2011 Finalists

Meet the Preemie Behind the Cape - Attend the Preemie Power Family Celebration

Ages 6+

Ikey and Reagon K

Ikey and Reagon K

Ikey the Invincible & Resilient Reagon

  • Current age: 8 years old
  • Weight at birth: 1 lb, 15 oz each
  • Weeks gestation: 26 weeks, 5 days
  • Time in the NICU: 97 and 98 days

Diagnosis, surgeries, complications?

Reagon: Grade 3 bleeds in both sides of brain, PIE, multiple blood transfusions, constant As and Bs, PDA, asthma.

Ikey: mild ROP, bilateral inguinal hernia repair, multiple blood transfusions, constant As and Bs, PDA, asthma.

Why Should Your Children Be Recognized as Preemies of the Year?
These little boys were not supposed to do as well as they have.  I had been in the hospital for the week before they were born being treated with magnesium sulfate to stop the labor.  Contractions subsided, so I was discharged on a Thursday morning.  I went home on strict bedrest (had already been on bed rest since 24 weeks.)  Four hours later, with severe pain, my husband rushed me to the hospital, 10cm on arrival, and within 21 minutes, Ikey and Reagon were born by emergency c-section.  They had an extremely rough start, and several weeks of the unknown.

Here are a couple of things they endured while in the hospital. Doctors had to work to collapse Reagon’s lung to hopefully relieve him of all of the pockets of fluid in it (PIE), at the same time as watching his grade 3 bleeds in his brain.  He endured so many As and Bs in the hospital, that there were not even spots in the chart to record them all.  He was finally discharged from the NICU after three months, only to stop breathing in my arms at home two days later.  He had an undiagnosed UTI and was septic.  He was rushed to Children’s, which was at Brack at the time, and was revived.  He was a very sick little baby. Now, he is a robust 60 pound 8 year old third grader, who plays tennis, baseball, football, and rides his bike to school.

Ikey endured multiple blood transfusions. When we would arrive at the NICU to visit the babies, Ikey would be a dark red color, and we knew he had received more blood that day.  He had many more tranfusions than his brother.  He had minor ROP, and during his last week in the NICU, when he was stable enough, he had bilateral inguinal hernia repair.  He, too, had constant As and Bs during his stay.  Too many to count.  He now is a whopping 55 pound 8 year old third grader.  He is also very active and loves football, baseball and tennis.

When the boys were admitted to the NICU, they were put in the far back corner of bay 6.  They stayed in that spot for two and a half months.  They were never feeders and growers.  They were just trying to breathe.  They are both amazing, smart, humorous, athletic, and just wonderful.  They love to play sports with their big brother Walker, age 9 (35 weeker) and their friends.  They are just a delight to be around.

Why should these little boys be recognized as “Preemies of the Year”?  Well, they are just remarkable little boys who have been through far more than most people will ever go through in their entire lives.  And, thanks to the fantastic doctors and nurses at the Seton NICU, they are here with us today and could not be doing better!

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

Ikey: invincible, adventurous, extraordinary.

Reagon: resilient, courageous, amazing.

Ian S

Ian S

Ian Man!

  • Current age: 8.5 years old
  • Weight at birth: 1 lb, 12.4 oz
  • Weeks gestation: 32 weeks (26wks IUGR)
  • Time in the NICU: 45 days

Diagnosis, surgeries, complications?

IUGR, Apnea, Bradycardia, patent ductus arteriosus (PDA), Double Hernia Surgery at 4 months. At age 3 diagnosed with ADHD, asthma and febrile seizure.

Why Should Your Child Be Recognized as Preemie of the Year?
Ian was nicknamed by the nurses and doctors in the hospital as “Small but Mighty.” For only being 1 pound 12.4 ounces and 13 inches long, he made a huge impact on all who met him. How a little baby boy can show such charisma and personality at his size was beyond me, but he did. One morning we came in to kangaroo with him and the nurse mentioned that the night before Ian had traveled the inner circumference of his isolette while strapped down in his little snugglie. She had never seen a micropreemie do so! We had so many ups and downs in and out of the hospital but his strength and attitude always inspired us.

