Leilah the Lovebug

LeilahAge: 20 months
Weight at Birth: 1 lb 12 ounces
Weeks Gestation: 26 weeks 1 day
Time spent in the NICU: 85

My Preemie Power Story:
Arriving into this world weighing a whopping 1 lb 12 oz…. Our miracle would turn out to have the greatest power of them all…. The power of Love…times 2! See, she came at a time when we thought having a child was out of our reach! With determination and faith in God, we went for it! So imagine our shock when we found out we were expecting identical twins! But like the previous paths to parenthood we traveled, this would not be ordinary.

Through highs and lows we found out we would lose one of our daughters either at birth or shortly there after. And at 24 weeks we feared this was happening sooner rather than later! However our angel baby knew her sister needed to make her mark on this world so held on and gave us two more weeks in the womb. Finally at 26 weeks, we gave birth to Abigail our angel in heaven and Leilah our Lovebug here on earth! Abigail knew our hearts needed unconditional love and before passing to heaven transferred all her love to Leilah so that our hearts would never be empty….hence the power of love…times 2!!!! The power of her love through her laugh, words, and cries, she keeps our love tank full from now until eternity!

Super Hero Characteristics:
The sweetest, happiest, determined, tenacious little girl we know!

Dynamic Duo: Outstanding Owen & Bionic Bryce

Owen and BryceAge: 9 months
Weight at Birth: 3lbs 13oz and 3lbs
Weeks Gestation: 30w 5d
Time spent in the NICU: 6 weeks

My Preemie Power Story:

We found out I was pregnant with twins at our first doctor’s appointment in August 2013, I was 8 weeks along. We were so excited and shocked! My husband left for a 6 month deployment to Afghanistan a short 3 weeks later. My due date was March 25th so we had high-hopes he would make it home in time to see the birth of our identical twin boys, but knew he would miss most of my pregnancy. My pregnancy was 100% “by-the-book”; I experienced every symptom, perfect vitals and weight gain, and the babies were growing and healthy as could be. So when my water broke at 30 weeks I was in complete shock, this wasn’t in the book and my husband was still half way around the world.

I arrived at the hospital where I was told, “You probably just wet yourself, its common. There’s no way you are in labor.” A quick check revealed I was 2cm dilated and contracting every 2 minutes. I was quickly put in a room where I was hooked to every monitor imaginable and told I would be on strict hospital bed-rest until the babies were born. They began magnesium sulfate to slow my labor and steroid shots to help develop the boys’ lungs in preparation for a premature birth. The following 2 days were very scary, the magnesium sulfate was working against my body and I was having a lot of trouble breathing. Around 7am on January 13th we were told that Baby B’s heart rate was dropping and that it was time for an emergency C-section, I was 30 weeks 5 days.

At 7:55 we welcomed Owen into the world at 3lbs 13oz followed by Bryce, weighing 3lbs. Owen and Bryce spent a total of 6 weeks in the NICU. Bryce was intubated for a few days, they were both on C-Pap, then Bi-Pap, then high-flow oxygen that was slowly weaned down over the weeks. Both boys had jaundice so were under the bili lights for a few days, caffeine for apnea of prematurity, and had multiple blood transfusions for anemia.

At 3 weeks both boys developed NEC. Owen had developed stage 2 medical NEC so was flown to a bigger hospital an hour, 3 hours by car. Bryce remained at stage 1 so they kept him in our hometown. I now had a baby where we lived, one 3 hours away, and a husband in Afghanistan. We utilized Red Cross to get my husband home at this point. Owen was on antibiotics for 10 days before being flown back to our hometown where they boys were discharged 4 days later. Our family was finally together for the first time! Since being discharged the boys have been doing wonderful! They are both gaining weight, eating great, and meeting their milestones for their adjusted age. We currently have ECI therapy once a week. I love our superheroes so much and love sharing their story of bravery with everyone!

Super Hero Characteristics:
Bravery- Owen and Bryce have been through more than most grown adults have been through medically and continue to amaze the world around them!

Strength- Owen and Bryce are super strong! They have the strength to overcome anything that comes their way.

Power- Owen and Bryce have the power to make everyone around them smile!

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

Duo of Resilience

Lola and ParkerAge: 6 months
Weight at Birth: 3 lbs 9 oz and 4 lbs 7 oz
Weeks Gestation: 34
Time spent in the NICU: month

My Preemie Power Story:

We were scared out of our minds. We already had such a tramatic pregnancy, but hearing, “It’s time,” being 34 weeks, it tested our ability to stay calm. Parker couldn’t breathe. They took my little man away immediately to intubate him. I just heard him gasping and I just kept yelling for them to tell me if he was ok.

Then my little girl. She came out screaming like a crazy person and I knew immediately she would be just fine. She too had to be swept away immediately, but I knew she was a fighter.

