Hero of Hope

Kali LinnAge: 5
Weight at Birth: 2 lbs 10 oz
Weeks Gestation: 28
Time spent in the NICU: 3 months

Preemie Power Story:

Hero of Hope, otherwise known as Kali Linn, came into the world bringing hope just as soon as she took that long awaited first breath.
Her premature birth took our little family of three by extreme surprise. Her dad, a US Marine, was at training hours away, while her brother, age 2 at the time, and I were sitting down for lunch when something went terribly wrong. Placental abruption, PROM, and cord prolapse all happened one afternoon while I was just 28 weeks along. Two days of labor all came to a call of code blue and me giving up on the fact that she would be born alive. Kali came into the world as I was going unconscious, and hope came as I heard that one little cry.

Her NICU stay had many ups and downs like many NICU journeys of preemies her gestation and she came home three months later.
These past five years has brought many diagnosis including the far too familiar cerebral palsy which causes pain in her legs and a gross motor delay. She’s had therapy of many kinds since just a few months old and that has given her to many tools and has shaped the thriving five year old she is today. She has had several surgeries and is followed by a handful of specialists. With each milestone we see her hope and with each bad day we feel her hope.

Prematurity is her story and one that we have chosen to make her aware of. She knows her story, she has seen her pictures, and has met the nurses who gave so much of themselves to her. This year for her fifth birthday, we chose to spread her hope a little further. Her compassion for others, especially babies, just shines as we have asked for gifts not for her this year but for the families and babies currently in her NICU. Kali herself will be giving hope and showing families what five years later looks like. Kali Linn is Hope to prematurity, to others, to her family, and to her friends. She’s compassionate and resilient. Her strength through this journey makes me, her mom, proud.

Prematurity is never a condition any mother envisions when they take on motherhood. Kali Linn however, represents the Hope that shines in the many faces of prematurity.

Super Hero Characteristics: Powerful, Resilient, Powerful

Mr. Incredible

ChaseAge: 4 years
Weight at Birth: 2lbs 3 ozs
Weeks Gestation: 26
Time spent in the NICU: 92 days

My Preemie Power Story:

Chase was born at 26 weeks, weighing 2lbs 3ozs. At exactly 1 week old we were told he had a massive brain bleed on both sides of his brain. At only 3 weeks of age and less then 3lbs he had his first of many surgeries to have a shunt placed to drain the fluid that was building up. A month later he was diagnosed with a UTI and Meningitis and the shunt was removed immediately. At that moment my life fell apart. I had watched my son work so hard to breath on his own, go from an incubator to an open crib, and to be able to eat from a bottle versus through a tube. He had worked 6 long weeks to get where he was and in a matter of seconds all the work had disappeared and he was being kept alive by a ventilator. That was probably the longest week of my life.

I remember walking into his pod and seeing all the wires and monitors and feeling like we were starting at the beginning again. He proved to me and our entire family that week what a fighter he truly was. Once all the meds kicked in he was able to begin the fight for his life. He fought hard for 7 days and in the end he won. He would not let life beat him. It seemed like one day he still wasn’t improving and then the next he was back to him self and doing everything he was doing just a week before. [Read more…]

Courageous Caiden

Caiden ~ Super Hero Alias: Courageous Caiden

CaidenAge: 4 years old
Weight at birth: 1 lb 7 ozs
Weeks gestation: 36 weeks
Time in the NICU: 88 days

Diagnosis, complications, surgeries? 

A few days after Caiden was born they found out that he had a hole in his heart. He was sent over to another hospital and had a PDA ligation. Soon after that we found out that he needed to have a VP shunt. At 2years old we were told that he had Spastic Dyplegic Cerebral Palsy.

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

Caiden has the special powers of brightening anyone’s day!! Through everything that he has been through and still to come he always has a smile on his face. [Read more…]

Lovely Laiken

Laiken ~ Super Hero Alias: Lovely Laiken

LaikenAge: 23 months
Weight at birth: 1 lb 15 ozs
Weeks gestation: 25 weeks
Time in the NICU: 107 days

Diagnosis, surgeries, complications?

Grade 3 HIE, bilateral grade 3 IVH, Cererbral palsy, CVI, epilepsy, infantile spasms and permanent vegetative state.

