Over fourteen years ago, after five miscarriages (including Calahan's twin) ... I finally got a sticky baby bean ... I was over joyed. A few short weeks later it was clear something was wrong. He wasn't growing at the rate he should. A few short weeks after that, we got the news... Mosaic Trisomy 16. Extremely rare genetic disorder. So rare not much is known. FOURTEEN years later, and that hasn't really changed. There is still very little known about MT16.
I was told by the genetics team there was NO HOPE. He would die. It would either be before he was born, or right after he was born, but he wouldn't make it. Quality of life would be so bad, I would be doing him a disservice if he did live. It was strongly suggested that I end my pregnancy. Meanwhile, inside me ... this little baby was kicking away letting me know he was alive and he was thriving at his own rate. I said no. I would take whatever time I was graced with him. I would love him, no matter what.
Fourteen years ago, I ended up in the hospital - unsure of what the next few days would hold. I was so scared. I couldn't even be a little excited. There were ultrasounds, blood tests, amnios, monitoring around the clock, IVs, my Mom flying in, Oxygen masks... and steroid injections to hopefully mature an early baby's lungs ... I had severe Pre-eclampsia and Noah was having heart deceleration... Then I was rushed to a hospital 2 hours away from home with a higher level NICU that could handle a baby like I was about to have.
He was born on February 1st 2002 at 33 weeks at 1lb 12oz (the normal size of a 24 weeker) ...
He was born in a silent room - there wasn't a cry, nor an announcement he had even been born. Just the announcement of "3:45" ... the time of his birth. They stole precious moments of me that impact me to this day, because they were told and warned that my child was going to die by that doctor who suggested I should end my pregnancy.
He was off the vent at 40 hours old. FORTY HOURS OLD! He was quickly labeled as a "feeder grower" meaning he had to grow and learn how to eat and he could go home.
He hit 2lbs for our first Valentine's Day. He came home the day after his St. Patrick's Day due date at only 3lbs 10oz ...
He has had a lot of medical issues, doctors appointments, tests, hospital stays, surgeries, and he has thrived despite what we were told. He is developmentally delayed, but that's okay. In 2007, the week Nathan was born, we almost lost our little miracle. I was told if I hadn't followed my instinct and got him back in after having him in the ER, he would have died. We basically got him in just... in.. time...
He is ... just.... Noah. He is amazing.
He is the boy who wasn't supposed to live, but did! He is THE BOY WHO LIVED.
Pictures from his birthday today :)
He got a (used) TV from us....
Nana and Papa got him a police station lego set he's been wanting for YEARS!!!
Daddy made homemade Chinese. Broccoli and Chicken. Mongolian Beef.
Cake time!!!
