Ninja Sophia

Sophia K. ~ Super Hero Alias: Ninja Sophia

Sophia KAge: 2 years
Weight at birth: 1lb 9oz
Weeks gestation: 24 weeks
Time in the NICU: 103 days

Diagnosis, surgeries, complications?

Chronic Lung Disease, PDA, Oxygen dependent, malnutrition, hernia, Retinopathy of prematurity (eye sugery), vision loss, oral hyposensitivity & tactile hypersensitivity

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

Sophia has always been a fighter, even came out kicking and trying to cry. She has 3 therapies each week & has come so far for her little age of 2 (21 months adjusted). She continue to give others hope by visiting the Ronald McDonald House & Room where other preemie parents stay while their children are in the NICU. Not to mention being inspiration for preemie parents on Facebook. When you tell people you have a 24 week old and see how far she has come it really does give hope to other who are just starting their rollercoaster ride.

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

My Sophia is known as the little Ninja because she is such a strong little fighter who conquers any developmental/medical issues she has.

What advice do you have for future NICU parents?

You are your child’s best advocate, it’s important to be there regularly in the NICU not only for the bonding/kangaroo care but to make sure things are going right. And if you need help (emotional/informational) don’t be afraid to ask anyone because this is a very hard time & they want to help so let them.

Owey the Great

Owen R ~ Super Hero Alias: Owey the Great

Owen R

Age: 3 months old
Weight at birth: 4 lbs 10 oz
Weeks gestation: 36 weeks
Time in the NICU: 40 Days in NICU 48 and counting in PICU

Diagnosis, surgeries, complications?

Owen has not been diagnosed yet. All genetic testing has come back negative. Owen is a twin and has cystic kidney disease, crainosynostosis, heart abnormalities, reoccurring aspiration pneumonia and had an emergency trach due to that. He had to get the nissen fundoplication g-tube and has chronic lung disease from that as well, so he is also on oxygen, and has had multiple blood transfusions. Owen has hearing problems, spine abnormalities, and underdeveloped brain tissue. He has upcoming skull surgery and kidney surgery.

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

Owen has been fighting from the beginning and is still fighting every day of his life. I was being monitored from 30 weeks for his low weight and kidney problem. After he was born, it has been an uphill battle, new issues, and infections every day. We have been very close to losing him and it’s heartbreaking to think about those times.  He has been through so much and continues to amaze everyone around him. The will he has is truly humbling. He has blessed our family more than words can explain, he has given us all strength we never thought we had. Owen is such a miracle we can’t wait to get him home to really enjoy his sweet spirit and infectious smile.

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

Owen’s super power of looking deep into your eyes and making your heart melt is one of his strongest. He is hiding away in his lair in the PICU getting stronger so he can do great things. He has hypnotizing powers as well. He has used them on his 2 year old sister to give him her binky and she was more than happy to do so and uses them daily on mommy and daddy to do pretty much anything he wants. Owen also has super healing powers as he has recovered from surgeries and infections better than anyone had expected. Super strength for sure, he fights sedation and the vent every time. Of course he is brave. And we can’t forget he has his twin brother sidekick at home just waiting for his return. He is truly our HERO!

What advice do you have for future NICU parents?

Take one day at a time! Rest and take care of YOURSELF so you can be there for you child. It is OK to miss a day. It can get very overwhelming and some days you just need time away from the hospital. Cherish every moment!

Skunkalicious

 Cassandra D ~ Super Hero Alias: Skunkalicious

Cassandra D

Age: 11 months old
Weight at birth: 1 lb 14 oz
Weeks gestation: 25 weeks
Time in the NICU: 94 days

Diagnosis, surgeries, complications?

Chronic Lung Disease
Bronchopulmonary Disease
10 Blood Transfusions
Pneumonia when a week old due to pic lines in chest. A surgeon had to get the lines in properly.
She had to be revived twice in one day when the pneumonia was at its worst.

