Bentley the Brave

  • BentleyAge: 3
  • Weight at Birth: 1 lb. 14 oz.
  • Weeks Gestation: 25
  • Time spent in the NICU: 91 days
  • Super Hero Characteristics Courage, Strength, and Determination

My Preemie Power Story:

Nothing could have prepared me for the birth of my twins at 25 weeks. My daughter Aubrey was born at 1 lb. 4 oz. 11 inches. A minute later my son Bentley was born weighing 1 lb. 14 oz. 13 inches. Four hours after my emergency c section the neonatologist informed me that they had stabilized my son, but there wasn’t much more they could do for my daughter. Nurses strolled me into the NICU where I would say goodbye to my angel and meet my super hero for the very first time. Little did I know that moment would redefine my meaning to life and miracles.

The NICU team warned me that his extreme prematurity would be a long journey filled with one step forward and two steps back. If he survives, he faces the risk of severe health problems and lifelong disabilities. Bentley proved to be a fighter from day one, and continuously defied odds. Milestones became joyous celebrations, no matter how big or small they were. After 91 days of watching my baby grow with the help of an incubator, ventilator, picc line, blood transfusions, PDA, cpap, vapo-therm, nasal cannula, jaundice, feeding tube, brain ultrasounds, eye exams, and countless blood draws, Bentley was able to come home. Within his first 2 years’ home, he endured 3 surgeries and numerous hospital stays. While he has faced several challenges due to his prematurity, he has proven that no fight is too big with his strength.

Having the qualities of a super hero does not mean that he will never face failure or disappointment, it means that he will get up every time the odds are against him and try with all of his might. Bentley may look and act like the average three-year-old, but the resilience, courage, and fighting spirit within him make him my very own superhero. I am forever thankful to have a continuous reminder that miracles really do happen.

Fearless Arianna

AriannaAge: 16 months
Weight at Birth: 2lbs 12oz
Weeks Gestation: 29
Time spent in the NICU: 59 days

My Preemie Power Story:
Preemie Power Story From the very beginning of my pregnancy I was considered a high risk patient. I had chronic hypertension and gestational diabetes and was recommended to see a high risk doctor as well as my regular doctor. About a week and a half before I had Arianna my blood pressure was staying high and so my doctor decided to do some blood work. The next day they called and told me my blood work wasn’t good and that I needed to go to L&D. When I got there I was admitted and a bunch of blood work was done and I was told that some of my numbers were high. I was told I was going to have to start going to the doctor more frequently for testing and was given a steroid shot and sent home. Four days later I had a appointment with my high risk doctor for an ultrasound. They discovered my placenta had ruptured and I was admitted back into the hospital. For 4 days I was monitored and had blood work done. I had developed Pre-eclampsia while in the hospital. The morning my daughter was born they did another ultrasound checking on her and they discovered my placenta had ruptured more. My high risk doctor and the doctor that delivered my daughter told me that they needed to get her out. I was taken over to L&D where they did a emergency c-section. My daughter Arianna was born on May 19, 2013 at 2lbs 12oz and was 15″. I got to see her a few seconds before they took her to the NICU. She was so beautiful and so tiny. I didn’t get to see her until 28 hours later. She was a fighter from the beginning. They discovered she had Patent Ductus Arteriosus and was given medicine and it cleared up after being given the medicine. The first time she was given a bottle she had no issues and finished it. She spent 59 days in the NICU before she finally got to come home. It was so exciting and scary at the same time. Now she is 16 months old and weighs 25lbs and is 31″. She is a fighter and I am so proud of her. Everything that was thrown at her she pushed through it and kept going. She is fearless!

Super Hero Characteristics:
Strong, Fearless and Awesome

Super X

XavierAge: 1 Year
Weight at Birth: 640 grams
Weeks Gestation: 23 weeks
Days in the NICU: 125 days

My Preemie Power Story:
Well, here we are, one year after Super X’s traumatic and premature entrance into this world at 23 weeks gestation. For the first 125 days of his life, he took us on the scariest roller coaster, with terrifying twists and turns. Since his NICU discharge he has been the most chill, relaxed baby.

Super X isn’t just our miracle baby, he is also our “rainbow baby.” A rainbow baby is a baby born after a miscarriage.

Super X has overcome what so many people believed was possible. Doctors didn’t expect Super X to survive and they suspected if he did, chances were high that he would be blind, deaf, or suffer from cerebral palsy, amongst other complications.

From the moment I went into premature labor and was admitted at 4 cm dilated with Super X’s foot hanging out of my cervix, God has looked out for him. Super X was able to “cook” in me for five more days, enabling doctors to give me 2 courses of steroids to speed up Super X’s lung development.

They say babies born in the amniotic sac (“born in the caul”) are blessed babies; Super X proves that! He was born with his sac breaking at the last possible moment. Being born in this manner prevented him from trauma, such as dangerous bruising and brain bleeds.

Super X’s bravery was admirable, evident from the day he was born. He fought to live, hardly crying through any of his multiple painful procedures while in the NICU. He has overcome more than what many of us adults have!

