The Wiggle Worm

EdgarAge: 10 months, 20 days
Weight at Birth: 1 lb 2 oz
Weeks Gestation: 23
Time spent in the NICU: 153 days

Preemie Power Story:

Our story is no different than any other. But they all have their own special meaning. Edgar The Wiggle Worm was born at 23 weeks, also known as micro-preemie, November 25, 2013, weighing in at only 1 pound and 2 oz. We will soon be celebrating his first birthday since he was born. He would always find a way out of his snuggle, knock out his feeding tube and respiratory tube. When the nurses would place him on his belly, he would be so comfortable he didn’t like his assessments. It was always a challenge trying to get through them with out his heart rate dropping or his respiratory going down. He looked like a little man, long eyelashes, dark eyebrows and a small hairy back. As he is growing, he shows us he still has that strength he had while in the NICU.

Having surgery at less than 1 month of being born and another at almost 4 months of being born, a feeding tube for about 4 months, and sometimes not being able to be fed due to having problems with his stomach, and having oxygen support for about 3-1/2months, Edgar is a miracle preemie.

Now at almost being a year old he is one tough Wiggle Worm. He rolls all over the floor, loves to jump around his bouncer.

We are thankful for everyone that helped our Wiggle Worm fight for his life. He is our little miracle preemie.

Super Hero Characteristics:

Loves to wiggle his way out of trouble, drinks his super milk, and uses his strong legs to play.

Alonso Big Cheeks

AlonsoAge: 9 months
Weight at Birth: 500 g
Weeks Gestation: 23
Time spent in the NICU: 154 days

My Preemie Power Story:

The spirit of a superhero fits on a 500g little baby, born at 23 weeks of gestation. Even when he was so small, Alonso decided to comfort his parents and grasped hardly their fingers with his tiny hands to give them a clear message that he only needed time. Then infections began attacking him and doctors almost stopped being optimistic, but one morning good news began to come again and a few days later he was much better. He was 154 days on the NICU, with the help of the great staff of St. David´s Medical Center in Austin, Texas. Alonso has a good sense of humor, amazing healing power, a smile ready for his parents and new reasons to make them proud every day. What makes him a superhero? His ability to recover from intestine perforation, multiple infections, IVH, ROP and BPD, among others, and still be very fine today, gaining weight and progressing with his developmental milestones on time, always in a good mood He’s 9 months old (5 adjusted age today).

Super Hero Characteristics:

Healing power. Every time Alonso was sick during his NICU stay, when the doctors were more worried about his health, suddenly he became better. Incredible sense of humor. Alonso was a little more than 2 pounds when he began smiling hearing the voice of his mother. Now he smiles and laughs all the time, he is a happy baby. Growing factor. Alonso has a great capacity to convert his mother´s milk in growth and health. He was born veri early and very small but before his due date his weight was ok and his feeding abilities progressing.

Jonny McDash

JonathanAge: 2
Weight at Birth: 1 lb 5 oz (600 grams)
Weeks Gestation: 23
Time spent in the NICU: 150 days

My Preemie Power Story:

Jonny is fast. As soon as he could stand, he walked. And as soon as he could walk, he ran. This speed is his greatest strength, and his greatest weakness.

Half-way through his gestation, he thought he was ready to fight supervillains. His sisters pleaded for him to stay put. “No-no-no, baby, don’t come out!” His mother told him it wasn’t time. But there was no slowing down McDash. He burst his bubble and made his escape. A superhero was born.

Jonny’s first stop was the Neonatal Incredible Kid University, or “Niku,” a school for super-kids like him. He learned to do normal baby things like unfuse his eyes and hold his heat. He trained to enter the world as his mild-mannered alter-ego. But even in Niku he was not safe .

Episode1: McDash vs. The Potent Deceptive Alternate (PDA) & Necros Ever Crank (NEC)

Knowing that Jonny McDash would become a formidable enemy, the League of Supervillains (LoS) infiltrated Niku. They whispered to McDash to keep a heart duct open. An open duct would make him faster, they lied. He was still young, so their deception worked. His body slowed. A team of superheroes, “The Doctors” gave him an antidote to close the open duct. LoS heard of this. Upset that their deception had been thwarted, they sent Potent Deceptive Alternate (PDA) to open the duct again. “Surge,” the superhero in scrubs, defeated PDA with two staples and a scalpel. Brilliant! But without wasting any time, the LoS attacked again. This time they sent Necros Ever Crank (NEC) against Jonny’s intestines, the source of his energy and strength. Over a half a foot of intestines died. But once more, Surge came to the rescue, discovering the stealthy villain and sending her packing.

Episode 2: McDash vs. the Rush Reserve Operative (ROP)

Having failed to eliminate Jonny McDash, the enemies sought to neutralize him by taking away his eyesight. To catch the speedy hero, they sent in their fastest Reserve Operative (ROP) – Rush ROP. Armed with an impenetrable protein cloud, Rush ROP attacked McDash’s eyes, threatening to tear them apart from the inside. The operative got more than he bargained for, however, since Jonny and the Doctors were ready with their laser cloud piercer, turning back Rush ROP in record time.