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

Cassandra was born at 25 weeks on Oct 28th after I was hospitalized for a week, and was 1lb 14oz and 13 inches long. After 14 years of marriage, our fertility specialist had given up on us. I have PCOS, endometriosis, intrauterine septum and a fibroid. Cassandra is truly our miracle girl. At 24 weeks, I lost my mucus plug but without contractions, the hospital told me to stay home. The next day I had a monstrous bloody show, was admitted and given the first set of steroids and magnesium sulfate. At 3 cm dilated, I still wasn’t in labor and her foot was through my cervix. Once she broke my water, I’d have a c-section.

She managed to stay put until a week later when I woke up, peed, and she kicked the toilet paper when I wiped. After an hour of attempting to get the spinal tap to work, our specialist was forced to proceed with the c-section. As she was already guaranteed respiratory issues as a preemie, I wouldn’t agree to anesthesia because of the increased risk this presented. Although I screamed through it, I didn’t give in and allow anesthesia until after Cassandra was born.

After her birth, we found out that the septum that was dividing my uterus had regrown. Unbeknownst to everyone, Cassandra had run out of room and was literally kicking her way out. It took her 3 weeks, but my tenacious little fighter managed to do what she needed to survive.

Cassandra came out fighting and hasn’t stopped since. Initially she had to be on a ventilator and a surgeon had to get the pic line in. She contracted pneumonia from the ventilator and the temporary line they had to put in her chest. She almost died from the pneumonia, until they put her on a steroid regimen, which worked incredibly fast. Even when she was the sickest she was kicking and fighting the nurses whenever they made her upset. They were amazed at her activity level given her blood gasses, etc.

She’s had 10 blood transfusions and has chronic lung disease, but thankfully she is otherwise extremely healthy. She was in the NICU for 94 days and we were with her everyday except when we thought we might be getting sick.

Cassandra was the youngest gestational-aged preemie to successfully nurse at our hospital. We tried non-nutritive nuzzling at 29 weeks and the second she figured out where milk came from, she tried her hardest to nurse. When she sets her mind to something she doesn’t stop trying until she’s succeeded.

Cassandra came home on oxygen 24/7, was weaned down to oxygen only at night and a month ago was taken off oxygen completely. She is still doing phenomenally well. Except for her being not quite 15lbs at 11 1/2 months, you’d never guess what she’s fought and overcome in her short life. She’s my superhero!

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

Blues-Fighter (Her happiness is infectious.)

Super Strength (She literally kicked her way through my cervix.  Took her 3 weeks but she literally kicked her way out.)

Tenacity (see above)

Fighter (She was punching and kicking the doctor during the delivery)

Resiliency

Skunkalicious- She earned the nickname Skunk while in the Nicu. When she tooted, all the nurses went to the other side for a very good reason!

What advice do you have for future NICU parents?

When you can’t hold them, Read children’s books to them.  Your child knows your voice and will be comforted by it.  Go every day that you possibly can, even if you can only sit by their isolette and talk to them.  Your child knows if you’re there or not.

The Magnificent Mylee

Mylee H. ~ Super Hero Alias: The Magnificent Mylee

Mylee HAge: 4 years old
Weight at Birth: 2 lbs 6 oz
Weeks Gestation: 27 weeks
Time in the NICU: 120 days

Diagnosis, complications, surgeries?

Pulmonary Hypertension, Chronic Lung Disease, Congenital Hip Dislocation, and she had a very large Hemangioma that covered her entire left arm, and now Autism.

Why should your child be recognized as “Preemie of the Year”?

