18 months Merry christmas miracle boy!

Our little man celebrates his second christmas with us who knew!! what a miracle in itself today marks his 18 month birthday! amazing! from being told we would maybe have a few minutes to maybe no time at all with nolan and having 18 wonderful beautiful memory filled months is the best christmas present ever! love you big man!

Nalah...

December 8th a beautiful trisomy 18 miracle named Nalahpassed this day late at night,her mom Marianne and familynever expected this.She was rushed to hospital by ambulance wherethey told her that she has chronic lung failure,she was put on 15litres of O2 and told her mom not to worry.Things changed quickly and Nalah was rushedinto surgery for a possible trach and to be vented,she was in heart failure at
that time.She came out stable but suddenly she was crashing doctors did CPR everything they could do for her but there was no way she could not recover from what happend that night.Nalah lived to be just over 2years old, a beautiful girl loved by so many,many who she met and many who she didnt.She will never be forgotten,nalah was the first little girl i knew about living with this where i live and i got to meet her mom a few times,so this is very shocking.Her heart is golden as she flys high.a beautiful angel.we will all miss.please pray for her family.She has a big sister named Karis who has taken all this very well and misses her dearly.

another birthday-17 months

Nolan turned 17 months november 25th.Hes still going on strong and mighty,starting to say "dada" and LOvES laughing with his big sister lexi.This christmas is going to be another great memory and fabulous year this is more than i could of ever imagined when we first found out about trisomy 18 and nolan. All we wished for was a moment and we have had almost 2 years with our amazing man. We love him.
Weight-14lbs 7.5oz
Length-27inches

Celebrating 16 months!

My family is proud to be singing yet another birthday to Nolan his 16th month here in this world,his second fall,his second halloween,his second winter and second xmas.It's amazing what this little man has accomplished in 16months,he's smart in his own ways, he has recently been trying to say words, like dada and getting very vocal about what he wants.His temper is just like a toddler too, its kind of cute :).He's a little big man with great personality.Happy birthday Nolan.

Nolan scared me...

Very early in the morning at 2:30am Nolan woke me up with a blood curdling scream, i have never heard this from him, so i was very concerned.I had to yell out "help Me" to wake my little sister up.I needed the phone, i was about to call 911 as i holding nolans right arm down(he has been twisting his right arm backward then pressing so i thought he might have broken it in his sleep) i also thought maybe he stopped breathing breifly then came out of it,( he has never stopped stopped breathing before) since i didnt have the monitor on him last night,i really didntknow what caused him to do this.But eventually he did calm down and we cuddled for about half hour before i put him back to sleep.He loves being hummed to while being rocked...after i set himback in the playpen to sleep, i hooked him up to the monitor, everything was perfect.Today he seems to be himself so maybe his arm might of fallin asleep or maybe he had a nightmare,i have no idea what this was, but it freeked me right out.

Kids love swimming,nolans first time!

Most of you dont know yet, that nathan and I have decided to move away from Edmonton to where my mom lives about 2 hours away.Nathan got a better job where we are relocateting and it makes more sense to just move where WCT is (worksite) since he will be out of town alot, i will need some help with the kids and my mom is always there to help out.This way i can finish school and do what i need to get my career.It's beautiful here, we found a house and will be moving in on the 30th this month.This means tons of traveling to the city for nolans appts! but thats okay.Since being here the kids and I do recreational things daily even if its a just a stroll down to the park or to the river where lexi enjoys throwing rocks and sticks, but best of all we bought a monthly pass to the rec. center where Lexi and Nolan enjoy swimming almost everyday! Yesterday i decided to take nolan to see how he would like it,Well he LOVED it! he can handle about 30 minutes since he did get cold and turned kind of bluish, but i can say its great physio for him! and lexi learns to swim better each time.It's sad leaving town when we do but its best for us right now.Im going to miss his homecare nurse but i will be keeping in contact with her about nolan.It's a good change.

September 25 2007- LEXI is now 3!!

