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Sunday, December 27, 2009

Picutres


Lexi and Nolan got spoiled!!



Well christmas has come and gone already! now we are getting ready for newyears! It was an awesome year, getting to meet our Nolan and him lving this long, it was a great christmas present to celebrate him with our family, lexi and nolan got sooooo much!(and so did I lol) we spent the morning opening presents at home then we all got ready to head out to my dads (which is an hour away) nolan did great the whole way he was sooo happy! later that day we exchanged gifts and had a huge turkey dinner! then sang happy birthday to nolan and had a delicious home made cake to top it all off, this week we are preparing for my step dads sons arrival from Ontario along with his girlfriend and daughter, my step dad hasnt seen his son in 18 years! this is going to be one happy family all being together for new years eve! update in a few days!! happy new years!(pics to follow as well!)

Thursday, December 24, 2009

Celebrating with Nolans first Christmas

Today and the rest of the week we will be hugely celebrating with nolan, as its his first christmas and he's turning 6 months christmas day! we will update later this week! have a very merry christmas!

Monday, December 21, 2009

Weight Health and Physio update

This morning Nolans nurse Sandy came by to do her routine check-up on Nolan since xmas is comming up this week she wanted to make sure he was going to be okay.She was very happy to see that nolan was his usual happy outgoing self(as usual!)he's such a happy baby.She listend to his chest, tummy, back, lungs and heart everything was marvolous! I always love hearing how great he's doing, even though i know he's pretty special for doing this awesome! hehe. His weight today is 9lbs 9oz! he sure is getting to be our chunky monkey!! he's beaten so many odds we dont even need oxygen in our home and he hasnt had any "grey" spells since he was 1 month old! Later this afternoon the physio therapist came by to teach me some patting on his chest and back especially to use when he is congested( it helps to loosen all the yucky stuff he may have inside) even once day is recommended.Then Nolan showed her how he can move all around and lift his head up! She was pleased with how he was doing and that he didnt have any "stiffnes" in his joints,Nolan is doing fab! we will be celebrating his 6th month birthday on his very first christmas day! What more could we ask for, for christmas then Nolan being here with us and our healthy daughter lexi, we are family forever!Merry Christmas everyone!

Saturday, December 19, 2009

Stolen My Pictures

Im sad to announce that someone on Facebook has stolen my babies pictures and used a fake name for themselves to create a fake profile, i cant express how digusted i am with this person my pride and joys are posted on someone elses profile, they even renamed them Isabella Lexi and Nolan Ryan, even have their age.I took everything off mine, I only used facebook to keep intouch with other Trisomy 18 mommies and friends from school, i guess its not as safe as we all think even with the privacy settings set to ONLY FRIENDS!I really am upset that someone would do this to me, i have contacted facbook directly and am hopeing for a response in which they will delete this fake person, but with that being said they have my pictures on their computer and who knows where else they have our babies posted.This makes so sick to my stomache i cant believe someone did this to me :( if anyone is reading this the fake name is Amie Claydale please help me get rid of her or him.

Xmas party with the Terra Association

This past thursday night was a blast, we went to a Xmas party for pregnant and parenting teens association i have a worker from there myself to help out with nermous of things, especially my life goals.Everyone was exstatic to see Nolan and happy to see how Lexi has grown up to look so pretty :) Santa was there and the kids got pictures with him, Lexi especailly LOVED him!!! She was so cute jumping up and down trying to get his attention, it was a great night! great food and lot's of talking!

Wednesday, December 16, 2009

Nolan LOVES pablum

Today was a very special day for Nolan and us, we decided to let him try pablum as he seems to not be getting very full off just formula, we made the pablum a little runnier than it should be just incase he couldnt handle it well or swallow it, he took his first sip and loved it!!! he ate about an ounce and then i finished him off with 2oz of milk through his tube, he kept it all down!!! We are sooo proud of him!And he wasnt fussy at all, this week we have noticed an increase with crankyness we beleive he might be teething, he is constantly whinning but its soooo cute! He is doing fabulous! Here is a video of him trying his cereal for the very first time!
video

Friday, December 11, 2009

Nolan

Yesterday night nolan was sooo funny! We put him on his belly and he was reaching for his toys trying to play them, and the mat he plays on has some crunchy spots so he was squeezing them with his hand to hear the noise! and when he heard it he'd smile and coo.He also discovered pulling on his eye really hard, he would cry about it so we pulled his hand away and he would do it all over again! lol he's learning his cause and effect!Nolans learning all sorts of stuff daily he's getting so much stronger with his head and can roll it side to side while he's playing on his belly, we are so proud of him.A few days he had immunizations 3 needles that he had to have, he was so upset and cried and cried i felt so bad for him.But he's fine now!
He is thriving so much and has an awesome first christmas comming up!