Mylee was given a 3% chance of surviving. I started bleeding and had to go on bedrest 6 weeks into my pregnancy with her and went in for my 20 week sex check and found out my water had broken at some point. They advised me to end the pregnancy and said that IF she did survive birth, she would have so many complications that she would most likely only survive a couple of months. Her lungs were almost completely non-existent. Now after 3 years on home oxygen, a 13-hour hip surgery and 4 years on VIAGRA…she is a happy, healthy, normal 4 year old. Her only diagnosis now is Autism. She is truly a SUPER HERO!!!!
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Brynncess

Brynn F. ~ Super Hero Alias: Brynncess

Brynn FAge: 5 months old
Weight at Birth: 2 lbs 1 oz
Weeks Gestation: 26 weeks
Time in the NICU: 97 days

Diagnosis, complications, surgeries?

Brynn arrived way earlier than we expected and every day she had to fight for her life. Some of the problems she faced were chronic lung disease, in abated for 2-1/2 months, fed through a feeding tube for 2-1/2 months, asd, heart murmur, NEC, spinal tap, multiple pic lines and blood transfusions, IV infiltrations, bad liver from being on the feeding tube for so long, immature eyes,  sleep apnea, and terrible reflux. When Brynn got discharged she came home with four specialists, ophthalmologist, gastroenterologist, pulmonologist, cardiologist, and goes to physical therapy weekly. Also, on a monitor for her heart rate, and sleep apnea.  There were many other infections, and problems that occurred the list could go on for days. I thank God for such a strong baby, who still battles these problems daily.

Why should your child be recognized as “Preemie of the Year”?

Our daughters difficult journey into life began before the emergency c-section that placed her in our  lives by the grace of God. Brynn went without nutrition for weeks due to an abrupt placenta and a dry umbilical cord. For weeks 24 and 25, a series of test had been done to try and figure out why she was failing all fetal movement. A decision was made, on week 26 Brynn was born. But, not at our local hospital and not in our state. Mommy and baby were transferred by the life flight team where an emergency cesarean would be performed. Brynn then spent the next 97 days of her life going through trials and tribulations to prove to us how strong she is. Brynn made an impact on many staff members and became the “oldest one of the class.” Powered by prayer from friends and family, the professional training of a wonderful NICU team, and a mommy and daddy driving over state line day and night, the three of us pulled through vicious cycles of a two-pound, under-developed miracle. Everything from continuous intubation, NEC scares, spinal taps, and infections, we never knew what tomorrow would bring, but feeding off of Brynn’s strength the three of us would get through it together. Brynn made a grand entrance into the world, and continues to brings joy to everyone she encounters daily.  Our story is truth that there is a God, and he does perform miracles everyday.

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Jazzin Josie

Josie H. ~ Super Hero Alias: Jazzin Josie

Josie HAge: 2 years, 8 months
Weight at Birth: 1 lb 15 oz
Weeks Gestation: 27 weeks
Time in the NICU: 100 days

Diagnosis, complications, surgeries?

Josie has chronic lung disease, and an immune deficiency. She had surgery in June of 2009 for port placement for her to receive her I.V.I.G and she just had surgery in October of 2011 to remove the port due to complications.

Why should your child be recognized as “Preemie of the Year”?

Josie is our miracle baby! She came into this world fighting and she wasn’t bcking down. She was born at 27 weeks weighing only 1 pound and 15 ounces and was 13 inches long. We were on the NICU rollercoaster for exactly 100 days. In those 100 days we were told many times that we would need to prepare to lose our daughter, but they didn’t know what she was capable of. Josie was breathing on her own when she was born and continued to do so with the assistance of a c-pap machine untill she developed two major lung infections, 4 weeks later that caused her to be placed on the vent for a month and and left the doctors and nurses baffled as to why after a month of the vent and numerous strong antibiotics Josie just could not get rid of these infections. These infections we were told would cost our precious baby girl her life if they could not find out why she was not improving fast! That is when her immune deficiency was discoverd. After several blood transfusions, I.V.I.G, antiobiotics, and patience, Josie finally was off the vent. Now for another bump. Because of the high use of the vent, and the numerous doses of strong antibiotics we were faced with the possibility that Josie may never hear or see. She indeed failed her hearing test and showed stage 2 signs of retinopathy. We had prepared ourselves for the worst with this. How were we going to be able to communicate with our daughter if she could not see or hear us? A couple months later, lo and behold after many many prayers, Josie passed her hearing test and her eye sight had corrected itself. We were elated! Today, Josie is almost 3 years old and preparing for pre-school. She continues to recieve her I.V.I. G. for her immune system and they tell us that this will more than likely be a life long issue.  Other than her small size (26 pounds), you would never know she was a preemie! She is very intelligent and doesn’t miss a beat! We have our miracle baby, and are amazed everyday at how strong she is!
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Luke Cheetowalker

