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

Lexi Lou

Age: 22 months
Weight at Birth: 500 grams
Weeks Gestation: 25 weeks
Days in the NICU: 109 days

My Preemie Power Story:

Our super hero was also our Rainbow baby. After a devastating loss we were ecstatic to find out we were expecting again. At the time I found out, my husband was working over 30hrs away so my son (3) and I decided to surprise daddy at the airport. Unfortunately, only 3 weeks after my husband came home from being away for just over 5 months, I was admitted to the hospital at 24 weeks for dangerously high blood pressure. While admitted we also found out our little rainbow baby also had IUGR . I was told I would be in the hospital for the next 3.5 months until she was born. After only 5 days in the hospital my condition worsened and I developed HELLP Syndrome. I was told to contact my family because they would be taking me in for an emergency C-Section as it was the only option to save both our lives. My daughter was born in November of 2012 rather than March of 2013. Lexi came into this world weighing a mere 500grams, had no respiratory effort and required ventilation. The Doctor told my family that we were very lucky as they don’t often attempt to help babies weighing less than 500grams. During Her first few weeks of life and her 109 day NICU stay, Lexi battled pneumonia, suspected sepsis, Bilateral grade1 IVH , RDS with PIE, BPD, Persistent PDA, mild pulmonary hypertension, stage 2 ROP , Anemia and Apnea to name a few. Our little miracle could only breast feed in the NICU up until 2 days before discharge when she was finally able to master the bottle(Haberman). Finally, 10 days after her actual due date, we got to bring Lexi home ! It was an exciting yet scary day. Lexi had many follow-up appointments after leaving the NICU and she continued to amaze her Doctors and Specialists. Our little preemie decided she could do things according to her actual age rather than her adjusted age and just after her 1st birthday she took her first steps and hasn’t stopped running since. Lexi Looks up to her older brother and he loves her to pieces. I’ll never forget the first time he saw her, he said “she’s so cute” and whispered “grow bigger baby Lexi.” Although I still struggle with PTSD from our rollercoaster of a journey, I have my amazing little miracle to get me through my days. Knowing we can provide hope and inspiration to other families of tiny little miracles helps me get through tougher days. In just over a month Lexi will be turning two and she is the happiest little girl I know. Don’t stop believing in miracles, my daughter is proof they exist!

Super Hero Characteristics:

Alonso Big Cheeks

AlonsoAge: 9 months
Weight at Birth: 500 g
Weeks Gestation: 23
Time spent in the NICU: 154 days

My Preemie Power Story:

The spirit of a superhero fits on a 500g little baby, born at 23 weeks of gestation. Even when he was so small, Alonso decided to comfort his parents and grasped hardly their fingers with his tiny hands to give them a clear message that he only needed time. Then infections began attacking him and doctors almost stopped being optimistic, but one morning good news began to come again and a few days later he was much better. He was 154 days on the NICU, with the help of the great staff of St. David´s Medical Center in Austin, Texas. Alonso has a good sense of humor, amazing healing power, a smile ready for his parents and new reasons to make them proud every day. What makes him a superhero? His ability to recover from intestine perforation, multiple infections, IVH, ROP and BPD, among others, and still be very fine today, gaining weight and progressing with his developmental milestones on time, always in a good mood He’s 9 months old (5 adjusted age today).

Super Hero Characteristics:

Healing power. Every time Alonso was sick during his NICU stay, when the doctors were more worried about his health, suddenly he became better. Incredible sense of humor. Alonso was a little more than 2 pounds when he began smiling hearing the voice of his mother. Now he smiles and laughs all the time, he is a happy baby. Growing factor. Alonso has a great capacity to convert his mother´s milk in growth and health. He was born veri early and very small but before his due date his weight was ok and his feeding abilities progressing.

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:


Mr. Incredible

ChaseAge: 4 years
Weight at Birth: 2lbs 3 ozs
Weeks Gestation: 26
Time spent in the NICU: 92 days

My Preemie Power Story:

Chase was born at 26 weeks, weighing 2lbs 3ozs. At exactly 1 week old we were told he had a massive brain bleed on both sides of his brain. At only 3 weeks of age and less then 3lbs he had his first of many surgeries to have a shunt placed to drain the fluid that was building up. A month later he was diagnosed with a UTI and Meningitis and the shunt was removed immediately. At that moment my life fell apart. I had watched my son work so hard to breath on his own, go from an incubator to an open crib, and to be able to eat from a bottle versus through a tube. He had worked 6 long weeks to get where he was and in a matter of seconds all the work had disappeared and he was being kept alive by a ventilator. That was probably the longest week of my life.

