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.

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.

Miracle Girl!

  • AbigailAge: 6
  • Weight at Birth: 2 pounds 14 ounces
  • Weeks Gestation: 29 weeks
  • Time spent in the NICU: 38 days

Super Hero Characteristics: Abby is our strong, mighty over comer. She’s the underdog you root for that will not back down!

My Preemie Power Story:

Abigail means the joy of the father. She’s the gift my husband wanted while the rest of the family wanted a boy, we got the girl he wanted. I was never put as high risk or given a notice of anything wrong with my pregnancy. One day I began heavily bleeding and didn’t stop. Only after one week of bed rest, it was determined that after an infection had spiked there was no choice but to do an emergency c-section. We were told she would be intubated, possibly damaged from the infection but the extent would be unknown until she came out. Well, she came at a whopping 2 pounds 14 oz and was breathing on her own! When the NICU team said she would be in the NICU until her actual due date (10 weeks), Abby would instead leap over every hurdle and only be there for 5.5 weeks. Even at home she continued to leap over hurdles, amazed her pediatrician with how much she grew and was so joyful through it all. Looking at her now, no one would believe she was a preemie. She’s our mighty overcomer who wouldn’t back down, kept fighting to live and she did it with a smile on her face!

 

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!!

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!

Fearless Arianna

AriannaAge: 16 months
Weight at Birth: 2lbs 12oz
Weeks Gestation: 29
Time spent in the NICU: 59 days

My Preemie Power Story:
Preemie Power Story From the very beginning of my pregnancy I was considered a high risk patient. I had chronic hypertension and gestational diabetes and was recommended to see a high risk doctor as well as my regular doctor. About a week and a half before I had Arianna my blood pressure was staying high and so my doctor decided to do some blood work. The next day they called and told me my blood work wasn’t good and that I needed to go to L&D. When I got there I was admitted and a bunch of blood work was done and I was told that some of my numbers were high. I was told I was going to have to start going to the doctor more frequently for testing and was given a steroid shot and sent home. Four days later I had a appointment with my high risk doctor for an ultrasound. They discovered my placenta had ruptured and I was admitted back into the hospital. For 4 days I was monitored and had blood work done. I had developed Pre-eclampsia while in the hospital. The morning my daughter was born they did another ultrasound checking on her and they discovered my placenta had ruptured more. My high risk doctor and the doctor that delivered my daughter told me that they needed to get her out. I was taken over to L&D where they did a emergency c-section. My daughter Arianna was born on May 19, 2013 at 2lbs 12oz and was 15″. I got to see her a few seconds before they took her to the NICU. She was so beautiful and so tiny. I didn’t get to see her until 28 hours later. She was a fighter from the beginning. They discovered she had Patent Ductus Arteriosus and was given medicine and it cleared up after being given the medicine. The first time she was given a bottle she had no issues and finished it. She spent 59 days in the NICU before she finally got to come home. It was so exciting and scary at the same time. Now she is 16 months old and weighs 25lbs and is 31″. She is a fighter and I am so proud of her. Everything that was thrown at her she pushed through it and kept going. She is fearless!

Super Hero Characteristics:
Strong, Fearless and Awesome

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…]

V-man

V-manAge: 5.5 months
Weight at Birth: 1lb 5ozs (587 grams)
Weeks Gestation: 24 weeks 6 days
Time in the NICU: 170 Days

My Preemie Power Story:
After a mostly uneventful pregnancy, I was admitted to the hospital with severe preeclampsia at 22 weeks 6 days. I spent two weeks there on bed rest before being rushed to a c-section due to the baby showing signs of stress. We were warned our baby was so young that we wouldn’t hear him cry. Instead, he made three little cries for us! We should have known then that he was telling us what a little fighter he was going to be.

Victor had a very brief honeymoon period and less than 24 hours later, ended up on the oscillator. Even though I had received steroids, his lungs were very very weak. He received four doses of Survanta, and finally his body slowly started showing some response. Then at one week old, his left lung partially collapsed. Somehow he managed to avoid a chest tube.

With the help of steroids, Victor moved on to the regular ventilator, where he spent the next 8.5 weeks. During that time, we had a few firsts. At 13 days of life, we got to do our first kangaroo care. The following week, he finally got to start taking in breast milk through a gavage tube. I changed his diaper for the first time, and he started wearing clothes.

