The Life Of Nolan

January 21...1 year later...

2012-01-21T09:08:00.000-08:00

Continuing on from my last post...Nolan had a great early morning january 21 2011, nathan and i woke up to dr.M standing over nolans crib having a good laugh,aparently nolan was so content he didnt even wake us up! he was smiling away at Dr.M! i wish i would of took pictures.Nolan got a great report and we were told he is doing much better and even sounded clearer despite having,RSV,Bonchilitis,Double pheunomnia(bacterial and viral),and a partial collapsed lung the night before.The collapsed lung sounded like it inflated over night.Nolan had great air entry all round, we were thrilled!

Around 3pm that afternoon, we had to switch rooms because they agreed nolan should have a nurse in the room 24/7 till he was completely out of the woods, considering he was keeping the entire unit on their toes we couldnt disagree.So during the move, nolan was "crashing" once again...the same thing happend as the night before, stats dropping and he fell unconcious..again.When they put the nose mask on (at this point he was using a nose cannula and a mask) to get his oxygen levels back up he wasnt waking up, they tried digging in his shoulder and got nothing, they tried pinching him and still nothing.A doctor turned around and asked "is this normal for him" i snapped back and said "if you were this sick how would you be?" so they continued on...it took nearly 4 epis (medication blow by to expand his airways) to stableize him.They even had the "red cart" which is something you never want to see, its the crash cart.

So on with the move we went...Nolan was now sharing a room with a little boy who also had RSV...i wasnt too happy and immediately said "nolan does not need to be exposed more germs if this other boy has something else too" i was very upset.By that time it 4 pm...after the move i picked nolan up and held him, he was looking deeply into my eyes so calm like he wasnt even sick.Just perfectly calm and at peace in mommys arms.We sat there for a while in that rocking chair, untill it was medication time.Nolan was on the strongest antibiotics a child could have, this was suppose to help.I had mentioned that nolan hadnt peed really and never had a bowel movement since 3 days ago...They said it was cause nolan using up everything they had put into him, he could not keep anything in his little tummy everytime he had a stressful episode they would vent his G tube and drain whatever was in there.His tummy was shrinking :(

Around 5:40ish i recieved a call from aa fellow trisomy 18 mommy..we had talked for a while about things...it was maybe around 6;20 that i had to let her go.I walked into the room and noticed nolans heart rate was 210...i asked nathan if it was this high the entire time i was gone...he said no just now...So i said to the nurse he cant have this high of a heart rate...nolan was sweating and very uncomfortable..i picked him up and tried rocking him and talking to him...he was swinging his arms and fighting as hard as he could, something was not right.I said loudly to the nurse"you need to get rapid response team in here now something is wrong" ...

Not even 3 monutes later they all rushed in by his side doing things...taking blood gass,taking temp (which was high) he was given motrin 40 mintues prior and it didnt work, nolans o2 dropped again he was now on 20litres of oxygen to get to 70% i was in tears i knew something was happening but i didnt want it to happen,His blood gases came back perfect, they were all puzzled a child using 20 ltrs of oxygen should have a horrible blood gas...the only explanation after checking his pupils these words will never leave my head the doctor says "his pupils are pinpointed" meaning they werent responding to his eyes being closed and then opening to the light.His body was compinsating at this point.I said he needs to be intubated i need another opinion...

They started bagging him, he finally woke up...but looked so so horrrible...pale,blue lips and all...It was scary.The doctor called down to the PICU and nolan was rushed to attempt a Cpap to get him stable and then discuss intubation..The bog doors closed behind him and we were told to wait...not ever 5 minutes later the nurse ran to get us...i had this hope of "omg he is okay" but at the same time the look on her face wasnt that.We went into the room...clentching his blankie tight tears rolled down my face...my baby was dying right in front of me...things wer being called out doctors nurses everyone rushing around to get things to help him...they were trying hard...and then Dr.M was up by nolans head calm as can be looking him over checking his air way, suctioned him, which was scary cause all i see was blood in that tube...he was already so far gone..to the point of no return...my heart was pounding.We got called out for a moment to collect our thoughts about intubation ...not even 60 seconds later a nurse was running after us to come back...another thought"omg he is okay" untill we walked in..

He was laying there his feet and hands were blue, all i could say was "enough" everyone left him alone, and i was picking him up to hole him, my knees were weak, i was crying hysterically, gagging, i felt like it was dream and someone should wake me...his body was soo hot, he was calm so peaceful,he took 5-7 last breaths in my arms.I told him we loved him so much, and that he changed us with his journey, i thanked him for teaching us,i told him everyone loved him and that it was okay if he had to go...He went so beautifully i couldnt have asked for it be different, his pediatrician stayed the entire time...6:40pm Nolan was gone.We bathed him, did moulds,prints, held him for 8 hours.Our family also got to hold him, one of the hardest things was telling lexi when she came that her little brother died.She didnt understand (i knew that).When it was time to go, the seperation was so difficult i could of stayed with him all night.

A year later and we are still going on strong we miss him dearly but we know he is in a much peaceful place now..he will live forever in our hearts.

The night before.

2012-01-20T16:35:00.000-08:00

Its 5:44pm January 20th this night 1 year ago was scary, its was just nolan and I ,daddy was working.Nolan started crashing around this time something i will never forget, his oxygen just kept dropping so doctors and nurses rushed in to get him stable, i could barely see what was going on with all the tears i was trying to hold back.I walked to the only spot to him, his feet.I held one tight and told him to hang on just for alittle while just untill daddy got some cuddles.It so hard watching him not respond to anything,a doctor at one point turned around and said"what else do you want us to do?" i said "just help him!". After about 5 minutes of this finally Dr Mcgonigle walked in, just in time...Nolan perked up as soon as he took over! it was amazing how he responded to him.Dr.M jokingly said "he just wanted me to come visit him, he missed me!" and i agreed.

So once nolan got stable and was given a med to help calm him so he could rest, i broke down into dr,M's arms and asked him if nathan and i are making a good a choice to not intubate if he did get worse.He assured me that we did , that if nolan were to get progressively worse that intubating would make things worse in the end.I called nathan immediately to come up since i didnt know how the rest of the night would go.And i was scared to be alone.Daddy finally arrived shortly after 11:00pm he scooped nolie out of my arms and rocked him while they watched T.V one last time...we stayed up most of the night untill nolan settled and fell asleep on his own.

Over night nolan had no episodes! he did so well...continued tomorrow...

The Cord.

2012-01-16T09:07:00.001-08:00

We are connected,
My child and I, by
An invisible cord
Not seen by the eye.

It's not like the cord
That connects us 'til birth
This cord can't been seen
By any on Earth.

This cord does it's work
Right from the start.
It binds us together
Attached to my heart.

I know that it's there
Though no one can see
The invisible cord
From my child to me.

The strength of this cord
Is hard to describe.
It can't be destroyed
It can't be denied.

It's stronger than any cord
Man could create
It withstands the test
Can hold any weight.

And though you are gone,
Though you're not here with me,
The cord is still there
But no one can see.

It pulls at my heart
I am bruised...I am sore,
But this cord is my lifeline
As never before.

I am thankful that God
Connects us this way
A mother and child
Death can't take it away!

Author Unknown

The memories of you...

2012-01-14T13:23:00.000-08:00

I have a heart full of memories
That's all I have left of you
Each one treasured fondly
With all the things
We used to do.

I have a beautiful angel
In heaven high above
A beautiful beautiful angel
I was blessed to love.

School in Whitecourt!

2012-01-06T16:05:00.000-08:00

Well sweet little man, mommy started school this week at Norquest! its now the weeekend! I am so thrilled to tell you i cant wait to become a nurse...its all because of you Nolie...We missed you so much this christmas i think i cried everyday wishing you there to celebrate and open gifts beside you big sister...it was hard.There was a huge empty spot in the morning :( but i felt your spirit so it made me go on and stay strong for our family.I cant beleive it will be 1 year in just a couple of weeks you had to go on and start your new journey up above...we will be sharing that day with family and just simply remembering all the times with you.We love you sweetie im still so proud of you. xoxoxoxox

"Remembering our Children"

2011-11-07T12:14:00.000-08:00

Well sweet boy, yesterday was a very special day for us as we attended this annual event for families to have a chance to share their angels and their stories.It was emotional but it was great to have your book and pictures out to show them you! We met up nalahs mom,dad,sister and aunty before hand, it was good to see them again.We talked of you both and shared the funny things you guys did, we miss you both so very much.

At the service we were able to write your name on a star and when your name was called we went up and sister put your star on the tree, then mommy talked about you to everyone! I was so calm and had a sense of peace come over me when i spoke, it was great.I even read a poem.You were amazing nolan and still are, your life deserves to be shared with people, you are still teaching strangers and doctors because you deffied all odds! i love you so much, we will always miss you, but you will remain forever in our hearts sweety xoxoxoxox

Making you proud son.