I remember walking into his pod and seeing all the wires and monitors and feeling like we were starting at the beginning again. He proved to me and our entire family that week what a fighter he truly was. Once all the meds kicked in he was able to begin the fight for his life. He fought hard for 7 days and in the end he won. He would not let life beat him. It seemed like one day he still wasn’t improving and then the next he was back to him self and doing everything he was doing just a week before. [Read more…]

Super Averybug

AveryAge: 2 years
Weight at Birth: 1lbs 9 ozs
Weeks Gestation: 24
Time spent in the NICU: 4 months

My Preemie Power Story:

Avery (and twin sister Eliza ) were born at 24 week, 6 days. Each weighed a pound and half. Eli had a fairly easy go of it compared to a lot of preemies, but not Avery. Avery had a grade 3/4 IVH (brain bleed) and we were given the option to stop treatment (as children often with that diagnosis are not more than wheel chair bound, blind and deaf) and let her pass.  We decided to let her keep the fight, and she is a super AVERY!  She had NEC, she has had 9 brain surgeries, one g-tube surgery, pneumonia, and countless trips to the ER after she was out….but today, Avery not only survives, she thrives. She walks with a walker, her hearing is normal (after testing as severe and profound hearing loss for a year and half, now normal? I know!) she loves her musical box, being chased, and “ba ba black sheep.”  She likes to steal her twin sister’s binkie and snuggle up on her cousin Dax.  She is amazing.

Super Hero Characteristics:

Strong, Assertive, Amazing!

Our Miracle Gaby

GabyAge: 4 years
Weight at Birth: 1lbs 5 ozs
Weeks Gestation: 26
Time spent in the NICU: 314 days

My Preemie Power Story:

Our daughter Gaby was born extremely premature due to pre-ruptured membrane first at 14 weeks. Our doctor advised us to be induced because in his professional experience it was too early in our pregnancy for this child to survive. My husband and I agreed to let nature happen and God’s will be done so I was sent home after 2 days in the hospital. A few days later, my doctor called and was shocked to find out that I was still pregnant so I was placed on complete bed rest in the hospital.

An ultrasound was done once a week until 26 weeks when our doctors couldn’t understand or scientifically explain how it was possible for this child to be growing and weighing appropriately with still no measurable amniotic fluid. A C-section was scheduled and we were before warned that our baby may not be fully developed or formed. Upon delivery, Gaby was taken away after just a glimpse into the Neonatal Intensive Care Unit (NICU). She was placed in an isolette, put on a mechanical ventilator, oxygen and all sorts of tubes and wires on her tiny fragile body plus crazy alarms going off every second. [Read more…]

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…]

Nella the Amazing

NellaAge: 1 year
Weight at Birth: 1 lb 6.9 oz
Weeks Gestation: 24 weeks 4 days
Time spent in the NICU: 4-1/2 months

My Preemie Power Story:

Nella was born 4 months early and they don’t know what caused me to go into premature labor. They tried to stop it; nothing worked. She ended up being breech. I had emergency C-Section. I didn’t get to see her before they took her to the NICU. They said if she made it to the NICU, she wouldn’t make it through the night. I got there the next day. She was so tiny, the size of a barbie doll hooked up to a ventilator and on about 10 different medications. She had a pin rose put in at about 2 weeks old due to one of the medications messing with intestine. She had heart surgery at about 3 weeks due to her heart valve not closing. She had a central line put in at 1 month 1 week age. We found out she had a grade 4 bilateral brain bleed and was told never to get my hopes up –  anything and everything could and probably would go wrong with her. I heard her cry when she was 2 months old. I held her when she was 2 1/2 months old. She took her bottles fine from the start, but she was on oxygen. She ended up coming home on oxygen; she had it on her 6 months after she got home. Before we left I was told not to hold my breath, she wouldn’t make it past 10 months of age and if she did she would never walk, crawl, talk, or show emotions. She now crawls backwards says dada walks with help and is always smiling at everyone.

Super Hero Characteristics:

Carefree, curious, intelligent, careful, creative

Tiny Tornado

RyanAge: 5 years
Weight at Birth: 2lbs
Weeks Gestation: 25
Time spent in the NICU: 134 days

My Preemie Power Story:

Just like a tornado, Ryan came storming into our lives with a flurry of unexpected activity. Ryan was born at 25 weeks, weighing in at 2 pounds. He was born with pneumonia, and remained seriously ill for most of the 19 weeks (134 days total) he remained in NICU. In the span of 5 months, Ryan endured more than most do in an entire lifetime and has the scars to prove it! He continues to not only endure life, but to thrive. This “Tiny Tornado” hasn’t slowed down since NICU…you could categorize his intense activity level as an F-5!

Ryan required Ventilator support for two months, C-pap for one month, and oxygen via nasal cannula for the remainder of his NICU stay. He endured daily chest X-rays, labs, blood transfusions, and required photo therapy for several weeks. A moderate PDA and a Grade 1 brain bleed were found, both of which resolved on their own or with medication. He had mild ROP and today wears glasses. He had two Immunoglobulin infusions while in NICU and one as an outpatient, to bolster his weak immune system. [Read more…]