Tyler's Trek

Donations accepted through Pay Pal using link to the right.  Checks are also accepted - Please make checks payable to Orlando Health Foundation - Miracle Miles and send to the attn of Tracy Jones, PO Box 593688, Orlando, FL 32859

Orlando Health Tax ID #: 59-2244943

 Tyler Matthew Jones was born on 1/16/2008 at 8:12am - he wasn't due until April.  Arriving almost three months early, he weighed only 2 pounds, 13 ounces and was only 15 inches long. 

He is now a happy and healthy toddler and to look at him today, you'd hardly believe that he's already endured so much in his lifetime.  This video takes you through his NICU journey...and the end result up til this point!                    

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 When my water broke the day before Tyler was born, the doctors at Winnie Palmer were hoping to keep me there on bedrest for the next 6 weeks.  If I could stay pregnant until 34 weeks gestation, the baby would be a lot better off.  But, all through that night, Tyler's heartrate started dropping and he was having a hard time recovering.  At about 8am, it happened again and he did not recover quickly enough.  So they hurried me down to the operating room for an emergency c-section.  It was then that we found out we were having a boy!  Tyler came into this world screaming.  It was a tiny scream, but I was so relieved to hear anything at all.  They quickly showed him to me and then whisked him away to the NICU.  Tyler's neonatologist came to visit me while I was in the recovery room - handed me a picture of Tyler and started to explain what to expect.

The first several days after his birth were very scary – we did not know if Tyler would even survive and if he did, what sort of long term effects he would face.  We got through those first critical days without any real problems, but it was difficult.  The touches and caresses that soothe and comfort most babies were almost painful to Tyler due to the fact that his skin was so newly developed.  It was heart-wrenching to see our baby hooked up to wires, machines and monitors.  As a parent, it is hard to not be able to pick up and hold your baby whenever you want to; it's hard to ask for help in managing the tubes and wires when you finally do get to hold him.  And it's hard having to love and look on from the outside of the incubator at this tiny baby that already means the world to you.  But, at the same time, we knew that he was in the best possible place he could be - we just had to be patient and let him grow.

Because he was born so early, he was forced to continue his development in the outside world that most babies do from the safety of the womb.  He was at risk for problems such as severe brain bleeds, which can cause developmental delays, mental retardation or Cerebral Palsy.  Other problems included heart defects, digestive issues, hearing and vision problems, and difficulties from underdeveloped lungs.  Thankfully, all of Tyler’s tests and scans came back normal each time.  He overcame every single obstacle in front of him and proved to us all what strength really was.

Tyler was finally discharged 8 weeks to the day he was born.  He had endured countless tests, a blood transfusion, and what seemed like constant episodes of apnea and bradycardia where he would stop breathing.  He had to learn to eat on his own while he was there and almost doubled his birth weight by the time he was discharged.  Tyler was sent home on an apnea monitor to alert us if he stopped breathing, which he wore for almost 3 months at home.  We had no idea what the future held for him, but we knew how much we loved him and that was all that mattered.

 The NICU journey was an emotional one full of lots of steps forward and lots of steps back.  We had good days and bad ones.  It didn’t seem fair that Tyler should have to go through all that he did – he was just a baby.  I just kept asking myself, “How could this tiny baby - born way too soon - possibly be ok?”  But he is better than ok – he is a perfect, happy and healthy toddler now, showing very little residual effects stemming from his prematurity.  His pediatrician is constantly amazed by his progress.  In all of his years of experience, he says that he has never seen a preemie like Tyler do so well.  He is truly a miracle.  And we owe a lot of that to the wonderful doctors and nurses at the Winnie Palmer Hospital, Neonatal Intensive Care Unit.  They took excellent care of Tyler during his stay there.  I called all hours of the day and night to check on him and always was put through to a nurse who could update me on his status.  His neonatologist called me personally each day to explain what was going on with Tyler that day.   Without their expertise and state-of-the art facility, I don’t know that Tyler would be the same today.  I will be forever grateful to them and while I can never re-pay them, I would like to try to give back a tiny portion of what they gave me. 

On September 26, 2009, I will be participating in the Miracle Miles run, which directly benefits the Winnie Palmer Neonatal Intensive Care Unit.  The doctors and nurses there do amazing things for their tiniest and sickest patients.  I recognize how lucky we are that Tyler came through his ordeal pretty much unscathed…and I recognize that not all babies are so lucky.  But the Winnie Palmer NICU staff is dedicated to more success stories just like Tyler’s.   I know that Tyler is destined to do great things one day and I want the same for so many other babies born too soon.  They all deserve the best – they deserve to be given a fighting chance…Winnie Palmer helps to provide that every single day.

Our team name for this event is “Tyler’s Trek” and I will be joined by numerous family and friends who have been touched by Tyler’s story.  My personal goal for this event is $10,000.  I hope you will consider helping me reach that goal and join me in supporting Tyler’s Trek! 

Don't forget to sign our guest book and show us your support!