Energy Absorber

NathanAge: 2
Weight at Birth: 2lbs 15ounces
Weeks Gestation: 31
Time spent in the NICU: 2 months

Preemie Power Story:

Nathan was born at 31 weeks and has always been a fighter. I see the glow in his eyes each and everyday never giving up. He is my inspiration and has showed me the true meaning of life. I can’t describe the first time I got to hold him after 2 weeks of being in protective isolation. He was so fragile,yet so magnificent. When we look at a preemie, they are no different than an ordinary baby. They still need love and affection. As Nathan grew older he failed to meet his milestones and they told me this was normal for a preemie. But like any mother could sense, I knew something was different. At age two, we still had no words. Nathan is now diagnosed with level 3 autism. Does this make him any different than any other child? No, he is my life and we will fight to become stronger like we have since day one. Nathan is one of the sweetest boys and loves to laugh. He can make a frown turn upside down on anyone’s face. He has a beauty that makes me a proud mommy. He is a big ball of energy and has an appetite I’ve never seen. He is my life, my everything.

Super Hero Characteristics:

Strong courageous fighter

Little Peanut

JaxonAge: 3 Months
Weight at Birth: 2lb 8 oz
Weeks Gestation: 31w6d
Time spent in the NICU: 53 Days

My Preemie Power Story:

I gave birth to my son, Jaxon Connor on Monday, June 16, 2014 5:35pm at 31w6d gestation, he weighed only 2lbs 8oz and was 35cm long. There were complications with my placenta and the way it was functioning. My son’s stomach was small, smaller than it should be at his gestational age which ended with me having to have him early. I didn’t even get to see my son until the day after, and didn’t get to hold him until he was 6 days old. I always thought having a preemie just meant a tiny baby, I never expected something like this to change me so much. For me, crying in public is an embarrassment, but the first time I saw him in his isolette I cried, for a very long time, in front of nurses, doctors, and strangers. My heart was outside of my body and I couldn’t do anything for him at the time. I watched him fight and grow and get stronger every day! His struggles while in the NICU included breathing issues which landed him back on the Cannula off and on and I had troubles feeding him, I would get so frustrated and disappointed that I couldn’t get him to eat or burp. By the time it was ready for him to go home, I was very worried and scared that he wouldn’t eat and would have to go back to the hospital. 3 Months now and I don’t have any trouble feeding him or burping him, he is 9lbs and still growing like a weed. I am constantly going through his old pictures and his transformation is so inspiring. I am so proud of my son and amazed at his journey and I can not wait to watch him continue to change!

Super Hero Characteristics:

Resilient, Brave, and Determined.

Cyd the Dynamite Kid

Cydnee ~ Super Hero Alias: Cyd the Dynamite Kid

CyndneeAge: 3 months
Weight at birth: 3 lbs 6 ozs
Weeks gestation: 31 weeks
Time in the NICU: 45 days

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

Cyd the Dynamite Kid was born on July 5th. Jealous of all the attention devoted to fireworks on the 4th of July, Cyd quickly maturized and ceased an opportunity to claim her own independence just one day after Independence Day.

On July 3rd, two days prior to Cyd’s birth, Cassie “The Bombshell” (Cyd’s mother) had an appointment with her doctor in which she told the doctor that something was different with her pregnancy. She felt like something was wrong.

A complete exam was performed in which all tests were negative—including an ultrasound, pelvic exam, and non-stress test. Cassie “The Bombshell” was told that she was the “poster child of a perfect pregnancy.” Two days later, while laughing, Cassie’s water broke. “Combustible” Clif (Cyd’s father) insisted that the “water” must have been urine.

Little did Cyd’s parents know the events that would soon take place. As nature began to reflect Cassie’s pain, the sky began to darken and the rain began to pour. “The Bombshell’s” pain was soon unbearable. “Combustible” Clif insisted that an ER visit was necessary. 15 minutes after arriving in the Emergency Department, physicians rushed Cyd’s parents into the Delivery Room. “The Bombshell” was 8cm dilated, and the Dynamite Kid’s fuse was short———– the “Boom” was inevitable. Doctors quickly informed Cyd’s parents of all potential problems that could encompass a 31 week old preemie. Flight Care was notified that a transfer was imminent.

