V-man

V-manAge: 5.5 months
Weight at Birth: 1lb 5ozs (587 grams)
Weeks Gestation: 24 weeks 6 days
Time in the NICU: 170 Days

My Preemie Power Story:
After a mostly uneventful pregnancy, I was admitted to the hospital with severe preeclampsia at 22 weeks 6 days. I spent two weeks there on bed rest before being rushed to a c-section due to the baby showing signs of stress. We were warned our baby was so young that we wouldn’t hear him cry. Instead, he made three little cries for us! We should have known then that he was telling us what a little fighter he was going to be.

Victor had a very brief honeymoon period and less than 24 hours later, ended up on the oscillator. Even though I had received steroids, his lungs were very very weak. He received four doses of Survanta, and finally his body slowly started showing some response. Then at one week old, his left lung partially collapsed. Somehow he managed to avoid a chest tube.

With the help of steroids, Victor moved on to the regular ventilator, where he spent the next 8.5 weeks. During that time, we had a few firsts. At 13 days of life, we got to do our first kangaroo care. The following week, he finally got to start taking in breast milk through a gavage tube. I changed his diaper for the first time, and he started wearing clothes.

At just before two months old, once he hit 1500 grams, Victor underwent a PDA ligation. Again we were warned of something — this time that the recovery could be pretty rough. Somehow, he didn’t have any of the expected issues. A week later, he was able to say goodbye to the ventilator and hello to CPAP.

Two weeks after Victor’s PDA surgery, we received word that his eyes were showing Stage 3 ROP plus disease. He would go on to have laser eye surgery the next day.

The week after his eye surgery, the doctor noticed during rounds that Victor’s right leg was swollen. An x-ray confirmed a broken femur. He was fitted for a Pavlik harness to keep his leg stable and scheduled for a follow up x-ray in 3 weeks. Two weeks into it, his breathing had worsened. A chest x-ray showed broken ribs. Thankfully he healed as quickly as predicted, and by his due date, the broken bones — and harness — were behind him.

Victor struggled to move from CPAP to high flow. Once he was able to go to high flow full time, he got stuck at a high rate. Steroids were administered again, and that allowed him to wean down to a lower flow rate.

At one month past his due date, Victor moved to be with the feeder growers. He struggled with bottle feeding, but once the right bottle/nipple combo was introduced, he showed improvement.

Finally, after 24 weeks and 2 days in the NICU, Victor got his first breath of fresh air — via stroller ride home! He is on 1/2 L of oxygen and has many follow up appointments…..but he is home!!!

Super Hero Qualities:
The main super hero qualities my son exhibited were courage and a willingness to fight. Every time we hit a bump in the road, I would be an emotional wreck. Not my little guy. He would take it all in stride, and then at the last minute he’d conquer the “enemy” as if to say “have no fear…”

In true super hero fashion, my son also liked to defy the odds. He wasn’t supposed to cry at birth, but he did. He had a collapsed lung but avoided a chest tube. He was a likely candidate for a tracheostomy, yet he managed to fend that off too.

Lastly, super heroes are charming. That is definitely my son. He had lots of nurses who wanted to take care of him on any given day and night. It is easy for him to bat his beautiful eyes and immediately get his way.

Warrior Princess

GiaAge: 2
Weight at Birth: 1 pound 2 ounces
Weeks Gestation: 24
Time spent in the NICU: 111

My Preemie Power Story:

Our story begins on April 17, 2012. I was admitted to the hospital on complete bed rest due to Premature Rupture Of Membranes (PROM) at 23 weeks gestation. I was given 3 dosages of steroids just in case she decided to come early. Well, 8 days later, she did! I was rushed into the OR for an Emergency C-Section due to a Prolapsed Umbilical Cord. There are no words to describe how I felt when I was told my baby had a 35 percent chance of survival. Every time a doctor walked into my room, my heart would drop to the floor. The moment I saw my daughter, I just cried. She looked so helpless. I was overwhelmed by breathing machines, tubes, wires, IVS, the fact that I could see right through her skin and consent forms for blood transfusions. I quickly became very familiar with the words “Bradycardia” and “Apnea”, which is a nightmare to witness. The first time she was taken off the ventilator and put on oxygen didn’t go so well. She was getting too tired and was put back on the vent for a few days. The second time was perfect! On July 19, 2012, she was taken off oxygen and did excellent! She was fed every 3 hours through an NG tube until she slowly learned how to bottle feed. Reflux was a major issue. She was prescribed to Prevacid and Zantac. On August, 14, 2012, she was discharged from NICU. Unfortunately, she was admitted into PICU the next day because she refused to drink all together. We found out she had a UTI and was put on antibiotics through IVS for 7 days. The bottle feeding and reflux was getting worse, so the GI doctor decided to mix her formula with Gelmix. It helped! Two weeks later, we were talking about discharge, but of course that was delayed due to blood in her stool. X-rays, ultrasounds and cultures determined it wasn’t NEC or Intussusception. The doctor then decided to do a colonoscopy and endoscopy, but first she had to have a Frozen Plasma Transfusion because her blood wasn’t clotting and Vitamin K wasn’t working. The end results turned out to be an allergic reaction to the Gelmix. The GI doctor then suggested a Nissan Fundoplication and G-Tube to be the next best option. On October 6, 2012, she went in for a 4 hour surgery in which she also had 2 hemangiomas removed. Those were the longest 4 hours of my life. She remained in PICU and Peds until November 5, 2012. Although we have still hit some bumps in the road and she still has her G-Tube, I’m thrilled to say that Gia is a happy, healthy and very intelligent 2-1/2 year old. I love her with all my heart and soul and I thank God everyday for showing me that miracles can happen!