Our Saturday september 25 2010 went awesome! we packed up the kids early morning and headed to the great mall West Ed.We planned that we would take lexi on few rides and treat us all to the sea lion show, which by the way was excellent!Lexi didnt take her eyes off Clara the entire time.We took the babies down into the sea cavern as well, where they both seen penguins,a croc,3 huge sharks,3 gigantic turtles!, and many other sea lifecreatures, it was pretty amazing.Then that evening we came home and packed for the weekend at my moms, they threw a party for lexi with a great BBQ, and tons of presents from family, she did well this year!Nolana got a few things too, since he did turn 15 months!! Happy birthday to him too :D.Later on in the evening the entire family went down to the athabasca river, where lexi threw rocks and we adored the sceanery,It was one of the greatest weekends every we all enjoyed ourselves.

Nolan gets over another one...

This week has been sure hecktic! Lexi ended up sick last weekend with some kind of wierd flu, she spike a temp of 39.4 and hadnt peed in nearly 12 hours, so nathan took her in the ER to get checked out.The next day she was fine! Then this past weekend Nolan picked up the same thing, except he had the tummy flu and some kind of cough he's much better now, but it just seems like we never get a break with sicknesses around here! no matter what we do, we do all the handwashing and santizing we can and still sickness enters our home.We are just glad it wasnt a hospital stay! infact nolan lately has been sooo interactive with toys and wanting to do so much.Lexi turns 3 on the 25th and nolan turns 15 months on the same day...our babies are just amazing, hard to believe how fast they change...

Lexi and Nolan enjoy the PARK!

Happy 14 months Nolan!

Look at his NEW DO!

My Birthday Present.

August 14th was the day i entered this world with many hopes and dreams ahead in my life...i grew up fast.Im now 20! and the best present i shared was being able to be a family celebrating this day with the people i love especialy Lexi and Nolan...my life is complete.Nathan made a spectacular super! He smoked salmon on the BBQ,made mexican salad in tortilla shels he shaped into bowls,bruchetta and potatoes,might i add in ALL FROM SCRATCH! even the marinate for the salmon.He is an amazing cook! im glad to have him in my for many things including this.I did have a light beer which by the way was very nice, as i do not drink.My birthday present was simply haveing my family and being blessed to have such amazing kids.I love them with all my heart.

Home sweet home....

This morning we finally came home, with our miracle boy Nolan and our sweetest most beuatifulest Lexi.I will miss the nurses and doctors, and how kind they were to us during our very long stay,it was a tough road.We are just so happy to finally be all together again.Nolan is doing much better being home for the few hours that he have been,We know in a few weeks he will be back to himself completely.So for now it's home sweet home.

Getting so close.

Yesterday we got the test results back,nolan tested positive for rhino virus and the tummy flu,so glad it wasnt something worse...i can deal with the virus and flus.Nolan is getting better faster than his doctor anticipated each day he comes in and says he sounds and looks better.We are so close to finally comming home, its just a matter of time!

Going home turned into...not anymore.

Yesterday Dr.M came in early in the morning to do his rounds on the kids he takes care of who are in the hospital.We got awesome news that Nolan would be going home! that day was supose to be today,unfortunately nolan turned for the worse, atabout 11pm he started having a stuffed nose and bit of a cough.I thought i was just becuase he was upset from teething,but as the night got later the cough was continueous and nolan seemed to be weezing.This morning Dr.M came in unknown to nolan being sick, after a listen to his chest he turned to me and siad "we arent going anywhere" this news was not what i wanted to hear, Nolan had been here for 2 weeks already! So dr.M ordered chest x rays and swab tests to see what was causing this,probably a virus :( yet again.So now we wait till he is better to officially go home, dr.M said we will be there for while.I know i will need my breaks from that place as it's causing me some anxiety and being somewhat angry i just dont want to be there all day everyday but at the same time i want to be with Nolan...its a tough road but its worth having him, we are just anxious to get home and be a family.

Nolan wasn't ready....