Super X overcame Necrotizing enterocolitis (NEC), the second most common cause of death in preemies, which required 2 intestinal surgeries. He also had ROP and underwent laser eye surgery.

Super X also had a hernia and PDA, which were resolved on their own without medical intervention.

We couldn’t even hold him Super X first few weeks of his life because he wasn’t stable enough, and because his skin was paper thin and could be easily ripped.

We were able to hold him when he was 7 weeks old, one week after his first intestinal surgery, for a few minutes.

Even at his sickest, Super X was a tenacious and feisty firecracker. He was the boss and he was driving the bus, as his doctors would say.

“We’ve learned that you don’t know how strong you are until being strong is the only choice you have” (author unknown).

We look at Super X every single day and marvel at him, especially when we think back to all the possible outcomes we were given based on his gestational age at birth. Super X is such a happy baby and fills our hearts with joy.

God blessed Super X with the BEST doctors and nurses as well, and for that we are also grateful.

Super X is tough and strong! He is our 1 pound 6 ounce miracle.

“Most people never meet their hero. I gave birth to mine.” (author unknown).

Super Hero Characteristics:

Courageous: From the moment he was born, letting out a tiny kitten sounding cry, when doctors didn’t expect him to be born breathing, Super X has shown his determination to survive to make this world a better place. When first born, he was strong to squeeze our fingers when he held his hands. He sensed our worries and wanted to reassure us with his strong grip. Tiny but mighty!

Tough: Super X is mighty and tough, banishing the most dreaded preemie complication: NEC. He overcame 2 intestinal surgeries and laser eye surgery. He looked muscular even at his birth weight; his muscles were evident.

Resilient: Super X has shown that he can overcome whatever challenges come his way. Super X was discharged from the NICU without any monitors or oxygen needs, almost unheard of for a 23 weeker!

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

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!)

Love Bugs

Emma & MattieAge: 8 years
Weight at Birth: 952 & 950 grams
Weeks Gestation: 26 6/7
Time spent in the NICU: 82 days

My Preemie Power Story:

The director of neonatology at st. John’s came into my wife’s hospital room. She had been contracting all night. It didn’t look good. The babies had only been in there for 20 weeks. The doctor explained the many potential complications of a premature birth, which included, brain and nervous system disorders, hearing loss, vision loss, breathing issues, developmental delays, learning disabilities, and the list went on– that is, if the babies even survived, a 20% likelihood. She bravely asked one question- “At what point, what magical week would things look drastically different?” He looked at her and said, “At 27 weeks, viability changes to 90%.” Of course, there would still be serious cause for concern, but at least their chance of survival increased. He went on to say he did not suspect she could make it that far, but that each and every day counted. And so began our hospital stay. They would give her a maximum does of magnesium sulfate to keep her relaxed for as long as her body could take it. May 5th at 7am, exactly 2 weeks and 6 days later — one day shy of the magic number of 27 weeks and 13 weeks early the doctors said the twins were coming. The contractions had increased overnight. We needed to get them out quickly. I was sitting there just above Emily’s head as the doctor delivered Mattie Danielle, wrapped her up, and set her on Emily’s chest. She was so beautiful — this perfect little 2 pound baby girl. Emily and I were looking at the first love of our lives.

What Emily couldn’t see was the controlled pandemonium that ensued on the other side of the surgical curtain just after Mattie was set down. The doctor pulled out Emma Claire–also 2 pounds– quickly. She was blue. She was not moving. I couldn’t let Emily know. She had just fallen in love thirty seconds ago. The nurse came over to take care of Mattie and get her to NICU. Then I raced off to find Emma. The team had stabilized her. I’d never seen so many tubes coming out of a baby. She was so small and frail. But now she was with us too.

That first day, I put my hands into the sealed isolette that was protecting Mattie. I placed one hand over her head and one hand around her bottom. Our nurse explained that preemies who were cradled by their parents as early as possible seemed to do better. I remained there for quite some time. I remember thinking that if any heartbeat or any breath could be her last, how could I leave? We didn’t get to hold Emma for almost a month. During her NICU stay, Emma had a surgery to close a valve adjacent to her heart and, shortly after her NICU stay, a second surgery to save her vision.

Thankfully, after eighty-two days of ups and downs, we brought our two beautiful daughters home.

Super Hero Characteristics:

powerful, brave, transcendent, indefatigable, brilliant, kind, smart, humble, funny

Ryder the Fighter

RyderAge: 5 months
Weight at Birth: 1lb 7 ozs
Weeks Gestation: 24 weeks 5 days
Time spent in the NICU: 3-1/2 months

My Preemie Power Story:

On March 29th, 2013 at 19 weeks pregnant we found out our first child would be a boy! We also had our world turned upside down by my being admitted to the hospital that same day because my cervix was thinning and I was beginning to dilate. After being told that IF we made it to the point of viability that it would still be a difficult journey after that. It was probably the worst day of my life, starting out with such joy to know that I was having a son and then to be told if and when you have him he may not even survive.

