Wednesday, November 17, 2010

Today Is National Prematurity Awareness Day

This is me on March 15, 2008.  I was 26 weeks and 5 days pregnant with twins.  I was just barely in my third trimester.  I was not nearly as big as I should have been.  I was just told not one hour prior to this photo being taken that I would be admitted to the hospital for 24 hour monitoring for the duration of the pregnancy.  This is my only picture of me pregnant, I wish I had taken so many more.

Do I look scared to you?  No?  Not even a little?  Because I was terrified. 

And really the scared that I was was just the tip of the ice berg that had been building up and up and up and up from the moment we learned that we were having twins and that one of them was struggling with severe Intra Uterine Growth Restriction (IUGR) and might not make it.  And that his brother's condition was somewhat much better even though he too had significant IUGR but was absolutely certain to be high risk due to risks from prematurity.  That we had to chose to risk one to save the other or possibly risk losing both babies.  We counted the days, we were told to prepare as much as we could ahead of time.

I did the best I could to do as much as I could with preparing the nursery, trying to figure out the basic items we'd need for twins so that things were ready before I couldn't do them anymore.  How I loved being pregnant.  Even with the constant threat of losing one or both boys, the knowledge that we were likely to have preemies, I felt great.  It was just starting to feel real, just starting to feel huge and really full.  It was so wonderful.  The lava lamp bubbles I'd been feeling were now pretty solid actual kicks, but not strong enough that anyone touching my belly could feel.  I was not scared of having twins by this point.  I was terrified, and more terrified that they would not be healthy, not live.

Fifteen days later my amazing doctor asked me, "Are you ready to become a Mom? Because you need to deliver in the next forty-five minutes."  Become a mother of twins eleven weeks too soon.

And forty-five minutes later I delivered Cameron Andrew weighing 2lbs 15oz.  I got to hear him cry two teeny tiny little squeaks.  They had warned me I might not hear anything at all so we were instantly filled with pure joy.  My husband got to take this one picture and I could see Cameron, just barely, while laying on the operating table before they whisked him away.

And five minutes later, after much difficulty trying to reach and pull him out because of his size and positioning, Evan Alexander was born weighing 1lb 7oz.  I did not hear him cry.  I did not know if he was even alive for what seemed like several minutes.  He had gone into full reversal of blood flow in utero and his heart was in distress.  They rushed him past me for the quickest peek before rushing him to the NICU.  There was no chance to get a picture of him, I did not see much but a blur of a little bitty pink forehead and lots of tape and tubes and wires zoom past me.

I finally was able to see the boys after recovery four hours later.  I could not touch them for two more days. And when I could touch them I could only lay my finger tips on them gently because their skin was so thin it could bruise and tear.  I was finally able to hold Cameron two long days later and Evan three even longer days later though it was only for 15minutes. 

They lived in the level III NICU at Anne Arundel Medical Center Hospital for 67 and 68 days. Cameron came home on oxygen and a heart and lung monitor and weighed only 6lbs 4oz.  Evan came home with no tubes or wires but weighing only 3lbs 14oz.  Do you know how horrible it is to have someone ask if that's a real baby in the car seat?

It is because of advances in medical technology today that I have my boys. It is because there are talented strong souls who have chosen to dedicate their lives, their profession to saving the lives of infants and mothers.  It is because of our experience that I post today.  Before becoming pregnant I did not know, I could not appreciate what the word "Preemie" meant.  It was always just really tiny baby clothes.  Not a face or a name.  Just an extra small adorable baby. 

But real preemies are so much more.  They are fighters of the tiniest and strongest kind.  My preemies have faced several serious staff infections, dozens and dozens of IV's and blood tests, eye exams that are like something out of an alien abduction science fiction movie, being kept from being held by their mother because they were too tiny, too fragile to be touched and held.  They have been intubated and re-intubated, had their stomachs drained, fought off Necrotizing enterocolitis (NEC), fed TPN through an IV in their belly button instead of breastmilk by mouth. They've both stopped breathing and both have had their heart stop more than once because they were just too little to remember to breath and beat their little hearts with holes in them.   They both continue to fight a wicked battle for growth with feeding tubes causing sensory issues and oral aversions and a vicious case of reflux.  All of this due to their prematurity.  And this is a pretty "easy" story compared to many of their preemie peers who've experienced and survived much harder trials.

