Lexi Lou

Lexi
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:
FEISTY, STRONG, FIERCE

Smiley Gayily

Avigayil

Age: 6 months
Weight at Birth: 1.6 kilos
Weeks Gestation: 33
Time spent in the NICU: 101 days

My Preemie Power Story:
At 23 weeks the doctors thought I was about to give birth, but after a high risk pregnancy that included surgery and months of hospitalization, Avigayil hung in for an amazing 10 more weeks and was born by c-section at 33 weeks. Right from the start there were surprises. She had IUGR and severe RDS. She was not breathing at birth and it took a few hours for the doctors to stabilize her. During her NICU stay she was diagnosed with severe BPD, GERD, Pulmonary Hypertension, Osteoporosis, FTT and anemia, among a host of other more common preemie problems. She had 3 blood transfusions, was on nitric oxide for 2 weeks and was intubated for 3 weeks.

From the beginning our little red head was a fighter. While sedated on morphine she none the less managed to extubate herself 3 times. Even though she was and still is confronting challenges that no one expected, she is a very happy and social baby.

While in the NICU became the first preemie to use a newly approved machine that would allow her to go home on Vapotherm. It is now in use in the NICU and at homes here in Israel. She is honored to be part of such an amazing breakthrough for preemies and their parents.

Now at 6 months of age she is home and on oxygen and a monitor 24 hours a day. She has an NG tube for feeds with a kangaroo pump and inhalations every 4 hours.

Despite her hard life so far and having to fight for every breath, Avigayil treats every person who comes near to a giant smile with her generally sunny disposition. She loves people and makes friends wherever she goes.

We hope that she keeps that love of people and love of life with her always as she teaches us every day just how valuable life can be.

Super Hero Characteristics:

Avigayil can fly into the hearts of every one around her faster than a speeding bullet. With the incredible ability to charm anyone she can even make the most serious and experienced doctors and nurses smile and coo.

She has amazing agility seen in her talent of being able to remove any tube or cord placed on/in her within 5 minutes, even under sedation!

Mind Control! She brightens peoples day and has touched the lives of people she has never even met as they keep up with her story online.

She goes on every day with her super strength and determination. It is that quality that is helping her parents and 4 brothers and sisters to make it through each day.

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…]

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…]

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!

Courageous Coffey

Charlie ~ Super Hero Alias: Courageous Coffey & Charming Charlie

CharlieAge: 2 months
Weight at birth: 1 lb 5.9 ozs
Weeks gestation: 24 weeks
Time in the NICU: 57+ days

Diagnosis, complications, surgeries?

Mom shares: Madilyn passed away due to infection at 12 days old. Charlie has been diagnosed with BPD and RDS, he has a grade 3 brain bleed and a Resolving PDA. He also has stage 0 ROP in zone 2 of both eyes.

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

Dad shares: I think my son should be preemie of the year because he has fought off MRSA, he fought off a staph infection, he has dealt with his sister passing away (which I know he knows that happened) he is fighting the odds everyday and he is getting stronger everyday which in turn makes me stronger for him everyday and to really think his sisters are both looking out for him everyday of his life and he just gives me so much to be here and be happy now. He is getting bigger and stronger everyday and he is proving the doctors and nurses wrong every time they want to try and put a time frame or limit on something he just goes and proves them wrong. And it is so amazing at how much he has grown since he was born. I just really think that he should be recognized as preemie of the year because he is a very extraordinary little boy and he will live on in life to do great things in his lifetime.

Mom shares: Charlie has been through so much in the past 8 weeks, being born a micro-preemie, and weighing only 1lb 5.9 oz at birth, losing his twin sister, Madilyn 12 days after birth, grade 3 brain bleed, and 2 staph infections, and pnemonia, he has also faced several blood transfusions, and is now 3lbs 2oz and off the vent! He is now on CPAP, eating 25 mLs every 3 hours. So far the nurses have told us he might not make it and now he is thriving! He still needs the help of the hospital and can’t quite get the hang of getting his temperature stable, but he is doing it!

[Read more…]

The Electrifying Tiny Hiney

Ryan ~ Super Hero Alias: The Electrifying Tiny Hiney

RyanAge: 4 years
Weight at birth: 1 lb 15.5 ozs
Weeks gestation: 25 weeks
Time in the NICU: 134 days

Diagnosis, complications, surgeries? 

Ryan was born with a pneumonia infection which required daily chest X-Rays and labs.  Due to the amount of blood drawn, he required several blood transfusions.  He remained on ventilator support for  two months, on C-pap for another month, and nasal cannula for the remainder of his NICU stay.  He became septic due to multiple pneumonia infections, and suffered from Respiratory Distress Syndrome. He had high Bilirubin levels and remained under the photo therapy lights for a couple of weeks.   A moderate PDA and a Grade 1 brain bleed were found, both of which resolved on their own or with medication.  Diuretics were necessary, due to fluid overload.   He had mild ROP and today wears glasses.  He had two Immunoglobulin infusions while in NICU and one as an outpatient, to help bolster his weak immune system.  After returning home, Ryan required oxygen during feedings, was medicated for GERD, and was considered for a PEG tube at 8 months.  Ryan developed Torticollis and Plagiocephaly and wore a cranial remolding helmet for 5 months.  He also wore orthotic shoe inserts to assist with toe walking and low tone.  Ryan has Bronchopulmonary Dysplasia/Chronic Lung Disease and asthma controlled with daily medication and inhalers.  He received multiple therapies and attended Early Childhood Special Education classes until age four.

