Bentley the Brave

  • BentleyAge: 3
  • Weight at Birth: 1 lb. 14 oz.
  • Weeks Gestation: 25
  • Time spent in the NICU: 91 days
  • Super Hero Characteristics Courage, Strength, and Determination

My Preemie Power Story:

Nothing could have prepared me for the birth of my twins at 25 weeks. My daughter Aubrey was born at 1 lb. 4 oz. 11 inches. A minute later my son Bentley was born weighing 1 lb. 14 oz. 13 inches. Four hours after my emergency c section the neonatologist informed me that they had stabilized my son, but there wasn’t much more they could do for my daughter. Nurses strolled me into the NICU where I would say goodbye to my angel and meet my super hero for the very first time. Little did I know that moment would redefine my meaning to life and miracles.

The NICU team warned me that his extreme prematurity would be a long journey filled with one step forward and two steps back. If he survives, he faces the risk of severe health problems and lifelong disabilities. Bentley proved to be a fighter from day one, and continuously defied odds. Milestones became joyous celebrations, no matter how big or small they were. After 91 days of watching my baby grow with the help of an incubator, ventilator, picc line, blood transfusions, PDA, cpap, vapo-therm, nasal cannula, jaundice, feeding tube, brain ultrasounds, eye exams, and countless blood draws, Bentley was able to come home. Within his first 2 years’ home, he endured 3 surgeries and numerous hospital stays. While he has faced several challenges due to his prematurity, he has proven that no fight is too big with his strength.

Having the qualities of a super hero does not mean that he will never face failure or disappointment, it means that he will get up every time the odds are against him and try with all of his might. Bentley may look and act like the average three-year-old, but the resilience, courage, and fighting spirit within him make him my very own superhero. I am forever thankful to have a continuous reminder that miracles really do happen.

Admirable Abigail

  • AbigailAge: 1
  • Weight at Birth: 1lb, 11oz
  • Weeks Gestation: 25
  • Time spent in the NICU: 157 days

Super Hero Characteristics: Strong, Fighting Spirit, Energetic, One of a kind, and Loving

My Preemie Power Story:

If she doesn’t get you with her story, she will get you with her dimpled smile!

Abigail has been flaunting her preemie powers from 21 weeks gestation when mommy suffered from preeclampsia and liver failure. Taken out of the womb at 25 weeks, Admirable Abigail weighed in at one pound eleven ounces. She has had a strong yet rough fight. It took a variety of machines to keep her tiny little body alive as her body grew and developed enough to thrive on her own. 23 days after birth, mom was finally able to hold her baby for the first time; at this point, we bonded, and I knew she was going to change me in many ways; I gained my preemie parent super powers.

After five failed extubations she joined the “trach life” where she depends on a tracheostomy to breathe. After a 157 day slumber party in the NICU, she joined mom and dad at home, and has been thriving ever since! Over the past year, we together, have grown and conquered more than we could have ever hoped! Within these few months since you’ve been home, you’ve gotten rid of equipment they prepared us to have for years to come: feeding tube, oxygen, and your ventilator. I reminisce in memories some would be afraid of, some of things no one will ever understand. The milestones we celebrated were different than the average parent celebrates, but these milestones were more significant; they supported the fact of how far you have come, and how strong of a little girl you are.

The Incredible Quad Squad

  • The Mighty Quad SquadAge: 1 year
  • Weight at Birth: 1lb 9oz, 1lb 7oz, 1lb 5oz, & 1lb 6oz
  • Weeks Gestation: 25 weeks 2 days
  • Time spent in the NICU: 82, 101, 105, & 108 days
  • Super Hero Characteristics Mighty, Courageous, Fearless

My Preemie Story:

These are my amazing quads born at just 25 weeks 2 days gestation: Alyssa, Carter, Miles, & Bentley. They were born weighing 1lb 9oz, 1lb 7oz, 1lb 5oz, and 1lb 6oz. Miles has overcome 3 surgeries in his first year of life including: Bilateral laser eye surgery for Stage 2, Zone 2 Retinopathy of Prematurity with plus disease, bilateral inguinal hernia repairs, and a hypospadias repair. Bentley has also had a hypospadias repair. All have varying stages of chronic lung disease, but have been free of all oxygen support after 2 months of being home and have remained hospital free since their NICU discharge and are happy, healthy babies. I am so proud of how far each has come. There was a time that we didn’t know whether they would all survive. I am so thankful that they not only survived, but continue to thrive daily. They continue to amaze all around them with their progress. They each are meeting all their adjusted milestones and have even caught up in some areas to their actual age!! My babies inspire me every day. They are true fighters and true miracles. I am so blessed to be their mommy!!

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

Bibs

AleenaAge: 5 months
Weight at Birth: 1lb 10 ozs
Weeks Gestation: 25 weeks
Time spent in the NICU: 105 days

My Preemie Power Story:

Aleena surprised us all by jumping into this world at 25 weeks. She almost arrived at 22. She weighed 1lb 10 ozs and was 13.78 inches long. Eyes still fused shut, she was clearly curious and fierce! The moment she opened her eyes we just knew there was power and strength there. She would not stop moving around kicking and waving while awake her physical strength was more than obvious.

