Lexi Lou

Lexi
Age: 22 months
Weight at Birth: 500 grams
Weeks Gestation: 25 weeks
Days in the NICU: 109 days

My Preemie Power Story:

Our super hero was also our Rainbow baby. After a devastating loss we were ecstatic to find out we were expecting again. At the time I found out, my husband was working over 30hrs away so my son (3) and I decided to surprise daddy at the airport. Unfortunately, only 3 weeks after my husband came home from being away for just over 5 months, I was admitted to the hospital at 24 weeks for dangerously high blood pressure. While admitted we also found out our little rainbow baby also had IUGR . I was told I would be in the hospital for the next 3.5 months until she was born. After only 5 days in the hospital my condition worsened and I developed HELLP Syndrome. I was told to contact my family because they would be taking me in for an emergency C-Section as it was the only option to save both our lives. My daughter was born in November of 2012 rather than March of 2013. Lexi came into this world weighing a mere 500grams, had no respiratory effort and required ventilation. The Doctor told my family that we were very lucky as they don’t often attempt to help babies weighing less than 500grams. During Her first few weeks of life and her 109 day NICU stay, Lexi battled pneumonia, suspected sepsis, Bilateral grade1 IVH , RDS with PIE, BPD, Persistent PDA, mild pulmonary hypertension, stage 2 ROP , Anemia and Apnea to name a few. Our little miracle could only breast feed in the NICU up until 2 days before discharge when she was finally able to master the bottle(Haberman). Finally, 10 days after her actual due date, we got to bring Lexi home ! It was an exciting yet scary day. Lexi had many follow-up appointments after leaving the NICU and she continued to amaze her Doctors and Specialists. Our little preemie decided she could do things according to her actual age rather than her adjusted age and just after her 1st birthday she took her first steps and hasn’t stopped running since. Lexi Looks up to her older brother and he loves her to pieces. I’ll never forget the first time he saw her, he said “she’s so cute” and whispered “grow bigger baby Lexi.” Although I still struggle with PTSD from our rollercoaster of a journey, I have my amazing little miracle to get me through my days. Knowing we can provide hope and inspiration to other families of tiny little miracles helps me get through tougher days. In just over a month Lexi will be turning two and she is the happiest little girl I know. Don’t stop believing in miracles, my daughter is proof they exist!

Super Hero Characteristics:
FEISTY, STRONG, FIERCE

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!)

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…]

Finntastico the Supreemie

FinnAge: 8 months
Weight at Birth: 1lb 4oz
Weeks Gestation: 25
Time spent in the NICU: 88 days

My Preemie Power Story: 

As darkness fell on the city of Richmond, an epic adventure was unfolding.  Finntastico the Supreemie arrived. Though he was only the size of a Mountain Dew can, Finntastico was destined for great things. He spent his first 88 days at The Superhero Headquarters (also known as the NICU). While there,  he learned many superhero skills, such as eating from a bottle,  being a super pooper, and charming his NICU nurses.  When he wasn’t honing his skills,  he spent his time growing up big and strong, and listening to the stories his momma read him everyday.  Finntastico’s journey wasn’t always the easiest.  He battled blood transfusions,  ROP, pneumonia, and heart surgery, but he triumphantly conquered them all.  One of his greatest victories, was over his nemesis The Ventilator. It was a long hard struggle, but with the help of his sidekicks (aka his doctors), he moved to a cpap and then a nasal cannula. Although Finntastico learned a great deal at Superhero Headquarters,  he knew it was time to move on.  He went home to his Superparents. Since then,  Finntastico has been tirelessly fighting crime, naps, and teething. Even though he can usually be found at home practicing rolling over or standing on Momma’s lap,  you never know when Finntastico the Supreemie will show up and save the day.  KER-POOOW!

Super Hero Characteristics:

He has the superpower to make everyone who meets him smile.  Super pooper! Finn makes the formula in his bottle disappear in the blink of an eye!  Super sweet!

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

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:

Aiden:
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!

Ella:
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!

Miraculous Mandy

Mandy ~ Super Hero Alias: Miraculous Mandy

MandyAge: 4 years
Weight at birth: 1 lb 12 ozs
Weeks gestation: 28 weeks
Time in the NICU: 67 days

Diagnosis, complications, surgeries? 

