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.

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.

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…]

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

Hurricane Hunter

HunterAge: 17 months
Weight at Birth: 2 lbs
Weeks Gestation: 30
Time spent in the NICU: 9 weeks

My Preemie Power Story:

Hunter has been determined to be here from 3 weeks pregnant,I had a terrible pregnancy with constant bleeds, three massive ones, lost his twin and three times we were told he was gone..we even told family and friends but he hung in there for 30 weeks. He was so small, especially at 11 inches long, he was on cpap for 7 weeks and had the typical NICU stay with a hernia surgery at 4lbs. He is now 17 months and, like his name, is a little hurricane, granted his immunity is terrible, but he is a joy and a little celebrity here! I wouldn’t change the last year for anything. He has taught me not to discount things when you are told to give up hope, sometimes things just stick around!!!

Super Hero Characteristics:

Bryson The NICU Warrior is exuberant, there is not a person who meets him who isn’t instantly captivated by his larger than life personality! He is resilient, already having overcome so many obstacles in his short life and gaining strength from each and every obstacle he has faced and continues to face. Most of all, he is inspiring! He gives hope to those who hear his story, he will make you believe that anything is possible!

Super B

BronsonAge: 5 years
Weight at Birth: 2 lbs, 3.4 ounces
Weeks Gestation: 29.5
Time spent in the NICU: 60 days

My Preemie Power Story:

Bronson is the light in our world. He was born 6.5 weeks after I learned that I would be delivering his identical twin brother stillborn. Doctors commented that he was a ’10 pound baby trapped in a 2 pound body.’ He is a fighter and makes this world a happier place. Bronson has the HUGEST imagination and is happiest when in one of his many costumes playing either Army man, astronaut, police officer, or mad scientist.

Super B has been part of our family’s March for Babies team since 2009 and has collectively raised over $10,000 to benefit families and babies that are born too soon. Last year was his first year that he personally went around and collected donations and even created his own video requesting family and friends to donate to the babies in the NICU.

Bronson spent the first 60 days of his life in the Sacred Heart Hospital in Eugene, Oregon. Once able to go home he had two surgeries to correct a few minor setbacks from his prematurity. He is a happy and healthy five year old now.

Bronson’s biggest super power is his ability to make other people laugh. There is never a dull moment in our household and I often find myself answering the phone to one of our family member’s requesting one of his stories. He has the quickest sense of humor and is wise beyond his years.

Our family feels extremely blessed to have Bronson in our lives and we choose to use his experience to educate others and to raise awareness of the importance of good prenatal care and research for the prevention of prematurity. We credit surfactant for the reason that Bronson is a success story. This steroid injection was given to me upon arrival to the hospital and provided Bronson’s lungs the extra boost to be able to breathe on his own. He was never on anything more than the CPAP machine and that was only for the first 8 hours.

We are so thankful for organizations such as Hand To Hold and March of Dimes that raise awareness and create communities for those going through the NICU experience.

Super Hero Characteristics:

Dashingly Handsome, Quick Witted, and Heart of Gold

Nate the Great

NateAge: 11
Weight at Birth: 688 grams
Weeks Gestation: 26 weeks
Time spent in the NICU: 77 days

My Preemie Power Story:

Nate the Great was born January 10, 2002! He was due April 12, 2002 but mommy got sick with pre-eclampsia over Christmas break and they said the only way to save mommy was for Nate to be taken by emergency c-section, 14 weeks early.

Nate was 688 grams at birth, which is 1 lb 8 oz. He was a rockstar from the get go! He completed his first 24 hrs vent free but then began to get tired so he was placed on a vent to rest. Mommy got to hold him at 4 days old and from then on nearly every day was spent doing kangaroo care for hours at a time. [Read more…]

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…]

Scrappy Doo

Chiron W

Chiron W

Chiron W ~ Super Hero Alias: Scrappy Doo

Current age: 9.5 months old
Weight at birth: 3 lbs, 1 oz (1402 grams)
Weeks Gestation: 29 weeks, 6 days
NICU stay: 53 days

Diagnosis, surgeries, complications?

Really just prematurity: respiratory support necessary, A&Bs, and nutritional support. A little hyperbilirubinemia and GERD thrown in to be like big brother and that’s pretty much it. His prematurity was a result of the inter-utero death of his twin sister.

Why Should Your Child Be Recognized as Preemies of the Year?
Chiron could serve as Preemie of the Year not due to his uniqueness, but due to his ordinariness.

Chiron was born a day shy of 30 weeks after almost six weeks of preterm labor and hospital bedrest due to the interutero death of his twin sister, Aurelia.

He suffered nothing unique. He didn’t contract any unusual conditions. He simply was born too early and too small.

He received support to eat, to breathe, to regulate his body temperature and to continue to develop. He exists because of the constant vigilance and care of neonatal staff every day, not just in crisis situations.

Chiron is a living model of what we are all seeking to provide for all preemies and thus I believe serves as a powerful model in the role of Preemie of the Year.

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

The main characteristic that qualifies Chiron to serve as a superhero is his scrappiness. He was nicknamed Scrappy Doo by one of his NICU nurses when he was just a couple weeks old because she said he was always stronger than they anticipated. Yes, he was small, but he could do things that the staff weren’t used to babies of his age and size doing. Sometimes this was good, like breathing just fine when his CPAP came off while they waited for a respiratory tech to be free to fix it rather than requiring bagging or anything. Sometimes it was neutral, like requiring three nurses to hold him for a blood draw while he weighed under four pounds. Sometimes it was negative (from the perspective of a nurse), like when he required nine NG tubes to be placed in the course of one day despite only having eight feeds a day!

Chiron remains scrappy to the day. He has severe reflux and allergic enterocolitis and so still weighs under 15 pounds. Yet, he can require multiple people to hold him down for bloodwork or to place an IV. Yet, he can stand supported by a chair. He is small, but he is scrappy.

I believe it is the superhero way to take something that might be viewed as a weakness, small size, and instead turn it into a strength.

Resilience is the second characteristic that I think supports the designation of Chiron as a superhero. Whether it’s his happy demeanor in dealing with vomiting a couple dozen times a day, adjusting to a NICU nurse changing multiple things in his usual operating procedures at the same time or continuing on as an active, playful boy despite critically low levels of iron, Chiron refuses to succumb to anything we have seen thus far. This ability is perhaps what is necessary to take one from hero to superhero.

Finally, Chiron has the characteristic of a superhero in that he has a sidekick. His older brother has been devoted to him from the day he was born, gently touching the top of Chiron’s head exactly as he was instructed, throughout his entire time in the NICU, at home and later hospital stays. And true to a sidekick relationship, Chiron has reciprocated the relationship with his big brother being the cause of his first smile, his first laugh and his first giggling episode. He derives strength and desire to stretch his limits and do new things to be closer to and more like his brother.

Scrappy Doo he is.

What advice do you have for future NICU parents?

Ask questions, learn and really work to develop autonomy and comfort.

Describe how Hand to Hold’s services are meaningful to you and future families. What kind of support would have helped you most during your journey?

The feeling of not being alone.

Site last updated March 21, 2017 @ 2:17 pm