Lucas N. ~ Super Hero Alias: Luke Cheetowalker

Luke NAge: 22 months
Weight at Birth: 2 lb, 1 oz
Weeks Gestation: 27 weeks
Time in the NICU: 123 days

Diagnosis, complications, surgeries?
Chronic Lung Disease, Stage 2 ROP, on oxygen for a year

Why should your child be recognized as “Preemie of the Year”?

Despite the fact he has been through more medical tests and procedures than most adults he has never stopped smiling and laughing. He is so silly, and such a happy toddler. He loves his baby sister, and is a people magnet with the most beautiful eyes. He is proof that miracles really do happen, and we are thankful every day for him and his health.
[Read more…]

Wonder Twins Batman and Robin

NICU Reunion, Family Celebration, Hand to Hold Birthday, Photo Contest

Maddox and Chase M. ~ Super Hero Alias: Wonder Twins Batman and Robin

Maddox and Chase MAge: 4 years old
Weight at Birth:  1 lb 9 oz and 2 lbs
Weeks Gestation: 25 weeks
Time in the NICU: 90 days

Diagnosis, complications, surgeries?
Severe prematurity, ROP, lung disease, apnea and PDA surgery

Why should your child be recognized as “Preemie of the Year”?

What happened at today’s baseball game is one of many examples of why my boys are preemies of the year. In our last game of the season, Maddox made a triple play which any baseball enthusiast knows that it is one of the rarest plays in the game of baseball. To help break down this amazing feat, here is a quick rundown of the play. Maddox was playing short stop when a boy at bat hit an air ball heading straight for Maddox. Maddox in his usual attentive self, caught the fly ball, then as another boy from the opposing team approached second base, he tagged the boy out then threw the ball to his team mate who was covering first causing three consecutive outs. Not to be outdone by his twin brother, Chase caught a ground ball and threw it to first base, which is a huge accomplishment for Chase because he prefers hockey. Today was an amazing day of great plays, hits and team work thanks to my preemies of the year. Before my dynamic duo was hitting balls, they were frail 23 weekers fighting for their life. At 23 weeks, my water broke leaving Maddox with very little fluid in his amniotic sac. The threat of early delivery also put Chase in extreme jeopardy. The night my water broke, the doctors told me that if the boys were to deliver at 23 weeks, they would have very little chance of survival or if they survived, they would suffer from lifelong disabilities. Because of my twin pregnancy and ruptured membranes at 23 weeks, I had to remain on hospital bed rest until delivery. Two weeks later, I developed an infection and the boys were delivered by emergency c-section. At 25 weeks, Maddox and Chase entered the world weighing 2lbs and 1lb 9 ounces. Instead of November 6, 2005 being one of the happiest, it was one of the saddest, scariest days of our life. Overnight, I went from joyful expectant mother to a mother who sobbed daily at their bedside in the NICU. Both boys suffered from lung disease, apnea, ROP and other illnesses that plague 25 weekers. On top of a long list of complications, the blood flow to Maddox’s heart was in jeopardy so at 28 weeks, he needed PDA surgery. After a 90 day stay in the NICU, and countless steps forward and more steps back, Maddox and Chase finally came home. Not only are they excelling on the field, but also in school. At a recent parent teacher conference, our very first one by the way, their teacher told us that they both ranked master/proficient in all curriculum categories. For years, I wondered why we weren’t lucky enough to have a story book beginning, but the story that is unfolding before us; one that is filled with sweet moments like today’s triple play or hearing that your boys are math whizzes at school makes the road less traveled that much more rewarding. [Read more…]

