Saturday, September 17, 2005

Don't cry because it's over...... Smile because it happened

Hello to all my friends and family, to those I don't know and those who I am about to meet!!!! This is a site dedicated to my son Carter John Dixon!!!!!!! I hope that you enjoy it!!!!

Just Wishes For Carter John

For seven years I wished,
For someone just like you,
And then one day you came,
My wishes all came true.

One look at you was all it took,
For me to fall in love,
With such a precious baby,
You must have fallen from heaven above.

They told me you weren't perfect,
But this I couldn't believe,
To me you were my angel,
It was something I couldn't conceive.

The doctors took you quickly,
To try to save your life,
All I wanted was to hold you,
The pain stabbed through me like a knife.

It took me just an hour,
Before I saw you lying there,
So many tubes and needles,
It was more than I could bear.

They told me you couldn't feel it,
That they had taken the pain away,
But I saw it in your eyes,
What you had to deal with every day

For such a small little man,
You gave it quite a fight,
Each morning that you woke up,
I thanked God you made it through the night.

It took you just one month,
Which wasn't very long,
Just one month for you to heal,
One month and you were strong.

When we got to take you home,
It was another dream come true,
Surrounded by all your family,
Was all I wanted for you.

Then one day you stated to cry,
And everything went so wrong,
I tried so hard to fight for you,
I ready tried to be strong.

For hours we did everything,
Anything we could do,
But we finally had to face to facts,
And say goodbye to you.

It took just one moment to love you,
Just one look in your eyes,
It took just one moment to loose you,
To the heavens in the skies.


My name is Andrea and I am the proud mother of two beautiful children, Daphne who is now 7 1/2 years old and Carter John.....

My story begins with me meeting my husband Jesse. He is wonderful. When I met him I was a single mother with a 4 1/2 year old ball of energy. But he was so wonderful with her, I couldn't imagine becoming a parent for the first time at that stage in the game! We were married a year and a half after we met. We had all the same goals and dreams, most importantly we wanted more children. We were married in June, and got pregnant at the end of October, we were so excited to be able to expand our family.

My pregnancy was pretty uneventful, all the normal things happened, nausea, aches and pains, everything you would expect. We were looking forward to having our baby at home and were renovating the bathroom to accommodate this ( I wanted a big JACUZZI tub ).

All of my test results were fine at my 19th week ultrasound we found out we were going to have a boy, Jesse was so excited. The midwives had called several weeks later to say that they were unable to get a good shot of the heart. I had assumed that it was because the baby was so active during the ultrasound, and at that point no one had any real concerns I just had to have another ultrasound taken. I thought that it was great that I would be able to see my baby boy again, to see how much he had grown. At that point everything was wonderful.

May 5th, 2005, 31 weeks into my pregnancy my world came to a crashing halt. We found out that there was a problem with the heart, and no one could tell me what. We had to go to the High Risk Pregnancy Clinic at Mount Sinai Hospital in Toronto to have further testing. At our first appointment there the sonographer told us that it looked like HLHS - Hypoplastic Left Heart Syndrome, I had no idea what that meant. When we talked to the high risk OB, he gave us three options;

1. Terminate the pregnancy, I immediately said NO

2. Comfort Care, where my son would be born at term, but that there would be no medical intervention and that he would likely die within a week or two. Again I immediately said NO. At this point I was getting mad that no one wanted to fight, and I couldn't understand why.

3. A series of 3 surgeries all done with in the first 3 years of his life where they would reconstruct his heart, at this point I started to relax a little thinking this could be on viable option for us.

The 4th option was transplant, ands to be perfectly honest that is when it hit me just how serious things were.

I think at that point I completely tuned out, turned off the world around me. I was so scared, and then the guilt set in. I was so afraid that it was something that I had done, so afraid that I couldn't even ask the doctors what the cause of this disgusting disease was, thankfully Jesse did. We learned that it was a result of anything we did, it was just a freak of nature the way or genes formed together.
When Jesse and I went home we discussed all our options, but for me there was only one, reconstructive surgery, I thought at least then we can save the transplant for back up.

We spent the next 8 weeks back and forth between home and Toronto, at Mount Sinai for weekly ultrasound and Sick Kids Hospital for biweekly Echocardiograms. All of the testing showed us that our little boy was on the very sever end of the scale, they thought he might need to have a balloon catheter inserted into a valve because it appeared to be narrowing. At one point they wanted to do an emergency C-Section, but thankfully we were able to wait until I was 39 weeks along.

