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

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.

Savvy G

SavannahAge: 15 mos (12 mos adjusted)
Weight at Birth: 1lb 2oz
Weeks Gestation: 27 weeks 5 days
Time spent in the NICU: 109 days (plus 120 in PICU)

My Preemie Power Story:

Savannah Grace or “Savvy G” was born three months premature due to IGUR caused by the blood flow in the umbilical cord flowing in reverse. She was born via an emergency C-section just 1hr 38mins after a scheduled ultra-sound appointment. At a mere 1lb 2oz and 11.5 inches long, Savvy G. spent the first 109 days of life in NICU. We brought her home with a NG feeding tube and oxygen. After 2.5 months of improvement (or so we thought) she was admitted to PICU with severe pulmonary hypertension, aspiration, BPD, and ASD. She sent the next 120 days in the PICU before we brought her home, at 10 months of age, with a trach, vent, gtube, central IV line, oxygen, and Nissen. Our incredible fighter has been back to the hospital for 10 admissions since then, but never gives up! She’s the most happy, brave, and determined little girl I have ever met. She has spent more nights in a hospital crib than at home, but I know she is going to continue to beat the odds with God’s grace! She continues to grow (currently 20.5lbs and 28inches long) and amaze us as her little personality emerges day by day. We have a long way to go developmentally, as she is still working on sitting up and relies solely on her gtube for nourishment and her 13 meds. We are incredibly blessed with an amazing team of doctors (7 to be exact) and nurses (whom are with us 16hrs a day). Her doctors have an incredibly positive outlook for Savvy G’s future. They anticipate her being off her oxygen, trach and vent within the next 2-3 years and just in need of an inhaler for some asthma. She keeps us on our toes, as you can see the orneriness in her picture, and we can’t wait to see what our little Savvy G has in store for the future! We figure she will have a great story to share for ice breakers down the road too 🙂

Super Hero Characteristics:

1.Radiation Immunity (def: having an invulnerability to forms of radiation) – Just like Iron Man, Savvy G has radiation immunity power … I lost count of how many x-rays she has had around 90(ish).
2. Super Breath (def: enhanced breath; the ability to create high lung pressure)
With her vent, trach and oxygen, Savvy G has the best lung pressure to fight off her pulmonary hypertension!!!!!
3. Endurance (def: stamina; the capability of sustaining prolonged stressful effort)
Savvy G has undergone 3 blood transfusions, 3 surgeries, 2 non-surgical OR procedures, 4 central line IV placements, too many standard IV’s to count, anesthesia, and countless infections …. but she NEVER gives up!!! Thank you Lord for our strong, courageous, brave fighter … Savvy G is our SUPER HERO!!!

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.

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…]

Princess Smileyface of The Sunshine Brigade

NyanaAge: 3
Weight at Birth: 1110g / 2.2lbs
Weeks Gestation: 27/2
Time spent in the NICU: 222 days (7 months)

My Preemie Power Story:

In the late summer of 2010, The Sunshine Brigade rolled into BC Childrens’ Hospital in Vancouver. After Mum spent a month on hospitalized bedrest with a placental abruption, Nyana was born and our lives changed forever. For seven and a half months we rode two busses and a skytrain each way, every day, to be at her bedside. We became intimately familiar with medical jargon and terminology we hadn’t even heard before. Our little girl spent three days under the phototherapy lights and had one spinal tap and four blood transfusions in her first two months. We counted ourselves lucky that there were no brain bleeds, no PDA, no complications, aside from premature lungs. Ultimately, her little lungs just weren’t strong enough and she was intubated at ten days old. She would remain on a ventilator for another two months. Prolonged ventilator exposure developed into the chronic lung disease BPD (bronchopulmonary dysplasia) and we were stuck in an evil Catch 22 where her lungs needed the ventilator to breathe but the ventilator was damaging her lungs. About a month before her actual due date, she contracted an infection and her O2 requirements peaked at 100%. We were told there was nothing more that they could do, and that it was all up to her. She would either pull through on her own or she wouldn’t. We said a tearful goodbye and rode a somber bus home that night, unsure of what the morning would bring.

The Sunshine Brigade rallied and hit the internets with love and light, and somehow Nyana got through the night…and then the next night…and then the next. She held on, and we slowly weaned her oxygen back down to comfortable levels. She received two courses of steroids in an effort to get her off the ventilator and finally, two weeks before her due date, she was extubated to biphasic CPAP.

We would spend another four months growing those little lungs strong enough to be allowed to bring her home. We spent Thanksgiving and Halloween and Christmas and New Years in our NICU. Her Dad’s birthday and her Mum’s birthday and Easter, too. Finally, ten days before Mother’s Day, we brought our little hero home, 222 long days after she was born. She came home on BiPAP support with oxygen, and with a g-tube for feeding – and we’ve only been back to the hospital once, for rotovirus when she was two.