Well yesterday was very eventful and scary, i was a mess.
They extubated him at 8pm july 23rd it was a moment i will never forget
he tryed to breath on his own and it didnt look right :( he was struggling and breathing so fast.They put him on high flow oxygen to see if this would help...but around 9pm his oxygen was dropping,fast.The doctors and nurses rushed to his side and started "bagging" him this helped, they decided to do an emergency x-ray this showed that his left lung looked callapsed, so they put him on b-pap for the night, his breathing improved alot!So yesterday afternoon when we went to see Nolan we walked into the room and he had his eyes open and was moving, but he still looked "different" he was withdrawing from all the drugs he was given, he was so jittery and shaking, but trying to talk :(. It was very hard to keep it all together and to watch our sweet boy going through this.They switched him from b-pap to c-pap this means less pressure given through the mask, it was a great improvement and his lung had finally opened!i was happy.Later on in the afternoon we suddenly got moved to an isolation room becuase his test results showed he had virus, this explains why extubation was so hard on him on top of everything else.We did however got to "hold" him just lifting him off the bed but still close to it,he reached up for me it was the sweetest thing to have happend this whole time, he knew his mommy was there and that his daddy was too.For now they will be slowly wiening him off the morphine and adavan becuase it's too hard on him to just stop everything suddenly, we cant wait to have him home.

Update

Well nolan is quiet the "wild child" in the PICU tuesday at 2am while i was at home sleeping he was trying to sit up and the nurse had to physically hold him down...he had to be "paralyzed" because they dont want him doing this yet.Fortunately lastnight he was settled and got his rest.Feeds have been increased and he is doing everything they expcected him to do...he is doing wonderful.He is still intubated and the plan is for tomorrow that it be takin out...but before this happens they will lower the ammount of air going into his lungs so he can slowly take over...so when he becomes extubated its not so hard on him, he is on multiple meds to keep him comfortable, i will update what those are when i get home,we are just happy we are moving on up! and nolan is such a warrior! we love him.

Surgery is done....

Yesterday was so stressful...from start to finish is was about 3.5 hours long before we got to see him again, it was literally touch and go.The surfery itself went wonderful barely any bleeding at all!Intubateing him was difficult so he still has the breathing the machine in him, he is staying in the PICU at the stollery hospital, unfortunately i can't stay over night with him as they dont have beds for the parents in there :(. Iknow he is in great hands, he has nurse 24hours in his room doing everything for him.They will try extubating him hopefully tomorrow, he keeps trying to wake up but they cant let him do this due to the tube going down his throat so he had to be re sedated this morning.I hope his recovery goes quickly and he can tolerate his feeds again soon so we can all be home together, i miss my babies.

Pre-Admission appiontment was today.

We had nolans preadmission appointment today, it was 2.5hours long.
i will give you all the explanation of what happend, we arrived and i had to fill out
a form that was 5 pages, once i finished we called to a room, where a nurse explained things briefly, she was very nice.She told us we have to be at the hospital for 9:30am and that his surgery is scheaduled for 11:30am.Nolan cant have any solids or milk after midnight, just sugar water through out that time untill 7:30am.

We then were walked to the Xray waiting area, where nolan had to get some xrays of his chest.The stupid people hurt my baby, the chamber they have to sit him in that im very familiar with, they did wrong and i had to tell them that he was too low and they were squishing his poor face inbetween the plastic!!ugh i could of freeked! well i pretty much did.Anyways!after xrays we went back to the room and seen the aneastesiologist who then explained to us alot!

they will be inserting an iv into his hand where the medication will run that will keep him asleep during the operation(they dont want to gas him to sleep because its to stressful on him with his cardiac issues), along with a Epidural in his spine to control the pain as he wakes up,(this will be inserted while he is asleep so that when he wakes up he wont feel the pain), he will also have an iv in his neck to monitor how much fluid is going in during the procedure(this is an accurate reading) and to watch his blood pressure.In total the operation from when they start to when he is the recovery room is up to 3 hours we cant see him while he is in the recovery room(45minutes).