Moments later, Cyd the Dynamite Kid was born. Weighing just 3lbs 6oz, and 9 weeks earlier than expected, Cyd was born with fully developed lungs, fully developed organs, and without any other complications. Cyd the Dynamite Kid entered the world in dramatic fashion with a “Boom” heard in two different states (as family members from Mississippi and Louisiana rushed to the hospital). Enduring an unexpected traumatic birth and 45 days in the NICU, Cyd the Dynamite Kid should be recognized as this year’s “Preemie of the Year.” [Read more…]

Porkchop

Brooklyn T. ~ Super Hero Alias: Porkchop

Brooklyn TAge: 22 months
Weight at birth: 3 lbs 8 ozs
Weeks gestation: 31 weeks
Time in the NICU: 51 days

Diagnosis, surgeries, complications?

breathing troubles (2 doses surfactant), anemia(blood transfusion) and slow feeding (feeding tube), enlarged kidneys, and apnea.

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

At 20 weeks I was diagnosed with complete placenta previa putting Brooklyn’s life in danger, all while her father was serving our country in Iraq risking his life also. She fought hard while her oven was fighting against her. She still is small and is growing to be a very feisty little girl with 4 older siblings. She is an army strong child. The NICU nurses nicknamed her porkchop for her at one time chubby cheeks.

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

strong, strong-willed and persistent little girl

What advice do you have for future NICU parents?

Be prepared for a roller coaster ride.  There will be up days and down days. And be there for every procedure and every moment you can.

ThunderEli

Nayeli M. ~ Super Hero Alias: ThunderEli

Nayeli M.Age: 2 years
Weight at birth: 3lbs 10 ozs
Weeks gestation: 31 weeks
Time in the NICU: 33 days

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

Nayeli was born early because I am a diabetic and during my pregnancy I had preeclampsia. During my pregnancy my conditions put a lot of stress on her as she grew in me. She didn’t let my medical conditions stop her though. She continued to grow strong and normal. She was very determined to let us all know she was meant to be here and to help save me. Because of my angel I now see that obstacles may be tough but you keep fighting. I now fight diabetes and recently had a heart attack. Now every time I look at my big baby girl she reminds me of what I am fighting for.

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

Tough, courageous, strong-willed, fearless and most of all she is super lovable and caring.

What advice do you have for future NICU parents?

It’s a tough position to be in and you are going to feel helpless. Remember that in the NICU they are in the best place they can be for the time being until they are at their full strength for them to go home. Pray a lot and never leave your baby’s side. They need you more than you need them. God Bless you and your baby(s).

Amazing Grace

Grace S. ~ Super Hero Alias: Amazing Grace

Grace SAge: 14 months
Weight at birth: 4lbs 2oz
Weeks gestation: 31 weeks
Time in the NICU: 48 days

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

My Amazing Grace has lived up to her name since her unplanned early entrance to our world. We rode the NICU roller coaster like many other parents but through it all her strength and fighting spirit got us through. She is feisty and opinionated and has never let her two month delay hold her back. Instead it has been more like a head start for her! With the loss of my brother a few months ago, Grace has been the light at the end of the rainbow for my parents. She gives us all a reason to face the day no matter how dark and cloudy it may be. She is our super hero.

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

Courageous
Independent
Leader

What advice do you have for future NICU parents?

Ask a lot of questions. In this case it is more true that knowledge is power than ever before. Be your childs advocate. Read, sing, and talk to your baby but don’t be offended if staff asks you not to or even not to touch your baby. Its the most un-natural feeling in the world to not touch and hold your baby, but too much stimulation is not good for a preemie.