Boogie

NICU Reunion, Family Celebration, Hand to Hold Birthday, Photo Contest

Blake R. ~ Super Hero Alias: Boogie

Blake RAge: 21 months
Weight at Birth: 1 pounds 3 ounces
Weeks Gestation: 24 weeks
Time in the NICU: 122 days

Diagnosis, complications, surgeries?
Low Birth Weight, PDA (surgery), Pulmonary Hemmorhage, Chronic Lung Disease, ROP (RUSH disease), numerous blood transfusions

Why should your child be recognized as “Preemie of the Year”?

My preemie is a true hero. From the first few minutes of his life, he fought numerous odds. For such a tiny guy, his will and strength is truly amazing. Incredibly, he made it through a pulmonary hemorrhage at 36 hours of life. As his body struggled to survive with organs that were underdeveloped, he slowly but surely grew stronger each day. He later underwent PDA surgery. He also underwent an emergency laser eye surgery to help save his vision. He faced many challanges but continued to exceed expectations and statistics. He showed us strength on days that his father and I were weak. Even 21 months later, he is still amazing us with his strong will and huge heart. [Read more…]

Jackson the Gladiator

NICU Reunion, Family Celebration, Hand to Hold Birthday, Photo Contest

Jackson S. ~ Super Hero Alias: Jackson the Gladiator

Jackson SAge: 4 years
Weight at Birth: 1 lb, 15 ounces
Weeks Gestation: 25 weeks
Time in the NICU: 85 days

Diagnosis, complications, surgeries?
Incompetent cervix, PDA Ligation surgery, numerous infections within the first 3 weeks, over 10 blood transfusions.

Why should your child be recognized as “Preemie of the Year”?

Our Little, Little Gladiator was born at 25 weeks gestation. During the battle to survive, Jackson endured numerous infections. We had to collapse a lung to help it heal. Jackson was given not one but two rounds of surfactant and we started to run out of IV sites. Jackson received over 10 blood transfusions during his first three weeks of life and if it couldn’t get any more complicated… Jackson’s blood type is 0 negative. We thank God every day for Jackson’s ability to fight through all the odds that were against him. We also can’t thank everyone enough for their blood donations and the medical attention received. Jackson was on Nitric and Oxygen and ventilated for 9 weeks. Upon being released, Jackson is considered to have chronic lung disease (mild-moderate). However, this gladiator didn’t take the oxygen with him home; he left it in the NICU and chose to be released on an apnea monitor only. He also decided he wasn’t going to stay until his due date but wanted to be home for CHRISTMAS! December 17, 2006 Jackson was released from his 85 day stay in the NICU.

Jackson’s fighter instinct continued at home as he achieved the milestones we were working on with ECI (Early Childhood Intervention) such as crawling (12 months), walking (14 months) and talking at one month prior to his 2nd birthday which was when we graduated from ECI.

Watch out Russell Crowe, this Gladiator will take you on.

Jackson’s battle may have had a very rough start, but look at the little man now! This family is blessed to have their four year old boy with them. He loves to play with his brother, new sister and friends, read books with the family, go to parks and libraries and for the first time is able to go to “pre-K/mother’s day out program” and Sunday School!

Jackson the Gladiator has been mistaken to be a five year old by many due to his height….what a shock it is for people to find out that he was born at 1lb 15oz and 14 inches long.

Jackson the Gladiator like all micro-preemies and preemies have the strength of many just as Alfred Lord Tennyson said, “My Strength is as the Strength of ten, because my heart is pure.”
[Read more…]

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