2011-09-23T17:42:00.000-07:00

Dear Nolan,I first want to say that i miss you so much, theres never aday where i dont think about you.Your smile,your laugh,and the sparkle in your eyes are missed each everyday.I love you dearly.Mommy has something very special and exciting to share with you! today i went to Norquest which a college mommy will be attending for Nursing! I had lots of exams to write today to see what classes they need to place me in, im just so glad to finaly start this im doing it for you and your big sister, im going to make you both proud!It's because of you that im pushing forward with this career ,you taught me so much in your 19 months of life and now i want to make a difference and help the sick or injured.If i do things right i will be a Registered Nurse in a few short years, i dont care how long it takes or how hard it is, i know that its all going to be worth it! Your so amazing Nolan i will forever hold you in my heart xoxxoxo love, Mommy.

One of my tattoos in your memory

2011-08-30T20:59:00.000-07:00

Its been 2 months since ive had a good moment to write you, im always thinking about you especially when someone mentions your name, i just cant stop talking about all the things you used to do and what you accomplished in your 19 months.Mommy is sadend over the sudden death of your buddy Caleb he lived 29 months and 1 week he is amazing just like you, you both are brothers (twins) its crazy how much you 2 are alike.Im going to miss his sounds he made on the phone when i talked to his mommy.

I still cant believe its been 7 months my heart aches to have you here everyday.I know oneday i will have you again and untill that day im left here with your precious memories.Mommy got another tattoo in your memory its some lyrics from a song called "precious child" its so true for you.Mommy also got a tattoo for yoour sister cherry blossoms!Daddy got the teddy bears on your urn on his rist too!I hope your proud of mommy and daddy cause we are so proud of you son.Sister misses you dearly this morning i found her in your crib callin out your name and asking you if you feel better now.She said she made your tummy feel better.She speaks of you everyday we keep your memory alive nolie! Daddys heart is broken too he longs to see again i cant get over how much you look like daddy its amazing. I love you to pieces sweet boy xoxoxox love mommy.
P.S sister starts pre school in september!!

2 years already!

2011-06-25T22:23:00.000-07:00

Well today is your 2nd Birthday! You came into this world June 25 2009 at 2:29am...you defied every odd in your 19 months here on earth! Today was hard not celebrating with you but i know your always in my heart, daddy ,mommy and sister stil celebrated your life today, with family and friends.We had a BBQ,watched your video,listened to your songs,released balloons with 2 notes on them hoping someone will find them so we can raise more awareness about trisomy 18! and had cake it was a bittersweet day.I love everything about you, you have changed me for the better .I love you son. Forever.

You. Nolan.

2011-06-24T11:22:00.000-07:00

Wow! i cant believe today is the 24th...today 2 years ago we were getting ready to meet you, this time 2 years ago mommy was starting labour in the hospital.Straped to monitors and doctors around talking about the plan.I enjoyed hearing your heartbeat and feeling your last kicks and wiggles before you would enter this world.Daddy and me were terrified of the unknown since you had Trisomy 18 we were told your chances of living were only 5-10% but had hope you would make it just open your eyes and see us even it were a moment.You did it all big boy, tomorrows your 2nd birthday,sadly we are celebrating it without you...but i know you are in my heart it will be a day to remember you with family and some friends, although im crying i am smiling, smiling because you gave us so much to smile about, mommy is just sad that i cant hold you, wipe your tears away,change your diaper,bathe you,play toys with you,walk with you ...everything we did together i miss.But i thank you everyday for the memories you gave us, you are amazing and have touched so many in your short journey , and still are teaching people! We love you baby boy, your sister always talks about you, and is very protective over your things like if we have kids over and they go into your room and play with your toys she gets upset and ays,"thats my nolies toy!" she loves and misses you so much.

23 months my boy

2011-05-25T11:04:00.001-07:00

Well my Nolie Polie Olie you would be 23 months old today, last night mommy was crying holding onto you in your urn,with your blankie and sleeper in my arms as well.I just miss you so bad , please dont be mad at mommy for i am longing to hold you again. We talk about everyday wheather that be in the shower, in the car, outside, grocery store anywhere! pretty much everything we do reminds us of you little man because you did go everywhere! so those memories will be us everywhere we go.I feel sometimes i get this feeling a strong feeling like i can almost touch you when i close my eyes and think about you, your almost there in my arms.My dreams have been about you alot lately they are very real i can smell you, touch your hair,feed you, everything i should be doing for you i can in my dreams.I love those dreams i wish i never woke from them at times. I know sister is missing you badly we couldnt leave the house without the other day, she went to your crib and picked you out and said "we have to bring my nolie too" so we did! Daddy is also missing his boy alot, you are his twin it amazes me. Your 2nd birthday is next month June 25 im feeling scared but i know you will help through it, we are going to celebrate you but im going to miss you hard that day, you are just amazin little boy that made a huge impact on our lives.I love you for everything you did with your time with us, and forever im thankful for you. Love mommy,daddy, sister.xoxoxox

Your Strength

2011-05-08T23:13:00.000-07:00

Well today was Mothers day, I missed you the same just like everyday day Nolie.Saturday was a special day for me, i was nominated along with 19 other Fabulous mommies for Fabulous Mother of The Year, knowing we were all fab to begin with so nothing changed even when the judges decided.Mommy had to answer a question it was tough for me, but i felt you there.It was really hard for me to get up and speak about what happend even though you were such a miracle, having to tell everyone you had passed away was heart wrenching.I wanted to just curl up into a ball and cry at that very moment.I thought i keep it all together aand tell what was on my paper, but i couldnt i was mixed in my emotions that the words couldnt fully come out, it was a blur when i sat down.I thought gosh i never even answered my questioned! i just cried and trembled in my voice telling about the things you did.I introdeced you to everyone! you were a star, everyone awed over beautiful face.I love my big man, i hope my public speaking gets easier over time right now its just all new and very emotional. I hope your proud of me baby boy. you are one strong boy, i wish i had just half the strength you had.Love you.

P.S. i Hope you LOVED the balloons we released for you today, sissy was excited to give you them.

Fabulous Mother Of the Year!

2011-05-05T19:09:00.000-07:00

I am thrilled that our now i lay me down to sleep photogrpaher Trina Lewis nominated me for this opportunity...i was chosen with along with 19 other fabulous mothers out of all alberta! Vote here on facebook if you like, just like my picture and your vote counts! i speak saturday mothers day weekend, if i win i get a fabulous vacation away. thank you!!

https://www.facebook.com/home.php#!/photo.php?fbid=125652164178153&set=a.125652110844825.26518.113850778691625&type=1&theater

My DREAM!

2011-04-27T13:01:00.001-07:00

Well it finally happend! Nolan mommy had the sweetest dream about you, i have waited 3 long months just to feel you in my dreams,just to spend a little time with you.It was so nice to see you well.I was carrying you around in the house and it was snack time so i set you in your highchair, you were so excited! I put a yogurt and spoon your tray and you gave me the look like, arent you going to feed me? I wanted to see if you could do it yourself, iwatched you pick the spoon up put it in the container of yougurt and feed yourself!! you made a huge mess, but it was a wonderful mess seeing the huge smile on your face.once you were done i picked you up and was holding you, i didnt want to put you down.I walked all day with you in my arms, everyone was asking how you came back, and i simply said,"the doctors made a mistake you werent really gone." You were soooo alive in my dream! i woke with a smile on my face! It was the best dream i had ever had. I love you, and i hope i have more dreams more often like this.It's nice having "our" time even if its dreaming.

Mama misses her sweet boy

2011-04-23T11:20:00.000-07:00

Nolan, mama misses your sweet face.I enjoy all the memories you gave us i always smile and laugh telling people about the cute things you used to do that made you "nolie" how everymorning you would be kicking your legs in your crib when you seen me peeking at you through the bars.Or how when i would cook in the kitchen and you'd be next to me in your excersaucer looking up at me like i was the greatest mommy in the world.That look that daddy couldnt get over, daddy said,"i never seen another boy besides me look at you the way the nolan does,he looks at you like wow your really my mom" brought tears to my eyes you always stared at me like you wanted to just say thank you for the life i gave you.You were amazing litte man.I love you.

Nolan

2011-04-19T11:37:00.001-07:00

Could we ever forget your sparkling eyes
or the way you brightened each day,
or your smile
which is etched in our memories,
so you're never far away?
Could we ever forget
those priceless moments?
The answer, of course, is never.
For you were part of our lives
for a brief time,
but you'll be part of our hearts forever

Inside Nolans Obituaries,this is what we wrote.

2011-04-05T12:06:00.000-07:00

Nolan Alex Chisaakay-Soucy
"Our Fat Man"

Nolan was born June 25th,2009 in Edmonton,Alberta and was granted his angel wings on january 21st,2011,Due to complications of RSV and Bacterial Pneumonia.

The day our miracle joined our life is a day we will never forget.Nolan had fight wanted to show the world!Nolans life would seen too short to many,but those who were touched by him,understood that the quality of his life far exceeded the quantity of time in which he lived.His gentle smile could melt the hearts of those around him and though he never spoke a word,his voice and thoughts could always be heard.