He will be in PICU becuase he will have a breathing machine down his throat :(
they will not be in a rush taking this out untill nolan is ready.As they do not want to cause
any stress on his little body and heart.

Nolan also had some blood work done today:( it made me cry seeing him in pain.
I had just recieved a call saying we have to be in before 9am becuase they need to redo the blood work to make sure it is accurate(they didnt get enough blood to test)

Please pray for our nolan as he goes through this surgery and pray that things go as planned and that we will be able to come home soon,

thank you all for being there when i need, this is not easy, but we love him dearly and know this best decision to make for him, in the long run he will be so much happier!

love you all and i will update as soon as i can!

Surgery is set.

Next tuesday is nolans surgery day, for his fundo repair and g tube placement.We are feeling very nervous as it's so soon in such little notice, but we pray and hope for the best, we know nolan will be a much happier little boy without a tube going down his nose.I will update next week after its all done, please pray that his recovery goes smoothly.

They love eachother so much

The Party

June 27 2010 a hot sunny day...was nolans celebration surrounded with family and friends.The day was busy and fun we had over 50 to share this special day :) we had 12 balloons release for the angels and also symbolizing his year that has passed by quckly! when we cut te strings they floated into the tree and got stuck, luckly nathn climb up and set them free..it was like they didnt want to go.We had a gift opening and lots of cake! Our amazing photographer from NILMDTS to came out and did hundreds of pics of the special day, she did this on her own time because nolan is her first to defy all odds of life.All in all it was a very emotional and fun day.Nolan is our miracle and is such a gift to us.We love him dearly.

We MADE IT!!

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!!!

He's proud to be their daddy...

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.

I want to carry you forever..

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.

The countdown BEGINS!

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

Nolans first Zoo trip

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!

WE ARE HOME!!

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!

Change of plans

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.

Going home

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!

It's Been A Week...

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.

Weining off oxygen..

Last night was good, the new set of nurses came on for the evening and they lowered his oxygen to 1/4litre unfortunately again he fell under what they wanted him at, 88 to 96 he was falling past 82%,so they put him back to 1litre so he could rest properly, they tried again later on while he was sleeping and he stayed around 84-93 which is getting good!The pediatrition came in today and talked to me about how he was doing and i said he seems to be getting alot better then when we first arrived, i want him off oxygen soon, he said slowly he will get there and he would stop by tomorrow early to see if nolan was ready to go home! he has to keep his oxygen up on his own 24 hours after its been off.So we pray this will happen tonight! it has been discussed that if he cant get off this week that would it be possible to go home with oxygen so he can rest at night since he is very restless at night and crying... im starting to wonder if its b/c he dips so low that he struggles to breath and cries.When here night time has been alot easier besides the gas(that i can handle).Please keep nolan in your thoughts we are both really wanting to go home since we havent been home for nearly a week.

Still Here

Just would like to update everyone on Nolan...we are still currently in Isolation protecting nolan from any other germs.He is still on oxygen trying to fight this virus off, he just needs the extra boost to get over this bug.They talked about his "normal" levels in oxygen and in cardiology when they checked it at times a couple months ago it stat was at 88-96 they would like him to be at that without oxygen for at least 24 hours before going home, unfortunately that hasn't happend yet his levels drop after a few minutes of lowering the oxygen.We are hoping within the weekend he will hold his own so we can go home.They have also concentrated his formula so he can get more calories, nolan is very gassy and has been throwing up at times after his feeds they are unsure why but most likely due to the build of secretions in his nose causing him to gag.This evening i felt some weezing in his chest and called the nurse in to listen and he had heard it too, it was very loud in his chest and back on both sides, right now i am waiting for his night nurse that looks afer him to come on cause she knows him best, nolan might need meds if phneamonia is starting. Until then we are at the stollery on 4th floor room 14 in peds surgery.The nurses and doctors are sooo great and caring here i love them! I will share more when i get the chance or get to go home sometime in the near future.Please continue to send prayers for little nolie so he can home soon!

