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.

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

Queen of the NICU

CassieAge: 22 months
Weight at Birth: 650 gms
Weeks Gestation: 26 weeks
Time spent in the NICU: 94 days

My Preemie Power Story:

Cassie was born early due to preeclampsia. We were warned that they weren’t sure they had a tube small enough to fit down her throat. They got in the tube in one attempt. She has been such a fighter! She gained her nickname queen of the Nicu because she never liked to share attention. If there was a baby in distress she would also decide to misbehave. She had a lot of trouble with her lungs and it resulted in her needing to come home on oxygen and heart apnea monitors. While in the Nicu she had 12 blood transfusions, a spinal tap, a picc line, numerous X-rays, her kidneys stopped working for a week and she was so swollen that she was twice the size she should have been. She had to be under 3 billiruben lights at one point. She was on caffeine for a while and blood pressure meds. She fought so hard and her attitude kept her with us during those first two months when we weren’t sure if we were even allowed to tell people she was doing well on any given day. I was so scared that if I said she was doing ok then something awful would happen. I remember one day I called to get an update (about 2 months into our stay) and the nurse told me “she is having a good day” it was the first time they didn’t use guarded words to risk getting our hopes up. It was the first time I allowed myself to use those same words in giving others an update. She came home 4 days before her due date. A Nicu’d motto was the preemie dictates everything. The tiny fighter tells everyone what they are able to handle. Cassie took those sentiments and ran with them. When she was born she stole our hearts and showed us what she was able to handle. They say that most people never get to meet their hero, and I gave birth to mine.

Super Hero Characteristics:

Her goal seems to be to make everyone smile. She will grab your arm and kiss it. She is daring and willing to run around with the older kids. She is brave, even when she isn’t feeling well she never complains.

The Blue-Eyed Snuggler

ColtAge: 20 months
Weight at Birth: 2lbs 1 oz
Weeks Gestation: 28
Time spent in the NICU: 97 days

My Preemie Power Story:

You never expect to be told that if you continue to carry your unborn child, one or both of you won’t survive. After all isn’t a mother’s body made to keep her growing baby safe? That’s what we were told on January 30, 2012 when I found out I had severe preeclampsia. I had to deliver immediately, at 28 weeks 0 days, to give Colt the best chance for survival. Colt Matthew came into this world a tiny 2 pounds 1 ounce (the NICU weighed him in at 1 pound 10 ounces) and 13 inches long. I didn’t get to see him before they took him away, but I heard him cry. I knew that meant that he was breathing! 

The following day I finally got to see my little angel, and all I could do was cry and tell him how sorry I was that this was happening to him. I felt like I failed him. I was supposed to keep him safe, and now his safety was no longer up to me but the doctors and nurses. The beginning weeks were a testimony to Colt’s will to survive. He fought through blood infections, blood transfusions, a spinal tap, a central line, and more x-rays and blood draws than you could imagine. 

On Easter Sunday, after months of praying and waiting, the doctor told us that if all goes well Colt will be home by the end of the week. That was before we got the phone call saying that Colt had stopped eating, was struggling to breathe, and they had no idea why. He was put back on oxygen and was moved to the respiratory therapy floor. The light at the end of the tunnel was gone. After many failed attempts to help Colt breathe, they decided to scope his throat. A twenty minute procedure turned into an hour of patiently waiting. The doctor finally came in and handed us a picture of Colt’s throat. He had a rapidly growing birthmark, called a hemangioma, growing in his throat right above his lungs. It was already blocking over 90% of his airway and would have continued to grow had they not found it. Had Colt been born full term and not twelve weeks early the hemangioma would have blocked his entire airway, and he would have never been able to take his first breath. 

A week later, after 97 days in the NICU, we brought our 8 pound 2 ounce son home…on my 30th birthday! I see the life and love in his eyes today and thank God every day for miracles. Colt is the reason I believe. 

Super Hero Characteristics:

Determined, Inspirational, Compassionate


AlexanderAge: 4-1/2 months
Weight at Birth: 4 lbs 11oz
Weeks Gestation: 33
Time spent in the NICU: 24 days

My Preemie Power Story:

Alexander is a kid who defied all odds. I was told 12 years ago I would not have children, and he is here today. I didn’t even find out I was pregnant until 6 months along! We found out in April and I began the litany of tests, vitamins, appointment after appointment and other precautions. I knew I was a high risk candidate from previously having two miscarriages before the diagnosis.