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

Laiken has been a fighter since day one and has been through more than anyone I know. She is in a vegetative state because of a very traumatic birth from a car accident. She has survived longer than anyone ever thought she would. Her will to live is amazing. She is a true miracle and I think she would rock as the “Preemie of the Year”.  [Read more…]

The Shawman

Shawnee H. ~ Super Hero Alias: The Shawman

Shawnee HAge: 16 years
Weight at birth: 1 lb 5 ozs
Weeks gestation: 23 weeks
Time in the NICU: 5 months

Diagnosis, surgeries, complications?

Seizures, CP, Heart Surgery, On oxygen, feeding tube, IV brain bleed, apnea monitor.

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

Our adopted son came home on all kinds of machines and monitors. Around the age of 3 he no longer needed the oxygen and soon afterwards the feeding tube. Today he can propel his own wheel chair, use a stander and walk a short distance with his special walker. He is truly a miracle. We are so proud of him and all he has accomplished. And today he weighs about 170 lbs. His favorite activities are riding in the van/motor home and going to Arby’s or McDonald’s. He loves school. And he loves Disney.

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

Shawnee is a super hero because he has had to fight just to survive and he is winning that battle. He is very strong, brave and an inspiration to others who have micro preemies.

He inspires us each and every day.

Miracle Twins

Aiden and Ethan S ~ Super Hero Alias: The Miracle Twins

Aiden and Ethan S.

  • Current age: 6 years
  • Weight at birth: 1lb 14oz/1lb 6oz
  • Weeks gestation: 24 weeks
  • Time in the NICU: 150 days

Diagnosis, surgeries, complications?

Micro-preemie twins:  PDA (resulting in heart surgery), ROP (resulting in eye surgery), Failure to Thrive (resulting in G-tube surgery), Double Hernia (resulting in hernia repair surgery), Chronic Lung Disease (resulting in 1 year on O2), brain hemorrhages, seizures, cerebral palsy, rickets, sepsis, social sensitivity.

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

My twins should be recognized as Preemies of the Year because they have struggled so hard for the last 6 years to overcome unbelievable odds and obstacles.  They were given a 5% chance of surviving and being healthy – and after 6 months in the NICU, 3 years in isolation, numerous surgeries and hospitalization, and years of therapy – I’m so happy to say that they’re doing amazingly well and just started kindergarten.

They’ve had to work so hard during their short lives just to live and to grow, I feel like their childhood and opportunities to just have fun have really been affected.  As parents facing medical bills that have run in the hundreds of thousands of dollars, we haven’t been able to focus on much other than just providing the basics.

This Disneyland trip would be our first family event as a “normal” family and would mean the world to all of us.

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

Aidan and Ethan are more than just strong, brave and resilient.  They are inspirational to all that meet them.  Not only did they encounter so many obstacles in their lives – they have gone on to test on the genius scale.  They are absolutely brilliant.  Both boys taught themselves how to read at age 2. Now they are studying science, math, and foreign languages.  They are truly inspirational and I believe they will go on to do amazing things – possibly even cure prematurity!

Note (posted 10/29/12):

I just wanted to sent you a note saying thanks, and add a personal story around my boys’ entry “Miracle Twins”.

Aidan & Ethan were born at 24 weeks, had a 5% chance of surviving and being healthy, and spent 6 months in the NICU and 3-1/2 years in isolation.  Needless to say, it’s been a LONG journey for them (and us!)

It was kind of a family joke while they were in the NICU, I would tell them “just survive this and I’ll take you to Disneyland.”  As they got older and had more complications, more surgeries, and more hospitalizations, I continued to tell them “someday you’ll be healthy and we’ll go to Disneyland”.  Disneyland got to be the trigger of healthy.

This year, Ethan had his feeding tube removed.  For the first time ever my boys are tube/wires/monitor free!  And of course –  now they’re saying It’s time for Disneyland! I feel like this competition couldn’t have come at a better time for us.  My kids are finally healthy and they deserve this so much.  This would allow us to give them this experience.

Captain BAM!

Bryce M. ~ Super Hero Alias: Captain BAM!

Bryce MAge: 2-1/2 years old
Weight at birth: 1 lb, 8 oz
Weeks gestation: 24 weeks
Time in the NICU: 150 days

Diagnosis, surgeries, complications?