The NICU road was not easy for Aleena. She suffered a failed picc line her first week and a collapsed lung resulted in the slow leak. More soon followed. Aspirations that required a 3rd round of being vented. She then contracted an e coli infection in her lungs. Throughout all this, Aleena never appeared sick although the monitors and labs said otherwise. We knew our little one was going to be strong and a bit stubborn. Once she overcame the lung infection she went back onto cpap then sipap and finally oxygen.

Once she hit 34 weeks, the bottle was introduced and she loved it but was quite messy. She always needs a bib or two nearby. She then hit a smoot spot in the NICU road. As feeding went up and she was taken off the feeding tube, reflux showed its ugly face. Aleena, unable to clear her spit up, began to choke numerous times a day. She began meds once reflux was verified and apnea was ruled out. The reflux kept her in the NICU longer.

September 10th after 105 days discharge day was upon us which included a take-home apnea monitor.  Aleena has beem home for a few weeks and has flourished now weighing over 9lbs!! Reflux is still there requiring a large stock of bibs especially with her appetite. Her strength still strong and her stubbornness accompanies it as well. She spends a portion of her busy baby day attempting to crawl but is unable to we give her a little help by letting her kick off on our hands. If not, she lets us know she wants to move! Aleena is more than a highlight to our lives and to our families’ lives. Being a preemie, she is one of many that few experience. She may never really understand her story and what it means to us all but she will hear it numerous times, see the pictures as well as her bibs.

Super Hero Characteristics:

Energetic- she is a busy body always moving wants to be up.

Curious – she likes to be where the action is at to see who is talking and what’s going on.

Determined – she obivously will not be letting her size hold her back she knows what she wants even if it takes a little yell to get our attention she gets it!

Samuel the Resilient

SamuelAge: 19 months
Weight at Birth: 1lb 2 ozs
Weeks Gestation: 25
Time spent in the NICU: 98 days

My Preemie Power Story:

Samuel was born at 25 weeks after my wife was hospitalized with severe preeclampsia with HELLP syndrome. After 48 hours of trying to maintain my wife’s health and to give Samuel more time to cook (with the help of some steroids), Samuel was delivered by means of a c-section at a mighty 1lb 2oz (520 grams). Thus was the harrowing beginning to a story that grew increasingly more joyful as the 98 days of our NICU stay slowly passed. Samuel went on and off of various ventilators while his underdeveloped lungs struggled to catch up. The victories of these days were measured in grams grown, oxygen levels, and the limitation of bradies.

Thankfully, as Samuel grew stronger and larger, his ailments grew smaller. After approximately 30 days of ventilation, Samuel went to c-pap and never looked back. The next 68 days were spent as a grower-feeder just waiting to get big enough to go home. He had no brain bleeds, limited ROP, and a short stint of oxygen support, which stayed with us for 30 days after leaving the NICU. Samuel was a big boy born into a tiny body fighting tenaciously for his body to catch up with his will.

Super Hero Characteristics:

Samuel the Resilient’s first power is his will. From the day he was pulled from the womb, he never showed signs of giving up. Though Samuel’s will is often mistaken for hyperactivity, it was clear to all the nurses that Samuel was here to stay from day one. Samuel also has the fiery power of flirtation. His deep blue eyes and subtle smirk of a smile quickly won over the hearts of all the nurses and doctors within 100 yards of his incubator. To date, women swoon when Samuel flashes his blues and waves his little hands “hello”. Finally, Samuel has the neutralizing power of awkward humor. From passing gas in his incubator to his made crazy dance skills (inherited from mom) to his tendency to laugh in the most inappropriate settings, Samuel has always had the power to make a heavy situation seem a lot lighter to all.

Superman AJ

AJAge: 2 years
Weight at Birth: 1lbs 8 ozs
Weeks Gestation: 25
Time spent in the NICU: 110 days

My Preemie Power Story:

Avery aka AJ and his twin brother, Archer were born on July 21 2011 the day I turned 25 weeks. Archer was born first and let out a little squeal amd tried breathing on his own. AJ had to be resuscitated, he has been a fighter from his very first breath. The boys were sent to the NICU to fight for their lives. After three weeks, AJ’s brother passed away from a blood infection. It was rough sailing from there.

AJ was intubated until he was 6 weeks old and that was the first time mommy got to hold him. He fought off multiple infections which scared his mommy and daddy very much. He had chronic lung disease and multiple blood transfusions. When he was finally able to come home he weighed 5lbs and was still on oxygen and an apnea monitor and had seven different medications. The first year was tough and slow going, but with the help of his Guardian Angel he has pulled through and thrived. He is now a rambunctious two year old with no oxygen or monitors or meds. He is our little Superman

Super Hero Characteristics:

Fighter- He fought for his life from the beginning and has beat all odds
Strong- AJ has scars on his hands, arms, legs amd bellybutton from all the needles he had to endure. Most of his veins were blown. So not much phases him now. He is the toughest boy I know!
Loving- He is so caring and loving. He gives the tightest hugs and always seems to know when to comfort someone.

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

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!

Site last updated May 23, 2017 @ 3:00 pm