Amazing Nate

NateAge: 1
Weight at Birth: 2 pounds 12 ounces
Weeks Gestation: 32 weeks 5 days
Time spent in the NICU: 28 days

My Preemie Power Story:

At 28 weeks gestation my water broke. I was admitted to the hospital where I stayed 33 days on bed rest until I went into labor. Despite all we were told little Nathan never needed help breathing and was a feeder and grower while he stayed in the NICU. He gained weight steadly and showed everyone what he was made of. When the doctors thought he was too small for something or were about to change something in his routine its like he knew and would prove them wrong by taking all of his bottles, maintaining his body temp outside the isolette or even nursing with no issues. Just shy of 4 pounds he was removed from the isolette proving to his doctors that he was ready to go home by maintaining his temperature with no assistance and taking all his bottles in record time. 28 days after he was born and at 4 pounds and 1 ounce, Nathan left the hospital and hasn’t looked back.

Super Hero Characteristics:
Strong because he’s proved everyone wrong about what he can do. Curious because he’s always looking around and getting into stuff. Charming because his little smile melts everyone’s heart.

Addy Bear

AddyAge: 1 year
Weight at Birth: 3lbs 12 ozs
Weeks Gestation: 32
Time spent in the NICU: 48 days

My Preemie Power Story:

Addison was born with hydrocephalus at 32 weeks by an emergency C-section. From day 1, she never failed to amaze with constant weight gain. Less than 3 days and she didn’t need any assistance other than a feeding tube. At about 1 ½ months old they decided Addison would need a shunt. Addison was struggling trying to eat from a bottle. The first day after surgery Addison was able to eat a full feeding from a bottle. Addison was released from the NICU to go home just 3 days after surgery. Addison has continued to go to OT/PT as an outpatient to ensure she isn’t having trouble hitting her milestones. They are amazed at how well she is doing with crawling/walking etc. They do not have to compare her with her adjusted age group because she is doing things just like any other 12 month old. Addison is a miracle to us. All preemies are “Preemie of the Year” they all have to overcome so much. 

Super Hero Characteristics:

Overachiever, amazing, determined fighter

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

The Tank

JaydenAge: 3 years
Weight at Birth: 3lb 6oz
Weeks Gestation: 32 weeks 6 days
Time spent in the NICU: 25 days

My Preemie Power Story:

Our son Jayden was born prematurely when my wife’s umbilical artery flow became diastolic, meaning it was starting and stopping. After our son’s heart rate dropped dangerously low for a few minutes, doctors decided to operate immediately. While we were terrified about his early start, he personifies what a superhero is by all he has already overcome. Jayden spent 25 days in the NICU, learning to breath, feed, and maintain body temperature. Outside of a grade 1 brain bleed that resolved itself, his time spent in the NICU was relatively quiet.

While we weren’t face with tough decisions during his NICU stay, we certainly have faced adversity as he has blossomed into a toddler. By the time he turned two, it became quite evident he wasn’t as far along with speech as he should be. An evaluation confirmed our concerns, and we immediately began Early Intervention services.

Once again, our son has shown us on a daily basis how “Mighty” he is. He still has a way to go in regards to communication, but the progress he has made through EI and more recently his preschool is most promising. His perseverance could give hope to the biggest of doubters.

One thing is for sure: He loves to take risks and seek adventure. I can’t even count the amount of “take my breath away” moments we have had at the playground. He is a thrill junkie without question! Even through the biggest of boo-boos I cannot think of a time he didn’t get over an injury with seconds and go back about his business, as if nothing happened.

That mindset he has earned him the nickname “The Tank.”

Super Hero Characteristics:

Atomic Elbows and Knee’s: Even for a big fella, (I’m 6’6″ and 280 lbs) he has repeatedly brought me to my knees with and elbow or knee to the ribs/face/gut. He is strong beyond his years. To say I’m concerned about his strength three years from now would be an understatement.

Blue Eyes That Could Melt The Coldest Of Hearts: I always told my wife she had the most beautiful blue eyes I’d ever seen. That was, until my son was born. Seriously though, it’s the first thing people notice about him, and they always rave about them.

A Laugh That Lights Up The Darkest Rooms: When Jayden gets giggly, it’s about a wonderful a feeling I have ever experienced in my life. He has been known to get an entire room laughing with him. Seeing that joy in his face is the best part of being a parent.

CaroLION

Caroline ~ Super Hero Alias: CaroLION

CarolineAge: 13 months
Weight at birth: 3 lb 14 ozs
Weeks gestation: 32 weeks
Time in the NICU: 90 days

Diagnosis, complications, surgeries? 

When Caroline was born she had Apgar scores of 9 and seemed to be perfectly healthy. We felt so lucky to have dodged any preemie complications. On day 5 of life however, Caroline stopped breathing. She was eventually diagnosed with diabetes insipidus, and later, hypothyroidism and adrenal insufficiency (still waiting to see if any other hormones are missing). An MRI showed midline brain anomalies. Once medication was started, she continued to have problems eating/digesting her food. During our third month (and after being treated for several infections, including NEC) it was discovered that Caroline had a stricture in her sigmoid colon that needed to be removed. Once that was done, she could eat and grow!

