As The Holidays Get Closer...

December and January are a very emotional time of year for us, December because its a time when families come together and when you are missing someone in the family its a struggle to feel truely  happy .January, well because it will be nolans 2nd angel anniversary, a very hard time to get through.I am so happy and thankful for Lexi and Kinsley even through the tough times. The lights nolan would spend hours watching at christmas time through the new year, it was his favourite thing :) now kinsley is doing the same and its bitter sweet. im wishing nolan was right there with his sisters admiring the lights.We have the endless memories of nolan but it just never will be the same or enough, he will always be missed with everything we do, we try to include him in most things and talk to the girls about their brother daily i know its healing for lexi and even me to just simply say his name and remember that he did live instead remembering his death.I pray that our girls will feel the same way as they grow older. for now we live for the moment and cherish time we have.

kinsley's blog

http://lifewithaspecialrainbowbaby.blogspot.ca/

A day to Remember...

November 11,2012 a day for rememberance, we welcomed our precious rainbow baby GIRL Kinsley on a very special day, she was born at 5:45 am weighing 6lbs 15oz 18inches long. Nolan is finally a big brother, we know he would be thrilled and very excited for us, she has been a blessing already in the past few hours of her life. We are so inlove with our new daughter and Lexi is just over the moon that she has little sister. We are all doing great.

Sharing maternity/family photos

It's been since Nolans 3rd birthday that i have posted anything, we have been living but missing our son alot as we prepare for his new sibling, i wanted to share our maternity photos we had done when i was 32 weeks along.We wanted so badly to include nolan into our family photos and are so glad our photographer was happy to help us :) Nolan will always be apart of our family.

Photos done by, Stay Gold Photography.

June 25th 3 years...

To our sweet boy, we wished you a happy birthday yesterday and celebrated your life, it was a gentle day to remember you and how you entered the world with such courage and determination to show everyone how strong you are. I cant beleive its been 3 years already that you deffied so many odds!! i found this beautiful poem and thought it suited so well...

Birthdays are a time for celebration
Not a time for tears
But what happens when the birthdays
No longer mark the years

A birthday marks the moment
... A spirit enters earthly life
To share its special love and joy
And learn from earthly strife

Before his spirit came to us,
He knew when and how he must depart
He chooses his path carefully,
We are honored from the start

The sadness we now feel
on such a joyous day
Is longing for our loved one's touch
It's natural to feel this way

For even though the birthdays
No longer mark a spirit's stay
Love continues on forever
To touch us everyday

I hug my precious memories
Close to my heart
And honor my beloved Angel, My Son
Who chose me from the start

We love YOU so much Nolan!!!
Love,
mommy,daddy,sister and your new baby brother or sister :)xooxoxox

Nolans going to be a BIG brother!

Nathan and I are happy to finally announce we are expecting baby number 3 our little rainbow. Nolan will finally be a big brother and lexi is so happy to be a big sister once again :)...it's all so bitter sweet becuase nolan is not physically here it makes my heart hurt that my whole family isnt together. Yesterday we had the nuchal ultrasound for this baby and is measuring 13 weeks 5 days. All looks amazing but prayers are welcome for the health of this new blessing.

January 21...1 year later...

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.

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.

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...

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!

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"

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.

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

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!

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.

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

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

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!

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!

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.