Although Nolan had Trisomy 18, he possessed a strength and ability to overcome incredible odds and physical challenges.With his courage he led us to believe that each day is a blessing and an opportunity to create lasting memories.Nolan would spend hours cuddling close to those he loved so much.He enjoyed music, and listening to the sound of his sister Lexis laughter, which always made him smile.

With Nolans passing, we remind others that his life is one to be celebrated.Nolans Journey has not ended:a new chapter has just begun and although we will miss every minute of everyday,especially his beautiful smile, he will remail in our hearts forever!

Nolan is survived by his loving parents,Nathan and Amanda, and Big sister Lexi.Together forever in our hearts!

21 months

2011-03-25T09:16:00.000-07:00

Well my sweet boy you would be 21 months old today, and we should be singing happy birthday with a very special cake made just for you.Sissy and I are going to bake one today i just dont feel we should stop i know you enjoyed the candles and all the celebrating.We will also be relesing some balloons hopefully tonight, if daddy makes it home before dark after work.If not they will be sent tomorrow for sure! I lovve you handsome man, thank you for all the amazing memories you gave us.Happy 21 months!

Some Photos I had some fun with

2011-03-24T16:47:00.000-07:00

~March 18 Trisomy 18 Awareness Day!~

2011-03-18T10:52:00.000-07:00

March is trisomy 18 awareness month, today is 18th and marks Trisomy 18 awareness day! Please spread awareness everywhere to anyone.You would be surprised at how many people have never even heard of this it is one of the most common trisomies out there next to Trisomy 21(down syndrome) everyone knows what that is.So why doesnt anyone know about Trisomy 18!! help me and our trisomy 18 family world wide by telling a close friend,a family member or even a stranger that Trisomy 18 (T18) (also known as Trisomy E or Edwards syndrome) is a genetic disorder caused by the presence of all or part of an extra 18th chromosome. It is the second most common autosomal trisomy, after Down Syndrome, that carries to term.

Trisomy 18 is caused by the presence of three – as opposed to two – copies of chromosome 18 in a infant's cells. The incidence of the syndrome is estimated as one in 3,000 live births. The incidence increases as the mother's age increases. The syndrome has a very low rate of survival, resulting from heart abnormalities, kidney malformations, and other internal organ disorders.

This is my Nolan, born June 25 2009 at 42 weeks 4lbs 10oz 18 inches long Full trisomy 18,VSD and DORV.He needed no assistance breathing when he was born! Nolan only needed an NG tube to help him get nurtrition.At 6 months he discovered baby food and loved it! 13 months old nolan had Gtube surgery and a Fundo repair.Nolan always had a smile who could brighten anyones day.His eyes full of love.We gave our Nolie a chance at life, he lived 19 beautiful memory filled months, he said "dada" and LOVED his big sister Lexi they often laid in his bed and chatted every morning.January 21 2011 was Nolans goodbye, RSV,Bacterial pheunomnia,Viral pheunomnia,and bronchilits took his sweet life, he fought with everything he had. Nolie will forever have a place in our hearts. RAISE AWARENESS!!! TRISOMY 18 IS COMPATIBLE WITH LIFE!!! make a change and tell everyone you know. Nolie's smile is living proof, a miracle.

The day you were born

2011-03-16T10:06:00.000-07:00

A picture of our miracle,born June 25/09
so tiny and yet so full of strength.

You

2011-03-12T09:48:00.000-08:00

Nolan i think about you every hour of the day, i miss you in everything i do.I know your still here just in a different way,your story i have told so many times in this town since you've left you are still touching the lives of so many and i hope you know this.It's been nearly 2 months now and somedays are better than others you are just simply amazing in everything you did and still are doing.You have gave me strength to still live and take care of your sissy, we go for walks often and i always think about how you would of loved to go in the woods staring at the trees a watching the birds.Sissy loves seeing the deer.My son i cant wait to hold you again,my arms are aching for you.love you.

This a blog i made for my deep feelings.

2011-03-08T17:22:00.000-08:00

I will no longer blog deep feeling on Nolans web page as i want it to be a hppy place for me to visit and post happy things about him like pics and videos...feel free to visit my new blog page whenever you want to see how we are doing.Love you all thank you for continuing to follow us, i wont even stop bloggin about out little man!

http://learningtolivewithabrokenheart.blogspot.com/

Nolans Celebration of Life video.

2011-02-27T10:30:00.000-08:00

Ask My Mom.

2011-02-18T13:09:00.001-08:00

My Mom, she tells a lot of lies,
She never did before
But from now until she dies,
She’ll tell a whole lot more.

Ask my Mom how she is
And because she can’t explain,
She will tell a little lie
because she can’t describe the pain.

Ask my Mom how she is,
She’ll say "I’m alright".
If that’s the truth, then tell me,
why does she cry each night?

Ask my Mom how she is,
She seems to cope so well,
She didn’t have a choice you see,
Nor the strength to yell.

Ask my Mom how she is,
"I’m fine, I’m well, I’m coping".
For God’s sake Mom, just tell the truth,
Just say your heart is broken,

She’ll love me all her life
I loved her all of mine.
But if you ask her how she is,
She’ll lie and say she’s fine.

I am here in Heaven
I cannot hug from here.
If she lies to you don’t listen
Hug her and hold her near.

On the day we meet again,
We’ll smile and I’ll be bold.
I’ll say,
"You’re lucky to get in here, Mom,
With all the lies you told!"

Nolan says "Dada!"

2011-02-09T11:30:00.000-08:00

Trisomy 18 miracle

2011-02-05T18:00:00.000-08:00

From My Heart...

2011-02-02T16:17:00.000-08:00

You fought with all your might,i even got to kiss you goodnight,you took your first and last breaths with me,you were here with me,19 months baby boy,so as i say see you later i know you are safe with our creator.I always kiss you goodnight knowing you will keep me safe and alright.your smile always wipes my tears away,cause i know baby i will see you one day.

January 28th 2011 Nolans Tribute

2011-01-29T11:16:00.001-08:00

Amazing, there are no words i can say to explain this beautiful day.It was shared with over 100 people,so many friends,family,nolans care team,and even his pediatrition Dr.Mcgonigle who was there during the great times and even till the very last moments of nolans life.Speaches were made by family, grampas and grammas.It was so appreciated with all the help we had to get this ready and send our nolie off.It was closure knowing we were the greatest parents for nolan, we provided him with the best life a child like him could ask for, he got to explore and see the world in his own light.He only knew love he only knew happiness.Nathan and I are at peace with everything nolan is where he belongs now and he will always be with us everywhere we go.He is simply amazing, i had no idea nolan had touched so many! he touched thousands! upon thousands of lives.We love him so much.Nolan Alex Chisaakay-Soucy an amazing miracle of life.

Nolan Alex Chisaakay Soucy June 25 2009-January 21 2011 our angel

2011-01-22T17:46:00.001-08:00

Nolan....as i sit here at the computer crying as i type this sad update im thinking about nolans sweet face and how he had changed us from the moment we found out about him.At 6:40pm january 21 2011 nolan went to heaven, we held him with every last breath he took it was the hardest thing we have ever had to go through, loosing our baby boy we so muchly wanted to live.Nolan struggled to fight off RSV,Pneamonia and Bronchilitis he was on antibiotics in the stollery for 4 days through IV we thought he would pull through and get better,he had ups and downs those 4 days.It was hard im not going to get into details but i will when im ready share his last week here with us.His last moments were precious we cried,i told him we loved him and everyone loved him, we kissed him we held him tight we told him it was alright,i said he changed me forever and that it was okay if he had to go, i think we told him we loved him a million times within 2 minutes.It was fast to fast i wasnt ready but he was.We will never forget the times we shared with our miracle how he defied every odd! and showed doctors who is boss! i love him but i miss so much, it hurts with every breath i take.Nolan will have a celebration of life this Friday january 28th at 3:30pm in edmonton, at park memorial.Please celebrate our sweet boys life with us.for those who know me you have my number call me for more details, thank you everyone for support i will still continue to post about Nolan.As its not goodbye...its see you later ...

another nasty bug.

2011-01-16T23:39:00.000-08:00

Nolan has caught another one...we took him to the hospital late last night as he was worse over 2 hours.We were worried he may of aspirated since it looks like his fundo repair has come loose, xrays ruled out this out.We rrefused antibiotics and took him home, i was up every hour checking on nolan giving him pedialite and chest physio.Im exhausted.Today he was lethargic he slept prety much alday this wouldnt be so conserning if it were myslef but with nolan its alarming.So i gave his pediatrition a call and asked if nolan may have RSV and if were smart of me to take him back to get him tested, he agreed.When we arrived they checked his temp it was still 39.1 never changed within the 20 minutes of checking it at home.The doctor swab him and asked if i wanted to leave him over night, i refused so she gave him a dose of amixicillin and a prescription for it to treat him as if he had a respiratory infection since he worsened over 12 hours.We are also getting tamiflu.

When we got back home i bathed and rubed vicks on him,put saline drops in his nose and gave a good suction, he is now haveing a pedialite and formula mixed feed i hope he will tolerate it, he's falling asleep now so im off to get some rest before he wakes again, please pray for nolie that he will get better and passed this.

Update!