I had HELLP Syndrome.  Emergency C-section, Amanda was on a ventilator for over three weeks.  She was diagnosed with early stages of pneumonia and the doctors said to brace ourselves.  She was so tiny, they weren’t sure with the antibiotic she would pull through.

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

I know every parent thinks their child is the most special–as they should!  Amanda is beyond anything we could have asked for.  She is smart and funny.  She LOVES Dean Martin, Disney Princesses, and Peter Pan.  She is quite eclectic!  Amanda is very small for her age, and asks me why from time.  she also likes to ask me about the clear box (incubator) she was in as a baby, and if you could have tea parties in them.  Her imagination is so funny!  There isn’t one day that goes by where I don’t think about how scared we all were as a family.  I feel beyond blessed to have this awesome little girl in our lives! [Read more…]

Busy Bees

Addilyn and Brooklyn W. ~ Super Hero Alias: Busy Bees

Addilyn and Brooklyn WAge: 13 months
Weight at birth: Addilyn ~2.1lbs & Brooklyn 1.15lbs
Weeks gestation: 26 weeks
Time in the NICU: Addilyn~112 days & Brooklyn~119 days

Diagnosis, surgeries, complications?

The girls had many complications. They were on the ventilator for 5 weeks, and had numerous blood transfusions. Addilyn was on an accilator on and off for the first four weeks. It’s a high frequency ventilator giving 600 breaths a minute. Brooklyn went on for about 5 days while they were on the accilator; they had to be completely paralyzed. Both had PDA ligations, both had ROP surgery, and both were on oxygen for the FIRST year of life, 12 months! Addilyn developed VAP and had line blood staff infections, the VAP was caused from the ventilator and the line infections were caused from the all the medication lines, central line, arterial line etc. Addilyn also suffered from 2 brain bleeds, she had 1 in the right ventricle and surrounding tissue calling it a grade 4 and another at her cerebellum which showed damage when they began to reabsorb. We were told she may never walk, but today they are both ready to walk and enjoying all that life has to offer! Loving every minute, and each minute that passes is a precious one!

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

Our story begins far before the NICU days. We fought infertility for five years and 2 horrible miscarriages. We pursued with IVF and were pregnant with twins on the first try. I had a rough pregnancy, Addilyn and Brooklyn beat all odds, beginning from when I (mother) went into labor at 22 weeks and we were told there was no hope for survival; we were to hold our babies until they took their last breath. After 4 tough weeks of bed rest, dilated to 6cm with a foot and a bulging bag, I delivered two of the most beautiful, strong and courageous little girls. Then to fight through the NICU, Addilyn was 15 days old when the doctor sat us aside and said there was nothing more he could do and they would be turning the ventilator off, miraculously within hours her condition began to change. I believe all children and families are deserving of the “Preemie of the Year” award, we have all come along way and we all have unique stories to tell.

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

Courageous
Tough
Brave

What advice do you have for future NICU parents?

Be involved in your child’s care plan, know and understand what your child is being treated for and why. You have just as much say and advocate for the them.

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…]

The Kellenator

Kellen M. ~ Super Hero Alias: The Kellenator

Kellen BAge: 17 months
Weight at birth: 2lbs 1oz
Weeks gestation: 27 weeks
Time in the NICU: 163 days

Diagnosis, surgeries, complications?

Sepsis and pneumonia at 1 month resulting in Bronchopulmonary dysplasia.  Surgery to place a gastronomy tube for inability to eat in May 2012

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

Kellen has such amazing strength and personality.  From 4 weeks gestation until the time I delivered, the doctors were unsure and unoptimistic about him being able to make it.  Against all odds, he came into the world fighting, and has continued to do so the past 17 months of his life.  He has overcome severe breathing issues, eating issues, and developmental issues, against all odds.  He is a ball of energy that is always on the go!

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

He is incredibly strong willed. He knows what he wants and will do anything in his power to get it!
He is incredibly brave. When he went back to have his surgery, he went with the nurses back to the operating room and just gave his Mom and Dad a smile and a wave.
He is incredibly strong. He overcame a massive infection while in the NICU that nearly cost him his life. Despite the doctors prognosis, he pulled through amazingly.
He’s tough! He may be younger, but he can overtake his older brother in less than a minute!!

Site last updated March 21, 2017 @ 2:17 pm