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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.