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

Gabby the Great

GabriellaAge: 2 years
Weight at Birth: 1lb 4 ozs
Weeks Gestation: 29 weeks
Time spent in the NICU: 118 days

My Preemie Power Story:

My beautiful daughter was given a 10% chance of survival. She overcame so much during her 118 day NICU stay. She was a fighter all the way. She had all the usual micro preemie problems, including NEC. She had an umbilical hernia, sacral dimple and severe edema. She was on a vent for 51 days, and came home on oxygen.

The NICU days were just unbearable, not knowing if she would live or die. I learned to lean on God more than I ever had before, lots of bedside prayers. The first time I held her, she was well over 2lbs and 1 month old. So small, but yet so mighty. I had never in my life seen a preemie until her. What amazing things the doctors can do these days to keep these tiny super heroes alive!

When my daughter came home she was 5lbs 14ozs. She had a heck of a time eating, and as a result she was a tiny 11lbs at one year old. Despite her small size at 18 months, she learned to crawl, and at her second birthday she walked. She does not eat any food as of yet. We are in Feeding, Speech, Occupation and Physical Therapies. She has AFOs for her feet because her gait is very off. She doesn’t talk yet, but I am hopeful she will soon learn. She has her fair share of troubles still. She has a serious Developmental Delay, she is G tube fed, she amazes me.

We see so many specialists who have no answers as to why she is not progressing very well. I am proud of her everyday, for never quitting. I can’t communicate with her yet, but I know she understands how much I love her. I was not always the best mother, before I got her. I feel like I have been redeemed in my role as a mother caring for her special needs day in and day out. The traumatic birth, and long NICU stay, then all the issues that follow a micro preemie through life, don’t seem so bad, when I see her smile. Other days, when its seems like all hope is fading, I still can just think of how hard she fought just to live, all of the things she had to face as a 1lb infant in this big scary loud cold world when she should have been in my womb.  Well, she is a super hero. A miracle is what I like to refer to her as, OUR FAMILY MIRACLE! I can’t imagine one day of my life without her, thank you, God, for Gabby the Great!

Super Hero Characteristics:

Strength, Fierceness, Persistence

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.

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!)

Our Miracle Gaby

GabyAge: 4 years
Weight at Birth: 1lbs 5 ozs
Weeks Gestation: 26
Time spent in the NICU: 314 days

My Preemie Power Story:

Our daughter Gaby was born extremely premature due to pre-ruptured membrane first at 14 weeks. Our doctor advised us to be induced because in his professional experience it was too early in our pregnancy for this child to survive. My husband and I agreed to let nature happen and God’s will be done so I was sent home after 2 days in the hospital. A few days later, my doctor called and was shocked to find out that I was still pregnant so I was placed on complete bed rest in the hospital.

An ultrasound was done once a week until 26 weeks when our doctors couldn’t understand or scientifically explain how it was possible for this child to be growing and weighing appropriately with still no measurable amniotic fluid. A C-section was scheduled and we were before warned that our baby may not be fully developed or formed. Upon delivery, Gaby was taken away after just a glimpse into the Neonatal Intensive Care Unit (NICU). She was placed in an isolette, put on a mechanical ventilator, oxygen and all sorts of tubes and wires on her tiny fragile body plus crazy alarms going off every second. [Read more…]

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…]

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…]

Layla Superstar!

Layla ~ Super Hero Alias: Layla Superstar!

LaylaAge: 2 months
Weight at birth: 1 lb 9 ozs
Weeks gestation: 23 weeks
Time in the NICU: Still here – 58 days so far

Diagnosis, surgeries, complications?

Chronic Lung Disease, start of ROP, multiple blood transfusions. Still have a few months to go!

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

Layla had a traumatic start.  Her birth was out of the blue.  I didn’t even make it to labor and delivery, she was mostly out before the doctor arrived!  The docs gave her 10% chance of surviving her first 48 hours and she is still fighting for life and winning almost 60 days later!  She has been through so much already but still has the cutest little attitude! She’s feisty and wants to be in this world.  She’s definitely my preemie of the year!  [Read more…]

Gia The Warrior Princess

Gia G. ~ Super Hero Alias: Gia the Warrior Princess

Gia GAge: 6 months
Weight at birth: 1 lb 2 ozs
Weeks gestation: 24 weeks
Time in the NICU: 111 days

Diagnosis, surgeries, complications?

Colonoscopy, Endoscopy, Nissen Fundoplication, G Tube, Removal of two hemangiomas, Endoscopic Balloon Dilation

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

On April 17, 2012 I was admitted to the hospital on complete bed rest due to Premature Rupture of Membranes. The next week, I had an Emergency C-Section due to a Prolapsed Cord. There are NO WORDS to describe how I felt when I was told my baby had a 50/50 chance of survival. When I first saw Gia, I cried. She looked so helpless. I was overwhelmed by breathing machines, tubes, wires, IV’S, the fact that I could see right through her skin, and consent forms for blood transfusions (which she had several of). I quickly became familiar with the words “Bradycardia and Apnea”, which is a nightmare to witness, especially when the baby needs stimulation. The first time she was taken off the ventilator and put on oxygen didn’t go so well. She was getting too tired and was put back on the vent for a few days. The second time was perfect! Everyone thought she was going home on oxygen, but of course she had to prove everyone wrong! On July 19, 2012 she was taken off oxygen and did excellent! She was fed every 3 hours through an NG tube until she slowly learned how to bottle feed. Reflux was a major issue. Prevacid and Zantac was prescribed. On August 14, 2012 (two days after my due date) she was discharged from NICU. As soon as we got home, she went from drinking 60ccs to drinking only 20ccs and sometimes nothing at all. The next day she was admitted into PICU. She had a UTI and was put on antibiotics through IV’S for 7 days. She wasn’t bottle feeding as well, so speech therapists continued working with her. The reflux was getting worse, so the GI doctor recommended Gelmix. It helped! Two weeks later, we were talking about discharge, but that was delayed due to blood in her stool. X-rays and ultra sounds determined that it wasn’t NEC or Intussusception. Cultures came back negative. The doctor then decided to do a colonoscopy and endoscopy, but first she had to have a Frozen Plasma Transfusion because her blood wasn’t clotting and Vitamin K wasn’t working. Results of tests showed an allergic reaction. It was the Gelmix. Rice was recommended as an additive, but the reflux kept getting worse. On October 4, 2012 she had a Nissen Fundoplication, G Tube, and removal of two hemangiomas (one of which had already started oozing). The gut wrenching feeling that I had when Gia was being taken into the OR is beyond words! Surgery went well. Recovery was on target. On October 12, 2012 the post surgery esophagram showed some swelling. Therefore, on October 15, 2012 Endoscopic Balloon Dilation was done to open passage. So far, all is well and it looks like Gia will be home soon tipping the scales at 8 pounds 12 ounces! I can definitely say that my Faith has grown stronger and Gia is the TRUE definition of a MIRACLE BABY!

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

Three words that come to mind when describing Gia are: Fighter, Strong, and Winner. From the time she was born, she fought one battle after another to get to where she is today.  The strength she showed in her survival proves that she is a winner!

What advice do you have for future NICU parents?