Alexander always made it very clear he was a boy, and the first ultrasound proved he had all the (ahem) parts necessary for a baby. It was very scary, finding out at 27 weeks that in a few months there would be a new baby in the world. Little did I know the time left wouldn’t be counted in months, but in weeks. [Read more…]

Scholastic Silas

SilasAge: 2 years
Weight at Birth: 4 lbs 11 oz
Weeks Gestation: 32
Time spent in the NICU: 18 days

My Preemie Power Story:

I’ll never forget being 27 weeks pregnant and taking an official tour of the NICU, “just in case” I delivered early. I rubbed hand sanitizer on my palms as my husband wheeled me down the hall with a nurse. BEEP…BEEP. SWOOSH. “It’s so noisy, I whispered to my husband who was putting on a brave face. We entered an empty room where the babies are placed right after delivery. That made it all real. I fought back tears as I pictured a tiny little boy, laying there. MY tiny little boy.

Due to severe pre eclampsia, I had an emergency c section on Easter Day 2011. He came weighing 4lbs 11oz. I saw him, kissed the softest cheeks ever and they took him away. I had to wait 24 hours before I could lay eyes on him again and hold him. I broke down in tears when I saw those IV’s and heart monitors. “This is not what I planned, baby. I’m sorry. I love you.” Is what I whispered into his ear. Suddenly all those mommy-cliches came true. My mission and purpose was to do everything within my power to get him home. I had so many melt downs between his birth and the day I was discharged. I had to leave my baby behind indefinitely, how could my heart tolerate that?

I was in the hospital from 8am to 11pm for his entire stay. I pumped fresh breast milk for him, changed his diapers, chatted with him and held him close. He was doing great! Getting bigger and bigger, stronger and stronger. My first Mother’s Day was in the NICU. I cried when they came by and took our picture for a special project. It wasn’t how I imagined my first Mother’s Day would be but I was so happy that the staff made it special. 18 days after his birth he passed all of his tests and was cleared. He came home and has been thriving ever since! He’ll always be my super hero!

Super Hero Characteristics:

Resilient, sympathetic and loyal

Surprise Miracle Aimee

AimeeAge: 13 months
Weight at Birth: 2lbs 2 oz, 960g
Weeks Gestation: 29+5
Time spent in the NICU: 62 days total between 2 hospitals

My Preemie Power Story:

We only found out that I was pregnant at 22 weeks, and didn’t know I was that far along until I went for an ultrasound at 24 weeks. We were very surprised, but baby seemed to be doing good and weighed 1 pound 6 ounces on the ultrasound. The next 4 weeks, I finished up college and was starting to prepare for baby’s arrival. When I was 28 weeks pregnant, we were in a car accident where I was brought to the hospital to check on the baby. I was told I had to stay for 4 hours to make sure everything was fine. The baby was doing great, but they took blood work and discovered I had pre-eclampsia (and possible hellp syndrome). My blood pressure was very high. They informed me that they were going to be sending me to a hospital with a NICU and gave me my first dose of steroids. I was told they were going to try and push it 48 hours to let the steroids work, but they weren’t sure that would be possible.

A very long and stressful 8 days later, they were doing an ultrasound and found out I also had placental abruption. My daughter was born by emergency c-section 2 days later weighing only 2 pounds 2 ounces. She was IUGR. We got to see her for a minute before they took her away to the NICU. I wasn’t allowed out of bed to see her until the next day due to the magnesium they were giving me through my IV. When she was 24 hours old, I finally got to see her. She was gorgeous, but very tiny. I put my hand in the isolette, and she grabbed it almost immediately. She was doing great, but was on CPAP. The nurse said she liked the little “puff” of air. She was on CPAP for 3 weeks, mostly on room air. She spent 26 days in the NICU and then got transferred to the special care nursery at my local hospital. The level 2 nursery was full and they needed the room in level 3.

She spent another 36 days there where she learned to eat and grow. She came home 10 days before my due date weighing 5 pounds 3 ounces.

Aimee has an atrial septal defect (ASD). She has had many cardiology appointments, and we finally do not have to go back until she is 3 unless she starts to have problems.

She had low sodium for the first 6-7 months of her life. She had 3x daily sodium supplements and bi-weekly blood sodium checks.

At 13 months old, she is still small for her age but she is doing great. She’s 18 pounds and 28 inches long.

This is Aimee’s blog.

Super Hero Characteristics:

Determined – She is determined to not let her prematurity hold her back. She tries so hard to keep up with full term babies her age.

