Super Feisty Autumn

AutumnAge: 1
Weight at Birth: 2.9
Weeks Gestation: 30
Time spent in the NICU: 56 days

My Preemie Power Story:

Though she might be small, she be feisty. Autumn Rayne is a 30 weeker. She spent 56 long days in the NICU. In those first few weeks she had to fight with all her might to overcome gastrointestinal issues, breathing difficulty, jaundice, and a lot of A’s and B’s. Autumn definitely does things on her own time her own way. In the past year she has had PT and OT, wore a cranial helmet, and diagnosed with Benign Paroxysmal Torticollis that’s more rare and severe. None of this defines Autumn though, because through all of the ups and downs she is the happiest little girl We know. She can draw anyone in with her piercing blue eyes and her smile. She loves to be silly and make everyone laugh. She is a very determined little girl that also rules the roost or so she thinks. She has hit every milestone and then some. Autumn will defeat anything put in her path while smiling.

Super Hero Characteristics:
Piercing blue eyes, Infectious smile, and Feisty attitude

Dynamic Duo: Outstanding Owen & Bionic Bryce

Owen and BryceAge: 9 months
Weight at Birth: 3lbs 13oz and 3lbs
Weeks Gestation: 30w 5d
Time spent in the NICU: 6 weeks

My Preemie Power Story:

We found out I was pregnant with twins at our first doctor’s appointment in August 2013, I was 8 weeks along. We were so excited and shocked! My husband left for a 6 month deployment to Afghanistan a short 3 weeks later. My due date was March 25th so we had high-hopes he would make it home in time to see the birth of our identical twin boys, but knew he would miss most of my pregnancy. My pregnancy was 100% “by-the-book”; I experienced every symptom, perfect vitals and weight gain, and the babies were growing and healthy as could be. So when my water broke at 30 weeks I was in complete shock, this wasn’t in the book and my husband was still half way around the world.

I arrived at the hospital where I was told, “You probably just wet yourself, its common. There’s no way you are in labor.” A quick check revealed I was 2cm dilated and contracting every 2 minutes. I was quickly put in a room where I was hooked to every monitor imaginable and told I would be on strict hospital bed-rest until the babies were born. They began magnesium sulfate to slow my labor and steroid shots to help develop the boys’ lungs in preparation for a premature birth. The following 2 days were very scary, the magnesium sulfate was working against my body and I was having a lot of trouble breathing. Around 7am on January 13th we were told that Baby B’s heart rate was dropping and that it was time for an emergency C-section, I was 30 weeks 5 days.

At 7:55 we welcomed Owen into the world at 3lbs 13oz followed by Bryce, weighing 3lbs. Owen and Bryce spent a total of 6 weeks in the NICU. Bryce was intubated for a few days, they were both on C-Pap, then Bi-Pap, then high-flow oxygen that was slowly weaned down over the weeks. Both boys had jaundice so were under the bili lights for a few days, caffeine for apnea of prematurity, and had multiple blood transfusions for anemia.

At 3 weeks both boys developed NEC. Owen had developed stage 2 medical NEC so was flown to a bigger hospital an hour, 3 hours by car. Bryce remained at stage 1 so they kept him in our hometown. I now had a baby where we lived, one 3 hours away, and a husband in Afghanistan. We utilized Red Cross to get my husband home at this point. Owen was on antibiotics for 10 days before being flown back to our hometown where they boys were discharged 4 days later. Our family was finally together for the first time! Since being discharged the boys have been doing wonderful! They are both gaining weight, eating great, and meeting their milestones for their adjusted age. We currently have ECI therapy once a week. I love our superheroes so much and love sharing their story of bravery with everyone!

Super Hero Characteristics:
Bravery- Owen and Bryce have been through more than most grown adults have been through medically and continue to amaze the world around them!

Strength- Owen and Bryce are super strong! They have the strength to overcome anything that comes their way.

Power- Owen and Bryce have the power to make everyone around them smile!

Spontaneous Samantha

SamanthaAge: 11 months
Weight at Birth: 3lbs 3 ozs
Weeks Gestation: 30
Time spent in the NICU: 37 days

My Preemie Power Story:

My mommy had lots of pain in the middle of a day, 10 weeks before I was due to be born. Mommy went to the hospital and they were unsure of what was wrong.  The hospital that mommy was at was unable to help her.  They wanted to fly her to a hospital with a NICU, but it was too foggy.  Mommy had to travel to the other hospital by ambulance.

Upon arriving at the new hospital the doctors became very concerned.  The nice doctor said “It’s go time,” and 13 minutes later I was born.  Another doctor had to revive me in the OR.  After he helped me they put me on a cart and rushed me to another part of the hospital.  On the trip, they stopped briefly and introduced me to a man on crutches.  He was my daddy. [Read more…]

Mighty Beans

Elizabeth & AdrianaAge: 14 months
Weight at Birth: 2.2lbs and 2.4lbs
Weeks Gestation: 30
Time spent in the NICU: 5-1/2 weeks

My Preemie Power Story:

My identical twins were born at 30 weeks from an emergency c-section. When they were born, both girls were supposed to receive cpap. Elizabeth refused to wear it. She would stop breathing and after 4 attempts the doctors said forget it. She needed no oxygen or assistance breathing. Adriana needed the cpap with forced room air no oxygen. After 3 days, she needed no assistance. My daughters were also the first in the state to receive donor breast milk since my supply wasn’t enough. While they were in NICU, I was alone in my experience. They graduated each NICU milestone quicker than anticipated. They were sent home ahead of schedule. The girls are the most amazing preemies I have ever seen. They had to overcome the obstacles and fight from the very beginning. I didn’t know whether they were going to survive. I had very little support since no one in my family has ever been in this situation. I joined NICU groups and even went to support groups, so I could learn and find out my options. From my experience in the NICU, I was able to provide a friend with information that I had learned from my experience that helped her. She often came to me for advice. I’m glad that I could help her. I hope to someday continue my education to work in a NICU as a nurse to help out babies as mine were helped in their time there.