Episode 3: McDash strikes out on his own
The Supervillains kept trying, but McDash had grown strong enough to defeat them easily. Desat, Apnea, and Brady often attacked together. Kidney killer threw him into renal failure more than once, and Anemia showed up again and again. But each time, Jonny McDash and his team of teachers (wearing badges like “RT,” “RN,” “NP,” “OT,” and “PT”) and The Doctors warded them off. When ready, McDash passed his graduation exam (known in-house as the “carseat test”), with flying colors. He was ready for the world!

Next Time on McDash: LoS unleash a top secret project, code-named “Failure to Thrive,” and Dr. Nephros delivers McDash from Acidosis Monster. McDash triumphs again!

Super Hero Characteristics

Primary Superpowers:

Speed, quickness, and super-fastness. Also good at being early and fighting supervillians

Super R

GunnerAge: 1 year
Weight at Birth: 1lbs 7 ozs
Weeks Gestation: 23
Time spent in the NICU: 76 days

My Preemie Power Story:

We were not ready or prepared to have a preemie.  I had never been around a preemie and didn’t know at all what happened when you were to have one.  With a 1-1/2 year old  daughter at home, I was not ready for our little guy to be here yet.  Gunner was born at a hospital that was not capable of handling a baby his size. After being bagged for 30 minutes they were finally able to get a tube in to keep him alive with his need for oxygen.

About 4 hours after he was born, he was finally able to get to a hospital that was able to handle such a small guy and get him stable.  He spent 76 days in the NICU struggling to stay ahead of the game.  He had a PDA heart ligation that caused him to go back on 100% oxygen on and off for several days.  He was able to come home a month before his due date, but on oxygen for several months after.

He has been home a year now, and we have had our struggles.  He has sensory issues that requires him to wear a spio almost every day to keep him calm and focused.  He had fluid on the ears and was unable to hear for at least 5 months that we know of and is finally able to hear and respond at 14 months old.  We have struggled with feeds and his food aversions, but every day we try a new food and try to get him what he likes to eat.  We are going to a neurologist who is watching for mild cerebral palsy and he will have an MRI done for the first time next month.  He has some eye turning issues and has glasses that he refuses to leave on.  Life has been very tough for us since our special little guy was born, but we are blessed with every minute he is here.

Super Hero Characteristics:

Super Strength.  Super Speed (Crawling), Reactive adaptation (Was able to adapt and overcome no matter what was thrown at him), Empathy (Always has the power to make everyone smile!)

Storm Trooper

JaylenAge: 9 months
Weight at Birth: 1lb 8oz
Weeks Gestation: 23
Time spent in the NICU: 255 days

My Preemie Power Story:

It was a very sleepness night in the NICU. As I tossed and turned I felt a dark cloud surrounding my room. Where am I? On March 31, 2012, I was awakened by many doctors only to be informed it was time for him to join me in the world. My baby was beginning the fight of his life. Only being twenty three weeks pregnant, I knew then my baby was coming, but I wasn’t sure if he was ready to take on the world. Out of nowhere, I felt a strong and mighty kick! I knew at that moment I had a brave daredevil growing inside of me. What my little guy didn’t know was that all the prayer warriors in our family, at church, as well as friends were constantly lifting him up in prayer. The nobility of the doctors and nurses was also on his side. [Read more…]

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.

Super Dancer Gracie

super-dancer-gracieAge: 4 years
Weight at Birth: 1lb 7oz
Weeks Gestation: 23.6
Time spent in the NICU: 93 days

My Preemie Power Story: 

At 23 weeks and 6 days Gracie was born weighing only 1lb 7oz. After a very long 3 days, I finally got to see my baby. As with most preemies, lots of tubes, IV’s and other unidentifiable equipment surrounded this tiny human.  It’s enough to send an already scared parent into overload.  The wonderful staff at Baptist Hospital (now St. Thomas Mid Town) helped to keep me calm. Supporting Gracie and me and nursing us both back to health. Slowly 6 weeks crept by and I was allowed to hold my baby girl. Wow! What a feeling! With an 8% chance to live Gracie defied all odds.  Not knowing what her outcome would be, she overcame pneumonia, potential kidney failure and many other possibilities and today has no residual health issues.   Gracie is a lively 4 year old who is on the dance team performing for anyone who will watch. From her back bends to her leaps she never stops moving.  She is fearless, just as every superhero should be. I don’t know what my life would be like with out my Super Dancer, and I don’t even want to think about it.  She truly is my Super Hero!