2011-01-12T14:40:00.000-08:00

Yesterday we made a trip to edmonton for Nolans appointment with Dr.Mcgonigle,it went great!Nolan did some showing off for the staff with his babling and trying to do alittle crawling with support from moma.He is 15lbs 6.4oz 27inches long it makes us thrilled that our boy is still growing!We discussed a wheel chair and came to a decision that later on we would look more into it a stroller for now works just fine.There was a concern nathan and I had,back in july nolan had his gtube/fundo repair the fundo repair was meant to stop nolan from vomiting which can cause him to aspirate then turn into pheunomnia.He had wretched a few times and accually brought up formula during his feed even when we vented his tube to let the air out.He has vomited about 4 times in the past 2 months yesterday he deminstrated this for Dr.M while he used the tongue depresser nolan gaged and brought some food up with it.Dr said this is very concerning we are praying he wont have problems if it only happens once in a while, to the concern is that he most likely loosend the fundo repair.For now we just position him and vent faster! so this doesnt happen.Either than that nolans a happy little man that enjoys picking his nose now!

18 months Merry christmas miracle boy!

2010-12-25T12:20:00.000-08:00

Our little man celebrates his second christmas with us who knew!! what a miracle in itself today marks his 18 month birthday! amazing! from being told we would maybe have a few minutes to maybe no time at all with nolan and having 18 wonderful beautiful memory filled months is the best christmas present ever! love you big man!

Nalah...

2010-12-10T11:01:00.000-08:00

December 8th a beautiful trisomy 18 miracle named Nalahpassed this day late at night,her mom Marianne and familynever expected this.She was rushed to hospital by ambulance wherethey told her that she has chronic lung failure,she was put on 15litres of O2 and told her mom not to worry.Things changed quickly and Nalah was rushedinto surgery for a possible trach and to be vented,she was in heart failure at
that time.She came out stable but suddenly she was crashing doctors did CPR everything they could do for her but there was no way she could not recover from what happend that night.Nalah lived to be just over 2years old, a beautiful girl loved by so many,many who she met and many who she didnt.She will never be forgotten,nalah was the first little girl i knew about living with this where i live and i got to meet her mom a few times,so this is very shocking.Her heart is golden as she flys high.a beautiful angel.we will all miss.please pray for her family.She has a big sister named Karis who has taken all this very well and misses her dearly.

another birthday-17 months

2010-11-28T11:40:00.000-08:00

Nolan turned 17 months november 25th.Hes still going on strong and mighty,starting to say "dada" and LOvES laughing with his big sister lexi.This christmas is going to be another great memory and fabulous year this is more than i could of ever imagined when we first found out about trisomy 18 and nolan. All we wished for was a moment and we have had almost 2 years with our amazing man. We love him.
Weight-14lbs 7.5oz
Length-27inches

Celebrating 16 months!

2010-10-27T15:14:00.000-07:00

My family is proud to be singing yet another birthday to Nolan his 16th month here in this world,his second fall,his second halloween,his second winter and second xmas.It's amazing what this little man has accomplished in 16months,he's smart in his own ways, he has recently been trying to say words, like dada and getting very vocal about what he wants.His temper is just like a toddler too, its kind of cute :).He's a little big man with great personality.Happy birthday Nolan.

Nolan scared me...

2010-10-18T17:03:00.000-07:00

Very early in the morning at 2:30am Nolan woke me up with a blood curdling scream, i have never heard this from him, so i was very concerned.I had to yell out "help Me" to wake my little sister up.I needed the phone, i was about to call 911 as i holding nolans right arm down(he has been twisting his right arm backward then pressing so i thought he might have broken it in his sleep) i also thought maybe he stopped breathing breifly then came out of it,( he has never stopped stopped breathing before) since i didnt have the monitor on him last night,i really didntknow what caused him to do this.But eventually he did calm down and we cuddled for about half hour before i put him back to sleep.He loves being hummed to while being rocked...after i set himback in the playpen to sleep, i hooked him up to the monitor, everything was perfect.Today he seems to be himself so maybe his arm might of fallin asleep or maybe he had a nightmare,i have no idea what this was, but it freeked me right out.

Kids love swimming,nolans first time!

2010-10-12T22:19:00.000-07:00

Most of you dont know yet, that nathan and I have decided to move away from Edmonton to where my mom lives about 2 hours away.Nathan got a better job where we are relocateting and it makes more sense to just move where WCT is (worksite) since he will be out of town alot, i will need some help with the kids and my mom is always there to help out.This way i can finish school and do what i need to get my career.It's beautiful here, we found a house and will be moving in on the 30th this month.This means tons of traveling to the city for nolans appts! but thats okay.Since being here the kids and I do recreational things daily even if its a just a stroll down to the park or to the river where lexi enjoys throwing rocks and sticks, but best of all we bought a monthly pass to the rec. center where Lexi and Nolan enjoy swimming almost everyday! Yesterday i decided to take nolan to see how he would like it,Well he LOVED it! he can handle about 30 minutes since he did get cold and turned kind of bluish, but i can say its great physio for him! and lexi learns to swim better each time.It's sad leaving town when we do but its best for us right now.Im going to miss his homecare nurse but i will be keeping in contact with her about nolan.It's a good change.

September 25 2007- LEXI is now 3!!

2010-09-28T21:29:00.000-07:00

Our Saturday september 25 2010 went awesome! we packed up the kids early morning and headed to the great mall West Ed.We planned that we would take lexi on few rides and treat us all to the sea lion show, which by the way was excellent!Lexi didnt take her eyes off Clara the entire time.We took the babies down into the sea cavern as well, where they both seen penguins,a croc,3 huge sharks,3 gigantic turtles!, and many other sea lifecreatures, it was pretty amazing.Then that evening we came home and packed for the weekend at my moms, they threw a party for lexi with a great BBQ, and tons of presents from family, she did well this year!Nolana got a few things too, since he did turn 15 months!! Happy birthday to him too :D.Later on in the evening the entire family went down to the athabasca river, where lexi threw rocks and we adored the sceanery,It was one of the greatest weekends every we all enjoyed ourselves.

Nolan gets over another one...

2010-09-13T21:30:00.001-07:00

This week has been sure hecktic! Lexi ended up sick last weekend with some kind of wierd flu, she spike a temp of 39.4 and hadnt peed in nearly 12 hours, so nathan took her in the ER to get checked out.The next day she was fine! Then this past weekend Nolan picked up the same thing, except he had the tummy flu and some kind of cough he's much better now, but it just seems like we never get a break with sicknesses around here! no matter what we do, we do all the handwashing and santizing we can and still sickness enters our home.We are just glad it wasnt a hospital stay! infact nolan lately has been sooo interactive with toys and wanting to do so much.Lexi turns 3 on the 25th and nolan turns 15 months on the same day...our babies are just amazing, hard to believe how fast they change...

Lexi and Nolan enjoy the PARK!

2010-09-08T18:54:00.001-07:00

Happy 14 months Nolan!

2010-08-26T12:13:00.001-07:00

Look at his NEW DO!

2010-08-20T18:18:00.000-07:00

My Birthday Present.

2010-08-16T19:02:00.000-07:00

August 14th was the day i entered this world with many hopes and dreams ahead in my life...i grew up fast.Im now 20! and the best present i shared was being able to be a family celebrating this day with the people i love especialy Lexi and Nolan...my life is complete.Nathan made a spectacular super! He smoked salmon on the BBQ,made mexican salad in tortilla shels he shaped into bowls,bruchetta and potatoes,might i add in ALL FROM SCRATCH! even the marinate for the salmon.He is an amazing cook! im glad to have him in my for many things including this.I did have a light beer which by the way was very nice, as i do not drink.My birthday present was simply haveing my family and being blessed to have such amazing kids.I love them with all my heart.

Home sweet home....

2010-08-13T14:45:00.001-07:00

This morning we finally came home, with our miracle boy Nolan and our sweetest most beuatifulest Lexi.I will miss the nurses and doctors, and how kind they were to us during our very long stay,it was a tough road.We are just so happy to finally be all together again.Nolan is doing much better being home for the few hours that he have been,We know in a few weeks he will be back to himself completely.So for now it's home sweet home.

Getting so close.

2010-08-07T15:45:00.000-07:00

Yesterday we got the test results back,nolan tested positive for rhino virus and the tummy flu,so glad it wasnt something worse...i can deal with the virus and flus.Nolan is getting better faster than his doctor anticipated each day he comes in and says he sounds and looks better.We are so close to finally comming home, its just a matter of time!

Going home turned into...not anymore.

2010-08-04T09:30:00.000-07:00

Yesterday Dr.M came in early in the morning to do his rounds on the kids he takes care of who are in the hospital.We got awesome news that Nolan would be going home! that day was supose to be today,unfortunately nolan turned for the worse, atabout 11pm he started having a stuffed nose and bit of a cough.I thought i was just becuase he was upset from teething,but as the night got later the cough was continueous and nolan seemed to be weezing.This morning Dr.M came in unknown to nolan being sick, after a listen to his chest he turned to me and siad "we arent going anywhere" this news was not what i wanted to hear, Nolan had been here for 2 weeks already! So dr.M ordered chest x rays and swab tests to see what was causing this,probably a virus :( yet again.So now we wait till he is better to officially go home, dr.M said we will be there for while.I know i will need my breaks from that place as it's causing me some anxiety and being somewhat angry i just dont want to be there all day everyday but at the same time i want to be with Nolan...its a tough road but its worth having him, we are just anxious to get home and be a family.