Wednesday, December 2, 2009

Another Checkup

Today Nolan had another visit from the nurse, his weight never changed from last week he is 9lbs 2oz, and doing fabulous!He rolls himslelf side to side trying roll right over! we are sure he will be rolling over very soon! I had to ask the nurse why there was a white lump under his gum as i didnt know if he would get teeth this early, and to my surprise she's positive he's teething! another great milstone for the books! He loves laying on his play mat looking around at all the things especially the christmas lights on our tree, he's so bright eyed and full of smiles.Lexi has been holding him alot more everyday and is getting more involved with him like trying to change him and his diapers LOL.but only with my assistance, she also knows how old she is now!our babies amaze us each and everyday! Nolan continues to thrive as the days go on and christmas comes close he will be 6 months on christmas day! this is going to be a huge celebration for him.He's our gift.

"With you in my life,the music plays stronger,the stars twinkle brighter and heaven does'nt seem so far away"

Thursday, November 26, 2009

HAPPY BIRTHDAY!

Wednesday, November 25, 2009

More Pictures Of Nolan




Bath Time!

5 MONTHS OLD!


We are thrilled to announce Nolans 5th month birthday! Happy birthday baby boy!
Today he weighs 9lbs 2oz, the nurse is very happy with his progress and how he looks.She got lots of cuddles with Nolan and had a hard time leaving she just loves him so much and calls him "little peanut" because of how small he was when he was born.We will be celebrating tonight when his daddy gets home from work! Way To go Nolan!!!!!

Monday, November 23, 2009

Nolan


Last week went great, nolan's nurse came over and he now weighs 8lbs 13.5oz!
he's getting to be a chunky monkey!Nolan has also started to hold his head up, and loves to play patty cakes.He much loves to be in the car looking out the window and smiles , he's so darn cute!My dad's g/f bought nolan his christmas stocking that has baby's first christmas on it with a slot so we put a picture of him in.We are excited to have him for the holidays! he's our present.So far Nolan is doing excellent! he's developing,feeding well,sleeping great and most of all thriving!!!
He is not imcompatible with life, and doctors who say so should come and meet our nolan.

Tuesday, November 17, 2009

Great News!


Today I took Nolan to his pediatrition to make sure that his virus has subsided and that he sounded clear,she took a good long listen to his heart, lungs and chest and told me everything sounded back to normal! His lungs were clear! i had the biggest smile and sigh of relief, no hospital! Also the nurses say that he is their favourite! So we are so glad and happy that he is better and we are looking forward to celebrating his 5 month birthday next wednesday! thank you for all your prayers and thoughts.

Thursday, November 12, 2009

Nolans ill.

I would just like to update everyone on Nolan this week,since his cardio appointment he has caught a nasty cold we thought yesterday he seemed better, but when he woke this morning he sounded very yucky when coughing.I called the nurse as it was day 6 and i just knew something was worse when i put my ear up to his back i heard some weezing.She insisted and i agreed it was time for him to see a doctor so off to his pediatrition we went.She checked him over and assured us it wasnt heart failure that is was a viral infection that sounded like he might have slight phneaumonia in his left lung he was prescribed antibiotics and tamiflu, we go back in the morning to see if he needs further treatment.Many prayers are needed for our sweet boy as we dont want him to be admitted to any hospitals.His oxygen level was in the 90s which is good and he still continues to smile and coo.We continue to hope he can pull through this sickness on his own he's come so far.

