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.

Amazing Alexis

AlexisAge: 2 years
Weight at Birth: 1lb 6ozs
Weeks Gestation: 27 weeks
Time in the NICU: 124 days

My Preemie Power Story:

Our Superhero is named Alexis Hope. In true superhero fashion, she has never backed down from a challenge or given in when odds were stacked against her. At 20 weeks into our pregnancy, we were informed that Alexis was not getting enough oxygen and nutrients. Doctors cautioned that her chances of survival were slim. The issue was further complicated by Alexis’ twin brother, who was healthy and thriving. Our decision to deliver the twins at 27 weeks was heartbreaking, as we were uncertain Alexis could survive in her fragile state and were devastated by the potential danger we were be putting her brother in.

Luckily for us, we were the parents of a full-blown superhero. Born at only 1lb 6ozs, Alexis had a long struggle through her first years. Our stay in the NICU was an excruciating 124 days long. While her twin brother seemed to thrive from the start, Alexis’ battle was hard; spending months on a ventilator, facing numerous infection scares, enduring transfusion after transfusion, and having countless feeding issues. Even once welcomed home, she remained hooked up to monitors, oxygen support, and a feeding pump. Her first year was spent visiting specialists and receiving round the clock care. Every gram gained was celebrated and every one lost was grieved. But throughout all of her battles she remained resilient and the source of our strength. Her smiles lighten a room and her boisterous laugh could melt even the toughest exteriors. While typically children learn from their parents, it was clear that we were the ones learning valuable lessons from her. In time, Alexis got stronger and by her second birthday started walking! Today, she is unstoppable. She is still extremely tiny but not to be underestimated. In fact, her size is one of her most valuable secret weapons!

As is the case for every notable Superhero, Alexis has proven to be a tenacious fighter; never to be underestimated. The experts cautioned not have too much hope. Immediately upon getting her prognosis we responded with selecting her middle name: Hope. And she has not disappointed, as we watched her beat the odds time and time and time again. For 2 years, Alexis has taken her own path at her own speed and laughed in the face of predictions. While the journey was long and the ride scary, she is absolutely our hero.

Super hero characteristics:

Tenacious Fighter: Even now you can see Alexis is not your average 2 year old. A micro preemie given those odds simply cannot be. She can be strong-willed, tenacious, stubborn, and fiery but beyond all of the adjectives; she is amazing and inspiring.

Unpredictable: Just when you think our superhero is down and out…KA POW…she rallies to win the fight.

Super Speed: Now that Alexis has started taking her first steps, she is making up for lost time and getting into EVERYTHING and getting there at super human speed. There is no holding her back now!

Super Averybug

AveryAge: 2 years
Weight at Birth: 1lbs 9 ozs
Weeks Gestation: 24
Time spent in the NICU: 4 months

My Preemie Power Story:

Avery (and twin sister Eliza ) were born at 24 week, 6 days. Each weighed a pound and half. Eli had a fairly easy go of it compared to a lot of preemies, but not Avery. Avery had a grade 3/4 IVH (brain bleed) and we were given the option to stop treatment (as children often with that diagnosis are not more than wheel chair bound, blind and deaf) and let her pass.  We decided to let her keep the fight, and she is a super AVERY!  She had NEC, she has had 9 brain surgeries, one g-tube surgery, pneumonia, and countless trips to the ER after she was out….but today, Avery not only survives, she thrives. She walks with a walker, her hearing is normal (after testing as severe and profound hearing loss for a year and half, now normal? I know!) she loves her musical box, being chased, and “ba ba black sheep.”  She likes to steal her twin sister’s binkie and snuggle up on her cousin Dax.  She is amazing.

Super Hero Characteristics:

Strong, Assertive, Amazing!

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.

Superpreemie

JohncarloAge: 17 months
Weight at Birth: 2 lb 6 oz
Weeks Gestation: 28 weeks
Time spent in the NICU: 85 days

My Preemie Power Story:

After suffering two losses, an ectopic (surgery needed and lost a fallopian tube) and a miscarriage, my husband and I found out we were pregnant after the doctor recommended clomid, due to only having one tube. Well…a short time afterwards! Not only were we pregnant, but we were pregnant with TWINS! We went in for our 16 week check and we were finding out the sex! We were so excited! Well that excitement almost immediately turned into fear, sadness, despair..an array of emotions that no expecting mother should ever have to face.