When Ian was about to turn two and wasn’t walking, we were concerned. We met up with a physical therapist that worked with him doing visceral stimulation, and Ian was walking within 12 hours. No, not walking, excitedly doing laps from our sofa to our door; back and forth for at least 20 minutes. He was giggling with excitement the whole time.

Ian has had a rough road with his asthma. We’ve had more ER visits than we could count as well as two 911 calls. Each time he held no ill will to the nurses or doctors; he would smile and work his charm. He views the hospital as a fun place which amazes me considering all he has been through.

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

Ian is the strongest and bravest kid I know. He has endured more than many of us ever have in our lives and has done it with a smile. Spinal taps, blood draws, multiple x-rays and more. There are times we cried watching him endure such things, but he just sailed on through.

When he broke his leg at age 3 they gave him a bent leg cast because they said “he’d never be able to handle walking in a cast.” The cast went from the tip of his toes to his hip.”It took Ian about 30 minutes to figure out how to do it, but he did it and did it with glee! By the time the cast was to come off, he’d worn off all but 1 layer of the cast material. He loves proving people wrong. He simply loves everyone he meets. He inspires me daily.

Lorenza P

Lorenza P

Smily Lorenza

  • Current age: 6 years old
  • Weight at birth: 2 lbs, 14 oz
  • Weeks gestation: 28 weeks
  • Time in the NICU: 46 days

Diagnosis, surgeries, complications?

ROP, brain bleed level 2, oxygen dependent until 6 months.  Left side weakness…

Why Should Your Child Be Recognized as Preemie of the Year?
Lorenza was brought to us by her angel twin brother Jacobe four days after their birth. We were searching for a child to love and had our papers ready to adopt a special child/children. Jacobe hung out on this earth for four days until the right parents were found.  On the national day of love (Feb. 14th), we were called. He gave his sister a kiss (white patch on her left shoulder) and he flew back to heaven.  Lorenza was a fighter from the start. She did and continues to do things in her own time with a determination that would beat most normal mere mortals. She has the power to make you smile on the dreariest of days and energy that expounds to everyone that meets her. She is a miracle like so many preemie children, but she just has that one “special” spark.

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

Determination – Lorenza has had determination from the first moment she took a breath on her own. She was determined to cry even when she had a vent. When she was learning to crawl, she would give it everything she had, and she was going to do it on her OWN! That has been true ever since.

Empathy – Lorenza has tremendous empathy for others whether that be a sickly puppy or one of her friends. She commiserates with them and helps them to the best of her ability. She sees others and wants to help, even when she doesn’t feel up to the task herself.

Amazingly strong – Lorenza is strong in body and mind. She knows what she wants and how she’s going to get it, not only for herself but for others.  She is just amazing!!

Ages 1+ to 5 years old

Luke W

Luke W

Lonestar Luke

  • Current age: 2 years old
  • Weight at birth: 3 lbs, 9 oz
  • Weeks gestation: 36 weeks
  • NICU stay: 44 days

 Diagnosis, surgeries, complications?

Luke’s list is bigger than Texas! He began life as an IUGR baby (he didn’t grow well in utero) and had a pelvic kidney. Then, we discovered two holes in his heart (VSD and PDA), a tethered spinal cord and an incomplete skull.  We breathed a sigh of relief, until a nasty villain showed up, necrotizing enterocolitis (NEC). We had an emergency transport to Dell Children’s where Luke underwent emergency bowel surgery and lost 16cm of bowel and his appendix. We owe Luke’s life to his surgeon, neonatologist and an army of prayer warriors.

Why Should Your Child Be Recognized as Preemies of the Year?
Lonestar Luke may have come out tiny for a 36-weeker, but the lessons he taught us have been bigger thanTexas:  patience, trust, surrender, joy and thanksgiving.  There have been many times Luke’s life hung in the balance.  Yet, he’s a tough cowboy and keeps defying the odds and surprising his specialists – all ten of them.  Somehow, he roped his specialists into five surgeries on his belly, spinal cord and ears (one more to go on his brain) and eight hospital stays.  One of his biggest nemesis’ didn’t show his face until surgery number four; he and cephalosporins are arch enemies.  But, once he got a shot of new blood and plasma, his sharpshooting skills were better than ever.  The chuckwagon still doesn’t hold much appeal for him; he’d rather drink his calories than eat them.  He does have two mighty cute cowgirls (speech and occupational therapists) that are working to convince him otherwise.  He’s still a wrangler of few words, but he does have a mighty fine laugh, big blue eyes and a soft spot for animals.  You’d have to ride the range a long time find a tougher cowboy than our Lonestar Luke.