Nolan wasn't ready....

2010-07-25T08:38:00.000-07:00

Well yesterday was very eventful and scary, i was a mess.
They extubated him at 8pm july 23rd it was a moment i will never forget
he tryed to breath on his own and it didnt look right :( he was struggling and breathing so fast.They put him on high flow oxygen to see if this would help...but around 9pm his oxygen was dropping,fast.The doctors and nurses rushed to his side and started "bagging" him this helped, they decided to do an emergency x-ray this showed that his left lung looked callapsed, so they put him on b-pap for the night, his breathing improved alot!So yesterday afternoon when we went to see Nolan we walked into the room and he had his eyes open and was moving, but he still looked "different" he was withdrawing from all the drugs he was given, he was so jittery and shaking, but trying to talk :(. It was very hard to keep it all together and to watch our sweet boy going through this.They switched him from b-pap to c-pap this means less pressure given through the mask, it was a great improvement and his lung had finally opened!i was happy.Later on in the afternoon we suddenly got moved to an isolation room becuase his test results showed he had virus, this explains why extubation was so hard on him on top of everything else.We did however got to "hold" him just lifting him off the bed but still close to it,he reached up for me it was the sweetest thing to have happend this whole time, he knew his mommy was there and that his daddy was too.For now they will be slowly wiening him off the morphine and adavan becuase it's too hard on him to just stop everything suddenly, we cant wait to have him home.

Update

2010-07-22T10:38:00.000-07:00

Well nolan is quiet the "wild child" in the PICU tuesday at 2am while i was at home sleeping he was trying to sit up and the nurse had to physically hold him down...he had to be "paralyzed" because they dont want him doing this yet.Fortunately lastnight he was settled and got his rest.Feeds have been increased and he is doing everything they expcected him to do...he is doing wonderful.He is still intubated and the plan is for tomorrow that it be takin out...but before this happens they will lower the ammount of air going into his lungs so he can slowly take over...so when he becomes extubated its not so hard on him, he is on multiple meds to keep him comfortable, i will update what those are when i get home,we are just happy we are moving on up! and nolan is such a warrior! we love him.

Surgery is done....

2010-07-21T07:44:00.000-07:00

Yesterday was so stressful...from start to finish is was about 3.5 hours long before we got to see him again, it was literally touch and go.The surfery itself went wonderful barely any bleeding at all!Intubateing him was difficult so he still has the breathing the machine in him, he is staying in the PICU at the stollery hospital, unfortunately i can't stay over night with him as they dont have beds for the parents in there :(. Iknow he is in great hands, he has nurse 24hours in his room doing everything for him.They will try extubating him hopefully tomorrow, he keeps trying to wake up but they cant let him do this due to the tube going down his throat so he had to be re sedated this morning.I hope his recovery goes quickly and he can tolerate his feeds again soon so we can all be home together, i miss my babies.

Pre-Admission appiontment was today.

2010-07-19T19:10:00.000-07:00

We had nolans preadmission appointment today, it was 2.5hours long.
i will give you all the explanation of what happend, we arrived and i had to fill out
a form that was 5 pages, once i finished we called to a room, where a nurse explained things briefly, she was very nice.She told us we have to be at the hospital for 9:30am and that his surgery is scheaduled for 11:30am.Nolan cant have any solids or milk after midnight, just sugar water through out that time untill 7:30am.

We then were walked to the Xray waiting area, where nolan had to get some xrays of his chest.The stupid people hurt my baby, the chamber they have to sit him in that im very familiar with, they did wrong and i had to tell them that he was too low and they were squishing his poor face inbetween the plastic!!ugh i could of freeked! well i pretty much did.Anyways!after xrays we went back to the room and seen the aneastesiologist who then explained to us alot!

they will be inserting an iv into his hand where the medication will run that will keep him asleep during the operation(they dont want to gas him to sleep because its to stressful on him with his cardiac issues), along with a Epidural in his spine to control the pain as he wakes up,(this will be inserted while he is asleep so that when he wakes up he wont feel the pain), he will also have an iv in his neck to monitor how much fluid is going in during the procedure(this is an accurate reading) and to watch his blood pressure.In total the operation from when they start to when he is the recovery room is up to 3 hours we cant see him while he is in the recovery room(45minutes).

He will be in PICU becuase he will have a breathing machine down his throat :(
they will not be in a rush taking this out untill nolan is ready.As they do not want to cause
any stress on his little body and heart.

Nolan also had some blood work done today:( it made me cry seeing him in pain.
I had just recieved a call saying we have to be in before 9am becuase they need to redo the blood work to make sure it is accurate(they didnt get enough blood to test)

Please pray for our nolan as he goes through this surgery and pray that things go as planned and that we will be able to come home soon,

thank you all for being there when i need, this is not easy, but we love him dearly and know this best decision to make for him, in the long run he will be so much happier!

love you all and i will update as soon as i can!

Surgery is set.

2010-07-13T12:02:00.000-07:00

Next tuesday is nolans surgery day, for his fundo repair and g tube placement.We are feeling very nervous as it's so soon in such little notice, but we pray and hope for the best, we know nolan will be a much happier little boy without a tube going down his nose.I will update next week after its all done, please pray that his recovery goes smoothly.

They love eachother so much

2010-07-05T18:53:00.000-07:00

The Party

2010-07-02T12:07:00.000-07:00

June 27 2010 a hot sunny day...was nolans celebration surrounded with family and friends.The day was busy and fun we had over 50 to share this special day :) we had 12 balloons release for the angels and also symbolizing his year that has passed by quckly! when we cut te strings they floated into the tree and got stuck, luckly nathn climb up and set them free..it was like they didnt want to go.We had a gift opening and lots of cake! Our amazing photographer from NILMDTS to came out and did hundreds of pics of the special day, she did this on her own time because nolan is her first to defy all odds of life.All in all it was a very emotional and fun day.Nolan is our miracle and is such a gift to us.We love him dearly.

We MADE IT!!

2010-06-25T00:01:00.000-07:00

Happy 1st Birthday to our Miracle Nolan! he has beaten the odds! just one of the many in his amazing journey, what a great start to his new year! Im so proud to be his mommy.... its 1 am friday june 25th, his arrival time was 2:29am but i need some sleep for a long great weekend ahead of me! so much excitement,celebrating and making memories, Nolan has shown us all in different ways how not to take things for granted, he has taught me patience and so much more.Having him with us means the world we love him dearly! Happy birthday sweet boy Your a BIG BOY NOW!!!

He's proud to be their daddy...

2010-06-20T23:04:00.000-07:00

Today was a special one..fathers day, nathans very first fathers with both his prides and joys...lexi and nolan.This year was his first in getting to share this special day with both of them, last year i was pregnant awaiting for nolans arrival.It was a laid back day with our little family, i cooked his favourite dinner homemade lausagna and a nice salad.He enjoyed it.Nathan works hard to provide for us and makes time to be with his kids to show them he loves them to pieces if anyone could see the way he treats his kids they would just say wow, as some have already.Nathan and I are both very young and some are surprised by our maturity im just glad he has stayed with us through the hard and good times.He's proud to be their daddy and they are happy to have a daddy that cares so much.

I want to carry you forever..

2010-06-17T23:43:00.001-07:00

Trisomy 18, or known as Edwards Syndrome affects 1 out of every 3,000 live births (according to statistics) Of those born alive 90-95% die within the first year of life and only 5-10% live to see thier first birthday.

This was the terrifying news we recieved about Nolan alittle over a year ago February/09 was when we knew a new journey for our son had begun, even if it was short.We gave him a name and started talking to him everyday, we wanted him to feel our love.Nolan deffied every odd.Nolan is still defying odds everyday.

Tonight i feel like i really dont know if i will ever understand that he might pass one day...i really dont want this to happen, i shouldnt even be typing this, afterall he is doing soooooo great! but every once in a while it creeps up on me.I sit here when its queit or when i try to sleep...and think...long.Probably because some doctors or even nurses say things that feel like a punch even if its a small comment i think about it later. It's like it haunts me from the day we found out and being terrified everyday while i was pregnant that he might pass inside me, even though i felt his strong kicks daily , all the hopelss doctors and us pushing past them and keeping our baby was very emotional sometimes.I wish they could see him now, and understand this is why we gave our Nolan a chance.

I just want him to be with us forever, even if that means carrying him around, changing him, bathing him, feeding him and rocking him everynight till he falls asleep ...I want to carry nolan for the rest of my life.

The countdown BEGINS!