On July 11th I was scheduled for induction, we arrived at the hospital and were told to go home because there was not a bed for the baby at Sick Kids, and that they would call us when there was. The next afternoon we got the call to come in. Our baby's bed was waiting for him. They started induction on the Tuesday evening. It was a terribly slow process that was not helped by my impatience to get things going. But at 2:05pm on Wednesday July 13th, 2005, My son, Carter John made his entrance. He weighed 6 lbs 4 oz and was 19 1/2 in long. He was perfect.....except for his heart.

He was beautiful, you would never have known that there was anything wrong with his tiny little heart. He was taken immediately to make sure he was stable, and half an hour later I got to hold my son for the first time. It was magical, our whole family was there, both my parents Jesse's parents and my daughter Daphne, I was so happy she made it because she wouldn't be able to see him while he was in CCU because they have age restictions. The way that she stared at him made my heart soar, she was so proud to be a big sister. After that he was transferred to Sick Kids Hospital in Toronto, which is right across the street for Mount Sinai, the whole family followed him over and I called family in Manitoba and the States to let them know Carter John had arrived.

When Jesse came back over to see me, he told me that they had to intubated him because the drug, prostaglandin, which prevented the ductus from closing, was also surpressing his ability to breath. He looked so scared. A little while later I was taken to see him, it was awful seeing all those tubes and lines going into his body, it was hard to imagine that he wasn't in pain. But the nurses assured me he wasn't and that he would be monitored very carefully for that.

After he was born we "enlisted" Carter John into several studies that would allow them to use his medical information for further research on this terrible disease, and possible help other children. One of the studies required that he have an echocardiogram done the night before his first surgery, and thank GOD for that, because they detected a blood clot in his aorta that may have taken his life if they didn't get the blood thinners on board immedealy. At 8 days old Carter John had his first surgery The Norwood with a BT Shunt and everything went famously, they took out the clot and there weren't any further complications at that point. The surgeon Dr. Glenn Van Arsdell was very upbeat( which for him was surprising).

He returned to CCU for recovery which for the first 5 days seemed to go really slow, but then after that, they started removing things one by one, you would never imagine the excitement that get from going down from 13 to 12 different drugs. Eventually he was weaned down to 1 drug intravenously and 3 orally, the drains were removed from his chest, and finally the big day...... he was extubated, and Jesse and I was able to hold him, I hadn't been able to do that since the day he was born and this was Jesse's first time.

During this time Jesse and I had been living in Waiting rooms and the Parent rooms at Sick Kids, we had been waiting to get into Ronald McDonald House. The day before he was transferred upstairs we got in. It was a Godsend. We had our own space and our own bathroom (that was the best part). Once we got in there Daphne was able to stay with us, they had programs and outings for her to do, she even got to meet Destiny's Child ( I would post that picture but I don't think I'm allowed to!!!!) I must say that I don't think that I would have made the stay at the hospital with out the generosity of Ronald McDonald House and it's staff and volunteers.

A week and a half after his surgery he left CCU and went upstairs to the cardiac floor. He went into a room called "the step-down room". That was great because Daphne was able to see him for the first time in almost 3 weeks. She was so excited. He spent 2 1/2 days there before he got his own room. There Daphne got to hold him for the first time. It brought tears to my eyes to see my Daughter and the love she had for her brother.

It was one week later when we got the best news ever..... Carter John was going home. I couldn't believe it. We were originally told that he could be in hospital for 6 - 8 weeks after surgery, best case senario, but to be prepared for him to have to stay until his next surgery. It was a little scary the prospect of bring such a fragile child home, so many fears re-emerged in me, the biggest being what if something went wrong at home. The staff at Sick Kids were great, they trained us on the medications that he was on, how to give injections (he would need 2 daily), how to change his NG tube (a tube that goes from the nose directly into the stomach for feeding), signs to look for and what to do should an emergency arise. They really were fantastic. On August 11th we were ready, we packed up and ran out the door!

Carter John's Last Day In Hospital

When we got home things were great even despite our lack of sleep. Jesse was a doting father, it really touched me to see the two of them hang out together, Daphne wanted to help with everything, even the stinky diaper changes!!! It was great, I love being a mum. Although we were home, alone, trying to care for or new addition, preparing for school to start for Daphne, and juggling one doctors appointment after another, we were so happy. All his check ups were great he was gaining a pound a week, which blew every one away, most kids do not thrive as he was thriving. September 6th, Daphne started her first day in grade 2, I walked her to school with Carter John in his stroller, when we got to the school she just had to show everyone her new baby brother, I have never seen her stand so tall, or look so proud as that day. I picked her up from school that day and we had a great family dinner, a perfect end to a perfect day.

