes are no longer stored in brown paper bags at the bedsides, but, are now separated in individual baskets labeled “clean” and “dirty”.  Parents whose infants require longer than usual time in our unit are truly making their baby’s bedsides more of a home away from home.

Around the 2 – 3 month stage –it was apparent that Hailey had inherited her parents’ outgoing personality.  No longer was she content to just lay in her bed looking at her mobile, her pink dog, or her colorful bug.  She wanted up!!!!  She not only wanted to socialize – she needed to.  When she was being held – she insisted on facing you head on – she had to be able to see you.  She loved to look at faces especially those belonging to her Mommy and Daddy.  She loved to be a part of everything going on around her and would think nothing of quickly turning her head to check out the action beside her all while you scrambled to make sure tubes and wires went with her.  How many times did we, as her “Aunties” have to sit her completely upright in her crib so that she could watch people come and go within her area of the nursery?  Hailey would receive many visitors during the day, none more important than her Mommy and Daddy who were mainstays at her bedside morning, noon and night.  Very rarely did rounds take place without one or both of Hailey’s parents by her side advocating for every aspect of her care.  Everyone knew who Hailey was – and your day just wasn’t complete unless you came by to see her and her parents and at the very least inquire about how things were going.  Colin and Janet quickly became immersed in the N.I.C.U. culture but, never did they once forget to say “hi” to anyone passing by, offer a ride to a parent who was going back to Ronald McDonald House, to ask another parent “how are you doing?” or to introduce themselves to new parents when they arrived in the unit.  Even when times were not going well – they always found the courage to be there for others, seemingly forgetting the unfairness of their situation to help others.  To say that Hailey and her parents were loved would be an understatement.  To many of us, they were the bright spots in our otherwise hectic and sometimes rotten days.  It is difficult walking by Bed #11 and not seeing all 3 of them there.  The sun just isn’t shining as brightly in that corner of the nursery.

Walk-a-bouts as we call them – where we cuddle up a baby and show them off to one another were something of a rarity for Hailey as she was usually attached to one thing or another.  Well, on this one particular night – a couple of her night time aunties decided (with Colin’s help) that Hailey should go on a little “road trip” to visit her Mommy in the Bonding Room.  Hailey had had a good day and had done well with her bath –she could tolerate a little time away from the “crib”.  Hailey was put on nasal prongs and a portable oxygen tank was pulled along side.  Off the little convoy went to meet Mommy.  Was Mommy ever surprised when the door opened and she saw her little girl at the door!  A little quiet, “alone as a family” time was the perfect way to end this particular evening.

Remember earlier when I mentioned that Hailey was a bit of a Diva?  I’m sure all of her “Aunties” remember the MIRROR.  This girl LOVED to admire herself in her mirror.  She could stare at herself for hours!!!!  Often, she would fall asleep just looking at herself.

Now Hailey was prone to “meltdowns” as we affectionately call them.  For Hailey – they would usually be precipitated by something you were doing to her as part of her care; but, the funny thing here is – during these attitude bursts – as soon as you would put the mirror in front of her, she would pause – check herself out – “yep, I still look good even when I’m in a mood” and she would stop crying.  The Hailey in the mirror became known to all as “Hailey too”. This mirror became part of your care plan – if you were going to change Hailey’s position, or suction her, change her diaper, etc. – you’d better have the mirror ready and in the appropriate spot BEFORE you did anything else.

Hailey definitely had her favourites when it came to her “things”.   She loved to look at just about anything but; in particular she loved her Fisher Price Aquarium that an “Auntie” had purchased for her at Christmas.  This quickly took the place of the beloved mirror – as by this point Hailey “KNEW” she looked beautiful all the time and therefore, just didn’t need to keep checking herself out.  Stationary Nemo, Lola the lobster and Hailey became fast friends.  Jiggers, the colorful lion/dog spindly legged thing, was another favourite of Hailey’s as he would always talk to her in a funny voice.  He especially liked to give her kisses on her neck and make her laugh (so much so that she would need lots of suctioning after a visit from him).  And who can forget the yellow duck that watched over Hailey from the head of the bed each night while she slept.

Now as Hailey grew older – and she realized her sparkling, expressive dark eyes (she got these from her Mom) and her unbelievably long eyelashes could be used to attract some of the infant male population to her bedside – she took full advantage of this.  Riley and Matteo, and several other boys whose names I can’t recall, were frequent visitors to her bedside.  Now don’t panic; this was all above board – Mommy and Daddy were always present on nights when Hailey invited boys to her “crib”.  Of course, Hailey did most of the talking, because we all know, boys will be boys – but, clearly she was a heartbreaker from the get go.

The foot!!!  Well, this was a Hailey trademark.  Whenever she was awake that foot was almost always in the air.  Some felt that this was Hailey just practicing her ballet moves – I have my own take on this – we all knew Hailey was a very particular girl – she liked things just so – she especially enjoyed smelling nice.  I believe, when her foot was in the air – she was saying “hi” – yes, but, she was most likely asking you to smell her foot to make sure it didn’t stink.  However, Mommy’s theory is by far the best – she simply wanted you to kiss her little toes.  Something Mommy and Daddy did on a regular basis.