Wednesday, November 4, 2009

Another Cardiology Appointment

This morning Nolan and I took the train to his heart appt. at 8am, It was a very nervous ride not knowing what they would find,But i tried to keep my head high and think positive for Nolan.He got weighed and is 8lbs 12oz! such a chunky monkey now!
After the tech finished with the echocardiogram we were put into a room to wait for his doctor,she came in with a smile on her face and asked how Nolan was doing.I answered great!She went on to explain that by what she saw nothing has changed and nothing has gotten worse, this was music to my ears!!! PTL. She checked him over, took a listen to his lungs, heart, and tummy.She was very pleased with everything, she then got a nurse to check his oxygen levels, that was also perfect.The medicine she prescribed to him 2 weeks agi has been working on any extra fluid build up he may have had.So another great report for us and everyone who is following Nolans journey he continues to be our miracle baby each and everyday he is with us!

Monday, November 2, 2009

Pediatrition Appointment

Today Nolan had a follow up appointment with his pediatrition, his weight is 8lbs 7oz
Not much from 2 weeks ago due to the medication he's on which makes him loose all his water weight.He also grew in length too! 21.5inches long!!! Dr.Malik is very please with how he looks and his progress, we talked alittle about getting Nolan some hearing tests and sight tests, we know he can do both, but we just want to know if it's perfect.She brang up the idea of having an in home physiotherapist comeing out to do some excersizes to try and get him to roll over along with some other things.His strength is getting stronger, we know he is behind but we just focus on the positives in what he's doing in development!

Friday, October 30, 2009

Nolan Grabs

I am soooo excited to announce another great milestone from Nolan!
A couple nights ago I gave him something to hold on to with his hand, he held it for a few moments...well minutes accually, then raised it to his mouth to eat!!!!
We were sooo amazed by this, we never knew we get to see our son do something like this.Looks like we have to buy him a rattle to play with! His development seems to amaze us each and everyday we have with our miracle boy Nolan! A.K.A (Nolie hehehe)
Sometimes when i rub his lotion on him after his bath he rolls himself to his side and with a little push he gets to his tummy! He is doing fantastic!

Sunday, October 25, 2009

Nolan turns 4 months!


This morning as i opened my eyes to see sweet nolan staring at me cooing away, I was so happy to say happy 4 months Nolan and give him kiss and tell him how much everyone loves you! I just cant believe its been 4 months, these months have been a true gift, we know our Nolie!(his nick name) how he coos, when he's upset what he likes to calm him down, he knows out faces and reacts to everything! A pure miracle<3we pray for many more of these days with our sweet baby boy!

Wednesday, October 21, 2009

Tube Issues.

Last night till early this morning was very hard, we had some big troubles with nolan's tube going back in.Nathan is the one who usually inserts it in, and it kept comming out his mouth.Poor little guy was stressing out and couldnt calm down,(he hates getting his tube changed)So after 3 tries we decided it was time to call the nurse to come out and help us out!It was 12:30am by the time she arrived she tried about 4 times and with no luck she went to her car to get a stiffer tube as she thinks the tubes we have are to flimzy and keep curling in the back of his throat.With luck she got the new one in!!! it was a long and stressful night and nolan was very upset,My heart hurt watching him go through that knowing he was unconfortable, today is a better day and he's back to his happy go lucky self!

Monday, October 19, 2009

Nutrition appointment

Nolans appt. went great again! he's 8lbs 6.5oz! Nutritionist says he sure is a miracle gaining 17grams aday,she said a healthy baby gains 15-21grams so he's doing awesome,thanks to us!he's 20.5inches long,He's in the 50% for small babies!! yay go big boy, prove them all wrong.

Wednesday, October 14, 2009

Cardio appoinment

Nolan's appointment went great he weighs 8lbs 1.8oz! Doctor was very pleased and surprised like usual at how well he's doing!She prescribe a medication called Lasiks(i think thats how its spelled?)It's to help get rid of any excess fluid he may have ie. like to help with any congestion.It will make him pee more, to make sure his lungs wont fill up and get congested.