The next day started pretty much the same, I was trying to establish some sort of routine that the whole family could cope with, Daphne got ready (with just a little pushing and help) and I got Carter John ready. Out the door we were by 8:15 am (I was quite impressed, outings no matter how short are difficult to orchestrate with a baby)I dropped Daphne off at school, reminding her that I would be picking her up at lunch and she would come to Carter Johns doctor's appointment with me. After a quick kiss she was gone off with her friends. I walked home with my neighbor all of us talking about how well Carter John was doing. At 1pm I picked up Daphne and we were off, during the drive there we chatted about her teacher and who was in her class, even the boy she has a crush on (much to her despair)At 1:40pm Carter safely tucked away in his carseat started to cry, and boy what a cry. He had initially come home with a very weak cry as a result of being intubated, but boy had he found his voice! Daphne being the enormous help that she was tried everything to no avail. His soosoo, a bottle even offered her finger to suck on, as we were only 5 minutes away from my parents house where Jesse was waiting for us, I stepped on the gas and let him cry. When we got there he had just started to settle down, however his colour was awful and he felt very cold. I took him out of his carseat and rocked him back and forth all the while patting his bum..... he loved that, but I was very worried. We then got back in the car and drove to our family doctors office. During the appointment I brought up the "episode" that we had in the car and tried to think of something that could be causing it, but the doctor suggested that could "JUST BE WHAT HAPPENS WHEN HE CRIES, AFTER ALL HE WAS NOT A HEALTH BABY AND HAD JUST HAD SURGERY". I was still somewhat concerned but he had calmed down and his colour was getting better, I thought maybe it was the air conditioning in the car that mad him feel so cold. I though, well I will bring it up on Friday with his cardiologist, and see what he says. So we left to go home.

The drive home usually took an hour, we were having a great time singing and being silly, I love having the whole family together. About half an 45 minutes into the drive, Carter John started to cry again, just like before...... full out tantrum. Again Daphne tried to calm him down trying all the usual tricks...... nothing. We pulled over and Jesse got in the back with the kids and he too tried to calm him down....... nothing. Again we pulled over and paced outside with him, rocking and patting his bum....... nothing. I remember thinking at least we got 8 great weeks. I started to really worry at that point and we decided to just drive to Jesse's parents who only live 5 minutes away. When we got there Carter John was once again really, really cold and his colour was terrible. We called Sick Kids and they told us to take him immediately to the local hospital. I called the hospital to have them call the pediatrician on call, they wouldn't until he was assessed, We decided then to call and ambulance because it looked like things were going form bad to worse. The ambulance got him to the hospital in record time.

The pediatrician was called immediately (surprise surprise) and they started arranging transport to Sick Kids via Air Ambulance, with the chopper on the way his vital signs started to drop. His core temperature was 33.4 C well below the temperature where hypothermia sets in. The doctors did everything they could to get him stable so they could transport him, but they couldn't. After 25 minutes of resuscitation, we decided to let our son go. It was the hardest thing I will ever have to do. At 10:30pm on Wednesday September 7th, 2005, I said goodbye to my son forever.

We had him baptized and I held him for a long time, then I passed him to Jesse. His parents arrived (mine were unsuspectingly flying home from Brazil)they held him and an entire family mourned together, it was so powerful.

His funeral was on Monday September 7th, 2005 it was beautiful. The minister was amazing, we sang Jesus Loves me and a pianist played this little light of mine, My mother read a poem, Jesse had prepared a beautiful speach and the minister read a book written by a child on the loss of his little sister. A family friend piped Amazing Grace in the church, and then turned and marched right up the center isle and out the front doors, the entire congregation followed with at least 250 blue and white balloon, we took them all out side and waited while the piper finished Amazing Grace, and the church bells rang. A huge gust of wind came and we all released our balloons up to heaven for Carter John. As sad as it was Jesse and I felt content, almost at peace, I hope my son does too.

I was so prepared for the birth, life, battle and death of my son, we always knew he would go before us, but we never thought it would be so soon. His little body was sent to Sick Kids Hospital, in Toronto, before he was cremated, I can only hope that one day the doctors will be able to learn some thing valuable from him and help another fight the battle that took my son. Jesse and I feel privileged that we were able to know such a brave soul, he taught us so much. Especially how important it is to love your family and cherish every second you have with them.

