Gabby the Great

GabriellaAge: 2 years
Weight at Birth: 1lb 4 ozs
Weeks Gestation: 29 weeks
Time spent in the NICU: 118 days

My Preemie Power Story:

My beautiful daughter was given a 10% chance of survival. She overcame so much during her 118 day NICU stay. She was a fighter all the way. She had all the usual micro preemie problems, including NEC. She had an umbilical hernia, sacral dimple and severe edema. She was on a vent for 51 days, and came home on oxygen.

The NICU days were just unbearable, not knowing if she would live or die. I learned to lean on God more than I ever had before, lots of bedside prayers. The first time I held her, she was well over 2lbs and 1 month old. So small, but yet so mighty. I had never in my life seen a preemie until her. What amazing things the doctors can do these days to keep these tiny super heroes alive!

When my daughter came home she was 5lbs 14ozs. She had a heck of a time eating, and as a result she was a tiny 11lbs at one year old. Despite her small size at 18 months, she learned to crawl, and at her second birthday she walked. She does not eat any food as of yet. We are in Feeding, Speech, Occupation and Physical Therapies. She has AFOs for her feet because her gait is very off. She doesn’t talk yet, but I am hopeful she will soon learn. She has her fair share of troubles still. She has a serious Developmental Delay, she is G tube fed, she amazes me.

We see so many specialists who have no answers as to why she is not progressing very well. I am proud of her everyday, for never quitting. I can’t communicate with her yet, but I know she understands how much I love her. I was not always the best mother, before I got her. I feel like I have been redeemed in my role as a mother caring for her special needs day in and day out. The traumatic birth, and long NICU stay, then all the issues that follow a micro preemie through life, don’t seem so bad, when I see her smile. Other days, when its seems like all hope is fading, I still can just think of how hard she fought just to live, all of the things she had to face as a 1lb infant in this big scary loud cold world when she should have been in my womb.  Well, she is a super hero. A miracle is what I like to refer to her as, OUR FAMILY MIRACLE! I can’t imagine one day of my life without her, thank you, God, for Gabby the Great!

Super Hero Characteristics:

Strength, Fierceness, Persistence

Tiny Tornado

RyanAge: 5 years
Weight at Birth: 2lbs
Weeks Gestation: 25
Time spent in the NICU: 134 days

My Preemie Power Story:

Just like a tornado, Ryan came storming into our lives with a flurry of unexpected activity. Ryan was born at 25 weeks, weighing in at 2 pounds. He was born with pneumonia, and remained seriously ill for most of the 19 weeks (134 days total) he remained in NICU. In the span of 5 months, Ryan endured more than most do in an entire lifetime and has the scars to prove it! He continues to not only endure life, but to thrive. This “Tiny Tornado” hasn’t slowed down since NICU…you could categorize his intense activity level as an F-5!

Ryan required Ventilator support for two months, C-pap for one month, and oxygen via nasal cannula for the remainder of his NICU stay. He endured daily chest X-rays, labs, blood transfusions, and required photo therapy for several weeks. A moderate PDA and a Grade 1 brain bleed were found, both of which resolved on their own or with medication. He had mild ROP and today wears glasses. He had two Immunoglobulin infusions while in NICU and one as an outpatient, to bolster his weak immune system. [Read more…]

Wrap Buddies

by Kathryn Whitaker, PreemieBabies101 Lead Blogger

Tommy Strader with Luke

Photo credit: Whitaker Family

In 2010, when our son was fitted for a helmet to correct his plagiocephaly and brachycephaly, we were thrilled to learn of a non-profit, located in Dallas, that wrapped orthotic helmets for free.  Each month 360 Wraps, a for-profit business, closes their shop and opens it to parents and kids, like our son, to wrap about 15 helmets.  For us, the atmostphere was festive, welcoming and understanding as we made connections with other parents facing a similar situation.

Tommy Strader wrapping a helmet

Photo credit: Whitaker Family

However, as the owner, Tommy Strader (who still personally wraps every helmet!) started working on the first helmet, he began to tell us the story of how Wrap Buddies was born.  It was his witness and his easy-going candor that left the room speechless, sprinkled with bits of laughter.

In 2009, a father contacted 360 Wraps and asked if they would wrap his son’s helmet. Tommy had never heard of plagiocephaly, but decided it couldn’t be much different than wrapping a motorcycle helmet.  He typically charges $300-$1,000, but when he learned of the out-of-pocket cost to purchase the orthosis, sometimes as high as $4,000, he gifted the helmet to this father and his son.  News spread like wildfire and the shop started getting numerous calls a day.

Wrap BuddiesThrough some trial and error, the shop implemented a system, set up a website and established an official non-profit, Wrap Buddies.  They’ve wrapped over 300 helmets, to date.  More than 42 shops in 23 states offer helmet wraps for free or discounted costs because of Tommy and 360 Wraps.  His outreach has expanded beyond just helmets, as they’ve wrapped prosthetic limb and back orthoses, as well.

“I like to help out the underdog, as I feel in many ways I have been the underdog, and have overcome many obstacles to get to where I am and feel it necessary to pay it forward,” says Tommy. Read his full story.