Emergency

Hi everyone, i have finally got to a computer in the hospital that has allowed me to get on here but not facebook,anyways a whole bunch of things have happend in the course of 12 hours, we are very exhausted..we decided to take nolan into the sturgeon hospital around 6pm the immiadately admitted him a trama room and started oxygen right away due to his stats being 88.As soon as they O2 started it went up in the 90s the did many tests and x rays to find what the cause to his drop in oxygen.The doctor wasnt comfortable sending us home so we were ambulance transferred to the Stollery where he is on continuous oxygen to help him.The think it is a viral infection and untill he can keep his stats up we are here i will update everyone when i get a chance to add more details, thank you for your prayers, as we need them very much for him to get better!

Nolans New Hair!

Yesterday we decided to give Nolans hair a trim, it was getting so long and hot for his little head, now that summer is here its better for him, he is soooo handsome!

My Mothers Day

Today was very special, special in sooo many ways.This exact day last year i was pregnant with Nolan and wondering if i would ever get to have mothers day with both of my babies, this year i did, and im sooo over the moon about it! This morning i got up bright and early excited to start the day, we went out for breakfast and it was delicious! thanks nathan.Then we decided to go to the carnival that was such a blast to, me nathan went on the zipper and he deffinately scared the crap outta me!Lexi went on a few rides and was such a good girl..nolan huung out in his stroller looking around at the rides and people passing by.It was very nice to have both my babies today, the greatest gift of the them all!

Consultation With The Surgeon

Today was a very nervous day for us...as we had our appointment with the surgeon to discuss a G-Tube placement for Nolan, We think this would be good for him to have and too get rid of the Ng tube that he hates so much.The appointment went well, i had my binder full of papers and in that was my questions for Dr.Lees.I had it open on the patient bed ready to ask away! He came in and introduced himself quickly, then opened up Nolans file and read about his condition.He then asked what his current weight was i said 11 lbs 11.5oz.He then looked over at my paper full of questions he sat up on the table next to me and Nolan, he began to explain everything my questions were about,He's totally awesome!


We didnt really have to ask anything at all, The procedure is fairly quick and minor ...I had a concern about Nolan dying on the operating table, he reassured me that he has NEVER had a child die on his table, even the ones with more severe cases than Nolan, he also told us that they will be treating him like any other child, they will not be underlining his condition to not use any intervention if something should happen during or after surgery, they will do anything in their power to make sure he will be fine.He will also be on constant monitoring for his STATS , we will have to stay in the hospital for 48-72 hours after the operation, it was also discussed that they may put him on a ventilator and keep him PICU for 24 hours just to make sure.We feel very at ease knowing that our nolan will be in great care while he undergoes this surgery we are looking into the date for the surgery after his 1st birthday.They will be calling us in about 1 month with a set date, we are still alittle nervous as any parent is when its surgery no matter how big or small it may be, i just dont want to see him in any pain, but we look forward to not haveing to change his NG tube anymore.Please have Nolan in your thoughts and prayers when this big day comes, thank you.

It's Snowing In MAY! (only in alberta)

Hanging out on a snow day, in his purple dress shirt!


This morning i woke up to sweet Nolans little voice letting me know it was morning and time eat.I walked out to my living room craddeling him in my arms kissing his soft warm cheek, i love the smell of him in the morning.I then opend my curtains to see a blizzardy day! snow everywhere! i was accually shocked, you think we would be used to the snow since sometimes it decides to come out of no where!But im not used it, i was hoping for a sunny day to take the kids to the park.Looks like we will be having a snow day.

Edits from a friend...

10 MONTHS!!!

Today we got to celebrate Nolans 10th month with us, it was a great day! I made a winnie the pooh cake and instead of the red shirt winnie has i made it blue ...it turned out fabulous! We are so happy we got to spend yet another month with our miracle.Nolan fought hard to be with us in the beginning, im amazed each and everyday at how precious his life is and am glad to have him in my arms.To hold, to love, to kiss, to cuddle ,to touch his soft hair, to play with his feet and hands and most of all just stare in awe at my family...we are complete.

me and my happy feet(Nolan)



Smiles