From feet to hands!!!!!  There are many stories here too…

“Hailey Houdini” was a master at working her way out of her “mitts”.  No matter how well you “thought” you had put them on – Hailey always found a way to get them off whenever you weren’t looking.  When the mitts came off, the next thing you knew – she had her endotracheal tube in a tight grip or her feeding tube clasped in her hands or the tapes securing her ETT to her face almost all the way off .  Then came teething whereby Hailey insisted on trying to have both of her hands in her mouth.  She had this way of flashing you the most mischievous grin while she was doing all of this so it was very hard to scold her but, as a result, we had to institute the “supervised play time rule” whereby her hands could be free – but, you would have your eyes on her the entire time.  And who could forget how she would tell you she was getting tired.  The hands would start waving in the air, circling her ears – “I’m getting tired – time for bed”.

Those “teeth”.  How she worked and worked to cut those tiny little “chiclets”.  You could almost guarantee that whenever her temperature spiked, her cheeks were red, or she was a little bit moody – she was getting another tooth.  Oh, but, when they came out - was she proud of them!!!  She would show them off to you whenever she could.  With the addition of those pearly whites – her mischievous grin became even harder to resist.

Later on in her life it was apparent that Hailey was developing a taste for the “classics”.  Books, movies and music – all had their place in Hailey’s daily life.  Her taste for fine “literature” was evident in some of her favorites such as; The Gruffalo, I Love You This Much, The Velveteen Rabbit and No Matter What.  She loved to listen to Mommy and Daddy read these stories to her as they always made funny voices that made her smile and laugh.  One night after bath time – Colin and Janet decided rather than reading to her they would put a movie on for Hailey – “to see if she would like it”.  I’m pretty sure Hailey didn’t blink for the first 10 minutes of “Finding Nemo” – she was absolutely entranced by all the colors and the movement.  This is probably one of my most favorite moments – Colin and Janet sitting side by side, leaning over the crib watching a movie with their daughter as it should be.  All that was missing were the pajamas and the popcorn!!!  From that point on – Hailey considered herself to be quite the movie buff.  Now, having said that – she was not particularly fond of the scarier parts in any movie – nor, did she like the credits at the end of the movie.  Scary parts were just not necessary and credits – well, who needs them?  If Hailey was crinkling up her nose, and her nose was starting to get red, she was beginning to cry and her vital signs were changing – chances were good that a scary part of the movie had just come on – or the movie itself had ended and the boring old credits were rolling.  Now some of you may think that this was simply coincidental however, those of us that witnessed the wide-eyed; non-blinking Hailey watching any of the other parts of the movie would have to respectfully disagree – quite frankly, Hailey knew the difference.

Music was another constant in Hailey’s life.  Her little iPod was always playing while she slept.  All her “aunties”, at one time or another could be heard humming the melody to such favorites as “ Twinkle, Twinkle Little Star”, “Baby Beluga” or “Swing Low Sweet Chariot”.

As you all know, Hailey and her parents made a trip to Edmonton.  The hope of everyone was that there would be answers to why Hailey was having repeated difficulties.  There was a collective sigh of relief when we learned that she no longer had Pulmonary Hypertension.  The medications that she was on had apparently done their job.  But there were still no clear cut reasons as to why she could not gain weight and breathe without the assistance of a ventilator.  There were theories, and “what ifs” but it was becoming more and more apparent that Hailey was losing ground.

Challenge after challenge presented themselves to Hailey all throughout her short little life and with her parents at her side and with such bravery she faced all of them “head on”.  But her little body was struggling to keep up with all that was coming at her.

At the end of February, Hailey developed a blood infection.  Surprisingly, this was the first of this type of infection for Hailey in all the months she was with us.  She seemed to “come out” of this scare relatively intact, seemingly not having the many complications babies who develop sepsis can have.  What we had all hoped was that Hailey, once again, would pull through.  Sadly this was not to be the case.  Hailey’s weakened little body had had enough.  She just couldn’t muster the strength needed to get well.  Not this time.  And with the blessings of her parents and their unconditional love for her – cradled in their arms, on the morning of March 23rd her Mommy and Daddy sadly said “good bye”.  Peacefully Hailey slept.

There is no foot so small that it cannot leave an imprint on this world.

Hailey
Thank you for teaching us what it is to be a fighter.

Thank you for reminding us to go home every night and cherish those we love.

Thank you for teaching us to say “I love you” and to not be afraid to show it.

Thank you for reminding us that there is a little person underneath all the tubes, wires, bells and whistles that is the N.I.C.U.

Thank you for reminding us that this little person represents all the hopes and dreams of her parents and for the future of the world.

Thank you for reminding us to laugh and smile.

Thank you for showing us that not all days are bad ones and that you need to remember the good times too even when you may not want to.

Colin and Janet
Thank you for the gift of Hailey.

Thank you for allowing us to be a part of your lives – through the good and the bad.

Thank you for showing us what it is to be a family and to love with all your heart – not just your head.

Thank you for reminding us that there is always hope even in the face of diversity.

Thank you for showing us what it is to love with no agenda and no strings attached.

Thank you for teaching us what it is to parent in a very non-conventional setting and to do so with such strength and courage.

Thank you for reminding us that the very best advocate a child can have is the unconditional love of her parents.

 

Hailey – if one’s life can be measured by how much you love and are loved in return – then baby girl; Hailey-Bean – you are destined to live a thousand lives.  The hearts of all who have been privileged to love you will carry the spirit of you with them forever and always.

And when you are done showing everyone up there the “Hailey way” come visit our hearts and dreams from time to time.  Let us know you’re okay and that we are getting it right down here.  Never forget how much you are loved and will be missed.

We love you to the moon and back, forever and ever and always.

Your N.I.C.U. family

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