2010-06-15T09:24:00.000-07:00

10 more days! I sit here in awh looking at the miracle boy i have shared my life with knowing i carried him for 42 weeks and 1 day just last year.June 25th 2010 will be his 1st birthday, a day many doctors told me i would never see, i had longed to hold my son and wished to just tell him that i love him, to just see his eyes open and look at me...i have done all of that.So many told us not to loos hope and we never did, it was along 20 weeks waiting to hold our miracle bundle of joy.We got through it, the journey of the unknown has been a great one and we pray for more years to come with nolan...he has been such a blessing lighting up the entire family with his smiles and giggles i couldnt imagine life without him.

I remember the days leading up to the big day, nolan was a stubborn little man, he loved his cozy home and didnt want to leave so they began inducing me june 24th at 11:00am.He didnt make his arrival till june 25th 2:29am after along and painful labour with an epidural just minutes before he was born that didnt even kick in, he was born...it was a scary moment with the quietness that filled the room, i didnt hear my baby cry and i remember whipering"is he alive?" no one answered...then he was lfted onto my belly and i heard the sweetest sound ever...his tiny little cry and his eyes trying to open to look up at his mommy and daddy.He was alive and here! the day i will never ever forget our son Nolan Alex Chisaakay-Soucy has already deffied the odds of surviving birth at only 1 minute old.We were surrounded by family and lots of love that early morning our NILMDTS photographer Trina Lewis took beautiful photos for us to always have.It was peaceful i just stared at him and looked up to see everyone staring at us, our family was complete i felt so happy i couldnt even cry.Nolans daddy was covered in tears while i just sat there beside him telling him how cute and perfect he was.It was a day and moment that i cant even compare too anything it something i have never felt before, getting to hold my miracle that i so longed to do and prayed to do was the best feeling...so now the countdown begins 10 days till Nolan Alex Chisaakay-Soucy turns 1!

born June 25 2009 ~4lbs 10z 18 inches long

1 year later 13lbs 9.5oz 24inches long

Miracles happen to those who believe

Nolans first Zoo trip

2010-06-13T22:30:00.000-07:00

Today we wanted to do something with the kids so we decided to go to the zoo! Lexi absolutely loved all the animals and nolan was so facinated by the trees, it was so cute.We wandered around looking at all the different animals, lexi's favourite was the elephant.She just couldnt stop talking about how big the elephant was...on our way out i sugested that nathan and her go paddle boating together, so they did, it was so cute watching them together in the water and lexi being so excited about the boat! overall it was a great day!

WE ARE HOME!!

2010-06-08T20:40:00.001-07:00

Yesterday early morning the doc came in and released nolan, we arrived home around noonish, and waited for Medigas to come in and set up home oxygen.It's this big machine that plugs into the wall, kind of wierd considering he is only on 1/4 litre but at the same time very nice that we dont have to worry about filling tanks! Nolan is doing soooooo awesome at home! and lexi is glad to have us all together again.He seems to be doing so much better at home then at the hospital,he slept the whole night i only had to wake once to feed him.We all go a goods night rest something i longed to do for 2weeks.We have a stat monitor to do spot checks its not always on as it's very annoying and not needed b/c he is constantly moving around when he is awake.But before bedtime i monitor for about an hour to make sure his O2 isnt too low or too high, they would like him to sit around 88-93% since his heart is unrepaired they dont expect him to be 100.We also have a suction machine that is such an awesome thing! we suck so much from his little nose when he needs.Friday we go and see his new pediatrition for a weekly check up till the surgery day! im happy he will soon be having a G tube and Fundo repair, it will make life so much easier! so for now nolan continues to get rid of this nasty cold that is hanging on. but atleast he is better than 2 weeks ago.We are so proud of him!

Change of plans

2010-06-04T10:30:00.000-07:00

We will not be leaving today, the doctor wants him in for the weekend and will check in on monday to see how is doing, last night was bad he has reflux and was very irritable and didnt finally get to sleep till early morning.The nurses had to take him out and force us to bed so we could sleep since it was 4 am.We might stay in for til he gets surgery so we know he wont come in contact with anther virus when he gets out, but we stil dont know.They wont do surgery untill his lungs are completely healed from the nasty virus.So now we wait.WE are soo exhausted physically and mentally, i hope we get home soon one day.

Going home

2010-06-03T20:03:00.000-07:00

Tomorrow morning we are being discharged, Nolans new pediatrition dr mcgonigle gave the go's to go home! we have everything in place to take care of nolan as needed, oxygen is with medigas they will be comming to our home to set everything up,we have a suction machine,stats monitor,and portable O2 for travelling. Im so glad we have pushed to get everything we needed! now we can be at home and care for nolan just as we would here, he is still getting over the virus and hopeing this oxygen thing will only be short term! Im so happy we will get to be a family again! I discussed the g tube surgery with his doc and nolan started gagging and he told me right away he was aspirating (nolan had just finished eating) so Nolan will be getting a bigger surgery than we thought which is going to include a fundo repair and a g tube placement we find out tomorrow the date this will happen.Dr. mcgonigle has been so caring and compationate with us, im glad we made the transfer for our babies to his care!

It's Been A Week...

2010-06-02T18:13:00.000-07:00

We are still in the Stollery Hospital with Nolan, yesterday i requested to see someone by the name or Dr.Lyle Mcgonigle our soon to be new pediatrition, i heard of him through a great mommy that has a trisomy 18 baby here in edmonton... we have met 2 times since nolan has been here, she has been a great support.Last night i met with Dr.lyle and he is soooo great so i signed some papers to get the process moving along in hopes he will take over while we are here.They turned off oxygen last night and checked on him evert few hours and when they did he was 65% :( it wasnt a very nice number..so on the oxygen went, we did alot of chest physio and got alot of gunk out of his nose but that still didnt do the trick.Im getting very frusterated here as the pediatrition in hospital is'nt listening to what want so im finding other ways to get home on oxygen and a monitor for at night.Im tired of being here knowing i could care for him at home with those things!hope we get home soon and hope that people will listen to my requests as i do know my son best.

Weining off oxygen..

2010-05-29T17:08:00.000-07:00

Last night was good, the new set of nurses came on for the evening and they lowered his oxygen to 1/4litre unfortunately again he fell under what they wanted him at, 88 to 96 he was falling past 82%,so they put him back to 1litre so he could rest properly, they tried again later on while he was sleeping and he stayed around 84-93 which is getting good!The pediatrition came in today and talked to me about how he was doing and i said he seems to be getting alot better then when we first arrived, i want him off oxygen soon, he said slowly he will get there and he would stop by tomorrow early to see if nolan was ready to go home! he has to keep his oxygen up on his own 24 hours after its been off.So we pray this will happen tonight! it has been discussed that if he cant get off this week that would it be possible to go home with oxygen so he can rest at night since he is very restless at night and crying... im starting to wonder if its b/c he dips so low that he struggles to breath and cries.When here night time has been alot easier besides the gas(that i can handle).Please keep nolan in your thoughts we are both really wanting to go home since we havent been home for nearly a week.

Still Here

2010-05-27T21:33:00.000-07:00

Just would like to update everyone on Nolan...we are still currently in Isolation protecting nolan from any other germs.He is still on oxygen trying to fight this virus off, he just needs the extra boost to get over this bug.They talked about his "normal" levels in oxygen and in cardiology when they checked it at times a couple months ago it stat was at 88-96 they would like him to be at that without oxygen for at least 24 hours before going home, unfortunately that hasn't happend yet his levels drop after a few minutes of lowering the oxygen.We are hoping within the weekend he will hold his own so we can go home.They have also concentrated his formula so he can get more calories, nolan is very gassy and has been throwing up at times after his feeds they are unsure why but most likely due to the build of secretions in his nose causing him to gag.This evening i felt some weezing in his chest and called the nurse in to listen and he had heard it too, it was very loud in his chest and back on both sides, right now i am waiting for his night nurse that looks afer him to come on cause she knows him best, nolan might need meds if phneamonia is starting. Until then we are at the stollery on 4th floor room 14 in peds surgery.The nurses and doctors are sooo great and caring here i love them! I will share more when i get the chance or get to go home sometime in the near future.Please continue to send prayers for little nolie so he can home soon!

Emergency

2010-05-26T04:19:00.000-07:00

Hi everyone, i have finally got to a computer in the hospital that has allowed me to get on here but not facebook,anyways a whole bunch of things have happend in the course of 12 hours, we are very exhausted..we decided to take nolan into the sturgeon hospital around 6pm the immiadately admitted him a trama room and started oxygen right away due to his stats being 88.As soon as they O2 started it went up in the 90s the did many tests and x rays to find what the cause to his drop in oxygen.The doctor wasnt comfortable sending us home so we were ambulance transferred to the Stollery where he is on continuous oxygen to help him.The think it is a viral infection and untill he can keep his stats up we are here i will update everyone when i get a chance to add more details, thank you for your prayers, as we need them very much for him to get better!

Nolans New Hair!

2010-05-17T18:41:00.000-07:00

Yesterday we decided to give Nolans hair a trim, it was getting so long and hot for his little head, now that summer is here its better for him, he is soooo handsome!

