Monday, September 21, 2009

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 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 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 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 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 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 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.