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

Tone of Surprise:  Lonestar Luke is an expert in surprising his enemies, like blood allergies and developmental delays.  Just when they think they’ve corralled him, he makes an escape for greener pastures.

Strong-willed:  Luke’s four siblings don’t offer their cowboy brother any slack.  He has to arm wrestle for his favorite toy, run like the wind when he wins it from his brothers and sweet talk his sisters when they take it away.

Hero:  Our 3lb. 9oz. cowboy came out galloping and has become a hero to his siblings, his parents and his friends.  His brawls have been many, but he comes out stronger each time.

Bobby R

Bobby R

Deuce

  • Current age: 21 months
  • Weight at birth: 1.96 lbs
  • Weeks gestation: 26 weeks
  • NICU Stay: 158 days

Diagnosis, surgeries, complications?

IUGR (should have weighed approx. 3 lbs. at birth); Respiratory Distress Syndrome/Chronic lung disease; Pneumonia; sepsis; GERD; Adrenal insufficiency; ROP stage 2; Respiratory failure; PDA; bilateral inguinal hernia surgery; 3 life threatening infections; “Wimpy White Boy” Syndrome

Why Should Your Child Be Recognized as Preemie of the Year?
What makes on a superhero?  There are a few commonalities that ALL Superheroes share.

Superheroes:

  • Have Alter-Egos
  • Have weaknesses
  • Have Lairs
  • Are Brave

Superman, Iron Man, Deuce, these are all true Superheroes.
Deuce? Who’s that you say?

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

Deuce, also known as Bobby (his alter ego, who’s never caught without his glasses) was born 21 months ago. A micropreemie, Deuce weighed only 721g (1 pound 9 ounces) at birth.  He was severely underdeveloped and vulnerable. Struggling with respiratory distress syndrome, Deuce was placed on a ventilator in a NICU.  Two weeks after his birth, Deuce developed upper lobe pneumonia and went into respiratory failure. He had to be medevac’d to Children’s Hospital in Philadelphia (CHOP) because it was a level IV NICU and Deuce needed maximum support to stave off his weakness – the dreaded Pneumonia Man and his powerful kryptonite like chronic lung disease/respiratory failure.  His chances of surviving the flight, let alone his challenges ahead, were 50/50, at BEST.

Against the odds, Deuce started to (slowly) improve, once he got into his isolette at CHOP (AKA his Lair).  His arch-enemy (Pneumonia Man) tried everything to stop him – resulting in the use of a JET ventilator, used in trying to harm Deuce’s hearing with its helicopteresque decibel levels.  He caused infections befuddling some of the best doctors in the world.  Whenever Deuce started to eat more volume of his mommy’s liquid gold, Pneumonia Man hindered the progress – by dropping Deuce’s Blood Pressure, or causing reflux, and Deuce fought through every obstacle!

Once, the doctors noticed a whistling sound coming from Deuce.  Turned out that Deuce fought so hard that he outgrew the rigid ventilator tube and air was escaping.  They decided to extubate Deuce, much earlier than desired, and let him rest on Si-Pap for 12 hours, with equipment ready to reintubate with correct tubing. Deuce, fearing that the tube was the instrument that Pneumonia Man was using to weaken him, fought with such determination that he never was intubated again.  Well, that’s not 100% true.

Just before Deuce was released from the hospital, he needed hernia surgery.  This was worrisome because he had to be intubated again for surgery.  Before the doctors took him away, Deuce looked at me, winked and gave me a (figurative) fist bump.  I knew all was going to be OK, because he was so resilient. I was proven right as he was extubated when he returned to his lair.  Deuce’s bravery and determination are awe inspiring.  He fought through every obstacle that Pneumonia Man could muster and 158 days after birth, Deuce left his lair and began living as his alter-ego “Bobby”  in the Superhero Relocation/Protection Program (allegedly somewhere in Maryland).

