Sunday, November 17, 2013

World Prematurity Day - NOAH'S STORY

In 2001 we learned that Noah Alexander would be born with an extremely rare genetic disorder called Mosaic Trisomy 16. We were told - he wouldn't live. Period. I knew better, I had done my research and learned there were survivors. If he had been full Trisomy 16, there was no hope, but with that word "Mosaic" infront of it, gave hope. The third chromosome wasn't in every cell. I was told - though - there was no hope.
31-32 weeks pregnant

We did know, for sure, that most likely he would be born early. Many of the babies who made it 9 months were actually stillborn. In Noah's case, it seemed it would be best if he was born early. I didn't expect what did happen.

At 32 weeks - Noah started to have heart deceleration, I developed Eclampsia, and I was having contractions. I was hospitalized.

At 33 weeks, I was rushed to a hospital with a high level NICU. My OB sent us off saying "you'll probably deliver tomorrow" (the date would have been 2-2-02 for his birth) ... but when I got to the hospital on the 1st of February 2002 they denied me any food or drink and ran a ton of tests. One showed that blood flow to the placenta was barely existent and the placenta was failing.

The placenta through the pregnancy had been smaller than normal and functioning poorly.

We learned later, the placenta was full Trisomy 16.

When they realized this, they said they had no choice, I would under go an emergency c-section to save us both.

What I didn't know at the time, was that all these DRs and nurses were being told Noah wouldn't survive. There was no hope. Not to do anything extraordinary because it would be pointless.

I was rushed back into surgery, and I remember how the OR was silent. The only sound, other than a few surgery commands, I heard was "3:45" ... when I finally asked what it meant, I was told ... "It's when your baby was born." There was no announcement. No "It's a Boy!" ... not a peep. Not one consideration for me. They whisked him away without even letting me see him. IF he had died - I would have never had the one thing I asked for ... and that was to just hold him alive once.

February 2, 2002  (aka 02-02-02) and his Nana's birthday.  1 day old

Luckily they weren't right. He didn't die. He was born 1lb 12oz and 13 3/4 inches long. And he THRIVED. When I got hospitalized - I was given the steroid shots for his lungs. At 12 hours old they were already starting to wean him off the oxygen. But the time he was 40 hours old (LESS THAN 2 DAYS!) ... he was taken off the vent and completely breathing on his own.

Shortly - he was labeled as a "feeder grower" .... meaning, the only reason he couldn't go home yet, was because he needed to learn to feed and grow some.

First time I got to hold him - just after coming off the vent at about 40 hours old
February 3, 2002 - Day he came off the vent and at his lowest weight - 1lb 11oz
the 6.6 is the weight of the diaper.  They would take that away from the total weight of the diaper when it was used to find out their output
I believe this was the first time we did Kangaroo Care
Valentines Day - 2 weeks old - hit 2lbs that day
 Tiny hands and tiny feet ......

Kangaroo Care
With Wedding Rings
Noah came home from the NICU the day after his St. Patrick's Day due date. He was out for a week and ended up back in for Easter because he caught a bad cold and was in quarantine. They told me it wasn't RSV, but they treated him as if he did.

One of the nurses took these for me to walk into the NICU to see St. Patrick's Da
SMILES on his due date!! 
This is about actual size (what I have it sized to on the computer) 
Today, Noah is 11 years old. He is the boy who wasn't suppose to live.... He does have some developmental delays, and he is smaller than a typical 11 year old ... but he is an amazing kid. AMAZING. I can honestly say that I witnessed a miracle. I witnessed him.
Noah - Age 11 

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