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…]

The Electrifying Tiny Hiney

Ryan ~ Super Hero Alias: The Electrifying Tiny Hiney

RyanAge: 4 years
Weight at birth: 1 lb 15.5 ozs
Weeks gestation: 25 weeks
Time in the NICU: 134 days

Diagnosis, complications, surgeries? 

Ryan was born with a pneumonia infection which required daily chest X-Rays and labs.  Due to the amount of blood drawn, he required several blood transfusions.  He remained on ventilator support for  two months, on C-pap for another month, and nasal cannula for the remainder of his NICU stay.  He became septic due to multiple pneumonia infections, and suffered from Respiratory Distress Syndrome. He had high Bilirubin levels and remained under the photo therapy lights for a couple of weeks.   A moderate PDA and a Grade 1 brain bleed were found, both of which resolved on their own or with medication.  Diuretics were necessary, due to fluid overload.   He had mild ROP and today wears glasses.  He had two Immunoglobulin infusions while in NICU and one as an outpatient, to help bolster his weak immune system.  After returning home, Ryan required oxygen during feedings, was medicated for GERD, and was considered for a PEG tube at 8 months.  Ryan developed Torticollis and Plagiocephaly and wore a cranial remolding helmet for 5 months.  He also wore orthotic shoe inserts to assist with toe walking and low tone.  Ryan has Bronchopulmonary Dysplasia/Chronic Lung Disease and asthma controlled with daily medication and inhalers.  He received multiple therapies and attended Early Childhood Special Education classes until age four.

Why Should Your Children Be Recognized as Preemies of the Year?

Our Tiny Hiney is quite “electrifying” and not easily forgotten. Ryan’s BIG brown eyes are typically the first thing people notice, but it doesn’t take long before they realize he has a passion for anything mechanical and electrical…especially vacuums. With his first word being “light”, it is no wonder he is asking Santa for a new vacuum, a power strip, and an extension cord for Christmas, or that he named his pet fish Dyson. We have joked that his name should have been Cord. He has an inquisitive nature and a methodical and analytical mind, often taking a scientific approach to most everything he sets his mind to. We attribute this, in part, to his being “raised” by machines for the first 5 months of his life.

Ryan was born at 25 weeks, due to preterm labor. He was born with a pneumonia infection which caused his already compromised lung function to be even more critical. He remained in NICU for 19 weeks…134 days total. Ryan endured more than most do in an entire lifetime, in the span of 5 months…and has the scars to prove it! He continues to not only endure life, but to thrive. He was on the move even in NICU (the nurses had a difficult time keeping him swaddled and he often pulled at his ET and NG tubes) and he hasn’t slowed down!

Life since NICU has not been uneventful for Ryan, yet typical for a micro-preemie. In less than five years, there have been a multitude of medical appointments, procedures, medications, therapies, orthotics, and other special needs. Additional appointments and therapy are in Ryan’s future, to help assist with a cross bite, lateral and frontal lisp, asthma, and for farsightedness and cross-eye. Through it all, Ryan has risen to meet each challenge with a great deal of strength and determination, an intense curiosity, and great sense of humor.

Ryan is not just our Preemie Super Hero of the Year, but of every single day. We recognize him as our Super Hero not only because of his personality, abilities, or his endurance, but because he is a testament to strength, endurance, and determination of the Neonatalogists, NICU nurses, Respiratory Therapists, and other specialists who devote their careers to ensuring a happy, healthy future for our babies. They make miracles like Ryan happen!

To read more about Ryan’s NICU days, and the months following, please take a peak at his Caring Bridge site at http://www.caringbridge.org and enter the site name ryanondrick. For a smile, please watch a video of Ryan reciting the Pledge of Allegiance last Fall at http://youtu.be/Zk1hl6DTlX4. [Read more…]

One Pound Wonders

Camdyn & Cade H – Super Hero Alias ~ One Pound Wonders

Camdyn and Cade H

Camdyn and Cade H

Age: 18 months
Weight at birth: 1 lb, 2 oz and 1 lb, 8 oz
Weeks gestation: 24 weeks
NICU stay: 133 days

Diagnosis, surgeries, complications?

Camdyn – PDA ligation, grade II head bleed, collapsed lungs, chronic lung disease, intubated 5 weeks

Cade – PDA ligation, grade II head bleed, pneumothorax (air pocket in lungs), paralyzed vocal cord, g-tube surgery, plagiocephaly, chronic lung disease, vented 5 weeks

Why Should Your Children Be Recognized as Preemie of the Year?
The One Pound Wonders came into this world 16 weeks early weighing a mere 1 lb 2 oz (Camdyn) and 1 lb 8 oz (Cade). From the first day of life, they had to valiantly fight off all the evil NICU villains, those malicious micro-preemie harmers – IVH, PDA, ROP, CLD, and the gang. After 133 days of continuous fighting, they left the NICU battlefield. The One Pound Wonders encountered still more battles. They spent over a year fighting off the evil Feeding Fiend who caused them both to deal with major feeding issues. Cade used his magic g-tube portal to gain superhero strength to eventually conquer this evil enemy. Camdyn, although tiny, showed her fierce superhero powers to overcome this enemy on her own. The One Pound Wonders continue to gain strength and power in their superhero training camps, aka occupational, physical, and speech therapy weekly. They have left the world in awe of their amazing powers – the power to eat, breathe, walk, talk, and most importantly, live after being given only a 30-40% chance of surviving! The One Pound Wonders have proven to the world that miracles exist.