Knock on wood, Deuce hasn’t encountered Pneumonia Man again, but surely he’d be ready to rip off his glasses, jump into his lair (although he probably needs to remodel because he’s a bit bigger than when he used it last) and destroy Pneumonia Man once and for all!

Zephran H

Zephran H

The Big Z

  • Current age: 1 year, 2 weeks
  • Age at birth: 6 lbs 1.7 oz
  • Weeks gestation: 35 weeks
  • NICU stay: 10 days

Diagnosis, surgeries, complications?

Was born with a cleft of the soft palate and jaundice
Why Should Your Child Be Recognized as Preemie of the Year? 

My son was born with a cleft of the soft palate making eating a struggle. He was brave when being poked and prodded daily in the NICU as well as making his first big road trip at under 2 weeks old to see the cleft palate team inCalgary. He is extremely determined and always has been whether it be with learning to eat, holding his head up when he was younger, learning to roll over and standing! He fought like a champ and overcame his eating issues and is now bigger than kids who are older than him and has his cleft repair surgery at the end of October!

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

Brave, Determined, Unique, Intelligent

Camdyn and Cade H

Camdyn and Cade H

One Pound Wonders

  • Current age: 18 months
  • Weight at birth: 1 lb, 2 oz and 1 lb, 8 oz
  • Weeks gestation: 24 weeks
  • NICU stay: 133 days

Diagnosis, surgeries, complications?

Camdyn – PDA ligation, grade II head bleed, collapsed lungs, chronic lung disease, intubated 5 weeks

Cade – PDA ligation, grade II head bleed, pneumothorax (air pocket in lungs), paralyzed vocal cord, g-tube surgery, plagiocephaly, chronic lung disease, vented 5 weeks

Why Should Your Children Be Recognized as Preemie of the Year?
The One Pound Wonders came into this world 16 weeks early weighing a mere 1 lb 2 oz (Camdyn) and 1 lb 8 oz (Cade). From the first day of life, they had to valiantly fight off all the evil NICU villains, those malicious micro-preemie harmers – IVH, PDA, ROP, CLD, and the gang. After 133 days of continuous fighting, they left the NICU battlefield. The One Pound Wonders encountered still more battles. They spent over a year fighting off the evil Feeding Fiend who caused them both to deal with major feeding issues. Cade used his magic g-tube portal to gain superhero strength to eventually conquer this evil enemy. Camdyn, although tiny, showed her fierce superhero powers to overcome this enemy on her own. The One Pound Wonders continue to gain strength and power in their superhero training camps, aka occupational, physical, and speech therapy weekly. They have left the world in awe of their amazing powers – the power to eat, breathe, walk, talk, and most importantly, live after being given only a 30-40% chance of surviving! The One Pound Wonders have proven to the world that miracles exist.

To follow their progress, visit our blog at www.camdyncade.blogspot.com.

To watch a slideshow of their incredible journeys, visit http://www.youtube.com/watch?v=il0NdAfvzQI.

Although it would be a huge honor to be recognized as Preemies of the Year, we are entering the contest in hopes of being recognized with the Thundering Thurston award (entry with the most votes). We need your votes to help us achieve this. The amazing Thundering Thurston was in alliance with our One Pound Wonders in the same NICU. I am honored to be friends with Thurston’s incredible mother. We walked through our NICU journeys together supporting one another along the way. We would be so honored to win the Thundering Thurston award in memory of this amazing baby boy who touched the lives of so many.

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

The One Pound Wonders have demonstrated their superhuman powers with their strength – they had to endure so much pain throughout their NICU journey, their endurance – they work so much harder to accomplish milestones that come easily to others, and their perseverance – they never gave up even though the odds were stacked strongly against them. They will continue to leave the world in awe and wonder at all they will accomplish!

Ages 0 to 1 year old

Chiron W

Chiron W

Scrappy Doo

  • Current age: 9.5 months old
  • Weight at birth: 3 lbs, 1 oz (1402 grams)
  • Weeks Gestation: 29 weeks, 6 days
  • NICU stay: 53 days

Diagnosis, surgeries, complications?

