Friday, November 30, 2012

The diagnosis aka baby's first curve ball

Now that the introduction is out of the way I'll fill in the details.

Pregnancy was tough. I struggled physically and emotionally the entire time. So much was going on and I wanted to share but every time I sat down to write about what was going on I just couldn't do it. I just couldn't write these words... My son has Do.wn

I had said that I wanted to blog more during the pregnancy because I wanted to remember all the details.  I just couldn't do it after I got the diagnosis.  The emotions were too big and too raw.  I didn't want to hear 'I'm sorry'.  I'm not sorry.  He's amazing!  I was/am so very worried about the journey ahead of us and the incredible task I have of being battle ready and making sure he gets everything he needs to succeed.

I was nauseous constantly and had a really hard time keeping food in my stomach.  I thought it was miserable when I was pregnant with Mr. O but this time around it was even worse.  I felt so terrible all the time and tried to stay as still as possible. Not an easy thing to do with a toddler! 

The emotional stuff was even tougher.  My NT scan and blood work was done in late February when I was about 11 weeks.  The scan looked ok but the blood work came back that my odds for having a baby with Ds was 1:4.  I found out there was some concern when the hospital called me to schedule an amnio and genetic counseling.  The poor lady on the phone! Usually the news comes first from your doctor and this was just the beginning of how they mishandled things.  When I called the doctor's office to find out why they had referred me she told me the results and really pushed hard for additional testing.  I told her that I wanted to wait and see if there were additional markers at the level II ultrasound closer to 20 weeks because I wasn't going to use the information to make any decisions and I'm not all that fond of large needles.  She continued to push for finding out for sure now so that I could consider terminating because I'm a single mom and needed to think of my other child.  Why I didn't hang up and immediately find a new doctor I just don't know!  ( I did switch obs later)

I thought about it for a few days and decided that waiting until 20 weeks was going to make me crazy.  I wanted to know either way now so that I could either stop worrying or start preparing. I would also be able to find out sooner if baby was going to be a boy or a girl.   I had a CVS test done at a high risk practice in a big hospital.  The staff was amazing.  The doctor was so kind and I liked him immediately even though he was poking me with a giant needle.  The results were back a few days later and baby was a boy and he did have Ds. 

Initially the news was heart breaking and it took some time to find my balance.  I'm still stumbling a bit from time to time.  There were lots of tears and guilt.  Thankfully most of my fears were based on lack of knowledge. I didn't really know anything about Ds and most of what I thought I knew was based on outdated stereotypes.  The more I found out the less tragic it seemed.   What Ds looks like today is so different than 40 years ago.  Heck, even 10 years ago.  Early intervention has made such a difference on outcomes that there is no reason to doubt that my little guy will be able to do anything that he's willing to work hard for.  College? Absolutely!  Marriage?  Heck, maybe he'll manage to succeed where I've failed! 

Now that he's here I can honestly say that I rarely think about his extra chromosome. He's just a baby and just like any other baby his future is a bright shiny unknown of amazing potential. 

Wednesday, November 28, 2012

Introducing Baby Brother

Baby brother decided to make a surprise early appearance and was born at 33 weeks on July 20.  This little guy has been full of surprises from the beginning and seems to enjoy shaking things up and challenging me in mostly delightful but sometimes terrifying ways.  He spent 8.3 long weeks in the NICU flirting with nurses and I'm just so grateful to finally have him home and healthy.