My Mothers Day

2010-05-09T15:58:00.000-07:00

Today was very special, special in sooo many ways.This exact day last year i was pregnant with Nolan and wondering if i would ever get to have mothers day with both of my babies, this year i did, and im sooo over the moon about it! This morning i got up bright and early excited to start the day, we went out for breakfast and it was delicious! thanks nathan.Then we decided to go to the carnival that was such a blast to, me nathan went on the zipper and he deffinately scared the crap outta me!Lexi went on a few rides and was such a good girl..nolan huung out in his stroller looking around at the rides and people passing by.It was very nice to have both my babies today, the greatest gift of the them all!

Consultation With The Surgeon

2010-05-06T16:41:00.001-07:00

Today was a very nervous day for us...as we had our appointment with the surgeon to discuss a G-Tube placement for Nolan, We think this would be good for him to have and too get rid of the Ng tube that he hates so much.The appointment went well, i had my binder full of papers and in that was my questions for Dr.Lees.I had it open on the patient bed ready to ask away! He came in and introduced himself quickly, then opened up Nolans file and read about his condition.He then asked what his current weight was i said 11 lbs 11.5oz.He then looked over at my paper full of questions he sat up on the table next to me and Nolan, he began to explain everything my questions were about,He's totally awesome!

We didnt really have to ask anything at all, The procedure is fairly quick and minor ...I had a concern about Nolan dying on the operating table, he reassured me that he has NEVER had a child die on his table, even the ones with more severe cases than Nolan, he also told us that they will be treating him like any other child, they will not be underlining his condition to not use any intervention if something should happen during or after surgery, they will do anything in their power to make sure he will be fine.He will also be on constant monitoring for his STATS , we will have to stay in the hospital for 48-72 hours after the operation, it was also discussed that they may put him on a ventilator and keep him PICU for 24 hours just to make sure.We feel very at ease knowing that our nolan will be in great care while he undergoes this surgery we are looking into the date for the surgery after his 1st birthday.They will be calling us in about 1 month with a set date, we are still alittle nervous as any parent is when its surgery no matter how big or small it may be, i just dont want to see him in any pain, but we look forward to not haveing to change his NG tube anymore.Please have Nolan in your thoughts and prayers when this big day comes, thank you.

It's Snowing In MAY! (only in alberta)

2010-05-04T12:58:00.000-07:00

Hanging out on a snow day, in his purple dress shirt!

This morning i woke up to sweet Nolans little voice letting me know it was morning and time eat.I walked out to my living room craddeling him in my arms kissing his soft warm cheek, i love the smell of him in the morning.I then opend my curtains to see a blizzardy day! snow everywhere! i was accually shocked, you think we would be used to the snow since sometimes it decides to come out of no where!But im not used it, i was hoping for a sunny day to take the kids to the park.Looks like we will be having a snow day.

Edits from a friend...

2010-04-25T22:23:00.000-07:00

10 MONTHS!!!

2010-04-25T21:41:00.000-07:00

Today we got to celebrate Nolans 10th month with us, it was a great day! I made a winnie the pooh cake and instead of the red shirt winnie has i made it blue ...it turned out fabulous! We are so happy we got to spend yet another month with our miracle.Nolan fought hard to be with us in the beginning, im amazed each and everyday at how precious his life is and am glad to have him in my arms.To hold, to love, to kiss, to cuddle ,to touch his soft hair, to play with his feet and hands and most of all just stare in awe at my family...we are complete.

2010-04-22T16:13:00.000-07:00

me and my happy feet(Nolan)

Smiles

Moments after his Birth

2010-04-20T15:02:00.000-07:00

Here is a photo of nolan i never got to share because i didnt have it on a disk its in a frame in our home..seconds after we hear his sweet little cry and get to hold him.

Fun day at the park.

2010-04-18T17:39:00.001-07:00

Today was great! Nathan and I decided to take the kids to Rundle Park due to the beautiful weather! It was a blast we spent 3 hours walking,playing and lexi threw rocks into the water with her daddy, Nolan enjoyed the sun and just simply being outdoors!He absolutely loooooved it! Both of them loved looking at the geese, nolan studied them very well...next weekend we plan to have a picknick at horlack park with friends and family CAN't WAIT!

Nolan

2010-04-14T15:42:00.000-07:00

Different Feelings about DNR

2010-04-13T15:34:00.000-07:00

Lately I've had this strong feeling that if something did ever happen to Nolan where he did need CPR I think in the moment of panic I would be crying and wanting them to do everything they could to help him.I dont think I could handle watching him just "Go" without doing anything, I would always wonder what if they did help him and he lived longer, and if the help didn't work then atleast i tried everything i could to keep him.Now that he's made it this far my outlooks on different things and situations are changing.We still want pallative care in keeping him comfortable, examples are... medication to help his heart we still dont want to go down the road of heart surgery, but if it did ever come up that we needed him to have the surgery if the heart was failing then we are open to discussing it with his doctor, BUT only if it was an ABSOLUTE last resource for him.As for now we havent needed to make any rash decisions with his life or care we hope this wont change.Nolan is doing great and still defying all the odds and fighting for his own life without any interventions he's nothing short of a pure Miracle.

The big move/ Bad bug

2010-04-11T12:57:00.000-07:00

Well all i can say is this past week had been BBBUUSSY! we finally moved into our beautiful apartment, but both kids were sick with colds and settling down was hard with 2 litle ones that were needing all of my energy to take of them especially little nolie.He had it the worst...it started with a stuffy nose then a bad cough, a few days later he got the runs with vomitting, it was very scary for us because we though he may have had an infection(turns out it wasnt) we visited the pediatrition 2 times in the week and each time they reassured us it was just a bad bug that could last up to a week.For nolan he was extremely miserable all day and night, the crying never stopped, only when he was sleeping did he stop.It was very exhausting for both me and nolan i got little to no sleep because i was so worried, but he started turning around yesterday to happier boy, and last night he slpt 9 hours! im now feeling more at ease that he is much better!

9 months already!

2010-03-25T08:12:00.000-07:00

Happy 9 months NOLIE! It's been 9 months since our little nolan entered into this world into my arms, he has blessed us so much these past 9 months and more to come.He was 4lbs 10oz 18inches long, he is now 11lbs 3.5oz and 23.5 inches long! He continues to show everyone what he is capable of despite how many said he would have a very poor outcome and not live more than a week if he was born alive, (you just never know!) We couldnt imagine our lives without our precious miracle,Lexi loves her brother so much and enjoys each and every birthday with him (most likely b/c of the cake LOL) From today its going to be 3months till his 1 year b day, we are going to start planning it after we move and couldnt be more excited! Thank you everyone who follows his blog, it's here for everyone and anyone just to know there is some hope! and not to give up. Bless you all!

Sincerly Lexi and Nolan's mommy.

PICTURES!!

2010-03-23T20:30:00.001-07:00

Weight Update!!

2010-03-23T13:52:00.001-07:00

Nolan's reached 11 lbs 3.5 oz! as of yesterday, he is doing fabulous!

Cardiology/RSV immunization

2010-03-17T14:39:00.001-07:00

Today was very early and long due to Noln's 2 appointments he had this morning at the Stollery Hospital.First appointment was his RSV shot, he was weighed and is now 10lbs 15oz! Next was time for the needle, the nurse injected synagis and he barely cried! just one little tear and a pouty lip.He was such a strong boy today :) After his needle we headed upstairs to cardiology where he had his echo cardiogram then his EKG his stats were great! The doctor then spoke with us about the echo his heart is still same...the hole in his heart is still large, causing the heart to beat harder then making the muscle thicker and heart slightly larger, long term effects can cause harm if left unfixed but this will take years for any permanent damage, since we dont know his oucome in the years to come, we dont need to give him surgey right at the moment, because he is coping excellent with it! as all the doctors can see they are so surprised at his progress and development! So surgery in the near future is out of question unless its an absolute thatwe have to later on or if something serious changes.He just seems to amaze everyone around him, we all love him soooo much!

HUGE MILESTONE!

2010-03-08T08:39:00.000-08:00

Yesterday was soooo awesome! As i was getting ready to head over nathan's dad's house for nathan's birthday dinner, Nolan hit a huge milestone, he rolled completely over!! From his back to his belly.After he completed this we were so happy clapping for him and giving him kisses, he then put his bum in the air with his knees bent under him, trying to CRAWL! he's just not to sure what to do with his arms yet.But soon enough with practice he probably be teaching himself how to scoot all over here! We couldnt be more proud of him! and just to think Nathan got the bes gift ever for his 21st birthday,getting to celebrate with Lexi and especially havng Nolan here too!

Happy 8 months!

2010-02-25T16:06:00.000-08:00

Today we celebrated Nolans 8 month birthday, what can i say either than im soooo proud to be typing this to you all.These past 8 months have been a roller coaster but i wouldnt change anything about it!Having nolan in our lives is such a blesing he surounds us with such warmth and continues to prove that he IS a MIRACLE!He's come so far and continues to thrive each and everyday!I made blue and green cupcakes,decorated them with spelling happy birthday nolan.Then we sang happy birthday, after that i took the kids for a walk, nolan loved being his snugglie b/c he is so close to me,he fell asleep.It's been a good day, now we are just hoping he can overcome this cold he is still fighting off so he can get back to having the energy he always has!

