Re-cap....

BEST FRIENDS

I know I have some new blog readers - as my viewer counts seem to be out of the roof :)  I am so happy that my message and attempt to raise awareness seems to be successful!  For the new readers, I am going to re-cap on our last two and a half years - and for my followers, a summary/repeat as I mentioned would likely happen during my blogging week.  When Lincoln was born on April 18, 2009, we were thrilled to announce to family and friends, 3 weeks early, that we had a boy - although some people knew we were having a boy because my husband really wanted to find out, and I didnt.  We had a 3D ultrasound where the tech told Mike and his family members who were present, that I was carrying a boy.  I thought for sure we were having a girl, and had to ask the nurses twice - a boy?  really?  its a boy?  imagine that, 24+ hours in labour, after he was born, hearing the words "its a boy" and the only thing i said was ... REALLY?... so yes, my husband is really good at keep secrets!  His vitals were good, and APGAR tests scored 9.5 out of 10.  PERFECT! We were in the hospital for 3 days, as he was having a hard time latching, we thought we had finally got the hang of it, but when he wasnt gaining weight for the first 3 weeks of life, i resulted in pumping, and feeding him breastmilk thru a bottle.  The next weigh in, he had gained 2 pounds, and 2 pounds the weeks after.  So, i continued to pump. (crazy i know).  When Lincoln was about 3 months old, He refused the bottle.  Hours would go by, and surely he should have been hungry, but would still refuse the bottle.  I am a google addict.  So i researched it.  What did I come up with?  I do remember coming across one site, where mothers who were having the same problem, and most of them had mentioned health issues.  Impossible i thought to myself, so resulted in more research.  GERD - that must be it... Gastroesophageal reflux disease ...a condition in which the stomach contents (food or liquid) leak backwards from the stomach into the esophagus (the tube from the mouth to the stomach). This action can irritate the esophagus, causing heartburn and other symptoms.  So, I took Lincoln to the clinic, where we only had a nurse practitioner.  She threw my idea about GERD out the window... and insisted that I wasnt waiting for the proper hunger cues.  As a new mom, who do you listen to?  your health care provider... OK - so lets just try this again... NOPE, still doesnt want the bottle... so what did I do?  came up with the thought that, he likes sucking when he is sleeping, so I attempted to put the bottle in his mouth once he decided to sleep (about every 2-2.5 hours)  IT WORKED!  He was drinking 5 oz every 2.5 hours!  perfect!  That lasted quite a while.  And every appointment I had with the nurse practitioner, i would still mention to her that he would only drink when he was sleeping, and she just said he was being silly.  He was gaining weight, and thats all she cared about (or so it seemed).  By 7.5 months, i was tired of pumping, and thought i would slowly introduce formula.  Lincoln would drink the formula bottles, NO PROBLEM... so that was a quick transition.  He still wasnt eating solids by that time, as everything he would swallow would come right back up.  The nurse practitioner decided to book us an appointment with a paediatrition from Peterborough.  Tick tock, tick tock - by 9 months, we had the appointment.  The pediatrition looked at Lincoln and decided to order blood work for chromosomal abnormalities.  She informed me that they range from colour blindness to down syndrome.  She knew the moment she looked at him that he had it, but told me afterwards she couldnt tell me on the spot - which i completely understand!  who wants to break the news that their 9 month old has down syndrome?  now what?  we wait... tick tock tick tock, way too much googling....a simian crease - hmmm, no, not my Lincoln... He doesnt "look" like he has it...or does he? 5 weeks go by... THE RESULTS ARE IN - but we have to go to Peterborough to go over them... yup - obviously theres something they found.  We were then informed Lincoln had been diagnosed with Down syndrome.  She listened to his heart, and thought she heard a murmur... and said we would be referred to the hospital in the future for an echocardiogram.  We took the news, and walked out the door.  I burst into tears.  How could this be? i thought to myself... my poor little boy is going to be "different" his whole life... Did I care?  NO - I personally didnt care.  I cared for LIncoln... and his future.  His future of being in school... and all the kids letting him know that he is different, people making fun of him because he "looks" different.  