To follow their progress, visit our blog at www.camdyncade.blogspot.com.

To watch a slideshow of their incredible journeys, visit http://www.youtube.com/watch?v=il0NdAfvzQI.

Although it would be a huge honor to be recognized as Preemies of the Year, we are entering the contest in hopes of being recognized with the Thundering Thurston award (entry with the most votes). We need your votes to help us achieve this. The amazing Thundering Thurston was in alliance with our One Pound Wonders in the same NICU. I am honored to be friends with Thurston’s incredible mother. We walked through our NICU journeys together supporting one another along the way. We would be so honored to win the Thundering Thurston award in memory of this amazing baby boy who touched the lives of so many.

Using Three Or More Characteristics of a Super Hero, Please Describe Your Children.

The One Pound Wonders have demonstrated their superhuman powers with their strength – they had to endure so much pain throughout their NICU journey, their endurance – they work so much harder to accomplish milestones that come easily to others, and their perseverance – they never gave up even though the odds were stacked strongly against them. They will continue to leave the world in awe and wonder at all they will accomplish!

What advice do you have for future NICU parents?

Connect with other parents who understand what you are going through.  Also, be your child’s advocate.  You know your child best.

Describe how Hand to Hold’s services are meaningful to you and future families. What kind of support would have helped you most during your journey?

Hand to Hold’s quarterly discussions have given me great information to navigate insurance, therapies, specialists, etc. after my twins came home from the NICU.

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.

Baby John

NICU Reunion, Family Celebration, Hand to Hold Birthday, Photo Contest

John L. ~ Super Hero Alias: Baby John

John LAge: 1 year old
Weight at Birth: 4 pounds 7 ounces
Weeks Gestation: 32 weeks
Time in the NICU: 4 weeks

Diagnosis, complications, surgeries?
Placental Abruption with Emergency C-section, Down’s Syndrome-Trisomy 21, Hypotonia (low-muscle tone), Adenoid removal surgery, Plagiocephaly (flat head syndrome)

Why should your child be recognized as “Preemie of the Year”?
John Ryleigh has fought for his life from week 4 of gestation, with a very complicated pregnancy.This angel was determined to come early and grace us with his presence.He survived a placental abruption with an emergency c-section. JR was diagnosed with Down’s Syndrome and was struggling with his hypotonia. He became a superbaby in the NICU fighting to accomplish everything quickly,so he could go home and be with mommy and daddy just after 4 wks. Now,1 year old, JR has been seen by 9 specialists, to clear him of any future problems. He fights to gain strength at PT & OT weekly & accomplishes more and more each day. He is the most determined child,who tries to crawl before he can hold his head up,who tries to walk before he can sit.Anyone who meets John Ryleigh is awarded the biggest and brightest smile ever seen! He is the happiest lil angel & will be proud to show you. JR is always remembered and becomes famous whereever he goes!.

[Read more…]

Super Luke

NICU Reunion, Family Celebration, Hand to Hold Birthday, Photo Contest

Luke W. ~ Super Hero Alias: Super Luke

LukeAge: 13 months
Weight at Birth: 3 lbs 9 oz
Weeks Gestation: 36 weeks, 3 days
Time in the NICU: 44 days

Diagnosis, complications, surgeries?
Luke was initially diagnosed as an IUGR (intrauterine growth restriction) baby – he just did not grow well in utero.  After birth, we discovered two heart defects, PDA and VSD, a pelvic kidney, bilateral arachnoid brain cysts and a tethered spinal cord.  Our biggest complicating factor?  Developing a severe surgical case of necrotizing enterocolitis (NEC) on day nine.  Most recently, he was diagnosed with plagiocephaly and brachycephaly, hence the reason for his awesome Aggie football helmet!

Why should your child be recognized as “Preemie of the Year”?

Luke is a fighter.  Luke is a miracle.  Luke is complicated.  Luke is a stinker.  Luke is an inspiration.  Even after all the setbacks with his additional diagnoses, he just kept making slow and steady progress.  After NICU discharge we thought we were in the clear!  Then, in the span of seven months, we returned to Dell Children’s for four more surgeries and a total of seven hospital stays.  Through the past year, we have grown into more compassionate parents to our own children, and others who have special needs. I hope Luke’s scars never fade away, they are a reminder of how far we’ve come.

[Read more…]