Desinee and Amy: The Comfort of Knowing You’re Not Alone

Evan, Photo courtesy Dwyer Familyby Amy Carr, Helping Hand Peer Mentor

“Fortunately, not everyone knows another parent who has spent time in the NICU. Unfortunately, when you are that parent, you need someone who has been there to answer your questions and remind you that the feelings you feel are normal,” shared Desinee, a parent who was matched with a Helping Hand peer mentor from Hand to Hold. “The NICU can be a lonely place even when you have the support of friends and family like we did. You still feel alone because no one else quite understands what you are going through. Hand to Hold matched me up with someone who understood the ups and downs and who had been where I was. She’s been an amazing resource and shoulder when I’ve needed it.”

Desinee is the proud mother to Evan who was born at 31 weeks and who spent 26 days in the NICU. They were fortunate to have a relatively uneventful NICU stay and her son has thrived since coming home. I was matched with Desinee because she had a very similar experience to my own. My daughter, Ella,  was born at 35 weeks almost 7 years ago. Her early birth was a complete surprise and unexpected complications led to her 10-day NICU stay.

The experience of having a child born early and their subsequent hospital stay remains with parents like us for longer than most of our friends and family realize. It takes time to work through all that and realize that the complicated “stew” of emotions NICU parents like us face are completely normal. It was a trauma, afterall!  Healing takes time, but it does come.

I was so honored to be able to support Desinee during part of her NICU journey after she brought her son home. Sharing our mutual experiences and feelings was helpful for us both. Even though I didn’t know anyone who had a baby born early when my child was in the NICU, I appreciated the opportunity to lend a helping hand to a fellow mama – if nothing else to let her know that “Yes, I know exactly how you feel!”

 

Super Twinies!

Madison & Makenzie B. ~ Super Hero Alias: Super Twinies!

Madison and Mackenzie BAge: 2 years old
Weight at birth: 3lbs 6oz and 3lbs 4oz
Weeks gestation: 31 weeks
Time in the NICU: 42 & 49 days

Diagnosis, surgeries, complications?

31 weekers, One baby had e-coli which needed a spinal tap, sleep apnea and breathing issues

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

In my eyes after going through what I went through all preemies should be preemies of the year 🙂 However, my twins should be recognized as “Preemie(s) of the Year” because of their life because given the worst hands of cards they managed to make our home a full house in weeks. Born at 31 weeks due to Baby A placenta abruption, our family was told this whole thing will be a 50/50 battle. As with any and all preemie families, everyday is a new battle, victory and roller coaster. Our girls pulled through and pulled us through what we thought was a never ending pain feast. In their 6 and 7 week NICU journey myself and my family knew true love, faith and the precious gift of life.

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

Madison’s Super Hero characteristics are strong, charismatic, fighter, and brave.

Makenzie’s Super Hero characteristics are fighter, fast as lightning, brave, and strong.

Warrior Princess Jasmine

Jasmine S ~ Super Hero Alias: Warrior Princess Jasmine

  • Jasmine SCurrent age: 5 years
  • Weight at birth: 4 lbs
  • Weeks gestation: 31 weeks
  • Time in the NICU: 62 days

Diagnosis, surgeries, complications?

Fought Group B Strep
Fought Bacterial Meningitis and because of this and the fact it was misdiagnosed she….
Ended up with Hydrocephalus
Has had 3 brain surgeries
Lost her hearing
Had Cochlear Implant Surgery
Has Global Delays
Has Brain Damage
Etc….

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

Warrior Princess Jasmine was born at 31 weeks gestation but healthy! She was doing well in the NICU when she suddenly had blood in her stool. The pediatrician who was caring for her took some samples and sent them off and when everything checked out ok, he felt she was fine. After a week or more of this, WE were getting worried! The pediatrician kept saying because she was gaining weight and tolerating her feeds she was fine!

