Amazing Alexis

AlexisAge: 2 years
Weight at Birth: 1lb 6ozs
Weeks Gestation: 27 weeks
Time in the NICU: 124 days

My Preemie Power Story:

Our Superhero is named Alexis Hope. In true superhero fashion, she has never backed down from a challenge or given in when odds were stacked against her. At 20 weeks into our pregnancy, we were informed that Alexis was not getting enough oxygen and nutrients. Doctors cautioned that her chances of survival were slim. The issue was further complicated by Alexis’ twin brother, who was healthy and thriving. Our decision to deliver the twins at 27 weeks was heartbreaking, as we were uncertain Alexis could survive in her fragile state and were devastated by the potential danger we were be putting her brother in.

Luckily for us, we were the parents of a full-blown superhero. Born at only 1lb 6ozs, Alexis had a long struggle through her first years. Our stay in the NICU was an excruciating 124 days long. While her twin brother seemed to thrive from the start, Alexis’ battle was hard; spending months on a ventilator, facing numerous infection scares, enduring transfusion after transfusion, and having countless feeding issues. Even once welcomed home, she remained hooked up to monitors, oxygen support, and a feeding pump. Her first year was spent visiting specialists and receiving round the clock care. Every gram gained was celebrated and every one lost was grieved. But throughout all of her battles she remained resilient and the source of our strength. Her smiles lighten a room and her boisterous laugh could melt even the toughest exteriors. While typically children learn from their parents, it was clear that we were the ones learning valuable lessons from her. In time, Alexis got stronger and by her second birthday started walking! Today, she is unstoppable. She is still extremely tiny but not to be underestimated. In fact, her size is one of her most valuable secret weapons!

As is the case for every notable Superhero, Alexis has proven to be a tenacious fighter; never to be underestimated. The experts cautioned not have too much hope. Immediately upon getting her prognosis we responded with selecting her middle name: Hope. And she has not disappointed, as we watched her beat the odds time and time and time again. For 2 years, Alexis has taken her own path at her own speed and laughed in the face of predictions. While the journey was long and the ride scary, she is absolutely our hero.

Super hero characteristics:

Tenacious Fighter: Even now you can see Alexis is not your average 2 year old. A micro preemie given those odds simply cannot be. She can be strong-willed, tenacious, stubborn, and fiery but beyond all of the adjectives; she is amazing and inspiring.

Unpredictable: Just when you think our superhero is down and out…KA POW…she rallies to win the fight.

Super Speed: Now that Alexis has started taking her first steps, she is making up for lost time and getting into EVERYTHING and getting there at super human speed. There is no holding her back now!

Miracle Cydney

CydneyAge: 9
Weight at Birth: 2 lbs 2.6 ozs
Weeks Gestation: 27-1/2
Time in the NICU: 96 days

My Preemie Power Story:

We found out in August 2004 that we were expecting and were elated! Our excitement soon was dashed as at my first ultrasound there was a small bleed. After home bed rest, I began having bleeding and an ultrasound revealed that I had lost part of the placenta. I was put on bed rest and would remain on bed rest at home until a new situation when my water had broken at just 18 weeks on November 14. We were told that she was not “viable” at this age and we were heartbroken as she was more than “viable” to us. A specialist’s diagnosis was there was less than a 5% chance that Cydney would survive. He offered us the chance to go ahead and end the pregnancy that day, because most people just deliver in 2 days at the most he said. As he was saying all of this, I remember grabbing Kleenex and looking past him at a picture of his family. Something changed in my thinking at that moment and I said what are our options for KEEPING the pregnancy. He indicated that I would be hospitalized on tilted bed rest, so that is what we did. Cydney never had more than a pocket of amniotic fluid bigger than 1 x 3 cm, but we know that God provided enough for her and right in front of her mouth. I remained on hospital bed rest for 9 1/2 weeks until Cydney was born on January 18, 2005, as I developed an infection. My husband said Cydney sounded like a baby kitten when she was born and my doctor said “That’s what I wanted to hear.” My doctor said, “There is no medical explanation for why she is here.” and we all know that God is her reason. We went into the NICU together and stopped by an incubator, where inside was the most beautiful, breathtaking sight. I reached my finger in and she grabbed my finger. She weighed 2 lbs. 2 oz. and was 12 and 3/4 inches long. She was on a CPAP machine and they were still getting her settled and running tests. Cydney got an infection at 1 week and was put on a ventilator, which she stayed on for a while. She had a brain bleed as a result of her prematurity,  which would resolve itself on its own. Cydney was able to come home after 13 weeks in the NICU, weighing 6 lb. 9 oz.. Despite her uncertain start, Cydney did well at reaching her developmental milestones. Cydney is our superhero. She had to battle just to be here with her super powers being: prayer, surfactant, and wonderful doctors and nurses. She faced beyond impossible odds of being born, and she defeated and surpassed those odds. When we dreamed of her, we couldn’t have had a more beautiful daughter both on the inside and out. We are so very blessed and thankful everyday for our Miracle Cydney.

