Saturday, January 28, 2017

It's that time of year....

I am entering the time period that I do, every year, where it's getting closer to Noah's birthday and I experience some ... I don't know how to explain it other than to say PTSD, because that's basically what it is. And I reflect. It never fails, it is always around now.

I think any parent, especially mother, who has had a difficult pregnancy, birth and watching their child with medical issues struggle, having to basically force and offer up your child to experience pain for their better good, it's hard. It's really really hard to have to hand your child off to someone and put your child's life in someone else's hands, it's terrifying.

As a mom, I don't fit in a box. Noah has a very strong certain diagnosis and Nathan does not. Nathan - who struggles with medical issues a lot more than Noah - has no box, he no longer fits in a group, and we just float around knowing there is some chromosome issue but not knowing what it is because it has not been found yet. But I don't have a group of mom's I can go to - to give and/or lend support. It's scary.

This time of year I always think of Noah, and reflect on my pregnancy and his birth.... which always leads into Nathan's pregnancy and birth too.

My pregnancy with Noah was really stressful for me. I had a five year old Calahan (who turned 6 right before Noah was born) and struggled through five years of secondary infertility, and at that point I had a total of five miscarriages. I found out that I was pregnant with Noah and a moment in my life where I wanted to leave my ex husband. My marriage was over that summer, but I spent several more years trying to "make it work."

Very early on, we realized things were not "right" with the pregnancy. By 16 weeks things had escalated to the point where it was highly suggested that I have an amnio to find out for sure what was wrong. Because something WAS wrong.

The day before Halloween that year, I was sitting in my doctor's little exam room with my ex husband, my mom, and my five year old son. In that moment, my life would change forever. I had no idea just how much my life would change.

And then my beloved doctor said the words.. "Well, the baby doesn't have Down's Syndrome or Spinia Bifida ... but he has something called Mosaic Trisomy 16."

Everything else literally fell on deaf ears. It was like, there was a buzz in my ears, in my brain, drowning out all the words ... all I could think was, there is something wrong with my baby, there is something wrong and I don't care. I am going to love this baby no matter what.
And then he said "Oh and by the way, it's a boy!" and I heard that.

A few short days later we met with another doctor at the hospital where Noah would end up being born, two hours away from home. He met with us in a larger room where meetings would likely take place. He sat us down ... me, my ex husband, my mother and my five year old son ... and he said things like "no quality of life" ... and .. "mentally and physically delayed" ... and ... "stillborn" ... "no chance of life" ... "possible 24 to 48 hours of life" ... and then he said, "I highly suggest that you interrupt your pregnancy."

Eight words. I thought, I can't interrupt my pregnancy... I'm only 19 weeks pregnant, I can't have him now because if I do, then he'll ... die.... and I realized what he was saying in that second. I realized he was telling me to kill my baby. He was suggesting I abort my child. The child I spent five years trying to have, the one I fought for, loved, cared for, desperately wanted... he was suggesting I don't even give him a chance.

I said .... "that isn't an option." It wasn't.

This doctor turned and looked at my (then) husband and said "And how do you feel about it."
In the half of a second it took me to think - I thought, it doesn't matter what he thinks, it's not his body.... and he said "I agree with her."

And I thought "wow" .... maybe he wasn't all bad...

The rest of my pregnancy I was told he would die. If he didn't die before he was born, he would die shortly after birth. If THAT didn't happen, he would die with in the first 24 to 48 hours. And if by some MIRACLE he did come home, he would be so mentally and physically delayed it wouldn't be worth it.

That was the speech I was given. The words burned into my brain.

"It wouldn't be worth it......"

I would go shopping, and I would find myself in the baby section looking at tiny little baby boy clothes, little boy stuff, toys, everything ... I was looking and I would pick something up and think or say, "I'm gonna buy this" and then my heart would sink, and I'd say ... no, not yet. I would put it back. I knew emotionally if that doctor was right, I would go home and see stuff, and I couldn't. I couldn't go home and be reminded ... I couldn't go home and have to deal with all the baby stuff. I just couldn't do it. So I didn't buy anything. My friend gave me a changing table. My mom got a bassinet, and a car seat/stroller combo... that was all we had basically. Most of the stuff I did have I got at Goodwill or garage sales ... but I couldn't see buying anything new.. .and I didn't buy much. I did get a diaper bag, that was pretty much it.

It broke my heart! I wanted so badly to be excited and experience the pregnancy that I deserved. It wasn't that kind of pregnancy though. It was filled with questions that couldn't be answered, a sense of being numb - protecting myself - and sadness. I had hope, I always had hope that he would beat the odds. My heart screamed he had to be okay, but my head said ... it could go either way.