Super Hero Characteristics:

Super Smiley,  Super Dancy,  Super Friend, Super Helper, Super “I Can Do That, That’s Easy” Girl

Happy Jax

JaxonAge: 14 months
Weight at Birth: 1lb 8oz
Weeks Gestation: 23
Time spent in the NICU: 93 days

My Preemie Power Story:

My pregnancy was healthy and normal. An ultrasound said we were having a girl! My husband and I were on vacation 4 hours from home. We spent hours in our boat talking about how we would take our daughter fishing. I was 23 weeks along – just over half way.

But on the last day of vacation, I went into labor. I was airlifted to a hospital with a high-level NICU. And the baby was born. It was not breathing.

Doctors were working frantically, everyone was crying.

And then I heard the most amazing sound – a tiny little cry! The baby was alive! [Read more…]

Unstoppable Nenna

Cerenna-TeeAge: 11 years
Weight at Birth: 1 lb 4 oz
Weeks Gestation: 23
Time spent in the NICU: 4 months

My Preemie Power Story:

Cerenna-tee (Serenity) is an inspiration. We adopted Cerenna when she should have been born. She was 4 months old. Boy she has not slowed down. She has beaten all the odds. She is legally blind from ROP and wears hearing aids. She has undergone a recent surgery for a Vitreous hemorrhage in her right eye. In grade 5 she did her speech on herself and how difficult it is to be the different one in the class, the one with all the equipment, the one with the thick glasses and hearing aids. She made it 3rd in her division in her school and went on to the next level and did even better with a 2nd. She made the whole school understand what it is like to be her and moved many people. She is an avid reader often reading up to 10 novels in a week. Nothing slows her down. She is my hero forever and always.

Super Hero Characteristics:

Inspirational, brave, intelligent

Undercover Superheroes

Aiden and EllaAge: 2.9 years
Weight at Birth: 1.6 lbs & 1.8 lbs
Weeks Gestation: 23.6 weeks
Time spent in the NICU: 144 days

My Preemie Power Story:

Upon a glance, you see two adorable 2-½ year old twins playing or maybe fighting, as siblings will do. There is no magic cape or defining insignias, except maybe a scar or two under their tiny clothes. They conceal their greatness blending into any playground or park. But behind their smiles and giggles, lies the story of two undercover superheroes.

Every superhero has a backstory, which tells how they came to acquire their extraordinary powers or abilities. Like many of these superheroes, Aiden and Ella’s story begins with a tragic event but ends in triumph. Aiden and Ella were born unexpectedly and abruptly at 23.6 weeks. Being born 4 hours shy of 24 weeks, we were given a choice to save our children or let them go. We choose to let them fight, and that night our magnificent superheroes were born. Our 1.6 lb and 1.8 lb. twins waged war against the odds and fought a tremendous fight in the NICU. Collectively they battled though bilateral brain bleeds, PDA ligations, life threatening pneumonia, countless blood transfusions, a collapsed lung, and ROP surgery. They fought with fierce determination, quiet resolve, and an abundance of strength. At times, their strength and fortitude outshined any adult in their presence. They were surrounded by their supporting sidekicks (like all true superheroes are) of six neonatologists, numerous amazing nurses, respiratory technicians, family and friends. But as in all superhero stories, many of us did not truly grasp their super powers until later. After 144 days in the NICU, the twins finally were discharged from their superhero “headquarters” and came home to their family!

It is said that all superheroes have a motivation, a responsibility if would to the world around them. With that Aiden and Ella have shined! Their story has inspired a community of people to not only express their love but also redefine it. They continue to teach anyone who comes in contact with them how to accept challenges, to appreciate the small things in life and to value everything and everyone around us. They make those around them re-examine what is important in life, and what is non-essential. What a small but miraculous lesson from two micro-preemies: the simple act of loving life.

Now you may ask, what are their superhero names? Do they have a secret identify? The simple answer is no. Their names alone define their superhero status. For in just their first names alone, Aiden and Ella evoke inspiration!

Today, Aiden and Ella continue to fight against the odds. While they won the war of the NICU, they have waged a new war against developmental delays. They have accepted the challenge and are advancing day by day! Like the NICU, it is a battle that they will win over time. Their supporting cast of sidekicks have grown but their motivation is still the same~ spreading love and inspiration to anyone who meets them! We are honored and privileged to be the parents of Aiden and Ella, undercover superheroes!

Super Hero Characteristics:

The meaning of his name alone is a testament: “LITTLE FIRE.” From day one he had the fire in his heart to live. His DETERMINATION to fight against the odds shows his abundant strength. These days he is determined to be the boss of his twin sister and big sister! Lastly, CHARM! In the NICU he charmed the nurses with his smile and cuddles; today he can continues to use his charm for both good and evil!

From birth, her quiet RESILENCE has amazed everyone. She continually attacks every challenge head on and wins! Ella’s STRENGTH is immeasurable, both mentally and physically. Nowadays, her focus is physical; she does have a brother to contend with after all! At first glance you see pure sweetness. Don’t be fooled: lying underneath that smile is a MISCHEIVEOUS soul! When she is caught red-handed, she bats those big brown eyes and smiles!

Site last updated January 26, 2015 @ 11:32 am