Today they look nothing like what you imagine a "Preemie" looks like.  They are catching up on all their developmental growth and abilities.  They are eating better and better every day.  And they are amazing fighters.  But it would not have been this way if we didn't have the wonderful medical technology and trained professionals to give these children a chance at the fight.

So when you see a local business asking for donations to the March of Dimes, please know that the face of what they do is not a cute little preemie sized onsie.  It's not a fat pudgy baby.  It's not the card cut out in the shape of a balloon with a space for the clerk to write your name in black marker.  It's not the itsy bitsy cute adorable micro preemie diapers that wouldn't fit a Cabbage Patch doll.

My hand, micro-preemie diaper, preemie diaper, size 3 diaper.
 It's the child and the families, the professionals and the specialized equipment who help them live and grow.

November 17, 2010 is the national Prematurity Awareness Day. March of Dimes at CMU is inviting you to wear purple on this day to support all of those who were born premature, and to fight for the prevention of prematurity.

Every year, more than half a million babies are born prematurely in the United States. The rate of premature birth has risen by 30 percent since 1981.

Premature birth is the leading cause of newborn death worldwide. Even babies born just a few weeks too soon can face serious health challenges and are at risk of lifelong disabilities. Premature birth costs society more than $26 billion a year.

We need to fight.  Because no baby should ever have to.  Please consider a charitable donation of your time, your money, your ear, your mind, or your voice.  Anything to help more babies around the world have the chances that my children were given would be appreciated.  Thank you.


Christi said...

A beautiful tribute to your boys and your family. Wonderful awareness raising.

Jaime said...

Visiting from the BloggersUnite Fight for Preemies event.

Thank you for sharing your sons' story. I am being forever changed by the blog posts I'm reading today.


Pyjammy Pam said...

they're such adorable boys, laura! i love the picture of them in their carseats. evan totally looks like evan, all 3+ pounds of him. :)

Trish said...

This made me cry and then smile.. Thank you for sharing, Laura.

MoDBev said...

Thank for sharing such an incredible post for the Fight for Preemies. You are generous and brave. Other families reading this can see those happy faces and know there is light at the end of the tunnel.

Tobi said...

Very well said, Laura. I'm so glad Evan and Cameron are doing so well now. They've come so far. They truly are miracles.

Annie and Jason said...

I luv you guys...

Susan Bearman said...

Your twins are just beautiful and it is heartening to read that they are doing so well. My twins were born at 24 weeks. I am sharing the journal entries I kept during their five-month long stay in the NICU at Mike&Ollie: 24-weekers Who Beat the Odds. We, too, have been so luck to be the beneficiaries of the great work done by the March of Dimes. My twins just turned 19 on November 17 (Prematurity Awareness Day!) They are strong, healthy young adults now. Two miracle babies, just like yours.

Blue Moon Mama said...

Very moving, Laura!! And such an intense experience. Those boys are so lucky to have you and Drew!! They are beautiful, spirited boys.

Unknown said...

I was 3.5months premie.. I seen the picture of your boys. They were born the same day I was. I am now 25yrs old pregnant with my first child I have been able to carry... other pregnancies i have miscarried due to internal birth defects. I am now almost 22weeks and have been in preterm labor for some time.. your story has given me more hope that now thing are better and just a little easier for premie baby's In Case my daughter decides she wants to meet us too soon.

Alyssa Kirk said...

I was 3.5months premie.. I seen the picture of your boys. They were born the same day I was. I am now 25yrs old pregnant with my first child I have been able to carry... other pregnancies i have miscarried due to internal birth defects. I am now almost 22weeks and have been in preterm labor for some time.. your story has given me more hope that now thing are better and just a little easier for premie baby's In Case my daughter decides she wants to meet us too soon.