24 week Micropreemie, Grade III & IV brain bleeds, Hydrocephalus, VP shunt, Retinopathy of Prematurity, Cortical Visual Impairment, Cerebral Palsy, Developmental Delay, Over a dozen surgeries to date

Why Should Your Child Be Recognized as Preemie of the Year?
A true preemie hero, Captain BAM! overcame seemingly insurmountable odds: being born at home, severe brain hemorrhages, struggling for months in the NICU to learn to breathe without a machine, and much more.  Captain BAM! is the living, breathing symbol of tenacity, bravery and the power of a mighty will to live!

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

Vowing to defy even the scariest of odds, Captain BAM! faces all evils head on, literally – brain bleeds, hydrocephalus and even multiple brain surgeries.

He laughs in the face of medical adversity as he continues to meet milestones never imagined for him.

And though his vision may be imperfect without his Blue Spectacles of Might, his heightened hearing prevents evil tickle monsters or boogeymen from sneaking up unannounced.

Perhaps Captain BAM’s most formidable super power of all though is his innate ability to charm. He can charm a needle-toting nurse or a stranger at dinner with a single glance and a mere glimpse of his intoxicating smile.

But have no fear, Captain BAM! is here. He’ll brighten your day, instill hope in your heart and make your thankful for all that you’ve got!

What advice do you have for future NICU parents?

Be active in the Hand to Hold network, it’s an invaluable tool for navigating the crazy, unpredictable post-NICU life.

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?

Being able to pick up a phone, send an email or have coffee with another mom who knows and understands my fears, my hurts, my little triumphs and my huge disappointments is the only real support I need that my friends and family just can’t offer.
Hand to Hold gives us the tools necessary to make the best decisions we can for our Bryce while also making the process of raising a preemie feel less isolating. I can honestly say that I don’t know where I would be today without the support and resources that Hand to Hold has given my family.


Isabella C. ~ Super Hero Alias: SuperBella-Bug

Isabella CAge: 3 years
Weight at Birth: 1 lb, 1 oz
Weeks Gestation: 24-26 (Biological mother had no prenatal care.)
Time in the NICU: 158 days

Diagnosis, complications, surgeries?

Isabella was born exposed to drugs from biological parents. She is adopted after being abandoned at birth. She experienced grade III/I brain bleeds, 2 blood transfusions, feeding issues, eye surgery, Fundo-Nissen surgery, and quadraplegia spastic Cerebal Palsy.

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

My child spent the first two months of her life fighting alone. She not only went through everything a preemie, such as with underdeveloped lungs, brain bleeds and breathing but also she did it all exposed to the drugs of her mother and alone.

[Read more…]

A Brotherly Bond

Enjoy his heartwarming video of two brothers Conner, 8,  and Cayden, 6, Long,  who compete in triathalons despite Cayden having cerebral palsy.  Tom Rinaldi of ESPN’s E:60 really captures big brother Conner’s voice and why competing with his young brother is so important to him.

Jubilant Jillian

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

Jillian R. ~ Super Hero Alias: Jubilant Jillian

Jillian RAge: 5 months
Weight at Birth: 1 pounds 4 ounces
Weeks Gestation: 25 weeks
Time in the NICU: 129 days

Diagnosis, complications, surgeries?
Jillian was born premature due to pre-eclampsia May 21, 2010 and spent her first 4 weeks in College Station. At this point she developed a staph infection and was transferred to Dell Children’s Hospital in Austin on June 17, 2010. The doctors almost lost her but she endured with the help of any and every antibiotic, among other medications, and a high frequency ventilator. At less than two pounds, she developed about 300 ml of edema. She developed a clot in her heart and received 11 weeks of lovonox shots twice a day. Throughout this illness, her blood pressure was low enough to give her some brain damage and she is expected to develop Cerebral Palsy. The oxygen caused her to have some eye problems and she received laser eye surgery. Eventually she was healed by both the talented medical staff and the extensive prayer of friends and family. After the doctors felt her well enough to have minimal supervision, she was transferred back home to College Station Medical Center (September 17) where her oxygen and NG feeding tube were removed four days before her release on September 27, 2010.

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

Jillian endured more in her first four months of life than anyone I know has endured in a lifetime. She has overcome every obstacle the doctors encountered and exceeded our expectations of success with her developement. She is healthy, strong, and growing beautifully, surprising everyone with her big personality.

[Read more…]