Bat Girl

MacieAge: 6 months
Weight at Birth: 2 pounds 3 ounces
Weeks Gestation: 28 weeks
Time spent in the NICU: 60 days

My Preemie Power Story:
Macie was born march 10 2014 her due date was May 27 2014. She showed us her strength and power everyday and continues to show us as sh progresses through her developments. She is little but she is mighty. She is now six months and weights about 12 pounds. Her cousin is batman and he calls his little cousin Macie Bat girl!! That’s her super hero name!!

Super Hero Characteristics:

Strong, fierce, and fiesty

Hero of Hope

Kali LinnAge: 5
Weight at Birth: 2 lbs 10 oz
Weeks Gestation: 28
Time spent in the NICU: 3 months

Preemie Power Story:

Hero of Hope, otherwise known as Kali Linn, came into the world bringing hope just as soon as she took that long awaited first breath.
Her premature birth took our little family of three by extreme surprise. Her dad, a US Marine, was at training hours away, while her brother, age 2 at the time, and I were sitting down for lunch when something went terribly wrong. Placental abruption, PROM, and cord prolapse all happened one afternoon while I was just 28 weeks along. Two days of labor all came to a call of code blue and me giving up on the fact that she would be born alive. Kali came into the world as I was going unconscious, and hope came as I heard that one little cry.

Her NICU stay had many ups and downs like many NICU journeys of preemies her gestation and she came home three months later.
These past five years has brought many diagnosis including the far too familiar cerebral palsy which causes pain in her legs and a gross motor delay. She’s had therapy of many kinds since just a few months old and that has given her to many tools and has shaped the thriving five year old she is today. She has had several surgeries and is followed by a handful of specialists. With each milestone we see her hope and with each bad day we feel her hope.

Prematurity is her story and one that we have chosen to make her aware of. She knows her story, she has seen her pictures, and has met the nurses who gave so much of themselves to her. This year for her fifth birthday, we chose to spread her hope a little further. Her compassion for others, especially babies, just shines as we have asked for gifts not for her this year but for the families and babies currently in her NICU. Kali herself will be giving hope and showing families what five years later looks like. Kali Linn is Hope to prematurity, to others, to her family, and to her friends. She’s compassionate and resilient. Her strength through this journey makes me, her mom, proud.

Prematurity is never a condition any mother envisions when they take on motherhood. Kali Linn however, represents the Hope that shines in the many faces of prematurity.

Super Hero Characteristics: Powerful, Resilient, Powerful

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

Super Peanut

EmilyAge: 1 year
Weight at Birth: 2lbs 15 ozs
Weeks Gestation: 28
Time spent in the NICU: 6 weeks

My Preemie Power Story:

Our peanut was born at 28 weeks on 10/25/12. She came into this world weighing 2lbs 15oz. She was a fighter from the beginning. At birth she had a high white blood count and was started on the same 4 antibiotics I was given while in labor. They did a spinal tap on her at only 1 day old. Which sadly they weren’t able to get any spinal fluid. She had a grade 2 bleed on the right side of her brain. She was receiving breathing assistance from c-pap. Her Bilirubin numbers were high and I remember her little body was so red. And just when everything seemed to hopeless she really showed her strength. At 4 days old she was taken off c-pap and just put on a nasal cannula, at 8 days old she was taken off oxygen all together. By 10 days the grade 2 bleed on her brain was gone and her white cell counts had started to drop into the normal range and her bilirubin levels were getting normal. She was a fighter and she wanted everyone to know it. From this point on our NICU stay was pretty simple, it was getting her to fatten up and learn how to bottle feed. The next 5 weeks flew by pretty quick. Emily was discharged at 34 weeks, weighing 4lbs 7oz. Now she is a healthy and smart 1 year old(well almost will be in 11 days) 21lbs who is just the happiest baby I’ve ever seen. She loves to eat and will try anything. We are so lucky!!

I am very very grateful for how things turned out for my peanut. I do know that things could’ve been so different for us. That is why I say she is a Super Peanut. It was her strength and her fight and her will to live that kept her going.

Super Hero Characteristics:

Strength
Love
Faith

The DOMinator

DominicAge: 6 months
Weight at Birth: 1lb 13 ozs
Weeks Gestation: 28
Time spent in the NICU: 91 days

My Preemie Power Story:

I had chronic high blood pressure and an incompetent cervix held up by a cerclage. The doctor always had a difficult time performing the ultrasounds because Dominic wouldn’t stay still. He was already playing hide-and-go-seek. But I loved it! Dominic was telling me he was okay. Medication was no longer helping. The doctor gave me the weekend to get my stuff together before “turning myself in.” I was put on bed rest and constant monitoring, at The Woman’s Hospital of Texas in Houston.