I went in to the NICU to visit her one day (she was approx. 4 weeks old at this point) and she was WHITE as a ghost and you could see all the veins in her body, I was sick to my stomach! I asked the nurse what was wrong with my baby and she told me Jasmine had been crying for a couple of hours so she had the pediatrician come take a look at her, but he once again said she was fine! I sat there holding her and bawling my eyes out! If I would move the slightest bit, she would moan in pain. It was heart wrenching. I knew something was terribly wrong! I asked the nurse why does she look so white? The nurse replied she just looks white to you because she is wrapped in a white blanket! WHAT?

After a few hours of witnessing her in pain I had to go home because I had to feed my family (I have three other children) but planned on going back up to see her after dinner. It was hard to leave her! I never got to eat, I received a phone call that she was being emergency transferred to Children’s Hospital! The pediatrician figured she had a twist in her bowel! My mom, dad and I prayed over Jasmine.

When Children’s hospital’s EMT got there, they had a very different attitude than the pediatrician. All they kept saying to us was “You have a VERY sick baby!” They sped off full lights and sirens.

When we arrived at Children’s hospital, we waited in a private room for over 3 hours while a team of 10 people stabilized her. They kept coming in and out giving us updates saying not to leave as they weren’t sure if she’d make it!

Later we were told, she tested positive for Group B Strep (late onset) and then the next day we were given the worst news ever, it was bacterial meningitis! Our poor baby, all this time she had been suffering through meningitis! Now she was given a slim chance of even surviving!

Being the warrior that she is, Princess Jasmine beat the odds and survived this terrible illness that so many don’t survive! She has also beat many other battles because of all of this!

She is and always will be OUR super hero!

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

Jasmine is a tough, brave, determined little warrior princess!

Note (posted 10/22/12):
I just want to thank everyone for their votes and remind you that you can view a video montage that I made up of Jasmine’s journey at the following link! It has pictures of what she looked like when she was going through all this, will help you understand what she really went through and what she has been through since.

What advice do you have for future NICU parents?

TRUST YOUR INSTINCTS! Be the voice for your baby! Don’t be afraid to ask questions!!

Always have a pen and paper in hand when talking to any professional in the NICU so you can write things down as you tend to forget what you’ve been told! Also write down questions you want to ask so you don’t forget when the opportunity comes up!

Jude the Ad”vent”urer

Jude S

Jude S ~ Super Hero Alias: Jude the Ad”vent”urer

Current age: 9-1/2 months old
Weight at birth: 4lbs (including 10z tumor)
Weeks gestation: 31 weeks 0 days
Time in the NICU: 111 days
Hometown: Kansas City, Kansas

Diagnosis, surgeries, complications?

Oral Teratoma, PDA, Obstructive thrombus, Progressive Posthaemorrhagic ventricular Dilatation (IVH grade 4s), Choanal atresia, Aspiration pneumonia, Cholestasis, GT/fundo, VP Shunt, Vent Trach dependent, Digestive complications. Removal of Teratoma, plus multiple additional surgeries. Multiple blood transfusions. Lung problems. Development delays. Among other things.

