“Some people wear their smile like a disguise. Those people who smile a lot, watch their eyes. I know ’cause I’m like that a lot. You think everything’s ok, and it is . . . ’till it’s not.” ~ Ani Difranco

I know there has been much jubilation in the past 2 weeks as little moments continue to make each day ‘anewfavoriteday.’  One of those moments came recently when I was elected to the LA March of Dimes Board of Directors and subsequently we were asked to be the Ambassador Family for the 2012 March for Babies.  This is a tremendous honor and means that our family will have the opportunity to share our story and inspire organizations and supportive citizens to help support this very important cause. As many of you know, our first foray into working with The March of Dimes, came with my whimsical need to channel my energies into something positive outside of the blog and all of you showed me the true power of love and giving through your support of the 2011 March for Babies, which helps other families like ours. Since then it has been a whirlwind of events, meetings, discussions and on-going brainstorming about how to spread this very important message.

November kicked off Prematurity Awareness Month and November 17 is World Prematurity Day (you can learn more about it, http://www.facebook.com/WorldPrematurityDay)  and so I thought I would share with you, the speech that we (me and KSP) gave for The Signature Chefs Event benefiting The March of Dimes in September.  It helps if you can picture me bawling, dabbing my eyes, and croaking out words:)

This is a small look into the halls and rooms we went down and a brief glimpse into where the window to my soul still opens and closes on a daily basis depending on what is happening with our lives, how the kids are doing, and the progress that we are making. For the most part there is completely acceptance, but on some days, the window closes a little for some repairs to be reopened when it’s able to feel the fresh air blowing in again.

Many of you are like me and smile and say you are fine, even on the days perhaps your window is slightly closed for repairs.  I am cracking my window a bit today as today I am struggling and need some time for repairs. It comes on fast and furious, like the rain showering on our house as I type, but this too is ok, because the storms clear away the clouds and tomorrow perhaps we can open our window to ‘anewfavoriteday.’

Here is a peek into my window, I hope if you feel up to it, perhaps you will share a peek into yours.

Shannon:

Thank you so much for having us, we are so honored to be a part of this amazing event.  I am Shannon Pruitt and this is my husband Scott.  I should warn you, I will probably cry at some point during this talk so feel free to drink up and join me…or maybe you have had enough already that you can just cry along, the more the merrier.

The reason we are here tonight is because,

Every year half a million babies are born premature, in 40% of the cases the cause is  unknown ~ from The March of Dimes

And This is the story of 2 of them, our babies, Quinn and Emma..

Shannon:

When my water broke at 4:30 in the morning on October 16, 2009, I was totally confused. I was only 28 weeks pregnant and was still trying to figure out what size a rutabaga actually is, since according to my baby books and websites that was the size of the twins in the womb that week.  After convincing myself that I was not actually having an accident over and over again, we called the doctor and he told us we needed to come to Cedars right away.

Scott: All I remember was my name being yelled, Scott! Wake up and then Shannon saying something about googling what happens when your water breaks.  It was 4:30 am so I was a little foggy but once we were told to go the hospital I knew it was real, but still so very surreal.

Shannon:

Even through I was technically high risk because we were having twins, I had had 2 ultrasounds that week and everything “looked fine”.  So even when my water broke for wasn’t terribly worried as I never imagined that the babies would come then and if they did, I really had no clue just how dramatically that would change our lives forever. (See here I am on my BB telling everyone I work with that I will be staying in the hospital for 6-8 more weeks…or as it turned out only 48 more hours).

Scott:

I remember standing in the room alone as they wheeled Shannon into the OR.  It was all so confusing, We had barely slept in 2 days and suddenly my entire future was rolling out the door and I had no idea if they would be ok.  It was then that everything hit me, and when Shannon’s mom came into the room and gave me a hug I cried uncontrollably for the fear and helplessness I felt in that moment.

Shannon:

I remember looking around the room. It was stark white and there were between 15 and 20 people running around in scrubs with yellow coverings Dr. Katz my awesome OB looked at me directly in the eyes and said, all these people are here for you and your babies.  I won’t take through the details of what happened next, but when noone says a word when you baby is born for the fear that he can’t breath because his lungs aren’t developed or says to you that it’s very important that you only push when I tell you because we are trying to prevent a brain bleed for Baby B, you realize that this is not a movie and that these are the babies that you have tried so hard to protect for 7 months but that despite everything there is nothing that you can do for them now other than follow directions.

 

Scott:

Leaving Shannon in the OR to walk with the babies up to the NICU was like being in a dream.  You have no idea what awaits you.  The hallways feel long and stark despite the colorful footprints lining their way to your babies new home.  When we went through the doors, it was like entering another world.  Machines and incubators and nurses everywhere.  I watched as everyone worked quickly to settle the babies into their new homes but even though I was watching I had no idea what was really happening or what awaited us.