Strength – Aimee has proven to be very strong. She has been through a lot and is still a very happy little girl.

Intelligent – She is a very smart little girl. She learns fast and loves to learn new words.

Bryson the NICU Warrior

BrysonAge: 11 months
Weight at Birth: 1lb 14oz
Weeks Gestation: 28
Time spent in the NICU: 72 days

My Preemie Power Story:

My husband and I knew that having a baby would be life changing, but we had NO clue what that really meant for us. Around 25 weeks pregnant I started having horrible swelling but everyone told me it was “normal”, and I listened. By week 28, I was starting to get worried so with a little reading and researching, I decided I had better check my BP. It was sky high, and that night I went straight to the ER. My husband who was 10 hours away at work, drove through the night to get to me, fearing what was in store for us. I was diagnosed with severe acute Preeclampsia/HELLP. They kept me pregnant for three days and then my son was delivered via emergency c-section at 28 weeks. It was a whirlwind. For 72 long days, my husband, myself and most of all our son, endured the ups and downs brought on by extreme prematurity and being in the NICU. My son experienced, risk of IVH, being SGA, Hypoglycemia, Hyperbilirubinemia of Prematurity, Apnea of Prematurity, RDS, Stage 2 ROP, Sepsis, PDA, two blood transfusions, Staph Epi infection, possible NEC and so many other complications. I could write all the details, but instead I’d rather write some good things this experience has given meI. It has taught me to cherish every minute with my son and loved ones. It has taught me to be strong, even when it seems like being strong is impossible. It has taught me patience, trust and hope. For so long I felt nothing but anguish over our journey, but here we are almost a year later, with a happy, healthy, little boy. My son overcame all odds, he is a preemie, a NICU warrior and I am a proud preemie mom!

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!

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…]

Jenna Bean

Jenna ~ Super Hero Alias: Jenna Bean

JennaAge: 2-1/2 years
Weight at birth: 3 lb 3 ozs
Weeks gestation: 32 weeks
Time in the NICU: 64 days

Diagnosis, surgeries, complications?

Mom had preeclampsia. Jenna was on a ventilator and feeding tube. Bili light

Why Should Your Children Be Recognized as Preemies of the Year?

Jenna Joyce is our little light, afterall, her name means heaven. The day of my 32 week ultrasound I am looking at my beautiful daughter on the screen with my mom beside me. The next minute my whole world would be changed. The Dr. told me my blood pressure was high and I needed to go to the hospital. I had protein in my urine as well. She kept saying ” preeclampsia”, a term I had never heard before but would quickly learn to hate. Preeclampsia would soon be my enemy. As the hours passed my condition worsened. The nurse told me I would stay in the hospital until I delivered, then it was a few days before you deliver, then it was you’re having the baby tonight.  My speech was slurring, I was confused. The doctor was worried I could have a stroke and of course my daughter was in danger. The doctor gave me steroids to help mature Jenna’s little lungs and I was taken to the operating room.This is not how it was supposed to be. I went through enough pain already! Please be a dream! I entered that room scared and feeling hopeless as I could not protect her. The Dr. looked at me and said ” Jess, she might not cry.” My heart broke.  That night at 8:01 P.M, Jenna Joyce was born via emergency c-section weighing 3 lbs 3 oz. I kissed her little face and the NICU team took her away. I felt hopeless not being able to help my daughter. I would visit her every single day and waited 2 weeks before holding my daughter. I knew Jenna was strong. I knew I was going to come out stronger because of this. I kept reminding myself as the days went by that “Your daughter is alive, she’s just a little tiny. God’s little warrior.” My husband and I laughed and cried and celebrated her milestones. We decorated her little isolerte with Christmas lights. She was the only baby in the NICU for Christmas. My husband’s wedding band fit around her tiny wrist. Jenna came home in January and thrived every day after. Today she is a happy and healthy 2-1/2 year old. I know she has angels with her. Sometimes when she smiles she looks so much like her great grandma. She has brought my family so much joy and happiness. She is smart, and kind, and caring. She smiles every single day and tells me stories. As I tuck her in each night I always tell her ” Goodnight my little warrior.” I am such a proud mom and so proud of how far she has come. Jenna never lets anything stop her. She is my little angel, my little warrior, my everything,  my Jenna Bean.  And keeping her body temperature up all by herself! She truly is my little miracle! 🙂

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

Brave, strong, fearless.

What advice do you have for future NICU parents?

To stay strong. Never ever lose hope and never lose your faith. Sing, read, talk to your preemie every single day.