It turns out my cervix was shortening and I had to get an emergency cerclage and go on complete bedrest for the remainder of my pregnancy. Needless to say we were in total shock and disbelief. I had a cerclage placed and stood on my head pretty much. I was monitered weekly and all was going ok, just taking it day by day.

One evening I was sitting on my couch ( laying) and all of a sudden my water broke. It was out of control. After sitting in NYC traffic, having a police car and ambulance intercept us I finally made it to the hospital. I was immediately sent to labor and delivery.  I thought this can’t be happening I am only 27 weeks!!! I was closely watched, received steroids and drugs. My boys were doing ok, the one whose sac broke was hanging in there strong! About a week later I woke up feeling off, something was not right. As it turns out I had fierce infection which was taking over my body. I was immediately rushed back to LND and had an emergceny c section. My husband came up as soon as I said I was feeling off, at 12:00 on May 16th 2012 I gave birth to my two boys Andrew Joseph 2lbs 8 ounces and Johncarlo 2lbs 6 ounces.

The boys did not make a peep. I was in excruciating pain and so unbelievably scared. Both boys were taken to NICU, I couldn’t hold either of them. After fighting for 2 days my son Andrew lost his battle and went to heaven to be his brother’s angel. I was still fighting this fierce infection and was very ill, can you imagine what a 2 lb baby was trying to fight? My other son spent a remaining 85 days in the NICU, we had lots of ups and downs, lots of fear, sleepless nights, crying, praying but most of all strength, I somehow found the strength for my little boy. After 85 days he came home and is now a happy healthy 17 month old boy. I know he has an angel watching him and that is what gets me thru the day! Some people in their lives aren’t able to say that they get to meet their superhero, well I am proud to say that I gave birth to mine!

Super Hero Characteristics:

Strong, Determined, Smart

Gabby the Great

GabriellaAge: 4 months
Weight at Birth: 11 ozs
Weeks Gestation: 22
Time spent in the NICU: still in the NICU

My Preemie Power Story: 

Hi my name is Gabriella some call me GG for Gabby the great. I was born on May 31, 2013 at 22 weeks weighing in at 11 ounces. My younger sister McKenly the Magnificent was born 30 minutes later at 12 ounces. My Mom had the nerve to have her cervix stitched up thinking she was going to hold us in there for nine months but my sister and I had said the devil is a lie get us out of here we have bad guys to fight!

But my sister decided the day after we were born that she would rather be my guardian angel in Heaven. Its nice to have someone upstairs helping you and telling you when to breathe when I forget sometimes.

My mom TuffTiff is one tuff cookie. She is there by me every single day. She has been there when I had to get my ostomy bag put on on her birthday which was also Father’s day because my bowel became perforated. Then I developed NEC. I had to be put into isolation. Yeah, those other babies are jealous of me because I have a nice room to myself and my own Nurse to watch over me. LOL

Then I developed ROP and had to have this needle stuck in my eye. Whew, that hurt but I am a fighter so I beat that too!!

Then I got 2 broken bones. My femur and my arm got broken when I was fighting off those bad guys. But hey, the docs try to say because I am a preemie, it happened. They just dont know how I have been running those bad guys off. lol.

I have finally made it up to 3 pounds and I can wear my super hero costume now. I was getting a little chilly there just wearing my diaper around. Then I hurt my feet so I have to have bandages on them for awhile. I will be glad when I get some shoes. This hero thing is alot of work!

I have 2 big sisters ages 20 and 11, and 1 big brother age 14. I even have a nephew that just turned 1 year old! My Mom and Dad said its been a roller coaster ride watching me beat up these bad guys in the NICU and they will be happy when I come home with them so I can teach them my tricks. They just don’t know that they will be up all night with me telling them all about my adventures. They might think that I am crying but really I will be talking to them. Well I hope you enjoyed my story as much as I have enjoyed telling it to you. Love, Gabby the Great!

Super Hero Characteristics:

A fighter, winner, never gives up!