Super Hero Characteristics:

Gia is strong, intelligent and courageous

Aubrey the Feisty

Age: 1.98Aubrey
Weight at Birth: 1lb, 9oz
Weeks Gestation: 24
Time spent in the NICU: 4 months

Preemie Power Story:

All attempts to keep Aubrey where she should have stayed for nine months were unsuccessful. After a very scary day and night of contractions and steroid shots and feeling like I was being lit on fire from doses of magnesium sulfate, Aubrey deemed it time to be born at only 24 weeks 3 days gestation and weighing 1 pound, 9 ounces. Not me, her daddy, grandparents, nor her many doctors and nurses could convince her it was a bad idea. The first sign she was a fighter was her birth time—3:57a.m. A .357 Magnum, that one (daddy is a police officer, so he made that connection). The second sign was the three tiny cries she gave upon being thrust into the world way too early. The third sign was when she was taken off the ventilator just two days after she was born; the nurses were amazed and immediately dubbed her “feisty.” The fact that she swatted at their hands and kick boxed in the isolette may have had something to do with the nickname as well.

Aubrey’s major problem was getting her brain to tell her lungs what to do and when to do it, and then getting her lungs to listen. I watched her turn blue and purple so many times that I lost count. I could “hear” her monitor alarming while at home in the shower. She took the tube feedings fine if the tube was in her intestine; the doctors tried it into her stomach and milk shot out of her nose repeatedly until the tube was moved down again. So, we would let her grow more and try again, and again it wouldn’t work. After being in one NICU for 3 months and the doctors there running out of ideas, we were moved to a second NICU at a nearby teaching hospital. I guess that made Aubrey realize she had to shape up, because a week after our move she was taking milk in her stomach and another week after that and she was off of extra oxygen all together.

Aubrey endured the many preemie eye exams like a trooper, but she ended up having laser surgery to correct retinopathy of prematurity in both eyes. She went through having scopes down her throat twice, and marched right along through the barrage of swallow tests, x-rays, brain scans, and everything else a preemie has to endure. After 122 days in two different NICUs, we brought her home with a feeding tube and an apnea monitor. She finally got the hang of the bottle about 5 weeks after coming home and hasn’t looked back. She’s almost two now, and she’s absolutely perfect (I’m not biased at all, honest!). When we go back and visit our NICU nurses and doctors that took such good care of us, they still talk about how feisty she was even at two pounds. I can’t wait to see what Aubrey the Feisty has in store for us in the coming years.

Super Hero Characteristics:

Super strength! At 1 pound, 9 ounces, Aubrey was throwing around a board strapped to her arm to keep her IV lines from kinking. She gave the nurses kick boxing lessons. Even though she was 16 weeks early, she was only on a ventilator for a total of four days. Superman’s got nothin’ on her.

X-ray vision! At less than two pounds, her piercing gaze could shoot right through you; it still can. I couldn’t leave the NICU while her eyes were open, following me, drawing me back with those tractor-beams.

Mind control! This tiny human had many people at her beck and call, 24 hours a day. She controlled my thoughts at all times. She told educated doctors and nurses what to do. One blip of her monitor and people were set into motion to do her bidding. She was a baby super genius totally in control.

Ryder the Fighter

RyderAge: 5 months
Weight at Birth: 1lb 7 ozs
Weeks Gestation: 24 weeks 5 days
Time spent in the NICU: 3-1/2 months

My Preemie Power Story:

On March 29th, 2013 at 19 weeks pregnant we found out our first child would be a boy! We also had our world turned upside down by my being admitted to the hospital that same day because my cervix was thinning and I was beginning to dilate. After being told that IF we made it to the point of viability that it would still be a difficult journey after that. It was probably the worst day of my life, starting out with such joy to know that I was having a son and then to be told if and when you have him he may not even survive.