They weren’t sure if Parker would survive and convinced us to give him a shot to help him breathe, a decision I’m glad we made. They both had jaundice, breathing problems and feeding could only be done through tubes. Lola of course hated this and would yank her oxygen and feeding tube out every chance she got. [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…]

Search and Destroy

David and JonathanAge: 20 months
Weight at Birth: 1lb 12oz
Weeks Gestation: 25 weeks, 1 day
Time spent in the NICU: David – 116 days, Jonathan – 131 days.

My Preemie Power Story:

David and Jonathan are Super Heroes because they are here, healthy and doing better then anyone ever imagine.  Born at 25 weeks 1 day their birth parents didn’t believe they would be able to care for one sick and/or potentially special needs child yet alone two.  So they made the hardest choice any parent has to and put them up for adoption.   By this point the boys were 2 months old and had been struggling to live in the NICU; alone, no mommy or daddy by their side. That is when we heard about our boys and stepped up to adopt them.  When we met our boys for the first time, they were still so tiny and fragile and we still had weeks ahead of us in the NICU.  We helped teach the boys how to nipple feed and watched as setbacks happened.  We also struggled through ROP surgery and looked at potential loss of eye sight in both boys.  Jonathan was on a ventilator for nearly 3 months and came home on oxygen.  David struggled with feeding and digestion because formula just wasn’t his thing.  The doctors told us at discharge we were most likely taking home one baby with moderate to severe CP and one baby with mild CP.  Today is a different story; our boys are small, tipping the scales at 18lbs, but strong mighty fighters, who have proven everyone wrong.  They are walking, self-feeding, and exploring their world.   They have been released from physical therapy.  They don’t have one issue with vision, not even glasses.  They fought when they had no one fighting for them and they have beaten every odd since and that is what makes them Super Heroes.  You can read more about our family and story at http://www.compoundliving.com/

Super Hero Characteristics:

David: Strong, Fighter, Lover

Jonathan: Independent, Strong, Fighter

Mighty Beans

Elizabeth & AdrianaAge: 14 months
Weight at Birth: 2.2lbs and 2.4lbs
Weeks Gestation: 30
Time spent in the NICU: 5-1/2 weeks

My Preemie Power Story:

My identical twins were born at 30 weeks from an emergency c-section. When they were born, both girls were supposed to receive cpap. Elizabeth refused to wear it. She would stop breathing and after 4 attempts the doctors said forget it. She needed no oxygen or assistance breathing. Adriana needed the cpap with forced room air no oxygen. After 3 days, she needed no assistance. My daughters were also the first in the state to receive donor breast milk since my supply wasn’t enough. While they were in NICU, I was alone in my experience. They graduated each NICU milestone quicker than anticipated. They were sent home ahead of schedule. The girls are the most amazing preemies I have ever seen. They had to overcome the obstacles and fight from the very beginning. I didn’t know whether they were going to survive. I had very little support since no one in my family has ever been in this situation. I joined NICU groups and even went to support groups, so I could learn and find out my options. From my experience in the NICU, I was able to provide a friend with information that I had learned from my experience that helped her. She often came to me for advice. I’m glad that I could help her. I hope to someday continue my education to work in a NICU as a nurse to help out babies as mine were helped in their time there.

Super Hero Characteristics:

Super strength, super stamina, kind hearted, fast healing

Super Beauties

Skye & LaceyAge: 11 months
Weight at Birth: 3lb 7oz and 3lb 5oz
Weeks Gestation: 34
Time spent in the NICU: skye 3 weeks, lacey 6 weeks

My Preemie Power Story: 

Delivered by planned emergency c section at 34 weeks, the Super Beauties had to have regular scans from 25 weeks due to IUGR and low fluid had to have steroid injections three or four times. They made it to 34 weeks then they were delivered. Skye did well, but Lacey got NEC at two days and was transferred to a different hospital. So I had one twin in one hospital and one in another. Lacey was very ill but she got better and she came home just before xmas to be back with her sister at home. Now they are the most gorgeous little happy girls anyone could wish for 🙂 Skye is now 17lb6 and Lacey is 16lb15. They have come so far.

Super Hero Characteristics:

Determined , beautiful and clever

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:

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!

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!

Tiny N Tuff

Kenady and KastynAge: Kastyn 20 months/Kenady forever 14 months
Weight at Birth: Kastyn 2lbs/Kenady 1lb 15oz
Weeks Gestation: 26 weeks
Time spent in the NICU: Kastyn 136 days/Kenady 151 days

My Preemie Power Story:

On the last day of January in 2012, Tiny and Tuff completed their journey from the planet Babyland to the foreign and strange world known as the NICU. Tiny, a 1.15 lb baby girl and Tuff, a 2lb baby boy, completed their journey much quicker than most by arriving just 26 weeks after their Mommy had undergone an in vitro procedure in Dallas Texas.

Mommy had been on bed rest until it came time for the super hero duo to make their debut. Carried by helicopter 165 miles to the University of Arkansas of Medical Sciences, Mommy delivered two precious bundles, knowing very little about how much they would change the world. [Read more…]