Really just prematurity: respiratory support necessary, A&Bs, and nutritional support. A little hyperbilirubinemia and GERD thrown in to be like big brother and that’s pretty much it. His prematurity was a result of the inter-utero death of his twin sister.

Why Should Your Child Be Recognized as Preemies of the Year?
Chiron could serve as Preemie of the Year not due to his uniqueness, but due to his ordinariness.

Chiron was born a day shy of 30 weeks after almost six weeks of preterm labor and hospital bedrest due to the interutero death of his twin sister, Aurelia.

He suffered nothing unique. He didn’t contract any unusual conditions. He simply was born too early and too small.

He received support to eat, to breathe, to regulate his body temperature and to continue to develop. He exists because of the constant vigilance and care of neonatal staff every day, not just in crisis situations.

Chiron is a living model of what we are all seeking to provide for all preemies and thus I believe serves as a powerful model in the role of Preemie of the Year.

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

The main characteristic that qualifies Chiron to serve as a superhero is his scrappiness. He was nicknamed Scrappy Doo by one of his NICU nurses when he was just a couple weeks old because she said he was always stronger than they anticipated. Yes, he was small, but he could do things that the staff weren’t used to babies of his age and size doing. Sometimes this was good, like breathing just fine when his CPAP came off while they waited for a respiratory tech to be free to fix it rather than requiring bagging or anything. Sometimes it was neutral, like requiring three nurses to hold him for a blood draw while he weighed under four pounds. Sometimes it was negative (from the perspective of a nurse), like when he required nine NG tubes to be placed in the course of one day despite only having eight feeds a day!

Chiron remains scrappy to the day. He has severe reflux and allergic enterocolitis and so still weighs under 15 pounds. Yet, he can require multiple people to hold him down for bloodwork or to place an IV. Yet, he can stand supported by a chair. He is small, but he is scrappy.

I believe it is the superhero way to take something that might be viewed as a weakness, small size, and instead turn it into a strength.

Resilience is the second characteristic that I think supports the designation of Chiron as a superhero. Whether it’s his happy demeanor in dealing with vomiting a couple dozen times a day, adjusting to a NICU nurse changing multiple things in his usual operating procedures at the same time or continuing on as an active, playful boy despite critically low levels of iron, Chiron refuses to succumb to anything we have seen thus far. This ability is perhaps what is necessary to take one from hero to superhero.

Finally, Chiron has the characteristic of a superhero in that he has a sidekick. His older brother has been devoted to him from the day he was born, gently touching the top of Chiron’s head exactly as he was instructed, throughout his entire time in the NICU, at home and later hospital stays. And true to a sidekick relationship, Chiron has reciprocated the relationship with his big brother being the cause of his first smile, his first laugh and his first giggling episode. He derives strength and desire to stretch his limits and do new things to be closer to and more like his brother.

Scrappy Doo he is.

Aiden W

Aiden W

The Mighty Pound

  • Current age: 4 months
  • Weight at birth: 1 lb 10 oz
  • Weeks gestation: 24 weeks, 5 days
  • NICU stay: 109 days

Diagnosis, surgeries, complications?

RDS, Precipitous Delivery, Hypernatremia, Hyperchloremia, Hyperglycemia, Hyerlipidemia, Hyponatremia, Over 15 Blood Transfusions, Anemia of Prematurity, Respiratory Acidosis, Jaundice, Thrombocytosis, PFO, Chronic Lung Disease, Bilateral Grade 2 IVH, Post Hemorrhagic Hydrocephalus, Acute Renal Failure, Oliguria, ROP. Was on ventilator for over a month and is home now (still on oxygen/apnea monitor)

Why Should Your Child Be Recognized as Preemie of the Year?
Of course every preemie parent thinks of their child as “Preemie of the Year” but I think Aiden deserves to be recognized as “Preemie of the Year” because he has overcome what so many people didn’t believe was possible. He was blessed from the moment he was born. They always say a baby born still in the amniotic sac is a blessed baby. That was the case with Aiden and as soon as they broke the sac he started breathing and crying all on his own! It was the best sound in the world since we all know that it was highly possible for him to be born not breathing at all.

