Monday, March 21, 2011

2 Months...

January 21 2011 at 6:40pm our boy passed away in my arms peacefully. It's been 2 long months without him,everyday that passes just seems longer than the last since i have held him or seen his sweet smile along with his sweet laughter.We are doing well with his loss, although grief really likes to creep up on me sometimes especially hearing certain songs or seeing other little boys who are around his age.Lexi still sometimes asks to have her Nolie back, it breaks me knowing she so badly wants him back and i can't bring him back. He will forever be ours... in our hearts, he really left a huge impact on us,and remembering how short life is. I love him for teaching me things i had never or would of never knew if he had not came into my life. I love him for everything he has showed me.

Friday, March 18, 2011

~March 18 trisomy 18 awareness day!~

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.

Tuesday, March 15, 2011

I've been told...

Today marks the first day that someone has ever came to me on facebook and explained that what we're doing isn't right.That celebrating Nolans 2nd birthday isnt right,that us having his room isnt right,that lexi kissing his urn when she feels isnt right.That how are we ever suppose to move on, yes they said move on! if we dont pack his room away like he never existed.We are trapping our family friends by having his room and celebrating him.A nerve has been hit hard! i thought how dare someone who has never lost a child tell me these things! it hasnt even been 2 months since his passed and they expect me to "move on" i dont even know what the word means! its not like a break up with a friend or girlfriend where you just "MOVE ON"! he was our son who had lived a life with us! 19 months! that we were told we wouldnt have! We are living our life we arent holding back just because we nolan isnt here with us.Im not sitting in his room hours of the day expecting him to come back, its a place i visit 2 times a day, or whenever i just want to be close to him.Whats wrong with that?! it was his room,his crib,his clothes,his pictures,his toys and everything else im not packing him away and just going to forget he even existed, that wouldnt even be healthy! for now his room stays this way its my happy place when i feel lost.Not to mention lexi loves going in there and talking about her brother playing with his toys, im just glad she remembers him this is what we wanted.To me what we are doing is healthy considering its not even been 2 months yet.I will keep his room the way it is for awhile as we are in no rush to have another baby yet there are things in life we want to do, ie school for me and focussing on lexi.Nolan will always have a place in our family and everyones hearts who has touched he was a miracle, what family wouldnt want to celebrate him!

Friday, March 11, 2011

Trying to Explain...

Today was a very heavy heart day...we told lexi we were going to the store to get her a new baby a toy baby just for her to take of.Well her reaction to that was "i want my nolie! lets go get him!" we said nolie was in heaven in the sky watching over her.She then said"lets go get him and bring him home,pretty please." I held the tears back chocked up and explained to her that nolie was in a better place,that Nolie will no longer get sick and have needles in his arms making him have owiees.She said with a sad face "okay." I only wish we could bring him home.She has been so good about everything,but she's hurting for her baby brother to come back home somedays she thinks he is still at the "hosical"(hospital) and often tells me to get ready to go see him,it breaks me inside because the last time she got to see him while he was alive was in the hospital while he was struggling to breath.Then in his casket,i remember at the end of his service she whispered to nathan and I when we brought her up to see him again,"Nolies still sleeping?" i whispered back "yes hunny." I dont think she will ever forget her Nolie everyday she is making things just for him and of course we keep it all.Shes so amazing, i love my family.

Tuesday, March 8, 2011

Visit with His pediatrition...

Nathan and I waited 6 weeks for this day, this day was going to be our closure. We had our appointment with DrMcgonigle Nolan and Lexi's pediatrition, to discuss things about Nolan and all questions we had.Also we met with his homecare nurse who took care of him and came to our home whenever we were worried about him.She was so great, the entire team we had were a blessing.Sandy was her name, and we were all talking about how in the beginning it was so overwhelming haveing nolan and lexi, in the first few months lexi took having a new baby home kind of hard, but eventually she really grew to love him, like peas in a pod they became inseperable.We laughed at the funny things nolan did, and his famous hair!
P.s we nathan and I got matching tattoos! the staff loved them!