My OB - the one I loved - never say one negative word about the baby. He never made me feel like he was going to die, or have issues... we made a birth plan, took birthing classes (again) and when the instructor said "Statistics say that every one in four women end up having a c-section, look around, who do you think in this room is going to end up having a c-section...." I stupidly raised my hand and said something like, "with my luck, it'll be me."

I made my doctor promise me, PROMISE ME, that if he thought Noah was going to die, that he deliver him. I wanted one thing - just one thing.... I wanted to hold him just once, breathing .... I would take whatever time I was blessed with - but I just needed to hold him once with breath and life in him.

So at 33 weeks, I was having contractions, I developed Pre-Eclampsia, Noah was having heart declarations, and things weren't seeming well inside my womb. I had told my Mom not to worry that Monday after my doctors appointment. But then the very next day I had to call her from my doctors office (they let me call long distance) and I was crying hard.... I said "Mom, you can worry now." They gave me the first of three shots in the office - to help his lungs mature - before telling me to go straight to the hospital. Don't pass go, don't collect 200 dollars, just go to the hospital.

A few days later Doc said it was time to go get him born, and he had to send me off to the hospital two hours away that could handle a baby that had medical issues and handle a small baby. So after a few days in the hospital - I got transported in an ambulance in a snow storm, two hours from home. I was thinking he would be about 4 lbs.

He said I would have him the following day, 2-2-02 .. the most awesome birthday ever, and he would share his birthday with my Mom. He was going to be her birthday gift.

But I got to the hospital and they did their own tests, and their tests showed things that were not good. His smaller than normal placenta was failing, and they weren't sure he would survive to the following day. I got to the hospital around noon, and at 3:45 PM ... Noah Alexander was born into the world.
I have major PTSD about his birth. The operating room was silent. You could hear a pin drop silent. They were preforming an emergency c-section and the doctor would make comments. But then the anesthesiologist started saying "3:45" over and over again, so I said "What is 3:45?" and he looks at me... and says, "That's when your baby was born."

There had been no cry, no sound, no announcement of "It's A Boy!" They didn't say anything, I didn't see him, I had NO IDEA that my baby boy had even been born. THERE WAS NOTHING.

I started crying uncontrollably ... I was trying so hard not to sob ... they were still inside my belly. They had taken my baby to a room, on the side of the operating room, the door was closed and I could see several people around what I could only assume was my son...

My baby was outside of my body, because my body was failing him, and I just wanted to see him, touch him, hold him - one time - just once - before he died. They were taking that from me! They were not going to respect my wishes. I wanted my baby and I couldn't even see him.

They closed me up, and took me to recovery. I laid in the bed, numb, and there were people who would come in and say things like.... "He is so cute!" ... "He's so handsome!" ... "He's looking around wondering what everyone is doing, taking in everything." ... "He's doing well" ... they listed off some issues with him, and it seemed like forever before I was given a weight.... he was 1lb 12.2oz and 13 3/4 inches long.

He was born at 3:45pm ... my Mom, ex-husband, and his mom got to all see him around 7pm (because they weren't numb from the chest down. I didn't get to see him until 9pm that night. Six hours later.

He was so tiny. I couldn't believe how tiny his little hands were, his toes ... he had the cutest button nose, and a little bit of blonde hair... I could hold him in one hand... he wouldn't all fit in my hand, but he was so tiny. He was hooked up to this and that, he was on a ventilator, and at first he had an IV in his head. But he was so tiny.

And you know what? He didn't die. 40 hours after his birth, his breathing tube was removed because he was doing it all on his own. 1lb 11oz at that point in time and he was breathing 100% on his own with no assistance. My little boy was kick ass stubborn.... nursed and doctors would go by and say "Why is this baby off the vent?" ... it's not often you see a 1 to 2 pound baby without a breathing tube.
He was quickly labeled a "feeder grower" meaning the only reasons he was in the NICU was to prove he could eat and to grow and gain weight. There were a few bumps in our NICU stay, but he came home the day after his St. Patricks Day due date.

Life has been bumpy, he has been in and out of the hospital - not very often though - and countless tests. We had to live by the motto that "anything can happen at any time and we could lose him" ... but recently I was told that we could breath with that - Noah's good. He has his health issues, but he didn't feel we needed to live by that motto anymore.

I call him "The Boy Who Lived" ... he is my first little miracle and not many people can say that they have met or seen a miracle. There are a ton of miracles out there ... preemies that beat the odds, kids with crazy scary medical issues that beat the odd... and even the ones who lost their fights - doesn't make them any less a miracle.

Noah beat his odds. He is amazing and I am so blessed. Not a day goes by where I don't think how lucky I am to have my four amazing boys, to be able to love and guide our two boys with medical issues. Regardless of the death scares and everything else.... we are lucky to have these boys in our lives. They teach us so much more than we could ever teach them.

If you read this far, you deserve a gold star for the day.