Aiden had plenty of good days in the NICU but he had multiple bad days as well. It hurts so bad being a parent and seeing your precious baby lay helpless in an incubator struggling just to breathe. Every time they would diagnose him with a problem he found the strength to overcome it. He didn’t let anything keep him down for long and he kept on proving everyone wrong. He’s our little miracle and he is proof for everyone out there that miracles can happen and that if you are there by your baby’s side in the NICU then they will find the strength to pull through.

Aiden came home the day after his due date (September 5th, 2011) and is up to 9lbs 8oz now. He is still on oxygen and apnea monitor but we are so happy to have him home.

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

Aiden’s first super-hero power would have to be Super-Strength like The Hulk. Without this power there is no way he would have been able to defeat the stay in the NICU. Using his Super-Strength he has beat down his premature lungs, his brain bleed, and his hydrocephalus and is still going strong and ready for whatever comes next!

Aiden’s second super-hero power is Accelerated Healing like Wolverine! He showed us this power in his first few weeks of life. When he was touched or had leads on him they left abrasions and his skin would bleed and bruise because his skin was so thin. Aiden didn’t let this bring him down and he would heal himself very quickly. Now he has a few tiny scars from it but you can barely tell that he ever had to go through such pain.

Last but not least, Aiden’s third super-hero power is Bravery like every super-hero. Aiden has showed us tremendous amount of bravery since the day he was born. He was ready to come into this world and when he got here he showed us the true meaning of how to be brave. He fought hard and didn’t cry at all. He took all the poking like a man which shows me that he is brave enough to do anything is this world and that is why I know he is going to grow up and do big things.

Gabe and Sam W

Gabe and Sam W

The Real Dynamic Duo

  • Current age: 8-1/2 months
  • Weight at birth: 3.4 lbs (Gabe) and 3.6 lbs (Sam)
  • Weeks gestation: 29 weeks, 5 days
  • NICU stay: 58 days

Why Should Your Child Be Recognized as Preemie of the Year?
We were told after the initial “surprise!” of being pregnant with twins, that the pregnancy would, if nothing else, be shorter.  After a really scary day around the 14 week mark, we were put on red alert.  Bed rest followed, and at 27 weeks the boys tried to come early.  After a three hour ambulance ride, and a short stint in the hospital, the arrival was averted.  The boys were still in the oven, hopefully back on schedule.

But they wanted out, and two weeks later, after another 3 hour ambulance ride, and a few hours in the hospital, they were born.

Fortunately, our boys escaped many of the pratfalls that many preemies encounter.  The only reason they stayed in the NICU for so long was because they couldn’t quite keep their oxygen levels up without low-flow oxygen assistance.

Or so we thought…

What we now know is that Gabe and Sam came early to save not just our lives, but the lives of every person on the entire planet.

While in the womb the boys learned of the imminent arrival of evil space hamsters from a small planet many light-years away.  How did they learn this?  It is not for you to know, but they did.

After their birth, Gabe pulled the classic “hey what’s that over there!” trick.  Everyone in the room turned to look of course, because who could believe such a cute little baby would pull one over on them?  Whilst attention was diverted, the boys used their superior mind powers to create exact replicas of themselves, which they left behind in order to go fight the horde of evil space hamsters.

It was a glorious battle, unevenly matched of course because our boys are awesome and it was only evil space hamsters. But the evil space hamsters had numbers on their side, so it took 58 days for Gabe and Sam to defeat the evil space hamsters (yes, I have to keep typing the whole name out).

Afterwards, Gabe and Sam returned to the NICU.  The boys traded places with the clones, and were thankful that the doctors never caught on to the fact that they had been treating clone replicas (because everyone knows that clone replicas can’t breathe well without oxygen assistance, duh…).

They’ve been home over six months now, and along with their older sister, who herself is the basis for the Wonder Woman character (the guy who created that character traveled into the future and saw her of course…) have been fighting evil-doers ever since.

So our boys deserve to be preemie(s) of the year because they saved your lives. How about a little gratitude.  ;D

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

Awesome, Strong, X-ray vision

Site last updated September 12, 2017 @ 11:07 am; This content last updated May 24, 2012 @ 12:55 pm