I created this page so that others can prepare themselves not for the death of a child but for the journey they have ahead. So many children have fought and won the battle with Congenital Heart Defect like HLHS. I survived this battle by drawing strength from strangers, friends, family, the doctors, nurses, and staff from Sick Kids, as well as the staff and volunteers at Ronald McDonald House. I hope that others can do the same. If anyone ever wants to contact me please do, my email address is

In memory of Carter John Dixon
July 13th, 2005 - 2:05pm
6lbs 4oz

received his wings
September 7th, 2005
Sadly missed by Mummy, Daddy,
Grandma and Grandpa, Mamma D and Papa D
and Big Sister Daphne

If anyone is ever looking for a charity to donate to or volunteer at please consider the following:

Sick Kids Hospital

Ronald McDonald House

December 5th, 2005

Christmas is just around the corner and with that will also come the new year. I am not really looking forward to this season, for this would have been my sons first Christmas and it will be sad to spend it with out him.

I have had to live with out him for only two months but it seems like it has been an eternity...... I have started seeing a counselor, I think it is helping but I also seem to be stuck on one of the stages of grief...... ANGER. I have started the process of filing a formal complain against or family physician, as I explained in my first post..... he saw my Carter John that day and brushed off my concerns as if I were over reacting. I am not sure if it will help in my grieving process but, I don't think it can hurt it any.

This holiday season is another first for me.... it is the first Christmas that my whole family will not be together. I have several family members who are not from Canada, some from Texas and a couple from China, and it will be the first time in eight years that we will not all be together. Of all the years I wish for family and tradition this would be the one.

So instead we are going to start some new traditions. We are going to release balloons in honor and in memory of my Carter John, and my husband (Jesse) my daughter (Daphne) and I are going to spend Christmas morning together just the three of us. It certainly will be different. I am going to cook a traditional Christmas dinner and invite my parents and in-laws.

I have learned so much in the past six months while going throughout this terrible ordeal. I have learned that I have some pretty incredible friends. Some that I have known for years, some that I have only gotten to really know recently and some that I have just met. I have also learned that not everyone is a true friend..... there are those who will always be there and some who will take a hike when the going gets tough. But I have realized that I have an incredible support system, and that I am incredibly lucky.

My friends and family who stood by me during the tough times deserve the world..... I wish I could give everything to them. Instead I pray that they will know just how greatful I am and how they were my earth angels during my time of need,
and I thank you,
I thank you so much from the bottom of my heart.

December 24

One day to go and I still am very sad that my little man did not get to have a Christmas. Everytime it snows I think about him. I wish that I had been able to just pull him around in a little sled just once, but we didn't. But we are lucky in other ways.... we have our angel who shines down on us every day. We have our family who although are separated this year are still together in spirit.

We have recently heard from the College of Surgeons and Physicians surprise.... surprize, the doctor that saw Carter John the day that he passed away is denying everything. Our concerns, the state that he was in and the questions that we asked. Everything..... now starts the he said she said's and the battle is on. I am finding it very frustrating that the doctor can not own up to his mistakes. I am am not surprized but it is still very frustrating!!!!!

I hope that all of you are well and have a very Merry Christmas, and a Happy Ney Year

February 13th 2006.

The new year is already starting to fly by, Daphne is turning 8 tommorow. I can hardly believe it.
She had a few friends over for a small spa/makeover birthday party it was a blast!!

Well the Autopsy report is done and it was fount that there was a blood clot in the BT shunt. It was 95% occluded and had started to migrate into the pulmonary artery. The results are what we were expecting but it is nice that small part of the process is over. Now we are focusing on the investigation of our family doctor, hopefully the autopsy report will help with that. The whole process is a very slow process so in the mean time Jesse and I have been streaming along making changes in our local hospital and at The Hospital for Sick Kids in Toronto. We are eventually hoping to try to make changes nation wide and will try to initiate up a bracelet system issued by Sick Kids Hospital to give pertinent information to local area hospitals (similar to a medic-alert bracelet). We are hoping to call it a CJD bracelet after Carter John. Again this will not be a quick process!!!

I have found myself more ast peace lately, less stress and sleeping much better! Even my hair has stopped falling out! I have added a few lyrics to some songs that I have found helpful in the healing process!

I hope that everyone is well and that my story and subsequent messages are helpful to someone.......

Thinking of you all


Iris – Goo Goo Dolls

And I'd give up forever to touch you
Cause I know that you feel me somehow
You're the closest thing to heaven that I'll ever be
And I don't want to go home right now

And all I can taste is this moment
And all I can breathe is your life
Cause sooner or later it's over
I just don't want to miss you tonight

And I don't want the world to see me
Cause I don't think that they'd understand
When everything's made to be broken
I just want you to know who I am

And you can't fight the tears that ain't coming
Or the moment of truth in your lies
When everything seems like the movies
Yeah you bleed just to know your alive

And I don't want the world to see me
Cause I don't think that they'd understand
When everything's made to be broken
I just want you to know who I am