Shannon:

Even after the delivery I was so exhausted I had no real grasp on what all had happened, but I did know that I hadn’t yet held my babies and I had no idea where they were and that I had to find them immediately.  The hospital staff had other plans for me so as I waited in my room I felt desperately lonely. I wasn’t alone because people were all around me, but I felt like that scene in a movie where you are stationary but life is passing all around you.  There is no noise, just motion and all you want to do is be somewhere else and then I finally made it to the NICU.  For me, I didn’t crumble I just stood quietly in the entry way observing everything around me.  Beeping, hustling, adjusting, monitors, blinking lights, bright lights, ventilators, buzzing, it was a world unto itself.  I was searching for them.  My heart found them before my eyes did, but as I approached their tiny frames in their tiny cases with tubes and wires attached to every part of their bodies, I just thought, it’s too soon, they are here too soon.

 

Scott:

Being in the NICU is like going to war.  Day after day you get dressed and you walk tentatively into the battlefield.  You have no idea what awaits you.  One day your child is doing well and the next they are literally hovering near death once if not several times a day.  During the first week of Quinn’s life they could not get him to hold an IV because his veins were just too tiny. So after 6 days of life Quinn had his first surgery at his bedside to have a tube inserted through his neck and down near his heart to deliver his much needed meds, fluids and everything else he would need to stay alive.  This was the first of many times we literally held our breath while we waited for someone to tell us everything would be ok and the baby made it. To watch your child turn blue because they stop breathing or see needles and vials of blood for blood transfusions, or surgeries is so daunting not only because they are your babies, but because they are just so tiny that it’s amazing they can get through any of it.

Shannon:

As a mother, my most challenging day was the day we had to leave the hospital without Quinn and Emma.  This picture is a snapshot of my most difficult moment.  Until then it all did still feel a bit like a dream, as if we could pretend even for a few days that we were just like everyone else and the babies were just down the hall.  Now, they would stay. There would be no fumbling with the carseats, or bringing the babies down as I am rolled to the car in a wheel chair. Instead, I would be wheeled down but they would stay.  My heart broke that day and every other time over the 113 days when I pulled into the hospital parking lot and would see these images of other happy people taking their babies home. On the day we left the hospital my own mom looked at me with such sadness and Scott hugged me with all of his heart  and I went to a place that I had never been before…total defeat.

 

Scott:

Each day I woke feeling scared and nervous. I actually didn’t hold either of the babies for 2 weeks because they just looked so fragile and I didn’t want to hurt them or have anything go wrong while I was holding them.  They were so tiny and so while I would do the containment touch, this is where you put your hands around their head and feet, with them in their isolettes I was terrified I might yank out an IV or  their feeding tube or whatever else was attached to their bodies.

 

Shannon:

I spent an average of 9 hours a day in the NICU. I often equate the experience to moving to a foreign country where you don’t know the language, or people or anything about it but suddenly the lives of the people you love most in the world are at stake and you have to learn and adapt.  At that time, noone other than the parents were allowed in the NICU so even my mom who had flown in from Oregon could not come in to meet her grandbabies, she was so close yet so far away it was terribly sad for her to have not only her babies in very uncertain circumstances but also her oldest daughter, me, in a state that she had never seen me in before and there was nothing she could do to help.. And so here we were in a foreign land totally alone. We are so grateful to all the doctors, nurses, therapists and support staff who have helped our babies to make it through and became our friends, advocates, supporters and constituents in the care of our children.

 

 

Scott:

When Quinn came home after 90 days in the NICU and Emma after 113 days, I would often find myself thinking “thank god we are no longer in the NICU” as we got up hour after hour for feeding and medical attention for Emma because she was on 24/7 oxygen support.  The fear that something could go wrong at any moment lingered far beyond days and nights within hospital walls.

It stays with you in your heart and creeps up at the most quiet times even when it is clear that everything is ok now.

Shannon:

Our journey has been one of hope, faith, fear and joy for we have our beautiful angels who have given us more love than we ever thought possible. To go back in time to those days where everyday was unknown, sitting by their isolettes, singing to them, reading to them, holding them and not being able to hold them, talking to them, trying to help them know how much they were loved and how even though they had come so early we were all doing everything we could to fight for them to make it, is to walk down a road filled with emotional landmines some good some too sad to revisit.  Now, that they are nearly 2 years old and we will still have our challenges with Emma being considered special needs, I find such love and strength in knowing what an organization like The March of Dimes has done for families like ours and we didn’t even know it at the time.  The funding for research for treatments and medicines that literally saved our babies lives is a gift we could never repay but we have found a purpose in helping spread the message about just how much the March of Dimes does for families like ours before and after they have their children.  We hope you will join us with your support.

Thank you for listening and have a lovely evening.  Enjoy the wine and desert and Thank you March of Dimes for allowing our family to participate in this wonderful event.

xoxo The Pruitts