Needless to say, I made it to 24 weeks 5 days and on May 7th 2013 our little miracle baby was born! I remember looking down for a split second through my pain and tears as the doctor kept saying to me, “Look at your baby” and there he was. So tiny and fragile weighing just 1lb 7oz. It took 2 attempts to intubate Ryder and on the second try, the tube worked and he began breathing.

Hours later I was able to go to the NICU and see him for the first time. There were so many things attached to him, but he was still so beautiful. His little arm was stretched out and I placed my finger in his hand. When he gripped my finger with such strength, I knew at that moment everything was going to be okay.

We spent a long 3-1/2 months in the NICU. He fought through one infection that almost took him from us, was on the ventilator for 2-1/2 months and had surgery to close his PDA valve. Every day I spent with him he taught me more and more that life had a bigger purpose for me and I just hadn’t found it yet, but it was Ryder. He is my Super Hero, he has proved statistics wrong and is thriving and loving life. He has taught me that it is okay to reach out to others for help and support, you don’t have to fight life’s struggles on your own! He came home on August 15th on a small amount of oxygen and we were told he would probably need it for a few months, and again he proved them wrong. Two weeks later at his first pulmonary appointment he was taken completely off of oxygen and we haven’t looked back since! He is a healthy 8lb baby now and I couldn’t be more in love <3.

Super Hero Characteristics:

Inspiring, Tough, Strong, Smart.

Roman the Firestorm

RomanAge: 7 weeks
Weight at Birth: 2.7lb
Weeks Gestation: 24 weeks 5 days
Time spent in the NICU: 7 weeks

My Preemie Power Story:

After 7 weeks of bed rest at the hospital, Roman came into the world 13 weeks early. He decided to break his water at 27 weeks, and stayed with his mom for an additional four days.  Roman the Firestorm was born at 27 weeks 4 days on August 18, 2013 weighing 2 lbs 7 oz and 16 inches. As a Preemie superhero he earned his name through his actions as soon as he entered the world.  One hour after entering the NICU “Firestorm” defeated the ventilator by snatching it out. At 8 days old he had his first blood transfusion. This imparted additional superhuman strength and 14 days later he was removed from oxygen and was able to breathe without assistance.

Like many P-Superheroes he had a PDA which caused a heart murmur to be noticeable. The pediatric cardiologist declared that this may be a long term issue or he may need medication to help. Firestorm begin to get words of encouragement from his family and 2 weeks later without any intervention the murmur is no longer present. Being born with positional club feet he utilized the incubator as his own gym, moving, and pushing up allowing him to strengthen his leg muscles. He has delighted his nurses with his incubator acrobats, often needing to be snuggled to prevent this.

His time in the NICU has been utilized gaining strength to conquer the world through the mighty breast milk. He has almost doubled his weight in 7 weeks and has grown 2 inches. Although his feedings have been through the “Dragon” tube he has continued to get stronger and attempt to slay this. Taking bottles at 34 weeks he was defeated the first time but has continued to fight. He is currently fighting the dragon at least twice a day, each day learning the dragons weaknesses and his strengths. Through all his victories he has always stayed positive, and smiled along the way. Never seeing a tear on his face, has allowed everyone who comes into contact with him to be more than positive. “Firestorm” is currently in the NICU continuing to utilize all his superpowers and joining with other P-Superheroes to be supportive. Mommy and Daddy hope to bring him home and continue to watch him defeat all obstacles placed in front of him to be a healthy, striving P-Superhero. Until then where there is beeping in the world, and lights all around, Firestorm will be there to take them all down.

Super Hero Characteristics:

Ability to defeat all NICU machines in a single bound. Ability to deflect pain and inflict happiness to all that come in contact with him. Ability to gain weight by 2 ounces in a single bound.

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!)

Nella the Amazing

NellaAge: 1 year
Weight at Birth: 1 lb 6.9 oz
Weeks Gestation: 24 weeks 4 days
Time spent in the NICU: 4-1/2 months

My Preemie Power Story:

Nella was born 4 months early and they don’t know what caused me to go into premature labor. They tried to stop it; nothing worked. She ended up being breech. I had emergency C-Section. I didn’t get to see her before they took her to the NICU. They said if she made it to the NICU, she wouldn’t make it through the night. I got there the next day. She was so tiny, the size of a barbie doll hooked up to a ventilator and on about 10 different medications. She had a pin rose put in at about 2 weeks old due to one of the medications messing with intestine. She had heart surgery at about 3 weeks due to her heart valve not closing. She had a central line put in at 1 month 1 week age. We found out she had a grade 4 bilateral brain bleed and was told never to get my hopes up –  anything and everything could and probably would go wrong with her. I heard her cry when she was 2 months old. I held her when she was 2 1/2 months old. She took her bottles fine from the start, but she was on oxygen. She ended up coming home on oxygen; she had it on her 6 months after she got home. Before we left I was told not to hold my breath, she wouldn’t make it past 10 months of age and if she did she would never walk, crawl, talk, or show emotions. She now crawls backwards says dada walks with help and is always smiling at everyone.

Super Hero Characteristics:

Carefree, curious, intelligent, careful, creative