I don't want the world to see me
Cause I don't think that they'd understand
When everything's made to be broken
I just want you to know who I am

I just want you to know who I am
I just want you to know who I am
I just want you to know who I am
I just want you to know who I am

Get To Me - Train

Well an airplane's faster than a Cadillac
And a whole lot smoother than a camel's back
But I don't care how you get to me
Just get to me
Parasail or first class mail
Get on the back of a Nightingale
Just get to me I don't care just get to me
Prokeds, mopeds take a limousine instead
They ain't cheap but they're easy to find
Get on the highway point yourself my way
Take a roller coaster that comes in sideways
Just get to me - yeah
Go on hitch a ride on the back
of a butterfly
There's no better way to fly
To get to me
I look around at what I got
And without you, it ain't a lot
But I got every, with you, everything
Maybe you could pollinate over the
Golden Gate
Take a left hand turn at the corner
Of Haight
And then a sharp right
At the first street light
And get yourself on a motor bike
And if you think you'll get stuck in a
traffic jam
That's fine, send yourself through a telephone line
It doesn't matter how you get to me
Just get to me
Cause after every day
The wind blows the night time my way
And I imagine that you are
Above me like a star
And you keep on glowing
And you keep on showing me the way

Calling All Angels – Train

I need a sign to let me know you’re here
All of these lines are being crossed over the atmosphere
I need to know that things are gonna look up
Cause I feel us drowning in a sea spilled from a cup
When there is no place safe and no safe place to put my head
When you can feel the world shake from the words that I said
And I’m calling all angels
And I’m calling all you angels
And I won’t give up if you don’t give up
I won’t give up if you don’t give up
I won’t give up if you don’t give up
I won’t give up if you don’t give up
I need a sign to let me know you’re here
Cause my TV set just keeps it all from being clear
I want a reason for the way things have to be
I need a hand to help build up some kind of hope inside of me
And I’m calling all angels
And I’m calling all you angels
When children have to play inside so they don’t disappear
While private eyes solve marriage lies cause we don’t talk for years
And football teams are kissing queens and losing sight of having dreams
In a world where all we want is only what we want until it’s ours

And I’m calling all you angels
(I won’t give up if you don’t give up)

Home – Michael Buble

Another summer day
Is come and gone away
In Paris and Rome
But I wanna go home
Maybe surrounded by
A million people I
Still feel all alone
I just wanna go home
Oh I miss you, you know
And I've been keeping all the letters that I wrote to you
Each one a line or two
"I'm fine baby, how are you?"
Well I would send them but I know that it's just not enough
My words were cold and flat
And you deserve more than that
Another aeroplane
Another sunny place
I'm lucky I know
But I wanna go home
Mmmm, I've got to go home
Let me go home
I'm just too far from where you are
I wanna come home
And I feel just like I'm living someone else's life
It's like I just stepped outside
When everything was going right
And I know just why you could not
Come along with me
But this was not your dream
But you always believe in me
Another winter day has come
And gone away
And even Paris and Rome
And I wanna go home
Let me go home
And I'm surrounded by
A million people I
Still feel alone
Oh, let go home
Oh, I miss you, you know
Let me go home
I've had my run
Baby, I'm done
I gotta go home
Let me go home
It will all right
I'll be home tonight
I'm coming back home
Had a Bad Day -

Where is the moment when we need it the most
You kick up the leaves and the magic is lost
They tell me your blue sky's faded to grey
They tell me your passion's gone away
And I don't need no carrying on

Stand in the line just ahead of the law
You're faking a smile with the coffee you go
You tell me your life's been way off line
You're falling to pieces every time
And I don't need no carrying on

Cause you had a bad day
You're taking one down
You sing a sad song just to turn it around
You say you don't know
You tell me don't lie
You work at a smile and you go for a ride
You had a bad day
The camera don't lie
You're coming back down and you really don't mind
You had a bad day

Well you need a blue sky holiday
The point is they laugh at what you say
And I don't need no carrying on

You had a bad day
You're taking one down
You sing a sad song just to turn it around
You say you don't know
You tell me don't lie
You work at a smile and you go for a ride
You had a bad day
The camera don't lie
You're coming back down and you really don't mind
You had a bad day

Sometimes the system goes on the blink and the whole thing it turns out
You might not make it back and you know that you could be well oh that
Well I'm not wrong

So where is the passion when you need it the most
Oh you and I
You kick up the leaves and the magic is lost

Cause you had a bad day
You're taking one down
You sing a sad song just to turn it around
You say you don't know
You tell me don't lie
You work at a smile and you go for a ride
You had a bad day
The camera don't lie
You're coming back down and you really don't mind
You had a bad day