Super Hero Characteristics:

“Determined” is a word that would accurately describe Cydney.  She has big dreams and she doesn’t let the size of her dream get in her way of pursing it.  Cydney is a wonderful student and prides herself on working hard and always doing more than she is asked.   Another quality that would describe Cydney is “Brave.”  She has always been smaller than everyone else, but you wouldn’t know it.   She is always up for a good challenge and works hard to compete and excel above whatever the situation is.  “Kindness” is another word that would describe our Cydney.  She is kind to everyone no matter their actions towards her.    She always has the right words to say as she always looks for the positive in all situations.  She is one of the sweetest, kindest people I know and we are so blessed to be her mom and dad.

Ary the Incredible

AryAge: 14 months
Weight at Birth: 2 lbs 5 oz
Weeks Gestation: 27
Time spent in the NICU: 75 days

My Preemie Power Story:
The day I found out I was pregnant I was shocked, excited and nervous all at the same time. It was a perfect pregnancy for me. Every day I was so thankful for this little miracle I was soon going to be a first time mom to. It wasn’t until 25 weeks and 6 days I woke up around 3:30 am to use the bathroom. When I turned on the lights and looked down I saw blood running down both my legs and clots just kept coming out. I had my mom rush my to the hospital and as soon as I got there my contractions were coming every 2-3 minutes. They did a sonogram and luckily everything with the baby was perfectly fine. My cervix was thinning which was causing me to go into pre term labor. I was given Magnesium to stop the contractions and Celestone to help her lungs mature. I was on bed rest for 8 days before I had her. Coincidentally, I had a doctor appointment that morning to make sure everything was going as it should. As soon as the doctor checked me I was 100% effaced and 2 cm dilated. She told me to go to the hospital because more than likely the baby was coming soon. 2 hours after settling in to the hospital my OB came in to check me and told me I was already 5 cm dilated and going fast. I had an emergency C-section and was amazed to hear her little cries when she came out. They told me not to expect to hear anything and that they were going to rush her to the NICU. She was intubated for a few hours but was able to breath on her own so they switched her to a CPAP. The first month and a half in the NICU was very hard on us but nothing was physically wrong with her. She was just having trouble keeping her weight up. The second month in the doctors noticed she was starting to develop NEC. Thankfully, they were able to catch it early and no surgery was needed. She was not able to have any breastmilk for 21 days while she was on antibiotics. This was an extremely difficult time for us but the little fighter she is made it through. Finally after 11 weeks she was able to come home. She is doing very well except for some developmental delays that she is getting therapy for 3 times a week. She is my miracle baby and I will forever be grateful for the little girl that she has turned out to be.

Super Hero Characteristics:
Intelligent, Inspirational, Extraordinary and One of a kind

Tabby Kat the Terrific

TabithaAge: 15 weeks (2 weeks adjusted)
Weight at Birth: 1 lb 14 oz
Weeks Gestation: 27
Time spent in the NICU: 66 days, plus 6 days in Pediatrics

My Preemie Power Story:
After 27 weeks in her momma’s tummy Tabby Kat couldn’t take it any longer. Her momma was sick and frightened, she clearly needed her Tabby Kat! So at 9am on the dot Tabby Kat came into the world via c-section, her early arrival healing her momma. A tiny 1 lb 14oz and only 13.5 inches long, Tabby Kat was whisked away to the NICU where she started showing everyone what it means to be super.

Tabby Kat should still have been safe and protected in her momma’s womb, but now she was in the big wide world. Breathing is hard work for little lungs that aren’t meant to be used yet, but Tabby kept at. On CPAP for nearly a week, she got more and more tired until she got permission to rest and was intubated. She was intubated for less than two weeks before being able to go back to CPAP. Oh how Tabby Kat hated the CPAP nose prongs, those things were the bane of her existence. So what was she to do except keep knocking them off. Finally after 18 days of daily battle with the CPAP she knocked them off for good! Another 16 days of oxygen and Tabby Kat was breathing all on her own.