Littlebit

JulieAge: 15 months
Weight at Birth: 1lb 10oz
Weeks Gestation: 26/5
Time spent in the NICU: 75 days

My Preemie Power Story:

At 24 weeks it was discovered that my bag of water was bulging.  Though placed on bedrest, I went into preterm labor at 26/5 weeks gestation.  It was too far along and I had an emergency c-section.  Julie is the second twin.  Although small, she had a shorter hospital stay than her sister and came home after 75 days about 23 days before my actual due date. She came home at 4 lbs 5 ozs.

We had issues with formula up til February.  In order for her to gain consistent weight, her formula has to be beefed up to 27 calories as well as a calorie supplement duocal.  She started walking at 10 1/2 mths adjusted.  Julie tested above average for her developmental age group and is a very determined little one.  At 15 mths (12 mths adjusted), Julie now weight 15 lbs 2 ozs and is 27 inches.

Super Hero Characteristics:

Although small, she is a very determined little thing.

Chubchub

JenniAge: 15 months
Weight at Birth: 1lb 14oz
Weeks Gestation: 26/5
Time spent in the NICU: 103 days

My Preemie Power Story: 

At 24 weeks my bag of water started bulging. I was placed on bedrest and delivered at 26/5 weeks.  Jenni was the sicker out of the twins.  Jenni had issues with respiratory.  She didn’t tolerate being held and could only handle about 5 mins.  She also had feeding intolerance.  There were times where she was placed on continued feeds.  Her doc also warned that she might be a reflux baby.  Jenni finally got off oxygen in early September.  At first they were talking about releasing the twins together but the night before she had a brady.

Littlebit, her twin, came home and Jenni continued to have bradys.  Doc talked about releasing her on an apnea monitor and I was very nervous because they still didn’t have a diagnosis of why she continued to have them.  About a month into her stay without her sister, she had a major brady about 15 mins after her feed requiring resuscitation. Finally they did a barium swallow confirming mod/sev reflux.  She was also on a fluid limit of 75 mls.  Doc changed her formula to enfamil ar and also no more breastmilk. I was heartbroken because she was actually latching and nursing well.

Jenni finally got fitted for an apnea monitor and came home 2 weeks later.  We did have an episode at home but it was a heart rate dip because she had a fever.  I also invested in a rock and play for her.  You would never know that she is a preemie.  At her 12 mth checkup she is above average for both weight and height.  She is 30+ inches and as of Oct, she weights 24 lbs and 10 ozs.  She is my miracle baby.

Super Hero Characteristics:

Tuff little fighter

Hope With Hannah

HannahAge: 16
Weight at Birth: 17 1/2 oz
Weeks Gestation: 23
Time spent in the NICU: 123 days (4 months)

My Preemie Power Story:

Hannah was born on the first day of her 23rd week weighing 17 1/2 oz. I had been in the hospital for 2 weeks prior to her birth because of 2 failed cerclages due to an incompetent cervix. Hannah was a TWIN. Jacob, her twin brother, despite being 4 oz larger and 2 inches longer- did not survive. On the morning of their birth, the neonatologist told us that if they were born on that day- it would be unethical to resuscitate them because their tissue probably would not be mature enough to survive. Little did we know, Hannah and Jacob had planned to make their arrival that very night. When the neonatologist arrived that night in the operating room, I looked at her through tear stained eyes asking her why she even bothered to come. She said, ‘Well, we will take a look and maybe they will be stronger than we think.’ As we both listened to their strong heart beats throughout the delivery, we both were thinking the same thing- ‘WHY?’ ‘Why do 2 perfectly healthy babies have to be born tonight?’

To no fault of their own, my body could give no more and delivered these angels. Hannah, born first, came out pink and whimpering and feisty. The doctor immediately whisked her away to the NICU nursery. [Read more…]

Booginator

Ember ~ Super Hero Alias: Booginator

BooginatorAge: 18 months
Weight at birth: 2 lb 3 ozs
Weeks gestation: 27 weeks
Time in the NICU: 90 days

Diagnosis, complications, surgeries? 

Loss of blood at birth, N.E.C.(Necrotizing Enterocolitis), U.T.I.(Urinary Tract Infection), eye infection.

Why Should Your Child Be Recognized as Preemie of the Year?

She has overcome so much, even the stereotypical premature baby. Before she was 1 year old, she was caught up to her age group. She excels at everything she does and is completely fearless. She is needless to say “AWESOME”. We live on her angel twin sister through a non-profit organization known as Erin’s Mercy.

[Read more…]

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