General Grant

GrantAge: 19
Weight at Birth: 1 lb. 14 oz
Weeks Gestation: 26 1/2
Time spent in the NICU: 12 weeks

My Preemie Power Story:

Preemie Power Story General Grant was a fighter from the start. Born at just over 26 weeks, this “wimpy white boy” was given a 50/50 chance of making it by the doctors. If he made it, they said he would face many challenges. His first challenge was to have the nurses tie him down so he would not extubate himself. He spent 7 weeks on a ventilator. They had trouble keeping his blood pressure steady. We were called 3 times to the hospital because they thought things looked bleak and they did not know if he would make it through the night. He was fed through a tube for 2 months. Then came the ROP study. They found that his retinopathy looked pretty bad, and even with laser and cryosurgery, maybe a 50% chance that he would not see. He had this surgery when he was just under 3 pounds. [Read more…]

Lil Warrior

AsherAge: 5-1/2 months
Weight at Birth: 1 lb 14 oz
Weeks Gestation: 26
Time spent in the NICU: 125 days +21 days in PICU totally 146 days

My Preemie Power Story:

Asher is dressed as Clark Kent in this picture. He has secretly been Superman from the very second he entered this world. Asher entered this world at 26 weeks weighing 1 lb 14 oz and 13 inches long in the parking lot of his brothers daycare in my pants with no medical personnel on hand. He was crying!! It is that determination that propelled him through all the hurdles he faced with his early arrival.

At less than a month old he had the PDA Heart Ligation surgery and it took 2 titanium clips to close the hole in his heart. At almost 3 months old he had a Tracheotomy due to having paralyzed vocal cords, and then at almost 4 months old he had four surgeries in one for the G-Tube placement, Fundoplication, Hernia and one other. After multiple re-intubations, 2 bouts of pneumonia and almost losing him two times, my lil warrior always kept fighting and always had a smile on his face. He showed me what true strength and grit means and he his the epitome of strength in my book. What he has overcame in his short life is nothing short of miraculous and I am so honored that God blessed me with such an incredible little boy.

His determination through every obstacle he has faced, and continues to face, is a testament to how much he wants to be in this world and he is going to do something great. He already has made such a difference in people lives with how inspirational he is with his huge smile and happy face despite what he has been through. His brother and I adore him and are happy to celebrate that he has been home a month now after a 5 day hospital stay for Bilateral Viral Pneumonia 3 weeks after coming home. At almost 6 months old he weighs 7 lbs 14 oz and is 20 1/4 inches long. He just amazes me and I am so fortunate to be able to look into the eyes of his beautiful face and witness a miracle every day.

Super Hero Characteristics:
Resilient, Conqueror, Courageous, Inspiring, he smiles in the face of adversity……I could go on and on. 🙂 (He has 2 amazing sidekicks in his brother and mom too!)

Evan from Heaven

EvanAge: 9 months
Weight at Birth: 1lb 4oz
Weeks Gestation: 23
Time spent in the NICU: 117 days

My Preemie Power Story: 

Evan was special from the day we found out I was pregnant. You see, we had been trying to get pregnant for almost 3 years and after a miscarriage, knowing that I was pregnant again was the answer to my hardest, most relentless prayers.

Going into labor unexpectedly at 23 weeks 5 days would be scary and terrifying for anybody, including my husband and even the medical staff, but somehow I was not. “So do not fear, for I am with you; do not be dismayed, for I am your God.” Infertility was torture, but it gave me the most precious gift: realizing I was not in control and putting all my trust in God.

The truth is Evan’s path had been chosen way before he entered this world at 23 weeks 6 days. “Before I formed you in the womb I knew you, before you were born I set you apart.” So we wanted to give him a name to reflect this: Evan means God is Gracious and Little Fighter.

Superhero from Day 1: Evan was born crying and that tiny little cry was the sweetest sound. He conquered many battles in his 117 day NICU stay: the ventilator, small PDA, blood infection, meconium issues, high blood sugar, HMF intolerance, slow weight gain, blood and platelet transfusions, spinal tap, CPAP, high flow and low flow cannula, ROP stage 2, bilateral hernia. God has held him in his palm every second of the way. Just the fact that a 23 weeker did not have any brain bleeds is a miracle. And we are thankful and will forever be grateful for His blessings.

Today Evan is almost 9 months old and is doing amazing, meeting all the milestones for his adjusted age and no current issues except for his reflux. He is OUR MIRACLE and the answer to many people’s prayers.