Now she’s three and breaking down all obstacles before her. She loves the rain, climbs at the playground with confidence, and introduces herself to every other kid she meets, whether they’re interested or not. She’s been off of BiPAP entirely for almost a year, and had her g-tube removed about six months ago. She has a fantastic appetite and will eat about anything – including vegetables (all superheroes need ’em!). She even went an got herself a little brother – just to prove that she’d be a great big sister…and she is. She’s perfect.

Super Hero Characteristics:

Fearless – whether it’s trying to climb the peaks of Mount Daddy, or diving into a new food, this girl is fearless. Not wreckless, just fearless. She’s careful about it.

Caring – she cares about others and wants to make the world a better place. She’s always helping her little 9mo brother learn things, she’ll go out of her way to avoid squishing slugs and bugs, and is the first person trying to make you giggle if you’re feeling sad.

Super Fast – running down the hallway to our apartment door, crawl-racing Mum to bed at night, or zoom-zooming after the cat, Nyana is a speedster and loves to go fast.

Super Strong – don’t let her little arms fool you! She can pull herself up from impossible angles, climb up people with the greatest of ease, and hang from your neck long enough to make you see stars.

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…]

Super Love Baby

Morgan ~ Super Hero Alias: Super Love Baby

MorganAge: 14 months
Weight at birth: 2 lb 5 ozs
Weeks gestation: 27 weeks
Time in the NICU: 75 days

Diagnosis, complications, surgeries? 

Premature birth due to infection, BPD, CMV infection, sleep apnea

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

Morgan must have been really excited to meet her mom, dad and big brother Noah because she entered the world 13 weeks early at 27 weeks gestation. She fought many obstacles in the NICU including a lung infection called CMV. She went home on oxygen and at 14 months she continues to use oxygen while she sleeps. She was very delayed in her milestones to the point that her doctors were unsure if she would walk, but Morgan keeps fighting. She goes to therapy twice a week and practices her exercises at home. At 14 months (just a few days ago!) she took two steps on her own! Soon, Morgan will undergo her first surgery which we are sure she will go through with grace and courage as she has with all her other obstacles. Morgan deserves to be “Preemie of the Year” because throughout her first year of life Morgan has brought joy to so many people in her family and community. Her smile melts your heart! Morgan has taught the people she has met what love and happiness truly means.

[Read more…]

Mr. Personality

Aiden ~ Super Hero Alias: Mr. Personality

AidenAge: 20 months
Weight at birth: 1 lb 13 ozs
Weeks gestation: 24 weeks
Time in the NICU: 166 days

Diagnosis, complications, surgeries? 

Aiden was born at just 24 weeks gestation, following unexplained, spontaneous, premature labor. In his first few weeks, he endured a Gr IV IVH, perforated bowels, nephrocalcinosis, renal failure, retinopathy of prematurity (resulting in injections), a PDA ligation,numerous blood transfusions, several steroid doses, numerous intubations and severe BPD. After 4 months, When he was finally on high-flow and about to be switched to low-flow, he was diagnosed with RSV, which resulted in us almost losing him. He was in an induced coma for almost 2 weeks, on a jet ventillator and on pain meds. When he was finally well enough to wake from the induced coma, he had to endure withdrawls from the pain meds. Aiden came home with us after 166 days in the ICN, on oxygen and with a G-tube for feedings. Because of all of the intubations, he had a very difficult time learning to eat orally and had the g-tube for 8 months before he was finally able to eat sufficient amounts on his own.

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

We like to say that “Somebody forgot to tell Aiden that he was a preemie”. Aiden should be recognized as “Preemie of the Year” because he has beaten all odds put against him. He was born at our home hospital, one that did not have the level of care that a 24 weeker requires. His first hours included a helicopter trip to a suitable hospital. We were told to expect CP and severe delays (due to the Gr Iv IVH), that he would most likely lose his vision (due to severe ROP) and would likely not eat solid foods until the age of two (due to the numerous and lengthy intubations). Aiden has leapt over these hurdles and is now a healthy, happy, adventurous, curious, and active little man. He is walking, beginning to talk, has no requirement for glasses so far, and eats like a grown man. He lights up the room with his smile and melts the heart of even the gruffest men. Nobody believes us when we tell them he was 16 weeks premature!

[Read more…]

Super Warrior

Nina ~ Super Hero Alias: Super Warrior

NinaAge: 5 years
Weight at birth: 1 lb 13 ozs
Weeks gestation: 27 weeks
Time in the NICU: 66 days

Diagnosis, complications, surgeries? 

ROP stage 2,PFO,BPD-oxygen support for 8 months, blood transfusions

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

She is a little fighter who overcame all the obstacles and pushed through no matter what with the positive attitude and a smile on her face. She loves playing outside, going to school and making friends. Her personality always spoke from day 1: “I am not giving up,I am going to fight it and win!” She is truly a miracle with all the problems resolving with medical help and the power of prayer.

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

Strong spirited,energetic,positive

What advice do you have for future NICU parents?

Never give up,there is always hope

Site last updated May 23, 2017 @ 3:00 pm