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

Caroline will always be my “Preemie of the Year” but I think she should represent Hand to Hold this year because she can bring attention to all of the babies born early with rare health conditions. During her 90-day NICU stay in two different hospitals, she was a medical mystery who kept the doctors and specialists on their toes. Although she had a rough start, she has been home for almost 11 months and is growing and thriving. The medical and therapy appointments keep us busy but Caroline never complains (perhaps this comes form her power of superhuman endurance!).

[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.

Atomic Alivia

Alivia ~ Super Hero Alias: Atomic Alivia

AliviaAge: 1 month
Weight at birth: 5 lb 14.7 ozs
Weeks gestation: 32 weeks
Time in the NICU: 18 days

Diagnosis, complications, surgeries? 

heart rate drops, 2 spinal lumbar punctures, low calcium level, apnea spells, jaundice

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

Alivia arrived into this world at 32 weeks because of my heart. I have dilated cardiomyopathy and wasn’t able to carry her to full term. When I was 14 weeks pregnant with her, every doctor I saw told me to abort her. I couldn’t see myself ending her life just so I could live mine because to me, my life would end if she wasn’t in it. I already have two little boys so it was a hard decision to make knowing that there might be a chance that my boys would have to go through this world without their mother. Some of my family were angry because I chose to continue the pregnancy because they thought I wasn’t being fair to my boys. I prayed and kept the faith that God would pull me through. Since no doctor near me would treat me, I was sent to Barnes Jewish Hospital in St Louis. I was also assigned a cardiologist who kept a close eye on me as I carried Alivia as far as I could. At 24 weeks, I went into preterm labor so they gave me steroids to help develop her lungs. Thankfully, they were able to stop the labor. At 32 weeks, they found that my heart was only working at 30% so the doctors felt they had to give me a second round of steroids and deliver Alivia. She was born the day before my 29th birthday. She was perfect. When everybody else had told me to abort her, I kept my faith in God and He rewarded me with a beautiful and fairly healthy baby girl. [Read more…]

Courageous Cayden

Cayden ~ Super Hero Alias: Courageous Cayden

CaydenAge: 4 months
Weight at birth: 3 lb 5 ozs
Weeks gestation: 32 weeks
Time in the NICU: Still in the NICU

Diagnosis, complications, surgeries? 

Blood transfusion, heart surgery, phemina twice, in isolation, lung problems

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

Cayden should be preemie of the year because he has to go through all this when he didn’t do anything wrong. He has had it rough from the start. I couldn’t be by his side the first four days. He is a 32 weeker and been on the vent for 2 1/2 months and now he has been on a cpap since then. He deserves everything in the world. I wish I could give him the world but sadly I can’t. He is a brave boy who is a sweetheart. It seems the world is out to get him. He deserves everything in the world.

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

The first four days after he was born, I couldn’t be by his side. I had him at a different hospital and had to be transported and he is so brave. He is strong because when he was first born they had to take blood from him every eight hours then that resulted in a blood transfusion and then a few days after that he had heart surgery. He’s smart, loving, caring. He is my little fighter, for everything he has been though, he still finds time to smile.

What advice do you have for future NICU parents?

Stay Strong, It’s hard but think of the time you get to spend with your baby when they come out. Then you will be able to make more memories.

Super Diva Makayla

Makayla ~ Super Hero Alias: Super Diva Makayla

MakaylaAge: 4 months
Weight at birth: 4.5 lbs
Weeks gestation: 32 weeks
Time in the NICU: 32 days

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

Our daughter was born at 32 weeks weighing in at an amazing 4.5lbs. Not only was she 8 weeks early, she made her grand appearance breached (bum first with both legs wrapped around her head). With the incredible delivery, she faced some challenges in her near future. With all the doctors and nurses amazement, Makayla was breathing on her own did not require much medical assistance. She stayed in the NICU for the longest 32 days of our lives. We will never forget that day we found our she was coming home… With no long term problems. Makayla is now a happy and healthy 4 month old weighing in at a respectful 14lbs. She shows no signs of developmental delays and thrives for life and new discoveries. She enjoys most all activities with her 3 year old big brother. She is quite the diva and let’s us know when, how, and what she wants at all times. We are truly blessed for what we have and went though. She is an amazing baby girl and we have already learned so much from her.

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

Diva, fighter, and intense personality

Brave Brenna

Brenna ~ Super Hero Alias: Brave Brenna

Brenna GAge: 8 years old
Weight at birth: 2 lb 13 ozs
Weeks gestation: 32 weeks
Time in the NICU: 29 days

Diagnosis, complications, surgeries? 

Cysts on brain, feeding issues, developmental delay, G-tube, VP shunt, learning difficulties, PDD-NOS, ADHD, hypoglycemia, hypotonia, numerous spinal taps, 2 shunt revisions, Behavioral problems, sensory issues

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

Brenna is a beautiful 8 year old girl who has fought since day 1 of her life. Despite many medical and non-medical hardships, she keeps trying to move forward and live a “typical” life. Brenna’s typical life includes many doctor’s appointments, therapies, consultations, testings and frustrations and it would be wonderful to give her something positive and fun and show her that life does have some fun and magic in it.

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

Strong, beautiful, brave, artistic (she LOVES to sing and dance), determined, sweet

What advice do you have for future NICU parents?

Take breaks when you can, accept help, don’t try and do it all yourself, be proactive and find all the therapies and assistance you can to help your child. It is hard, but it makes all of the difference.

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