Remarkable Reese

  • ReeseAge: 10 months
  • Weight at Birth: 1 pound, 6 ounces
  • Weeks Gestation: 23
  • Time spent in the NICU: 97 days

Super Hero Characteristics: Resilient, Strong, Brave, Energetic, Tenacious

My Preemie Power Story:

I went in for my 24 week appointment at 23 weeks, 3 days. My physician found my cervix to be opened and immediately sent me to the closest hospital with a NICU. I was given magnesium for 3 days, but Reese was ready to enter the world the day after Thanksgiving last year at just 23 weeks, 6 days gestation. She weighed 630 grams. She spent 97 days in the NICU but still came home 15 days before my due date. We had our share of problems while in the NICU, PDA ligation, 7 transfusions, mild ROP. She came home on oxygen for just a few weeks and has not looked back! She is growing well and is meeting or ahead of all of her milestones for her adjusted age of 6 months. She is such a fighter and we couldn’t be more proud to be her parents.

General Grant

GrantAge: 19
Weight at Birth: 1 lb. 14 oz
Weeks Gestation: 26 1/2
Time spent in the NICU: 12 weeks

My Preemie Power Story:

Preemie Power Story General Grant was a fighter from the start. Born at just over 26 weeks, this “wimpy white boy” was given a 50/50 chance of making it by the doctors. If he made it, they said he would face many challenges. His first challenge was to have the nurses tie him down so he would not extubate himself. He spent 7 weeks on a ventilator. They had trouble keeping his blood pressure steady. We were called 3 times to the hospital because they thought things looked bleak and they did not know if he would make it through the night. He was fed through a tube for 2 months. Then came the ROP study. They found that his retinopathy looked pretty bad, and even with laser and cryosurgery, maybe a 50% chance that he would not see. He had this surgery when he was just under 3 pounds. [Read more…]

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!

The Great Juju Bee

JulianAge: 5 months
Weight at Birth: 1 lb 5 oz
Weeks Gestation: 23
Time spent in the NICU: 155 days

My Preemie Power Story:

Julian (Juju Bee’s civilian name) was eager to get out of mommy’s tummy and bring joy to the world. There was an infection in mom’s placenta and he knew he had to get out of there fast. At 22 weeks and 6 days, Mom’s water broke, and Julian was on his way out in a super hero pose – one arm up, hand in a fist. He was only 1 lb 5 oz so the doctors wanted to save his strength, and they did a c section to get him out quickly, and The Great Juju Bee was born at 23 weeks exactly.

The doctors didn’t think he would make it through the night, but The Great Juju Bee started his signature move of proving every body wrong. The very next week he underwent emergency surgery for a perforated bowel, and again the doctors didn’t think he would make it – a DNR was signed at the doctor’s recommendation, and a pastor brought in. But Julian knew that he had to be in this world to give people hope and inspiration! He made it through and kept going uphill ever since. Every single doctor and nurse tells mommy and daddy how they are so amazed at Julian – for those first couple of months they didn’t think he would make it. But, as his favorite doctor said, “That’s typical Julian. We give a room and gloom diagnosis, and he goes and proves us wrong, smiling and happy the whole time.”

After 155 days in the NICU, an ROP diagnosis, a VP shunt, and a bilateral inguinal hernia repair, Julian was able to come home to Mommy and Daddy. He continues to build his strength and inspire the world with his bravery – a little superhero!

Super Hero Characteristics:

Super strength, amazing resilience, the power to inspire and give hope, and the ability to bring joy and love to all who come into contact with him!