Tuesday, October 13, 2009

Thanksgiving With The Family

We had thanksgiving dinner with some of our family yesterday, accually me nathan and lexi had 2 dinners in one day, Nolan was very happy to see everyone,and everyone was thrilled to see him!Nolan recently started to reaching up at my face and smiling at the same time! he's soooo darn cute :) tomorrow is Nolans cardiology appointment and im feeling very nervous, i know hes doing great but im worried if they will find something new.Im going to try and keep my head high and think positive hopefully nolan will show those doctors all his new development!
video

Friday, October 9, 2009

14 weeks~

Nolan turned 14 weeks today! he's truely a blessing to us~
he had to get another needle today we break the immunizations up because we dont how he might react to having to many all at once.He accually cried this time i felt so sorry.But he's fine now he gained a tiny bit since yesterday! not much but still some! the nurse said he's growing fine like following his own curve, of course he is not on the accually line for babies his age, but all that matter is that he's growing and thriving!Love you sweet baby boy!

Thursday, October 8, 2009

More Pictures!




Taking Nolan out to dinner.


Yesterday was a very proud day...me and nathan celebrated our 5th year anniversary together! well we brought our special gift Nolan with us, gramma watched lexi as she cant really keep still in a restaurant.Anyways we went to Eastside Marios and it was delecious! The staff there all adorde nolan, they asked how early he was and of course we knew Nolan was 2 weeks late! we explained to them what he had and they were very kind, caring and thought he was the cutest baby ever! We love showing our miracle off every chance we get.Also today the nurse came over and nolan is now 7lbs 14.5oz!! thats 2.5oz up from 6 days ago! he's doing absolutely amazing!

Sunday, October 4, 2009

Nolans First Little Giggle!!!


Tonight at about 8:25 Nolan had his first giggle! it was little but he still giggled! i wish i would of had the camera rolling at the right time, maybe next time! it made me cry to hear such a precious giggle like that.I just had to kiss him all over he's such a miracle...a night we will never forget! love you little man!

Friday, October 2, 2009

Nolans Weight update


Nolans nurse Natalie came this morning at 9:15am to do a weekly check-up on nolan,She listened to his heart and lungs,both were perfect.Just looking at him she couldnt believe how great he looked! His weight was 7lbs 12oz.!!!! hes doing fabulous :) we worked it out to about 4.5oz. a week which is great for a trisomy 18 baby! He's up to 4oz of formula now and handles it great, no spit ups.He still is being tube fed but we still give him a try at the bottle every feeding.We are just amazed that he is 97 days old! hes had more birthdays then his big sister Lexi LOL!
We also got a call back from CBC news they followed our photographer during her session with Nolan here at home in what she does for Now I Lay Me Down To Sleep, it was her first live photoshoot with a baby who survived an illness like this.Our story will air sometime next week, we get the DVD of it all too! we are thankful that we got to share our story with people and are excited for thousands to see our wonderful baby boy Nolan! So watch CBC news: i will post when it airs.

Monday, September 28, 2009

Our sweet baby boy

video

Sunday, September 27, 2009

The Party!


Yesterday was such an amazing happy day with family and friends,good laughs, great food and cute gifts for the kids.Lexi got spoiled with alot of presents and nolan got spoiled too! We were all greatful that we had the chance to celebrate this specail occasion as a family.Tanya was the one who made it all happen! from the planning to the food.It was fabulous!

Friday, September 25, 2009

Nolans Needle

Well we went and took Nolan for his first immunization we only did one needle to see how we would do...and he did absolutely great! His eyes went big and he only fussed for a second.We go back in 2 weeks to get his 2nd and 3rd one.He was wieghed at his appointment and is 7lbs 8.5 oz! and 19 3/4 inches long! our boy is growing at a great rate...of course not as fast as a baby without trisomy 18, but well for him.

Lexi's 2 and Nolans 3 Months Today!


Today is a very happy day our daughter was born into this world 2 years ago we will never forget the joy of her entrance, and finally getting to meet her.Nolan is 3 whole months today! we have his immunizations soon and will update when we get home. Tomorrow will be the big party for both of them we and our family are very excited for the special occasion!

