Tag Archive: Neonatal intensive care unit


World Prematurity Day

Filed under: Home, iRide News by iride4shiloh — 1 Comment
August 13, 2012

As we get closer to the big ride at Hotter n’ Hell, we get closer to pivoting and gearing up for World Prematurity Day, which is on November 17.  If you haven’t heard about this day and this campaign, it’s a great opportunity to connect globally and heighten the awareness that there are families who mourn the loss of a child.  Born too soon, gone too soon is my theme for that day.

Special activities will take place worldwide on that day and I’m working to put my 2 cents in the fray.  I’m working to coordinate a 17 mile “bike ride of silence” to give a voice to the invisible tears and silent joy experienced by parents, friends, family members who move forward without their loved ones.  As I’ve always said, cycling gives a complete perspective of moving forward, staying present, and overcoming challenges, which is what we do to honor our loved ones.

I’m so appreciative of all the many folks who have donated money and pledged miles; the shared stories and experiences have all been heartwarming, as well as the encouraging voices.  I’m truly humbled by the outpouring of support.  But we aren’t done and I know you will join me on this important and exciting new venture for World Prematurity Day 2012.  We have another opportunity to ride!

Please check back for more information, or leave your email address and I’ll forward the location, roll-out time, etc.  This is going to be BIG, and I invite you to jump on your bike and rollout with me.

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Life in the NICU taught me…

Filed under: Reflexion by iride4shiloh — Leave a comment
May 31, 2012

Strength is not defined by physical prowess, mental focus, or a 10-star college education.  Strength, by all accounts, is a combination of patience and stubbornness.  This perfect intersection is called perseverance and every child born early becomes a student and eventually a lecturer.  Life in the NICU is a place full of distractions…from the incubators, to the constant beeps, quietness in the mix of chaos and for the most part each day ends with life and/or death.

 The babies are so small and the hopes so grand I’m surprised that there isn’t a higher level of insanity among the adults.  Life in the NICU also taught me a new lesson about being ready, how to prepare, and how to use a few items for a multitude of needs.  After a few weeks, anything I needed, I carried in my backpack and even today I load my backpack as if I won’t be coming home for a few days…strange yes, but, the fact of the matter is that “you never know”.  It’s the same as having non-perishable goods in the house in the event of a loss of electricity, flood, or need to get the hell out (a jump bag)!

 Back to perseverance.  I don’t know if you’ve ever been in a situation in which each and every breath was important.  Each one becoming more important than the next.  Have you ever talked to someone, but watched their chest or throat instead of their eyes or lips.  Weird, I know…but this is life in the NICU.  The nurses always told us that babies are far more resilient than what we give them credit for.  But this does not take away your wish to take away his or her pain.  I constantly prayed to take Shiloh’s hell…I didn’t feel it was fair for someone so young, so small, to go through so much.  My thoughts are no different today than in 2007, and although I do understand that if Shiloh was here and I was gone, there would still be pain, HOWEVER, I’ve had a very good run as a citizen of the earth, but the NICU taught me that death has no conscious and EVERY life will expire.  Life in the NICU taught me to be prepared but not be scared.    

 I’m uncertain if brave is the correct word to use for the NICU babies, perhaps a combination of motivational phrases would be more appropriate.  What I do know is that those babies are special and the NICU reiterated to me that every person is “special” because of the uniqueness of his or her spirit, and your spirit is your greatest attribute.  

 I’m happy the NICU is not a place all babies will visit, and I’m hopeful that those parents will take the time to understand and appreciate how each and every breath is precious.

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March for Babies

Filed under: Reflexion by iride4shiloh — Leave a comment
April 10, 2012

I had a great time with many great cyclists at the Bicycle Café last night and as I drove home, I started thinking about this years March for Babies (which is a major event for March of Dimes).  I don’t know how many times I’ve mentioned that this year would mark Shiloh turning 5, but last night my thoughts centered on my very first March for Babies.  It was a very exciting time.  Shiloh was doing well…eating more and pooping more, so things were good.  The staff at the hospital went out of their way to promote March for Babies, but they did it in a fun and inclusive type of way.