Through it all Tabby Kat never forgot the reason she came into this world early. Her momma needed her. Nothing was better than snuggling with her momma skin to skin during kangaroo care. This was where she was supposed to be, not stuck inside a plastic box! So Tabby Kat kept persevering, eating and growing. Soon she was regulating her body temperature and moved to an open bassinet, where her momma could pick her up and cuddle anytime. Then Tabby Kat got so super she stopped having any bradies and the doctors said she could move up to Pediatrics to room in with her momma. Once there Tabby Kat settled down to the business of eating all her meals from a bottle and growing those last few ounces. Then finally the day came, after 66 days in the NICU and another 6 days in Pediatrics, at 38 week gestation Tabby Kat waved goodbye to the hospital and came home at 5 lb 15 oz.

Now home with her momma and daddy, Tabby Kat continues to develop her super powers. To her repertoire she added the ability to soak a burp cloth with a single well timed blurp. And she has a cry that can pierce glass and her momma’s heart. But never fear Tabby Kat would never use such an ability for evil, her cry is only for when momma and daddy are being particularly slow getting her bottle ready. Now Tabby Kat spends her days exploring the world outside the NICU and enjoying every moment being held by her momma and daddy. She wants her story to be an inspiration to other preemies, that no matter how small you are you can still be super!

Super Hero Characteristics:
Super strength, perseverance, cuteness and feistyness. The ability to make anyone’s day brighter. Not to mention projectile spit-up and supersonic screams (never used for evil).

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!!!

Love Bugs

Emma & MattieAge: 8 years
Weight at Birth: 952 & 950 grams
Weeks Gestation: 26 6/7
Time spent in the NICU: 82 days

My Preemie Power Story:

The director of neonatology at st. John’s came into my wife’s hospital room. She had been contracting all night. It didn’t look good. The babies had only been in there for 20 weeks. The doctor explained the many potential complications of a premature birth, which included, brain and nervous system disorders, hearing loss, vision loss, breathing issues, developmental delays, learning disabilities, and the list went on– that is, if the babies even survived, a 20% likelihood. She bravely asked one question- “At what point, what magical week would things look drastically different?” He looked at her and said, “At 27 weeks, viability changes to 90%.” Of course, there would still be serious cause for concern, but at least their chance of survival increased. He went on to say he did not suspect she could make it that far, but that each and every day counted. And so began our hospital stay. They would give her a maximum does of magnesium sulfate to keep her relaxed for as long as her body could take it. May 5th at 7am, exactly 2 weeks and 6 days later — one day shy of the magic number of 27 weeks and 13 weeks early the doctors said the twins were coming. The contractions had increased overnight. We needed to get them out quickly. I was sitting there just above Emily’s head as the doctor delivered Mattie Danielle, wrapped her up, and set her on Emily’s chest. She was so beautiful — this perfect little 2 pound baby girl. Emily and I were looking at the first love of our lives.

What Emily couldn’t see was the controlled pandemonium that ensued on the other side of the surgical curtain just after Mattie was set down. The doctor pulled out Emma Claire–also 2 pounds– quickly. She was blue. She was not moving. I couldn’t let Emily know. She had just fallen in love thirty seconds ago. The nurse came over to take care of Mattie and get her to NICU. Then I raced off to find Emma. The team had stabilized her. I’d never seen so many tubes coming out of a baby. She was so small and frail. But now she was with us too.

That first day, I put my hands into the sealed isolette that was protecting Mattie. I placed one hand over her head and one hand around her bottom. Our nurse explained that preemies who were cradled by their parents as early as possible seemed to do better. I remained there for quite some time. I remember thinking that if any heartbeat or any breath could be her last, how could I leave? We didn’t get to hold Emma for almost a month. During her NICU stay, Emma had a surgery to close a valve adjacent to her heart and, shortly after her NICU stay, a second surgery to save her vision.

Thankfully, after eighty-two days of ups and downs, we brought our two beautiful daughters home.

Super Hero Characteristics:

powerful, brave, transcendent, indefatigable, brilliant, kind, smart, humble, funny

Roman the Firestorm

RomanAge: 7 weeks
Weight at Birth: 2.7lb
Weeks Gestation: 24 weeks 5 days
Time spent in the NICU: 7 weeks

My Preemie Power Story:

After 7 weeks of bed rest at the hospital, Roman came into the world 13 weeks early. He decided to break his water at 27 weeks, and stayed with his mom for an additional four days.  Roman the Firestorm was born at 27 weeks 4 days on August 18, 2013 weighing 2 lbs 7 oz and 16 inches. As a Preemie superhero he earned his name through his actions as soon as he entered the world.  One hour after entering the NICU “Firestorm” defeated the ventilator by snatching it out. At 8 days old he had his first blood transfusion. This imparted additional superhuman strength and 14 days later he was removed from oxygen and was able to breathe without assistance.

