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!!!
Friday, June 25, 2010
Posted by Amanda at 12:01 AM
Sunday, June 20, 2010
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.
Posted by Amanda at 11:04 PM
Thursday, June 17, 2010
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.
Posted by Amanda at 11:43 PM
Tuesday, June 15, 2010
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
Posted by Amanda at 9:24 AM
Sunday, June 13, 2010
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!
Posted by Amanda at 10:30 PM
Tuesday, June 8, 2010
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!
Posted by Amanda at 8:40 PM
Friday, June 4, 2010
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.
Posted by Amanda at 10:30 AM
Thursday, June 3, 2010
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!
Posted by Amanda at 8:03 PM
Wednesday, June 2, 2010
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.
Posted by Amanda at 6:13 PM