 I can imagine that several of the nurses had gone through years of promoting and participating in the event.  I always think about the parents and how tough it is on them as they spend day and night in the NICU.  But the nurses who show up, day after day…they are special.  I know they love babies or they wouldn’t be there, but I know the experiences weigh on them, but they keep coming back.  I’ve come to the conclusion, right or wrong…that March of Babies is a time to celebrate the survivors.  There’s nothing wrong with that, but it’s the central reason I don’t want to participate this year.

 I don’t know why I’m fixated with Shiloh turning 5.  Maybe it’s because it’s the age he’d be going off to school or it could be he’d be playing flag football.  I’d undoubtedly be ruining his hairline because I’d be a horrible barber.  Whatever “it” is…”it” is deeply embedded in my thinking.  I was amped that first year walking around White Rock.  I couldn’t wait to get back to the hospital to Shi, but I really couldn’t wait until the following year to push my baby boy as we celebrated life away from the NICU.  Since then, I’ve participated in the walk, but try to stay as quiet and reflective as possible.

 There’s a lot of joy, deservedly so, and I definitely don’t want to be a kill joy.  I guess it’s been my way of making sure I confront the pain.  I am truly happy for the families who were able to bring their babies home….I only wish they could understand that as they live with joy, some live with pain.  I’m not complaining and I’ll be at March for Babies this year, it’s important to stand tall and move forward because your strength may be the example for someone who is on that edge.

 I can relate to the NICU nurses from the standpoint you gotta keep showing up.  You gotta believe it’s important, and strangely enough not doing it leaves a void that could never be replaced.  If you’re not doing anything on April 21, 2012, think about the babies who didn’t make it out of the NICU!  

 Fort Worth Walk
31 miles away
April 21, 2012

Farrington Field: 1501 North University Dr. Ft. Worth, TX  76107 

Walk Distance: 3.5miles
Registration Time: 8:30 AM
Start Time: 9:00 AM
Chapter: Texas
Phone:  (817) 451-9174

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the journey begins

Filed under: Reflexion by iride4shiloh — Leave a comment
February 7, 2012

As I approach the kick-off to iride4shiloh, I find myself becoming more and more restless.  It’s not anxiety, but more of a wonting to get going, put some skin in the game.  Although I don’t like waiting, I don’t have a problem with being patient.  I was thinking about this big adventure the other night and why I have to reach my destination.  I usually bounce things off my baby girl when I can’t shut down my brain.  I like sharing with Renee how her big brother lived a strong and courageous life.  How important it is for us to conquer doubt.  I’m certain Shiloh was confused and scared when he first arrived in NICU.  But I truly don’t believe he had any doubt that he would not make it home…how could he.  From day one, Shiloh fought and as each surgery, treatment, and test brought him pain, it prepared him for the next challenge. 

 February 6, 2007, was a rough one.  Shiloh had surgery for his eyes.  He was born with Retinopathy and we were told that the surgery was needed to rid him of the disease.  There was the blood transfusion, issue with his blood pressure and a steady dose of morphine.  He weighed 2 lbs at the time, and he was measured daily to check for a distended belly.  There was a lot going on and my little man really never cried when he was in pain.  But you could see it in his eyes, you could feel his discomfort.  I watched the first half of the 2007 Super Bowl in the waiting room at the hospital while my son went through yet another surgery.  Little did I know that life would consist of more surgeries, constant prayer and the insane feeling that I had absolutely no control over my life. 

 Renee has drifted off to sleep, and her innocence is oblivious to pain, absent of a feeding tube, IV’s, or the hum of monitors that are attached to every limb as she tries to sleep.  I remember a nurse watching me and Vivian as we sat quietly next to Shiloh.  I’ve never had a transfusion, and I can’t recall the last time I gave blood.  But here I am five years after that experience preparing for my upcoming challenge.  Riding a bike is a piece of lint compared to the things Shiloh had to go through.  I know I can’t go back to February 6, 2007, there’s nothing I could change.  But hopefully jumping on this bike with the goal of helping others, will pave my journey back to forward.

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