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