Wednesday, September 23, 2009

Taking Nolan For a Walk

After we ate supper we decided to take the kids for a walk, I had nolan in his snuggly the whole way he made noises looking around and loved it! he was so cute.
Lastnight he slept beside me and gave me about 5 hours of straight sleep...i really needed it.He woke up this morning not very happy, he was extremely gassy and wouldnt settle down...so i gave him ovol it seemed to help him out with that...but he got himself so worked up that he couldnt swallow his own siliva.So suction it was.
He calmed down and went for a nap...but as soon as i put him down he began to fuss...so its been a "dont put me down day" which i dont mind...but things have to get done around the house to.Hes still sleeping now and is due to feed very soon.

Tuesday, September 22, 2009

Nolans Big Weigh In

This morning at 11:30am Nolans homecare nurse Sandy came by for nolans weekly weigh in and vitals,he now is 7lbs 4oz. 2 1/2 ounces up from last week! his heart rate was 144bpm and his lungs are clear! hip hip horray! Sandy got to see nolan smiling as he was making noises to his animals on his swing...and was very impressed :)
we are so surprised at how well Nolan is developing and so are the doctors...although he is behind like not being able to hold his head up yet, hes still responsive to our voices and we know he can see,he sucks his hands and loves his soother...we hope in the near future he will eat his whole feed through a bottle and not through the tube.He can drink about 4mls by bottle and he has 95mls by the tube(about 3 ounces + alittle more.) We are happy Nolan continues to gain weight and learn everyday!

Monday, September 21, 2009

nolans cooing

Heres Nolan cooing( taped last night)

video

Nolan will be 3 months!

We are thrilled to announce that we will be celebrating Nolans 3 rd month here with us! on the 25th I feel incredibly blessed to have had this much time with him already...he has been a happy healthy baby so far...and is over 7lbs! we have nurse who comes by every week to check his wieght and progress, shes surprized at how well hes gaining and thriving. :)

we continue to pray and hope nolan stays stable hes such a blessing! he coos and smiles all the time to our voices and his animals on his swing...hes beaten so many odds already!

The birthday of Nolan


To everyone this is how my day began it all started June 24th at 7 am we got the wake up call from the hospital to be there at 9 am for my induction..i cant tell you the emotions i felt at that moment...it was gut wrenching!we were sooo very nervous...we arrived at about 9 30am and they didnt start untill about 11 30 i had the gel insert and they began to monitor Nolans heartbeat which was perfect the whole entire time!we even recorded it on video and got a tone of pics soon to come!so around 2 00pm in the afternoon contractions started and it was slow at first but all the walking in the hospital they picked up very quickly and hurt!
6 hours past and around 8 30 pm my doc finally cam in to check me and i was 2 cm dialated so he broke my waters and i must say it hurt very bad!nolans heart rate still continued to be stable! so after my water broke they put me on potocine an iv to get my labour intense! OUCH! so then i laboured for about 3 hours or so and then they checked me again and only 4cm i wasnt very happy with all the pain i thought i was further!then another 2 hours went by with intense pain and they checked again and still 4 cm i was!
soooooo i ordered for an epidural i was so sick from the pain and so tired i couldnt take it anymore! But little did i know that i would go from 4 to 10 cm in 5 minutes after my epidural! it was soooooo fast! and the epidural didnt even get time to work before i was yelling i need to push! the nurse didnt believe me untill i told her to "check me now"!!! so she did i was 9 and half by then and then 30 seconds later i was 10!and began to push on my own...then my doc came finally and i only pushed for about 3 minutes and he was out! very lifeless and scary no sound i thought he was gone...untill they put him my belly and he was crying very quietly and eyes wide open...they then took him to the warmer to check him and he was breathing fine on his own...when they gave him back to me he was soooo alert and stayed awake for about 6 hours after he was born (he was 4lbs 10oz.) Nathan My mom and my aunt were all present for his arrival and then family came in once we were both cleaned up!
we feel so blessed to have him at home with us now and he will be a week old at 2 29 am thursday morning( tomorrow)hes truly amazing! and sooooo adorable and cant get enough of him!we take each day as it comes as we dont know what could happen still we also want to thank everyone for the prayers and continue to pray for him as his journey into this world has just begun.thanks...and we love you all!

The beginning


How it all started......the journey of Nolan Alex chisaakay-Soucy.


