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.

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…]

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…]

Evan from Heaven

EvanAge: 9 months
Weight at Birth: 1lb 4oz
Weeks Gestation: 23
Time spent in the NICU: 117 days

My Preemie Power Story: 

Evan was special from the day we found out I was pregnant. You see, we had been trying to get pregnant for almost 3 years and after a miscarriage, knowing that I was pregnant again was the answer to my hardest, most relentless prayers.

Going into labor unexpectedly at 23 weeks 5 days would be scary and terrifying for anybody, including my husband and even the medical staff, but somehow I was not. “So do not fear, for I am with you; do not be dismayed, for I am your God.” Infertility was torture, but it gave me the most precious gift: realizing I was not in control and putting all my trust in God.

The truth is Evan’s path had been chosen way before he entered this world at 23 weeks 6 days. “Before I formed you in the womb I knew you, before you were born I set you apart.” So we wanted to give him a name to reflect this: Evan means God is Gracious and Little Fighter.

Superhero from Day 1: Evan was born crying and that tiny little cry was the sweetest sound. He conquered many battles in his 117 day NICU stay: the ventilator, small PDA, blood infection, meconium issues, high blood sugar, HMF intolerance, slow weight gain, blood and platelet transfusions, spinal tap, CPAP, high flow and low flow cannula, ROP stage 2, bilateral hernia. God has held him in his palm every second of the way. Just the fact that a 23 weeker did not have any brain bleeds is a miracle. And we are thankful and will forever be grateful for His blessings.

Today Evan is almost 9 months old and is doing amazing, meeting all the milestones for his adjusted age and no current issues except for his reflux. He is OUR MIRACLE and the answer to many people’s prayers.

Super Hero Characteristics:

My little superhero is strong, both physically and mentally, as he overcomes each challenge of his premature birth. He is persistent as some of these challenges are more difficult for him than others, like breathing and eating. He is brave and full of courage as evidenced by the countless pinpricks on his hands and feet and the surgical scars on his body. He is intelligent as he masters new skills to overcome his developmental delays in fine motor skills and speech. He is compassionate and loving, wearing his heart on his sleeve and offering it to others in need. He is curious and fearless, always seeking out new adventures and new friends. My little superhero charms his way into the minds and hearts of all those he encounters. The world is a better place as my little superhero lights up the day with his smile.

Jake the Great

Jake ~ Super Hero Alias: Jake the Great

JakeAge: 9 months
Weight at birth: 2 lb 6 ozs
Weeks gestation: 28 weeks
Time in the NICU: 59 days

Diagnosis, complications, surgeries? 

Apnea, Bradycardia, Acid Reflux, Anemia

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

To us Jake IS the Preemie Of The Year!! Jake gave his Mom every sign that he possibly could to let her know that he wanted OUT! Mom had no idea her placenta was failing until Jake decided to be still for hours at a time. Born at 28 weeks and 1 day (2lbs 6oz 14 inches), Jake was born breathing on his own and fighting! After loads of caffeine, one blood transfusion, a few Bradycardias, mild Sleep Apnea, prayer, blood, sweat, tears and a huge weight gain; he was discharged with a monitor and a script for Zantac! Jake is now 9 months 19lbs 8oz and 27 inches! Thank You Lord for this modern day Miracle! His name is Jake and I’m sure he approves this message 🙂

[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…]

Courageous Elijah

Elijah ~ Super Hero Alias: Courageous Elijah

ElijahAge: 12 months
Weight at birth: 1 lb 4 ozs
Weeks gestation: 32 weeks
Time in the NICU: September 24 to January 15

Diagnosis, complications, surgeries? 

Grade 2 brain bleed-resolved, PDA ligation, premature lung disease, premature retinopathy-required laser surgery, loss of peripheral vision-both eyes, duplex kidneys, gall stones, and GERD.

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

Elijah is a living miracle. The fact that he has come this far without any developmental delays, has perfect vision despite laser surgery, and perfect hearing really shows how much a tiny micro-preemie can overcome. Elijah was born as “Twin A”, his sister Isabella “twin B”, who lived 11 days then gave her soul to become Elijah’s angel. On the day of Isabella’s passing, Elijah began doing better, that was the day we knew he was going to fight to come home regardless of the odds against him. Elijah showed us how hard a tiny human can fight so hard to stay alive. We watched Elijah learn how to breathe without a vent, eat without a tube feed, and watched him day by day progress. Just watching Elijah do the most simple things that every person does without thinking was an astonishing miracle. Elijah overcame the 30% survival rate, we believe part of this is from his angel and the other part is from our miracle being a fighter. Elijah is an inspiration and our micro-preemie is evidence as to why people should never take life for granted. Elijah will always be our super hero!

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

Going to the NICU every day twice a day for 4 months was extremely scary, unpredictable, but addicting. Our courageous Elijah fought a PDA ligation surgery weighing only about 1 pound, our Elijah beat the odds. Our courageous Elijah became the kryptonite against the 30% survival rate!

What advice do you have for future NICU parents?

Live in the here and now when going to NICU, do not look ahead-the uncertain is too overwhelming.Look back later to see how much you and your preemie have overcome.

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!

Clayton the Colossus

Clayton ~ Super Hero Alias: Clayton the Colossus

ClaytonAge: 8 months
Weight at birth: 1 lb 5 ozs
Weeks gestation: 25 weeks
Time in the NICU: 128 days

Diagnosis, surgeries, complications?

Chronic Lung Disease, Severe Acid Reflux, Chest Tube Placement Surgery, Double Hernia Surgery

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

I believe my child should Preemie of the year because, I think he is one of the strongest yet motivated little guy I have ever seen/met. He not only was strong and survived but he also saved me. I did not know where my life was going or heading until I had him. I look back now and think about how selfish I was and smile now because he has changed me for the better!

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

Tough
Determined
Brave

What advice do you have for future NICU parents?

Keep your head up and DO NOT be afraid to ask for help!

Tessa the Great

Tessa ~ Super Hero Alias: Tessa the Great

TessaAge: 7 weeks
Weight at birth: 5 lb 4 ozs
Weeks gestation: 35 weeks
Time in the NICU: 11 days

Diagnosis, surgeries, complications?

Atrial flutter, premature lungs, svt, reflux,

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

My daughter was born at 35 weeks gestation via emergency c-section. The doctors had to take her early due to heart problems. They said she would have heart failure if they waited any longer. They thought she would stay in nicu for storage a couple months. I think she should be Preemie of the year, because she only had to stay in nicu for 11 days! She is such a fighter!  She started out eating only 1ml and by the time she came home she was eating 2oz! She is on heart medicine now and she is a very happy baby! She now weighs 7lbs 9oz!! Oh and she had to stay under an oxyhood but by day 8 she was breathing on her own 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

My baby girl is so strong! She had her first eye appointment yesterday and they had to clamp her eyes open to do the exam. She squeezed her eyes so hard that the clamp came out 3 different times! She finally just let them do the exam. She is a fighter too! When she was in the nicu, she would start to brady, but she always pulled herself out of it before the nurses could even get to her. Overall she is my mighty super hero!! She has helped me be strong through all of this! She teaches me more and more everyday! She puts a smile on my face everyday!

What advice do you have for future NICU parents?

Every day is a struggle but everyday is progress made! 🙂

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