It was a quite hour and a half ride home, where two phone calls were made in the back seat.  I thought I was fine with the news, until i tried telling my parents and my husbands parents.  When I had to say..."he has down syndrome"  it was very hard. and that was the end of the conversation.  So needless to say, thats all the phone calls i made.  My mom and sister showed up the next day - clearly knowing that I could use the support.  All was ok.  Lincoln was the same Lincoln he was before the diagnosis.  Meh, whatever... I kept thinking about how great all of his accomplishments were going to be.  I really didnt care!  the next day, Lincoln was having a hard time breathing, so i booked an appointment with the nurse practitioner.  When we got there, she grabbed a Dr, and they both sent us to emerge.  X-rays were preformed, and I was just waiting to get out of there so i could go back home where my mom and sister and nephew were waiting for us.  We never made it home.  We took an ambulance to Peterborough because LIncoln had to remain on oxygen because his stats were sooo low.  pneumonia.  ok God... whats next I thought. bad things happen in 3's right?.. so there had to be something else.  YUP... the echocardiogram was preformed ... ASD they told us.  Oxygen levels were low - pulminary hypertention - as a result from the hole in the heart.  WOWOWOWOWOWOWOW. As i sit here and re cap myself on the week of the diagnosis... all I can think is .. that was alot of events .. Thank you LORD for keeping me sane!!  I read a blog yesterday where a mother went through the exact same thing - except when the baby was a newborn.  As I read it, I thought.. man, that must suck... wait a minuite - I went through that, and it didnt suck... God kept us strong, and all thoughts were positive!  Thats how i stay sane.  We were in the hospital for 5 days, and when we got home, we snuggled our little boy just like babies like to be snuggled.  About a month later, we had an echocardiogram booked at sick kids in toronto.  2 holes they say, semi large, but not too large.  Plugging the holes was something they thought was necessary to clear up the pulminary hypertention.  SO - back to my *googling* on why my baby wouldnt eat...a medical problem.  A heart murmur, 2 holes in the heart... and this wasnt once heard by my nurse practitioner?  OK - time to get a DR!  We had a meeting set up with a geneticist, waste of time really... but standard procedure.  She wrote a letter to our local clinic here, stating that Lincoln NEEDS a DR.  not a nurse practitioner.  what a releif - maybe this time my health care provider will actually LISTEN to me!  And I love our Dr.!  ok, so, surgery time.  turns out - he had 3 holes measuring to be 12mm in diameter.  That part of the heart chamber is 5 cm... so more than 1/5th was wide open.  HOLY CRAP!  How was this missed?  I can keep questing myself, or move on... its fixed!  pulminary hypertention resolved.  Perfectly healthy!  Now we were set up with five counties.  Speech commenced, physio thearapy commenced, occupational therapy commenced - and here we are ... on the road to success.  When Lincoln turned 2... what better present to give him than a life long friend, someone to stand by him when other kids at school decide to poke fun at him, someone to encourage him .. a BROTHER!  Parker was born 8 days before lincoln turned 2.  They are already great friends.  Lincoln is tuffing parker up - his favourite thing to do it count to 3 and BODY SLAM him.  Parker doesnt seem to mind as he just laughs when Lincoln does it.  and no, that doesnt mean i let him do it.  Lincoln wants Parker to be as tough as him.  And Lincolns pretty tough, if you consider what hes been through!  We keep pushing Lincoln to reach his goals.  He now walks full time - started when he was about 2.5 years old.  He now eats finger foods, all the time.  NO more purees! (just when the new one started - ok, so no more purees for Lincoln).  What else?  He is in daycare part time - which he seems to LOVE. His teacher is great, and He always has extra long naps on daycare days!  So theyre working him hard too! (and it gives me one on one time with Parker).  With that said, thank you everyone for reading, and encouraging me to keep up with my week of blogging to raise awareness.  I had a hard time thinking of what to write yesterday, although it was a pretty busy day, with babysitting my friends 2 kids, a teething baby, and a toddler who didnt want to nap...it was hard to think of something. I didnt think i could think of anything new to write... so I went to bed wondering what to write tomorrow... a re-cap popped in my head, and here after 45 mins of writing, i have a novel. 2 more days to go... time to get this brain thinking...