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

Jude the Ad”vent”urer should be Preemie of the Year because of his ability to defy all odds. Before Jude was even born, he had to demonstrate super hero abilities to survive. Doctors told us that less than 1% of babies born have oral teratomas and of those babies a finite few are born with a teratoma as large as Jude’s. Multiple specialists warned that Jude would likely not survive.  If he did, his quality of life would be pitiful. Jude came early at only 30 weeks. We rushed to the hospital after going into labor. The doctors tried to stop the labor process but within 12 hours, Jude was ready to come out. He was born with a 10 oz tumor (3/4 the size of his head) growing from the roof of his mouth and descending out of the mouth. He was delivered via emergency exit procedure, and was, from what we know, the first successful emergency exit procedure. During delivery, a tracheostomy tube was placed and he was hooked to a ventilator. Days after birth, Jude experienced two grade 4 inter ventricular hemorrhages (brain bleed) as well as an open PDA. In addition, Jude’s primary physician that diagnosed the IVHs, proposed that the likelihood of developing Cerebral Palsy as a result of the IVHs was almost inevitable. Days before the removal of the tumor, doctors discovered brain clots on each side of Jude’s brain. These clots, if left untreated, would cause enough damage to the brain to eventually lead to death. Jude would require inter muscular Lovinox® injections twice daily for the next three months. The tumor was surgically removed shortly after, approximately one month after his birth. Due to damage from the tumor, Jude has several oral and nasal malformations. Following the surgery, Jude had to wear a custom brace 23 hours a day for two weeks on his head which reshaped his jaw-line, which was terribly malformed, caused by the weight and size of the tumor. Due to two different cases of aspirated pneumonia, the doctors felt that Jude required a fundoplication in addition to the g-tube placement. His stomach was extremely small. The doctor said it was the size of a blue berry. He was on a continual 24hr feed through his g-tube, with his stomach having to be vented at all times. Because of the tumor and pneumonia, Jude was placed on an oscillator multiple times. At almost four months, Jude was sent home fully dependent on the vent, oxygen support, and on a 22hr vented feeding. At six months old, Jude had a shunt placed in his brain to combat hydrocephalus, and enlarged ventricles. Jude is currently weaning off the vent and decreasing his feeding time. In the next few years he will have multiple surgeries to repair the damage the tumor has done, in hopes to allow him to breath and speak. He will also continue multiple therapies. Jude continues to astonish the doctors with his ability to overcome.

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

Jude’s adventurous: Jude laughs in the face of danger! There is nothing too big for Jude to overcome. When Jude sets his mind to something he does it. Jude enjoys observing his surroundings, he eagerly searches the room. He will spend hours exploring the things around him. Jude has had many adventures in his life and always comes out stronger. We were told he would make little if any noise around his trach, Jude has not stopped making noise. Each visit to the doctors or hospital stay Jude takes on the adventure with eyes wide open, focused and a smile.

Jude’s Unconditional Love: Despite painful operations and an overall uncomfortable life style, Jude continues to spread joy with his infectious smile and comedic wit. Jude loves not only life but everyone he meets! Several of his allies in the fight, or nurses, have remarked that he is quite possibly the happiest baby they’ve ever seen. We are told again and again by countless people that a mere picture of Jude did more to brighten their day than anything else could. He has faced several painful surgeries and daily routines and kept a cheerful smile the entire time. He will smile at anyone that looks at him till they smile back and then he will show you what amazing things he can do. He is fueled on by the cheers of his people and tackles each villain as they come.

Jude’s indestructibility: Before his birth doctors speculated that he would likely not survive birth. When Jude was born, however, his indestructibility only increased. He then took on several surgeries and procedures, some of which were quite dangerous, and all of them painful. As with most superheroes, Jude has been placed in situation after situation which has tested his indestructibility only to come out on top. Jude is the only baby I know who will smile at the nurse after he’s been given a shot. “I’ve never seen anything like this” seems to be a common saying amongst the doctors when speaking in regards to Jude which is typically followed by “of course, it’s Jude.” Jude has come leaps and bounds from where he was and where they predicted Jude to be. Not only was he a rare baby before birth but in every situation, no matter how big or small, he continues to make his own way. Jude refuses to fall into line and is determined to continue making life exciting for those with him and those reading about him. He, like all superheroes, makes the stories worth reading.

As every super hero has an arch-enemy, Jude takes on adversity and misfortune using his super powers that are expected from any super hero. He’s craftier than a guy with a mullet, nobler than a pure motive, able to leap small buildings with a single bound (toy buildings with the help of his daddy, of course)…he’s Jude the Ad”vent”urer!

What advice do you have for future NICU parents?

Write down something every day, good or bad. The days seem to fly by and stand still all at the same time and you think you won’t forget a single second. Take time to be still and enjoy your baby. Make fun memories. And remember everyone is fighting together for your precious baby!

Site last updated August 16, 2017 @ 11:03 am