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

Our Tiny Hiney is quite “electrifying” and not easily forgotten. Ryan’s BIG brown eyes are typically the first thing people notice, but it doesn’t take long before they realize he has a passion for anything mechanical and electrical…especially vacuums. With his first word being “light”, it is no wonder he is asking Santa for a new vacuum, a power strip, and an extension cord for Christmas, or that he named his pet fish Dyson. We have joked that his name should have been Cord. He has an inquisitive nature and a methodical and analytical mind, often taking a scientific approach to most everything he sets his mind to. We attribute this, in part, to his being “raised” by machines for the first 5 months of his life.

Ryan was born at 25 weeks, due to preterm labor. He was born with a pneumonia infection which caused his already compromised lung function to be even more critical. He remained in NICU for 19 weeks…134 days total. Ryan endured more than most do in an entire lifetime, in the span of 5 months…and has the scars to prove it! He continues to not only endure life, but to thrive. He was on the move even in NICU (the nurses had a difficult time keeping him swaddled and he often pulled at his ET and NG tubes) and he hasn’t slowed down!

Life since NICU has not been uneventful for Ryan, yet typical for a micro-preemie. In less than five years, there have been a multitude of medical appointments, procedures, medications, therapies, orthotics, and other special needs. Additional appointments and therapy are in Ryan’s future, to help assist with a cross bite, lateral and frontal lisp, asthma, and for farsightedness and cross-eye. Through it all, Ryan has risen to meet each challenge with a great deal of strength and determination, an intense curiosity, and great sense of humor.

Ryan is not just our Preemie Super Hero of the Year, but of every single day. We recognize him as our Super Hero not only because of his personality, abilities, or his endurance, but because he is a testament to strength, endurance, and determination of the Neonatalogists, NICU nurses, Respiratory Therapists, and other specialists who devote their careers to ensuring a happy, healthy future for our babies. They make miracles like Ryan happen!

To read more about Ryan’s NICU days, and the months following, please take a peak at his Caring Bridge site at http://www.caringbridge.org and enter the site name ryanondrick. For a smile, please watch a video of Ryan reciting the Pledge of Allegiance last Fall at http://youtu.be/Zk1hl6DTlX4. [Read more…]

Adventurous Atticus

Atticus ~ Super Hero Alias: Adventurous Atticus

AtticusAge: 14 months
Weight at birth: 2 lb 1 oz
Weeks gestation: 26 weeks
Time in the NICU: 90 days

Diagnosis, surgeries, complications?

Apgar scores of 1:1:1:5, required mechanical ventilation for the first week of life, neutropenia at birth, anemia of prematurity- required multiple blood transfusions, Respiratory Distress Syndrome, Chronic Lung Disease of Prematurity, Bronchopulmonary Dysplasia, Moderate PDA, Bilateral Inguinal Hernia Repair

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

The first 3 months of Atticus’ life were difficult to say the least.  The constant rollercoaster of the NICU took i’s toll on myself and my husband.  That’s the best way I can describe the NICU experience… A rollercoaster.  We never knew if he was going to be okay or what medical surprises would be waiting for us when we walked through the NICU doors; we never knew if Atticus was having a “good day” or a “bad day”; we never knew if he would be well enough to hold that day, or even touch; we never knew when he was coming home… being told constantly that he would be, only to be let down because he had a bad day.  Through it all, Atticus was the one in our family who was the strongest. [Read more…]

Nash Potatoes

Nash ~ Super Hero Alias: Nash Potatoes

NashAge: 15 months
Weight at birth: 2 lb 15 ozs
Weeks gestation: 29 weeks
Time in the NICU: 56 days

Diagnosis, surgeries, complications?

Respiratory distress syndrome ,anemia, hyperbilirubinemia, NEC scare

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

Nash has been a fighter from the day he was born. I could feel the power in his kick from inside the womb. He made his way out into the world 11 weeks early and has fought hard to this day. The NICU nurses said you can tell they will do well by the power in their wiggle. [Read more…]

Super Rhyan

Rhyan ~ Super Hero Alias: Super Rhyan

RhyanAge: 15 months
Weight at birth: 4 pounds 14 ounces
Weeks gestation: 35 weeks
Time in the NICU: 15 days

Diagnosis, surgeries, complications?

respiratory distress syndrome, GERD, weight gain struggles, developmental delays, sensory processing disorder, possible hip dysplasia.

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

Rhyan has overcome more in her short life than many do in a lifetime. She has taught me how to be a mother. She loves to prove everyone wrong. Despite all of her therapies, tests, and life itself, Rhyan always has a precious smile that motivates me to do great things!

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

As tiny as she started out, and as tiny as she still is today, Rhyan is the strongest person I know. She had a renal ultrasound to test for possible kidney reflux, no sooner than the test was done she was “talking” to the nurses and trying to feed them Puffs. She is my inspiration that’s for sure!

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