Much love xoxoxox

Another Bug :(

2010-02-22T11:32:00.001-08:00

Nolan has caught another nasty bug, i have done so much to keep him healthy but any little bug he comes in contact with he seems to get.Myself is feeling under the weather as well so it must be going around once again, but i have lots of hope that little nolan will get through this once again! He is coping well with it although he is alittle on the cranky side but nothing that i cant handle ;)We are just going to continue what we usually do when he is sick, cool humidifier,baby vicks,saline drops,suction, warm baths to sooth him and lots of TLC! he loves that.Please keep baby nolan in your prayers for a fast healing so he doesnt get worse, thank you.

Swallow Test

2010-02-18T16:02:00.001-08:00

Today Nolan had an appointment with his nutritionists and a scheaduled xray to see his swallowing,nolan wasnt to fond of the barium that was put in his food.He ate some of the pablum and that was enough to see it go down, his swallowing is strong and is going the right way also the time it takes for him to swallow is great too.He was weighed and is now 10lbs 6oz!! Nolan is also up to 8oz of formula every 3-4 hours no wonder he's getting so big :) So now that we know he can eat his pureas by mouth we are going to start him up with pablum and all his fav, baby food again and just take is slow with him, there is no need to rush him or increse his food by mouth, its all up to him!

Valentine's Day with The Family

2010-02-17T21:36:00.000-08:00

Febuary 14th was a great day not to mention the night before Nathan surprised me with 12 beautiful pink roses with a heart melting card, the family spent the next day out at my dads house Trinas family was also there, there was aloto chocolate and teddy bears handed out to all the kids Nolan and Lexi got alot of cuddly bears!That night we had a nice big dinner, and just enjoyd being around with everyone sharing updates on Nolan and achievements with lexi they both are growing up so fast! It was an awesome weekend!

Taking Nolan back to the hospital he was born at

2010-02-12T13:55:00.000-08:00

Today was very exciting and bitter sweet, we went to visit the genetics councellor at the royal aleksandra hospital, her name is Melissa, we met her when we knew something could be wrong with nolan.She was soo supportivein our decision and i knew we had a great bond, we kept her updated thrugh the pregnancy and when she wason vacation we were sure to let someone know to tell her that nolan was born and alive! She met him for the first time when he was about 3 months old( i surprised her) she was thrilled for us! Today was the second time she got to hold Nolan she was so happy for him and us that he was still here and thriving.She took us into the room that was once a bad memory and now it is more of a hapy memory knwing that it was where we foud out the bad news but now turned into he's ok! After chating with her,showing him off to everyone, we went to the floor where we stayed with him the first night and seen the room, it was a happy moment for me.Then we headed up to the NICU where we stayed in the family room for 5 days to make sure we comfortable with feeding Nolan and if anything happend the NICU was right there to help.Unfortunatly the nurses that took care of him and helped us were to busy today to come talk, we are hoping that another day we will be able to share with them as well on his progress we took pictures and were happy we got to do this together it was a great day!!

Emergency trip

2010-02-09T14:59:00.000-08:00

On late sunday night, we though it would be a wise choice to bring nolan into emerg. due to weezing in his back, since his food intake by mouth was increased friday he was miserable that very night and all of saturday.We are positive it was to much at one time for him, or maybe a coensidnece that he got a cold.But sunday we never gave him anything by mouth, just fed him by formula through his NG tube as normal,anyways while we were in the emerg. they took us in within 5 mintutes of getting there, even though his oxygen level was 100%!!! they did chest x rays and they came back clear (no fluid in his lungs) we were so relieved! So we were sent home.The monday morning we took him in to his pediatrition, and she listened to him, felt his liver and reassured me it wasnt heart failure!! once again great news! We scheaduled a swallow test for the 18th to see if it might be the problem with congestion he also has a follow up appointment with the cardiologist march 17.Nolan is still doing amazing despite the little scare we had, he recently discovered his long hair and ears, he constatly plays with them and coos about it! i have video to show as soon as i get more time i will put them up!

Nutrition Appointment

2010-02-06T09:44:00.000-08:00

Yesterday morning was Nolans appointment with the nutrionists, it went well accually,he was 10lbs 1oz. We talked about what he was eating and what new things he was doing! They said Nolan is having great success with his solids eating, and that he can eat solids about 3 times a day or more.They also gave us a different nipple to use for his bottles and he's been drinking better from the bottle,he might be off his tube sooner than we think at this rate!

Pictures of our boy!

2010-02-04T14:00:00.000-08:00

Mr.Talks Alot!

2010-01-29T16:09:00.000-08:00

Nolan is turning into quite the chatter box these days! he talks all day long, except for when he is sleeping, he's soooo cute! Today he had his 2nd RSV shot and barely cried, Nathan said it's b/c he was there and Nolan wanted to be tough for his daddy. :) Since Nolan is 100% better from his cold, he is now back to eating his baby food, i'm pretty sure he mised it,b/c he savaged on it big time!! he's eating awesome! On Feb.1st we see the nutritionist to see how he is doing with his growth and eating which i think they wil be surprised at how well he has done since the last time! excited!

Celebrated Nolans 7th birthday!

2010-01-24T22:33:00.001-08:00

Today we celebrated Nolans 7th month, it is a day early b/c tomorrow is a week day and everyone has work.It was a very happy day, my mom and I made a bear cake from scratch and it looked sooooooo cute! we are so proud of ourselves! Nolan had alot of flashes in his eyes with so many pictures being taken by me! lol. but atleast he doesnt get mad at me for it ;) Lexi blew the candles out for her brother and loved it! after that nolan put his hand in the icing and tasted it, boy did he love that!
I just am sooo thrilled to be this blessed with him, it's been 7 months of unconditional love for our boy, thins the doctors said he would never do, he is doing! From gettng the horrible news,to not knowing if we would ever get to hold our son alive, and knowing the "poor" outcomes as doctors say, to accually having him here for 7 months and more to come has been a miracle! His smiles, his giggles, knowing his ticklish spots, and simply just staring into his big beautiful eyes and touching his soft brown hair, makes me realize how precious life can be,how we are lucky to have Nolan still here with us.

Quick Update

2010-01-22T13:14:00.000-08:00

Yesterday nolan hit another milestone! i sat him on his playmat infront of me facing me and he can almost sit on his own! he falls foward slowly, but its the cuttest thing ever!

Nolan's Gettin up there!

2010-01-19T10:56:00.000-08:00

This morning Nolans nurse came for a check up, she listened to him as usual, checked his pulses and everything, he looke great she said.The only thing she could hear was a slight rattle in his right side but she assured me that it was just the stuff thats hard for babies to get rid of, and that it would go away soon especially with everything i have been doing for him to help him out.Then she weighed him! and....GUESS WHAT!! HE"S 10LBS!!!!!!! I was soooo shocked he gained up to that even with being sick he still grows! we are so proud of our little big man! Nolan then decided to show off his new skill, when we hold him under his armpits so his legs are little bent with his feet flat to the floor he pushes up really hard and gives a huge smile, then continues on with bouncing, we think he may be ready for a bouncer but we are going to wait a bit and see what we can find that suits his needs.Way to go!

A bumpy week with sickness

2010-01-18T21:13:00.000-08:00

Last week wasnt a very good start, Monday morning Nolan woke up with a stuffy nose and i knew he was getting sick :( the nurse had us schedled that day anyways so she took a look at him and let me know that it was probably just a sinus thing going on, because his chest and lungs were clear.Then tuesday morning came around it was 12:00am and he was still up crying his little heart out and coughing his head off, i didnt know what to do but give hime tylenol, chest physio, baby vicks, warm bath,steem and alot of cuddles he was just totaly miserable!He finally went to sleep at about 2:30 am by then i was drained! Early that tuesday morning lexi woke up with a runny nose :( she didnt get that sick at all, i caught in time with both of them! Wednesday Nolan was happy and sounding clearer than the last 2 days, i was glad! Thursday through the weekend he had some secreations in his nose still,we used saline and the bulb suction regualarly to keep his airway clear, he had a slight weeze in his breathing but nothing i was concerned about because he seemed to be not in distress and happy as can be! Tonight he sits here beside me as i type cooing away and sucking his fingers! He's doing great!

Perfect in everyway....my babies

2010-01-13T00:28:00.001-08:00

First RSV shot

2010-01-09T13:11:00.000-08:00

Yesterday afternoon Nolan had an appointment at the Stollery Hospital for his first RSV immunization.He qualified for it since he is more syseptical to getting the rsv infection b/c of his Trisomy 18 and the hole in his heart.We are glad for this shot as he will be protected from this horrible virus, every month he will be getting the needle to insure it will work all year.

Nolans story with CBC news aired on the radio,

2010-01-06T19:53:00.000-08:00

Scroll down and select the cherished memories box and it will open windows media player it's a radio talk show,pretty neat!

http://www.cbc.ca/edmontonam/

pictures

2010-01-03T18:40:00.001-08:00