At just before two months old, once he hit 1500 grams, Victor underwent a PDA ligation. Again we were warned of something — this time that the recovery could be pretty rough. Somehow, he didn’t have any of the expected issues. A week later, he was able to say goodbye to the ventilator and hello to CPAP.

Two weeks after Victor’s PDA surgery, we received word that his eyes were showing Stage 3 ROP plus disease. He would go on to have laser eye surgery the next day.

The week after his eye surgery, the doctor noticed during rounds that Victor’s right leg was swollen. An x-ray confirmed a broken femur. He was fitted for a Pavlik harness to keep his leg stable and scheduled for a follow up x-ray in 3 weeks. Two weeks into it, his breathing had worsened. A chest x-ray showed broken ribs. Thankfully he healed as quickly as predicted, and by his due date, the broken bones — and harness — were behind him.

Victor struggled to move from CPAP to high flow. Once he was able to go to high flow full time, he got stuck at a high rate. Steroids were administered again, and that allowed him to wean down to a lower flow rate.

At one month past his due date, Victor moved to be with the feeder growers. He struggled with bottle feeding, but once the right bottle/nipple combo was introduced, he showed improvement.

Finally, after 24 weeks and 2 days in the NICU, Victor got his first breath of fresh air — via stroller ride home! He is on 1/2 L of oxygen and has many follow up appointments…..but he is home!!!

Super Hero Qualities:
The main super hero qualities my son exhibited were courage and a willingness to fight. Every time we hit a bump in the road, I would be an emotional wreck. Not my little guy. He would take it all in stride, and then at the last minute he’d conquer the “enemy” as if to say “have no fear…”

In true super hero fashion, my son also liked to defy the odds. He wasn’t supposed to cry at birth, but he did. He had a collapsed lung but avoided a chest tube. He was a likely candidate for a tracheostomy, yet he managed to fend that off too.

Lastly, super heroes are charming. That is definitely my son. He had lots of nurses who wanted to take care of him on any given day and night. It is easy for him to bat his beautiful eyes and immediately get his way.

Super Sam

SamAge: 5 months
Weight at Birth: 1 lb 6 oz
Weeks Gestation: 23 weeks
Time spent in the NICU: 118 days

My Preemie Power Story:

Sam was a surprise pregnancy after being told I could not have children. His due date was August 25th. On April 26th at 22 weeks pregnant I went into labor. I was transported to the University of Iowa Hospital and clinics. They were able to stop labor and get me steroids and keep me pregnant for 3 more days. On the 3rd day I developed an infection and he had to come. On April 29th at 245 pm Samuel entered the world. Prior to his birth the NICU staff let me know that if he was not fighting and responsive they would not try to resuscitate him. Luckily he was. His APGAR score at 1 minute was 2 and at 5 minutes was 7. He was born septic with Ecoli and was very sick. We were in Bay 1 the most critical of bays for 3 weeks when he started gaining weight and doing well. They moved him to bay 2 were we only lasted 12 hours before he became septic with staph and back to bay 1 we went. He fought the staph infection and made a recovery. But developed BPD and pneomatoceles in his longs. 2 weeks later we moved to bay 3. He was born at 1 lbs 6 oz . He was 5 weeks hold before the first time I held. He spent 10 weeks on the ventilator with 2 failed extenuation attempts. He has grade 2 IVH brain bleeds, Bronchial pulmonary displasia, had bilateral cataracts (just had surgery for that) and bilateral hydronephrosis (which resolved).

We spent 118 days in the NICU and Sam came home on his due date. He was 7 lbs 6 oz when we came home. He learned to bottle feed immediately suck swallow and breathe seemed to be natural for him. He came home on oxygen and monitors, many medicines and has had 1 readmit to the PICU/Peds for a really nasty UTI. He is a super hero because he shouldn’t still be here, he fought from Day 1, his stubborness, tenacity and fiest drew many nurses to him, and amazed doctors with how well he was doing. He is currently 5 months old and 4 weeks adjusted. He can sit up assisted in a bumbo, he can roll from tummy to back, he reaches for toys and people. He far exceeds any milestone chart for his adjusted age. He is a miracle. We’ve called him Super Sam for many months and the superman logo has been part of his t-shirts and much more. Super Sam is strong and courageous. A true example of Preemie Power!

Super Hero Characteristics:

Strong Courageous Resilient Brave

Site last updated June 19, 2017 @ 11:09 pm