At 20 weeks i had my first ultrasound expecting nothing to be wrong.....we walked out of the appointment with no news that our baby boy was sick....3 days latter i had a follow up with my doctor and she explained that the ultrasound showed 2 very small cysts in the babies brain and that his left kidney was swollen.She reassured me that everythings fine and these things are soo common and will clear up as the baby gets bigger.She made another ultrasound for me and said this one will be a level two ultrasound(more detailed).


The next ultrasound came around and i was expecting that these things would of cleared upped but little to my knowledge after they were done doing their measurments the doctor came in and told me they have not cleared up and a new problem had came up it looked to him as a tiny hole was in his heart but he was not too sure....My heart sank...as he told me i should think of what he said MY "OPTIONS" i had no part in that what so ever plus he never even knew if there was a hole for sure anyways!Later that day me and mom had talked to a genetics councellor and she reccommended i have an amnio centisis done...due to his risk of Trisomy 18...i agreed knowing even if this does come back positive i still wouldnt change my mind.That news tor me apart that i was at high risk for carrying a baby with trisomy 18....im only 18 years old... she told me these things just happen by chance and its nothing we did wrong.The tears rolled off my cheeks as i tried to be strong but couldnt hold it in...the pain was just to intense.


The next 3 days were weary and wondering the what ifs.As any mother would.I finally picked up the phone and called the hospital and asked for my results...hoping they were negative..silence from both ends of the phone then a long sigh from my genetics councellor...as she said "the test came back that your baby boy has an an extra chromosone in chromosone 18". I cant explain to you the way my heart broke it felt like my heart was ripped out of chest and stomped on...i cried to my mom he has trisomy 18..i think she was in denial.As nathan sat on the other couch staring into space knowing his first son is very sick.At first he wouldnt talk as i layed in his lap balling"hes not supposed to be sick".He then got up and walked out the front door...he needed air and to think....he had plans for his little boy...to play hockey to box ect...He then came in and finally broke down into tears right into my arms"WHY MY SON!"i told him its nothing we did wrong.So these past weeks have been very hard but getting easier as we prepare ourselves for a birth and a funeral for our little baby boy Nolan.As we dont know what to expect but have hope for as not every case of trisomy 18 is severe.We take everyday as it comes and just sit here feeling baby nolan move around inside me...and just take every kick as if hes saying"im here mommy and daddy".


Prognosis:The survival rate of Edwards Syndrome is very low. About 95% die in utero. Of liveborn infants, only 50% live to 2 months, and only 5–10% will survive their first year of life. Major causes of death include apnea and heart abnormalities. It is impossible to predict the exact prognosis of an Edwards Syndrome child during pregnancy or the neonatal period. Because major medical interventions are routinely withheld from these children, it is difficult to determine what the survival rate or prognosis would be with aggressive medical treatment. The median life span is five to fifteen days. One percent of children born with this syndrome live to age ten, typically in cases of the less severe mosaic Edwards syndrome.


News:March 6,Had a follow up ultrasound and nothing changedand nothing new the technician said she couldnt even tellhe is sick!he has no common markers of trisomy 18 except for his heart deffect...he does not have clenched hands or the cleft lip alot of babies get.Also hes measuring 24 weeks and 3 days and im 26 weeksalong now hes not to far behind but this is a common thingfor babies with trisomy 18...to be on the smaller sidehes about 1pound and half!!So we still continue to think positve and just hopefor the best


April 1st:seen the doctor today and everything looks great!me and nolan are doing good and his rate is still perfect..i hope he keeps it up!


April 14th:had another ultrasound..went vey well...the cysts are gone there were 2 in his brain..these werent life threatening but just 1less thing...and we are very happy!he now wieghs 2 pounds 14 ounces and i still have 8 weeks or more to go!hes in the 10th percent for his size which isnt that baddocs said it could be worse.But he looks happy and stable for now so lets hope it stays that way!!!he keeps amazing us everytime we see the doctors! we love him!


June 3rd-39 week check up tomorrow!i cant beleive hes hung in there sooo long!getting nervous now as to he can come any day now!June 9th-2 days over due...had my docotr appointmentand everything looks great...an induction will be discussed around the 23rd of this month if i havent gone into labour.


we had so much hope making it this far.