The first time Dominic’s heart rate dropped, frantic nurses came in, flipped me to the side and put the oxygen mask on me. I was given Magnesium and Celeston. Then he would stabilize. This happened three times. It was a rollercoaster of emotions worrying about Dominic’s survival inside or outside of the womb. But he still kicked like crazy, telling me I’m ready to play.” The nurses were constantly in my room adjusting the belts to keep him monitored. My husband was so proud of his misbehavior.

The Doctor detected breathing-movement. She also saw Reverse-End Diastolic Flow and Dominic wasn’t growing. [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

Paisley the a-Mae-zing!

PaisleyAge: 4 months
Weight at Birth: 2lbs 8ozs
Weeks Gestation: 28
Time spent in the NICU: 47 days

My Preemie Power Story:

Miss Paisley has been a super hero from the start. Born 12 weeks early, she clearly has super speed! since the beginning, she has always been willing to fight; repeatedly attempting to rip her nasal cannula from her face. One story even tells of a battle with her Ng Tube which resulted in her being showered in breast milk!

Paisley the a-Mae-zing has also demonstrated rare healing abilities. She left the NICU 5.5 weeks before her due date with only an Apnea monitor as a precautionary measure. By her due date she was able to “cut the cord” on that monstrosity and was also cleared by any specialists she was seeing, including her arch-nemeses: Eye Doctor and Head Ultrasound Tech.

She has had various side kicks throughout her short career. Beginning with Neonatalogist – who intubated her at birth, giving her a blast of surfactant. This was perhaps how she received her amazing strength! She quickly teamed up with NICU Nurses in a battle for independence. This battle was won 1 week after Independence Day when she was discharged from the hospital. Thereafter her partner in crime has been Big Brother. Their only crime: cuteness.

Of course, she has displayed weaknesses as any true super hero does. Hers being milk and snuggle time!

However, her weaknesses have developed into powers such as super growth – Paisley has tripled her weight in just 3 months by feeding on demand! And she can debilitate any onlooker with a smile that will melt even the coldest of hearts!

Paisley the a-Mae-zing is truly that-amazing! She has brought immense worry and joy into our lives. And as the stress has faded into bliss we have watched our preemie soar from hospital to home and straight into our hearts where we will keep her always!

Super Hero Characteristics:

Charming, fierce, resilient and one-of-a-kind!

Elijah Almighty

ElijahAge: 17 months
Weight at Birth: 1lb 8oz
Weeks Gestation: 28
Time spent in the NICU: 10 months

My Preemie Power Story: 

Well nothing could have prepared our family for this incredible journey we have traveled with our little miracle Elijah.  He was brought into this world very unexpectedly at 28 weeks and weighing 1lb 8oz!  We had no idea what a NICU was and how to navigate this new reality.

We knew Elijah was going to be in the NICU longer than most but never expected it to be almost a year.  Elijah fought through so many hurdles, infections, and surgeries.  Each time we would set a goal for a going home date and it would come and pass with no end in sight.

Then we were given the devastating news that Elijah would most likely never be making it home.  So we prepared our bucket list and just enjoyed our precious boy.  Well Elijah had other plans and proved to all of us that he was a fighter.  Over a few months our amazing NICU team prepared us to care for Elijah.  He would be going home with a tracheostomy, on a ventilator, and with a g-tube.  After 314 days in the NICU we finally got to bring our sweet boy home.  The first month was extremely challenging and even had some setbacks and re-hospitalizations.  It took some time but we are definitely so happy in our “new normal”, and proud to say we have been hospital free for 6 months.  Elijah has taught our family so much and we are blessed to watch him thrive and grow.

Super Hero Characteristics:

Always happy & smiling, strength, and hope

Jack Attack

JackAge: 7 months
Weight at Birth: 2 lb 9 oz
Weeks Gestation: 28+4
Time spent in the NICU: 10 weeks

My Preemie Power Story:

Mama was diagnosed with severe pre-eclampsia at 27+6 weeks, and was told she would be on bed rest until at least 34 weeks. Then her kidneys started failing. She was airlifted to a hospital with room for Jack, then prepped for an emergency c-section. Jack was born in the wee hours of March 25, with incredible APGAR scores of 8 and 9! (http://becoming-we.blogspot.ca/2013/03/jack-cameron.html) He spent 70 days in the NICU (where he was referred to daily as “feisty”) as a feeder and a grower, then came home on oxygen 11 days before his due date. He is the apple, orange, and banana of his mom’s, dad’s, and grandparents’ eyes. He’s doing so well. At 5 months adjusted, 7 actual he is wearing 6-9 month clothes, sleeping through the night, eating chunks of frozen everything, and is even on the growth charts for actual age! Every single day is an adventure with this guy.

Super Hero Characteristics:

Feisty, fiery, fun.

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!

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