Aubrey the Feisty

Age: 1.98Aubrey
Weight at Birth: 1lb, 9oz
Weeks Gestation: 24
Time spent in the NICU: 4 months

Preemie Power Story:

All attempts to keep Aubrey where she should have stayed for nine months were unsuccessful. After a very scary day and night of contractions and steroid shots and feeling like I was being lit on fire from doses of magnesium sulfate, Aubrey deemed it time to be born at only 24 weeks 3 days gestation and weighing 1 pound, 9 ounces. Not me, her daddy, grandparents, nor her many doctors and nurses could convince her it was a bad idea. The first sign she was a fighter was her birth time—3:57a.m. A .357 Magnum, that one (daddy is a police officer, so he made that connection). The second sign was the three tiny cries she gave upon being thrust into the world way too early. The third sign was when she was taken off the ventilator just two days after she was born; the nurses were amazed and immediately dubbed her “feisty.” The fact that she swatted at their hands and kick boxed in the isolette may have had something to do with the nickname as well.

Aubrey’s major problem was getting her brain to tell her lungs what to do and when to do it, and then getting her lungs to listen. I watched her turn blue and purple so many times that I lost count. I could “hear” her monitor alarming while at home in the shower. She took the tube feedings fine if the tube was in her intestine; the doctors tried it into her stomach and milk shot out of her nose repeatedly until the tube was moved down again. So, we would let her grow more and try again, and again it wouldn’t work. After being in one NICU for 3 months and the doctors there running out of ideas, we were moved to a second NICU at a nearby teaching hospital. I guess that made Aubrey realize she had to shape up, because a week after our move she was taking milk in her stomach and another week after that and she was off of extra oxygen all together.

Aubrey endured the many preemie eye exams like a trooper, but she ended up having laser surgery to correct retinopathy of prematurity in both eyes. She went through having scopes down her throat twice, and marched right along through the barrage of swallow tests, x-rays, brain scans, and everything else a preemie has to endure. After 122 days in two different NICUs, we brought her home with a feeding tube and an apnea monitor. She finally got the hang of the bottle about 5 weeks after coming home and hasn’t looked back. She’s almost two now, and she’s absolutely perfect (I’m not biased at all, honest!). When we go back and visit our NICU nurses and doctors that took such good care of us, they still talk about how feisty she was even at two pounds. I can’t wait to see what Aubrey the Feisty has in store for us in the coming years.

Super Hero Characteristics:

Super strength! At 1 pound, 9 ounces, Aubrey was throwing around a board strapped to her arm to keep her IV lines from kinking. She gave the nurses kick boxing lessons. Even though she was 16 weeks early, she was only on a ventilator for a total of four days. Superman’s got nothin’ on her.

X-ray vision! At less than two pounds, her piercing gaze could shoot right through you; it still can. I couldn’t leave the NICU while her eyes were open, following me, drawing me back with those tractor-beams.

Mind control! This tiny human had many people at her beck and call, 24 hours a day. She controlled my thoughts at all times. She told educated doctors and nurses what to do. One blip of her monitor and people were set into motion to do her bidding. She was a baby super genius totally in control.

Alonso Big Cheeks

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

My Preemie Power Story:

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

Super Hero Characteristics:

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

Jonny McDash

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

My Preemie Power Story:

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

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

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

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

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

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

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

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

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

Super Hero Characteristics

Primary Superpowers:

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

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

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…]

Mighty Mouse

KaitlynAge: 11 months
Weight at Birth: 1 lb 1 oz
Weeks Gestation: 26
Time spent in the NICU: 91 days

My Preemie Power Story:

On November 11, 2012, I gave birth to twin girls, Kaitlyn and Kristen. I was 26 weeks gestation when I had a placental abruption and learned that my daughters had to be delivered immediately via c-section. I had no idea what the future held or what the fate of my two daughters would be. When I awoke from surgery my husband told me that he saw the babies as they were brought up to the NICU. He told me they were both really small, but they were both moving and we had to have hope.

Kaitlyn (Baby A) weighed 1lb 1 oz, 12.5 inches and Kristen (Baby B) weighed 1lb 14oz, 13 inches. Both girls were immediately placed on ventilators and we learned that while both girls were in extremely critical condition, Kristen was suffering from pulmonary hypertension and every minute would count. [Read more…]