Super Hero Characteristics:

My little superhero is strong, both physically and mentally, as he overcomes each challenge of his premature birth. He is persistent as some of these challenges are more difficult for him than others, like breathing and eating. He is brave and full of courage as evidenced by the countless pinpricks on his hands and feet and the surgical scars on his body. He is intelligent as he masters new skills to overcome his developmental delays in fine motor skills and speech. He is compassionate and loving, wearing his heart on his sleeve and offering it to others in need. He is curious and fearless, always seeking out new adventures and new friends. My little superhero charms his way into the minds and hearts of all those he encounters. The world is a better place as my little superhero lights up the day with his smile.

Hurricane Hunter

HunterAge: 17 months
Weight at Birth: 2 lbs
Weeks Gestation: 30
Time spent in the NICU: 9 weeks

My Preemie Power Story:

Hunter has been determined to be here from 3 weeks pregnant,I had a terrible pregnancy with constant bleeds, three massive ones, lost his twin and three times we were told he was gone..we even told family and friends but he hung in there for 30 weeks. He was so small, especially at 11 inches long, he was on cpap for 7 weeks and had the typical NICU stay with a hernia surgery at 4lbs. He is now 17 months and, like his name, is a little hurricane, granted his immunity is terrible, but he is a joy and a little celebrity here! I wouldn’t change the last year for anything. He has taught me not to discount things when you are told to give up hope, sometimes things just stick around!!!

Super Hero Characteristics:

Bryson The NICU Warrior is exuberant, there is not a person who meets him who isn’t instantly captivated by his larger than life personality! He is resilient, already having overcome so many obstacles in his short life and gaining strength from each and every obstacle he has faced and continues to face. Most of all, he is inspiring! He gives hope to those who hear his story, he will make you believe that anything is possible!

Ari-tron

Ari ~ Super Hero Alias: Ari-Tron

AriAge: 9 months
Weight at Birth: 1 lb 2 oz
Weeks Gestation: 28
Time spent in the NICU: 4 months 27 days

My Preemie Story:

Ari-tron was born December 26, 2012! He was born 1 lb 2 oz and 10 1/2 inches! Never in our lives had we seen something so magnificent but yet so frail. We knew from early on that we had a long road ahead of us, but we were so excited to walk that road with him.

We were told at our 18 week appointment that most likely he had Spina Bifida as well as bilateral clubbed feet and that we had the choice to terminate the pregnancy. This was not an option for our family. Not knowing anything about Spina Bifida we were beyond scared. We decided to get a 2nd opinion. Our next Dr. more professionally confirmed that yes it was a neural tube defect most likely in the S1 location. But more importantly he pointed out that Ari was a small baby. We now learned that he was an IUGR kiddo.

We made it 28 weeks and then had an emergency c-section. Ari measured about a 24 week old baby. [Read more…]

Adventurous Atticus

Atticus ~ Super Hero Alias: Adventurous Atticus

AtticusAge: 14 months
Weight at birth: 2 lb 1 oz
Weeks gestation: 26 weeks
Time in the NICU: 90 days

Diagnosis, surgeries, complications?

Apgar scores of 1:1:1:5, required mechanical ventilation for the first week of life, neutropenia at birth, anemia of prematurity- required multiple blood transfusions, Respiratory Distress Syndrome, Chronic Lung Disease of Prematurity, Bronchopulmonary Dysplasia, Moderate PDA, Bilateral Inguinal Hernia Repair

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

The first 3 months of Atticus’ life were difficult to say the least.  The constant rollercoaster of the NICU took i’s toll on myself and my husband.  That’s the best way I can describe the NICU experience… A rollercoaster.  We never knew if he was going to be okay or what medical surprises would be waiting for us when we walked through the NICU doors; we never knew if Atticus was having a “good day” or a “bad day”; we never knew if he would be well enough to hold that day, or even touch; we never knew when he was coming home… being told constantly that he would be, only to be let down because he had a bad day.  Through it all, Atticus was the one in our family who was the strongest. [Read more…]

Ninja Sophia

Sophia K. ~ Super Hero Alias: Ninja Sophia

Sophia KAge: 2 years
Weight at birth: 1lb 9oz
Weeks gestation: 24 weeks
Time in the NICU: 103 days

Diagnosis, surgeries, complications?

Chronic Lung Disease, PDA, Oxygen dependent, malnutrition, hernia, Retinopathy of prematurity (eye sugery), vision loss, oral hyposensitivity & tactile hypersensitivity

Why Should Your Child Be Recognized as Preemie of the Year?

Sophia has always been a fighter, even came out kicking and trying to cry. She has 3 therapies each week & has come so far for her little age of 2 (21 months adjusted). She continue to give others hope by visiting the Ronald McDonald House & Room where other preemie parents stay while their children are in the NICU. Not to mention being inspiration for preemie parents on Facebook. When you tell people you have a 24 week old and see how far she has come it really does give hope to other who are just starting their rollercoaster ride.