Like many P-Superheroes he had a PDA which caused a heart murmur to be noticeable. The pediatric cardiologist declared that this may be a long term issue or he may need medication to help. Firestorm begin to get words of encouragement from his family and 2 weeks later without any intervention the murmur is no longer present. Being born with positional club feet he utilized the incubator as his own gym, moving, and pushing up allowing him to strengthen his leg muscles. He has delighted his nurses with his incubator acrobats, often needing to be snuggled to prevent this.

His time in the NICU has been utilized gaining strength to conquer the world through the mighty breast milk. He has almost doubled his weight in 7 weeks and has grown 2 inches. Although his feedings have been through the “Dragon” tube he has continued to get stronger and attempt to slay this. Taking bottles at 34 weeks he was defeated the first time but has continued to fight. He is currently fighting the dragon at least twice a day, each day learning the dragons weaknesses and his strengths. Through all his victories he has always stayed positive, and smiled along the way. Never seeing a tear on his face, has allowed everyone who comes into contact with him to be more than positive. “Firestorm” is currently in the NICU continuing to utilize all his superpowers and joining with other P-Superheroes to be supportive. Mommy and Daddy hope to bring him home and continue to watch him defeat all obstacles placed in front of him to be a healthy, striving P-Superhero. Until then where there is beeping in the world, and lights all around, Firestorm will be there to take them all down.

Super Hero Characteristics:

Ability to defeat all NICU machines in a single bound. Ability to deflect pain and inflict happiness to all that come in contact with him. Ability to gain weight by 2 ounces in a single bound.

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.

Booginator

Ember ~ Super Hero Alias: Booginator

BooginatorAge: 18 months
Weight at birth: 2 lb 3 ozs
Weeks gestation: 27 weeks
Time in the NICU: 90 days

Diagnosis, complications, surgeries? 

Loss of blood at birth, N.E.C.(Necrotizing Enterocolitis), U.T.I.(Urinary Tract Infection), eye infection.

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

She has overcome so much, even the stereotypical premature baby. Before she was 1 year old, she was caught up to her age group. She excels at everything she does and is completely fearless. She is needless to say “AWESOME”. We live on her angel twin sister through a non-profit organization known as Erin’s Mercy.

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Finding Someone Who Understands How Hard the NICU Experience Is

Watching a vulnerable child during a NICU stay is emotionally draining and difficult whether your child has many complications or just a few. Courtney’s son Jackson was born at 27 weeks and was in the NICU for 79 days. She contacted Hand to Hold to find a mentor to support her through the emotional roller coaster and who knew first-hand how hard this experience is. She was matched with Jessica, mom to Isaac who was born at 28 weeks gestation and who had a 50-day stay in the NICU. Despite the early birth, both boys had very minor complications and are both doing well. Both moms were glad to have found the peer support they needed to give back, find hope and heal.

Courtney B and her son

Courtney with her son Jackson

Courtney B

“There are so many benefits to receiving support!  In the very beginning, I felt like I was thrown into this unknown world and I felt alone. I found comfort knowing that someone, like Jessica had gone through a similar experience and that I could go to her for advice! When I was worried about something or scared, I would write her and she always had something helpful and positive to say!! It’s also comforting to have someone who knows your story and who is rooting for you and your little one!

Talking to Jessica made my NICU experience less scary, and gave me hope! We became friends on Facebook and it helped me a lot to see her son Issac’s pictures and how good he is doing now! Her positive words brought me happiness during a gloomy time!”

Jessica D

“Being a mentor to Courtney has also helped me continue my healing process from the premature birth of my son. When someone has a similar story to yours, it can help you see situations in ways you would not have when you were the one in their shoes. You can say “I know how you feel” and truly mean it. I was matched with Courtney very soon after her son was born and it has been amazing to get to know her and her baby Jackson through messages and photos that she shares.  

I believe that having someone that can relate to you no matter where you are in your NICU journey is extremely important. At the hospital where I had my son, there was no peer support system for parents which is very disappointing. It is a very scary time and just having an ear to listen can help tremendously. My only regret is not finding Hand to Hold sooner!”

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