Needless to say, I made it to 24 weeks 5 days and on May 7th 2013 our little miracle baby was born! I remember looking down for a split second through my pain and tears as the doctor kept saying to me, “Look at your baby” and there he was. So tiny and fragile weighing just 1lb 7oz. It took 2 attempts to intubate Ryder and on the second try, the tube worked and he began breathing.

Hours later I was able to go to the NICU and see him for the first time. There were so many things attached to him, but he was still so beautiful. His little arm was stretched out and I placed my finger in his hand. When he gripped my finger with such strength, I knew at that moment everything was going to be okay.

We spent a long 3-1/2 months in the NICU. He fought through one infection that almost took him from us, was on the ventilator for 2-1/2 months and had surgery to close his PDA valve. Every day I spent with him he taught me more and more that life had a bigger purpose for me and I just hadn’t found it yet, but it was Ryder. He is my Super Hero, he has proved statistics wrong and is thriving and loving life. He has taught me that it is okay to reach out to others for help and support, you don’t have to fight life’s struggles on your own! He came home on August 15th on a small amount of oxygen and we were told he would probably need it for a few months, and again he proved them wrong. Two weeks later at his first pulmonary appointment he was taken completely off of oxygen and we haven’t looked back since! He is a healthy 8lb baby now and I couldn’t be more in love <3.

Super Hero Characteristics:

Inspiring, Tough, Strong, Smart.

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!

Super Sequoia

SequoiaAge: 2 years
Weight at Birth: 1.9lbs
Weeks Gestation: 24
Time spent in the NICU: 4 months

My Preemie Power Story:

Sequoia was born at 24 weeks in Phoenix, Arizona. Four days prior to her birth, we had missed our flight back to Missouri. The day she was born, we were in Lake Havasu, Arizona at her six month check up…the ob said I was two cm dilated and she was coming breach. We were air lifted the 250 miles to Phoenix and she was delivered at 705grams. Today she is my smart active 2 year old.

Super Hero Characteristics:

Detail orientation, determination, inquisitiveness

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

Ben the B Charmer

BenAge: 4 years, 7 months
Weight at Birth: 1lb 6oz
Weeks Gestation: 24
Time spent in the NICU: 185 days

My Preemie Power Story: 

Ben entered this world fighting to breathe, but with his charm and strong will, he is slowly conquering every challenge of his traumatic birth. He coded in the delivery room, was resuscitated and taken to the NICU. With his eyes taped shut, he charmed the doctors and nurses with his ‘I can do it’ attitude as he struggled to breathe and set off alarms frequently. At twenty days old, Ben snuggled into my chest for the first time and we learned that he needed surgery to close his PDA. Two weeks later, after two infections and barely weighing 2 lbs., Ben had surgery to close his PDA. But even then, my amazing son still had to fight to breathe, charming the people around him but finding it difficult to charm the beeping machines. After 5 1/2 months of relying on machines to help him breathe, Ben was breathing on his own! Two weeks later, at 185 days of life, Ben came home to a nursery equipped with a pulse ox monitor, oxygen tanks and a feeding pump.

Twenty-eight days later, Ben was readmitted in respiratory distress. Watching my tiny baby with fragile lungs struggle with the doctors and nurses as they intubated him, a man tapped my shoulder and said he was the chaplain and they had sent for him. Squeezing my husband’s hand, we prayed for our son’s strength. Once again, my little superhero persevered and charmed his way through the incessant beeping of the machines.

Ben celebrated birthdays in true superhero style, charming his way through each challenge and gaining the love, admiration and encouragement of the doctors, nurses and therapists working with him. For his first birthday, Ben stopped relying on steroids to help him breathe and had his second surgery to place a g-tube and Nissen fundoplication. For his second birthday, Ben was weaned from tube feedings and began eating smooth purees and thickened formula and taking medications orally. For his third birthday, Ben started school and had his g-tube removed. For his fourth birthday, Ben had a party at school and ate frosting off his cupcake, and then had his third surgery to close the g-tube site, which had reopened, and fix the strabismus in his left eye.

Today, Ben is a joyful preschooler who continues to charm all those around him. He loves dolphins and kangaroos, fire trucks and school buses, dancing and singing. His smile lights up the room and his laughter is contagious. Ben is running and climbing and throwing rocks like other four year old boys, but he continues to fight to overcome the oral aversion to chew whole food and the developmental delays in fine motor skills and speech. But as he has proven in the past, Ben will continue to work his charms to overcome each and every challenge of his premature birth. And he will do it with a smile on his face and a twinkle in his eyes as he is the B Charmer.

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.

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!

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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!

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