Around 5pm we arrived to Dr.M's office it was empty no kids so we watched the fish in his wicked awesome tank and talked about how Nolan loved the yellow one, we always showed nolan the fish and he was just facinated with the bright yellow one, it was the cutest.Dr mcgonigle and staff greeted us with hugs and condolances,they are such wonderful people.WE have never seen drM's actual office where all his personal things are like his wall filled with all the beautiful kids who have passed on.Along with dream catchers nathan admired.We gave him photos of nolan to put up, it made me smile and awh when i seen so many trisomy 18 babies on the wall, one who lived to be 10! and especially Nalah, along with Parker.We go right to talking about how we missed him every hour of the day, and how i was inspired now to become a nurse, he highly beleives this would be perfect for me to persue that i would make nolan proud.DrM had lost his son as well and became inspired by his son to do what he's doing today, taking care of special kids.It's so amazing what he does.

Our questions were answered, Was nolan in heart failure?and did him having RSV progress this?

yes nolan was in early heart failure,RSV did play a huge factor in his death in progressing it faster.causing pheunomonia and brochilitis.He went on to tell us that Nolan died one of the most beautiful deaths he has ever seen, he went so peaceful no pain,no struggle to stay alive by machines. Nolan knew he was surrounded with love and in your arms made him know we were always there no matter what.

I asked about his Pin Pointed pupils that the nurse was saying out loud, during his last few minutes while unconcious he told us that was a sign he was passing away, that his brain was shutting down and his response system was gone.This is why his fever was uncontrolable during the last 40minutes his body wasnt responding to advil or tylenol.RSV kills the cells if it gets bad, this is what happend to nolan.Along with his early heart failure cut his life short. But nolans story is amazing he was always loved and still is!


It Sinks in...deeper everyday.

Okay so its been abit since i've poored my heart out, if at all here.Im sooooo broken im trying to be a mommy to Lexi now and its gets difficult due to her missing her little brother as well.I never knew this road existed untill the moment i held nolan as he passed away in my arms, my tears were all over him.And now they all over his photos and blankets.Im missing him more than i ever though i could(if thats even possible) i knew one day he would pass, but i could never prepare myself for that moment, everytime i did i would just cry and shake my head.I never wanted to imagine life without my Nolie.

I cry so much we went icefishing on family day, i was so excited to take Lexi cause as i child i enjoyed it.We got to fishing, i had my sunglasses on due to the sun.There was a family with a small baby and i cried watching them hearing the baby cry or make noise just broke me,no one else knew.I looked at lexi she was so happy running around i just ditracted myself again.I love her.Im now living for her. Nolan would want me to be happy so im trying so damn hard! But sometimes the pain is so much i feel sick, somedays i dont want to get out of bed i just want to cry and avoid everything im feeling that day.

Somehow i pull my head off the pillow and just get on with my day, i visit nolan every morning in his room i look and touch everything i tell him i love him several times during the day.I still havent washed his basket of laundry his scent is all over in his room, i dont think i will for awhile.Life is just hard when you loose a loved one especially your child or baby it shouldnt be the parents planning a funeral or deciding weather to bury or cremate, it should be the opposite its just not fair!!! Nolan had a wonderful life with us and i just want him back i want all the sounds of the machines back on like his feeding pump, i want to change his gtube again, i want to bathe him,i want to lotion him,i want to kiss and smell him, just hold him one more time but i cant.

I do feel some regrets i know i shouldnt but i cant help that either i guess its just the process,we were told that nolan would get better with his virus and that intubating wouldnt help him if he got worse, it would just make his body suffer.But near the end i was scared and wanting him to be intubated thinking maybe he just needed to rest for his lungs to get better.But at the same time we didnt want to see nolan like that, i was confused to why he passed away so fast,one minute here the next gone.I couldnt understand why i thought it would of happend differently like a sign that he would pass away, but we got none.Just him sick.Very very sick RSV,Bacterial Pheunomonia,and Bronchilitis.It just took over and he got tired of fighting when they tried to CPAP him.nothing worked.It was difficult picking him up off that bed knowig he would die in my arms, i felt like i was going to collapse my knees were weak, i was dizy, i was heeving trying to get my last words out without fainting i told him we loved him and that he was so beautiful,that he changed my life forever, i kissed him so much and so did nathan he kissed his head and tried to hold him with me.He just went peacefuly what we wanted from the beginning but we never really knew how to prepare and here we are dealing with it.Nolan Alex Chisaakay-Soucy has made me a better person i miss him more than anyone could understand and when i say im alright im really not i know with time that maybe i will be alright but for now im missing him and i will be for a very loong time.I love him

A new Place

This is our new blog where i will be writing to all of you about what's going in our life after the loss of our Nolan.This will be a safe place for me to express my feelings as well.I dont want Nolans blog to be a place of anger and sorrow so this is it!