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

My Sophia is known as the little Ninja because she is such a strong little fighter who conquers any developmental/medical issues she has.

What advice do you have for future NICU parents?

You are your child’s best advocate, it’s important to be there regularly in the NICU not only for the bonding/kangaroo care but to make sure things are going right. And if you need help (emotional/informational) don’t be afraid to ask anyone because this is a very hard time & they want to help so let them.

Little Fighter Johnny

John S. ~ Super Hero Alias: Little Fighter Johnny

John SAge: 3 months
Weight at birth: 1lb 4 oz
Weeks gestation: 24 weeks, 6 days
Time in the NICU: 90 days and counting

Diagnosis, surgeries, complications?

underdeveloped lungs, surgery on major vessel to heart, blood clot, hernias, had to be revived at birth, was put under the light, has hypospadias

Why Should Your Child Be Recognized as Preemie of the Year?

John S. is definitely a miracle child. I had went to a doctor at 2 months and they told me I was not pregnant so I treated it as if I was not until I was 5 months pregnant and started showing. From there I had nothing but complications. When I went to deliver I never knew you could have a baby that small, and I was only a little over six months. He has already taught me so much in the past 3 months. He showed me how strong a little guy can be. He has been through so much and is still fighting. I call him my little fighter, and the nurses say he has spunk. He has so much personality and sometimes he will give you that look like “what the heck are you doing to me?”, but at the same time a look of encouragement and we can get through this together. I spend all day everyday at the hospital with my son, and its amazing how much they can improve day to day. I have learned so many medical terms, and of other people’s situations, and am aware now of premature birth. He has also taught many people in my family the power of hope and prayer, he is definitely my hero. There is no way I could ever go hrough what he has been through. I have so many nurses say I am lucky that he is doing so well for how small he was born, and I know it. He is only on one liter of oxygen right now, and needs to master the bottle. He is currently 4 pounds and 14ozs. [Read more…]

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.

Cowboy Cole

Cole C ~ Super Hero Alias: Cowboy Cole

Cole CAge: 5 years
Weight at birth: 1 lb 5 oz
Weeks gestation: 24 weeks
Time in the NICU: 147 days

Diagnosis, surgeries, complications?

Bronchopulmonary Dysplasia, Grade 2 Bilateral Brain Bleed, PDA ligation surgery, Hernia surgery, Intubated for four months.

Why Should Your Child Be Recognized as Preemie of the Year?

Much to our surprise, Cole was born on a hot day in mid June instead of an autumn day in early October.  Weighing only 1 lb. 5 oz. and having very underdeveloped, sick lungs, Cole was given a 20% chance of survival.  We were told that if he did live, there was only a 5% chance that he would not have life long medical problems.  His stay in the NICU would last until his due date or beyond.  Born in Beaumont, Cole was transported to Texas Children’s Hospital by the Kangaroo Crew.  He was diagnosed with BPD, a chronic lung disease common to premature babies.  During his stay at TCH, he had a grade II bilateral brain bleed, PDA ligation surgery, risk of ROP, and hernia surgery.  He was almost a month old when we were finally able to hold him.  He was intubated four out of the five months he spent at TCH and then received oxygen through a nasal cannula.  A week before Thanksgiving, Cole was released from TCH.  At home, he continued to require oxygen through a nasal cannula and received supplemental nutrition with an NG feeding tube until after his 1st birthday.  He also received occupational and feeding therapy.  Cole is now an energetic five year old and loves the same things that other little boys his age enjoy.  He has a fun loving personality and inspires everyone he meets.  If you met him today, you would never guess all that he has been through.  He is truly our hero!

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

Cole is FEARLESS!  Like a speeding bullet, Cole rode a sheep farther and longer than any other little cowboys and cowgirls at the rodeo.

Cole is ENERGETIC!  Unable to stand still in the outfield of a TeeBall game, Cole has been spotted picking flowers and throwing dirt.

Cole is CHARMING!  Cole never misses an opportunity to greet a pretty lady.  He has been witnessed practicing on the mannequins at department stores with, “Hello Ladies!”.

Note (posted 10/23/12):

You can see Cole’s journey at Carepages.com. The name of his care page is colecoopercarepage.

What advice do you have for future NICU parents?

You are your baby’s best advocate… don’t be afraid to ask questions.  Although you may not be able to hold your baby for a while, you can read, hum, and sing to your baby.  Be as involved as the hospital staff will allow you to be. You can tell them you want to participate in little things like bathing, diapers, and feedings.

Site last updated July 17, 2017 @ 9:51 am