Become a Preemie Warrior today!

On November 6, 2008 we experienced the greatest joy in life. Our family was blessed with two beautiful twins (GraceAnn Elizabeth and Ethan Thomas).  At the time we weren't sure  we could even have kids, so imagine the joy when we found out we were having two! One couldn't wipe the smiles from our faces. 

On November 7, 2008 our joy quickly turned to disbelief and heartache.  In a local NICU my wife and I watched as Doctors and Nurses performed CPR on our son.  The room was filled with monitors going off in the background, doctors working to stabilize our son, and nurses prepping him to be moved to a level 4 NICU.  Everything was happening so fast we couldn't really process what was actually going on in the room.  We watched as Emergency personnel quickly entered the NICU to transport our son and as they entered, the Doctor looked at them and calmly said, "You won't be needed".  Why we asked, why?

Nurses ushered us to a room next to the NICU and seconds later they brought in our son.  Moments which seemed like hours passed as we sat and held our son. The room was silent as we tried to comprehend what had just happened.  Shortly thereafter, a doctor walked in and checked Ethan's vitals for a final time and looking at us he simply said, "I'm sorry, he is gone".  The pain a parent feels at that moment is indescribable.   We had only been given 24 hours with our son, but those 24 hours would change our family forever.

Ethan and Grace were born eleven weeks premature with Ethan weighing 3.2 pounds and Grace was 2.6 pounds. At the time we thought prematurity just meant our kids were born early and needed time to grow. Unfortunately, our view of prematurity was not reality and we learned quickly with prematurity comes a lot of complications, ups and downs, sleepless nights of not knowing what the next hour might bring, heartaches, and fear of the unknown.  During the first year of Grace's life we would spend approximately one hundred nights in the hospital and each day would bring a new challenge.  We spent countless hours watching the monitors. We would witness multiple desaturations (which are periods of time when babies forget to breathe), learn she had a cyst in her throat creating a 60% blockage, battle a bacterial infection which at one point was thought to be meningitis, and if that wasn't enough, we thought she had cystic fibrosis or hirschsprung's disease. 

My wife and I have a strong faith, but even our faith was being tested during these days; until a cold December day we were given a sign everything was going to be ok!  A day earlier, we had received a Christmas ornament with the saying "Snowflakes are Angel kisses from Above"! Little did we know how powerful those six words would be.  During one of the challenging days in the hospital, Jenny sat by Grace’s incubator waiting for test results to come back identifying whether Grace had Hirschsprung’s disease or not.  Those test results weren’t scheduled to be back for five days, but a couple days after the biopsy a Doctor noticed Jenny sitting by Grace’s bed side and decided to check. He looked at her with a smile and gave her the news we had been hoping for - Grace did not have Hirschsprung’s disease!  Jenny ran out to the waiting room to call me and when she got to one of the few windows in the building, it was snowing like crazy, angel kisses from above! She proceeded to call me, deliver the news and shared how it was snowing like crazy, but ironic as it sounds, it was only snowing in this part of town.  We would go on to experience snowflakes at various times;  the first time Jenny went to visit our son’s grave, again the day we brought our second daughter home in March and have experienced many times after.  Many may say it's coincidence; we prefer to believe our Angel Ethan was giving us a simple reminder not to lose faith.

November 7, 2013 will mark five years since we lost our son. Not a day goes by we don't think about the events of that day, but now we feel it's time to turn a tragic event into a positive.  Our goal is to start a PREEMIE WARRIOR foundation where our mission is simply to "Make a Difference".  Prior to starting our foundation, we want to give back to a special place. 

We worked with a designer to create a Preemie Warrior logo which would not only honor our son with his initials, but help raise awareness about prematurity.  Each person who donates 32 dollars to our cause will receive a Preemie Warrior t-shirt and the proceeds will be given to a local NICU (Foundation for the Shawnee Mission Medical Center).  Shawnee Mission hospital will always hold a special place in our hearts as it's where we watched our son show his love for his twin sister, touch the lives of so many and teach us the generosity of people during the darkest hours.  During our time in the hospital, we experienced a lot of ups and downs, but the NICU staff was always there providing support and encouragement.  Nurses, who we didn't even know, bought us coffee after sleepless nights. Doctors on staff never stopped believing in our kids but there is one memory that stood out from the rest. It was the day we would bury our son.  At the end of the service, Father Joe turned to me and asked, "would you like to carry your son out of church?" With tears streaming down my face, I nodded.  As father handed me the casket, I turned to begin the hardest walk of my life and as I looked up, not only did I see a church full of co-workers, family, and friends, but a pew full of NICU nurses.  You see, those NICU nurses despite not even knowing us, showed us compassion and love during the most difficult days of our lives; they picked us up when we didn't think we could take anymore,  and treated our kids as if they were their own. Each one of those NICU nurses made a difference in our lives and will forever be a part of our family.

Please consider donating 32 dollars (in honor of Ethan's weight of 3.2 pounds).  The funds raised will help to purchase additional feeding pumps for the NICU. Many of the preterm babies are not able to start out with oral feedings. They are fed through tubes utilizing pumps to provide the feeding over a specified time period.  

Again, we ask in memory of our son, will you please help spread the word and support our cause?  Even if you can't donate, please share this with your friends and family and help them realize how precious each day is and don't let a day go by without telling your kids you love them.  We ask you to help us fight prematurity and consider becoming a PREEMIE WARRIOR today, together let's make a difference.  Thank You!