Super Hero Characteristics:

Super strength, super stamina, kind hearted, fast healing

Hurricane Hunter

HunterAge: 17 months
Weight at Birth: 2 lbs
Weeks Gestation: 30
Time spent in the NICU: 9 weeks

My Preemie Power Story:

Hunter has been determined to be here from 3 weeks pregnant,I had a terrible pregnancy with constant bleeds, three massive ones, lost his twin and three times we were told he was gone..we even told family and friends but he hung in there for 30 weeks. He was so small, especially at 11 inches long, he was on cpap for 7 weeks and had the typical NICU stay with a hernia surgery at 4lbs. He is now 17 months and, like his name, is a little hurricane, granted his immunity is terrible, but he is a joy and a little celebrity here! I wouldn’t change the last year for anything. He has taught me not to discount things when you are told to give up hope, sometimes things just stick around!!!

Super Hero Characteristics:

Bryson The NICU Warrior is exuberant, there is not a person who meets him who isn’t instantly captivated by his larger than life personality! He is resilient, already having overcome so many obstacles in his short life and gaining strength from each and every obstacle he has faced and continues to face. Most of all, he is inspiring! He gives hope to those who hear his story, he will make you believe that anything is possible!

Isaac the Incredible

IsaacAge: 3 years
Weight at Birth: 4 lbs 5 oz, 16 inches
Weeks Gestation: 30
Time spent in the NICU: 35 days

My Preemie Power Story:

Isaac is what we call our rainbow baby, the youngest of 3 older sisters. His sister before him was still born. So when I found out I was prego with Isaac I didn’t let anyone know right away. At 20 weeks we found out we were having our first boy. At 28 weeks I started going into labor, went to the doctor, stayed in the hospital for 2 days, and got sent home. The next morning my water broke, got air-vaced out to the hospital and stayed there. At 30 weeks I started developing a fever, so on January 9, 2010 they decided it was time for Isaac to make his way into the world so I was rushed down for a c-section. I seen him for a few seconds and they rushed him to the NICU. I finally got to see my baby boy the next day and hold him. He was hooked up to a lot of machines and has tubes in his nose and about 4-5 lines coming out of his stomach with antibiotics and other meds. He also developed  jaundice. He got all the lines out about after 2 weeks, but it took him longer to be in a regular crib because he could not maintain his own body temperature for a while. He had a heart murmur but is doing better. He had quite a few brady’s while we were in NICU. Took him a while to learn how to use a bottle but when he got the hang of it there was no stopping him. He is now a healthy, happy 3 year old, who has finally reached 30 lbs. He is our only son. And like I said he is our Rainbow baby, he is the rainbow that has came to us after the storm.

Super Hero Characteristics:

Incredible
Intelligent
Inspiring

Terrific Tommy

TommyAge: 6 months
Weight at Birth: 4 Pounds 8 Ounces
Weeks Gestation: 30 weeks 5 days
Time spent in the NICU: 38 days

My Preemie Power Story:

On Sunday March 24th my seemingly uneventful and perfectly normal pregnancy came to a screeching halt. I woke up feeling very strange that morning and by the afternoon I was sure that my water had broken. I was only 30 weeks. As this was Sunday I couldn’t call my doctor so I opted to call the hospital instead. They told me I was fine, to rest, and that I didn’t need to come in. A half hour later we were on our way to the hospital because I was sure that this wasn’t normal. Once we arrived the staff confirmed that my water had indeed broken and they administered antibiotics, magnesium and a shot of steroids. 24 hours later I was given another shot of steroids and taken off magnesium and antibiotics. 3 hours later I was dilated to 10 and in full blown labor. I hadn’t even had my baby shower yet!

Just before midnight, March 25, 2013 Thomas made his expedited arrival. The doctors had prepared us earlier in the day that the baby may not cry when he was first born…happy to say the doctors were mistaken and Tommy announced himself quite loudly. [Read more…]

Halle-Bo-Balle

Halle ~ Super Hero Alias: Halle-Bo-Balle

HalleAge: 10-1/2 months
Weight at birth: 2 lb 7 ozs
Weeks gestation: 30 weeks
Time in the NICU: 72 days

Diagnosis, complications, surgeries? 

Turners syndrome, coarctation of the aorta, along with other heart defects. Had heart surgery at 13 days old. Weighing in at 2 lbs 4 oz.

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

When Halle was in utero, we were told that she most likely had Down syndrome at 8 weeks along. She had a cystic hygroma. That diagnosis changed at 14 weeks. When I went in for bleeding. Our tiny baby girl had become septic, and her body was so swollen that it was failing. Her heart was barely functioning. That diagnosis devastated us. We had to have ultrasounds every few days to make sure her heart was still beating. We saw a lot of specialists and they all came to the same diagnosis. A few weeks past and we decided to get an amnio done. The fluid they pulled out had blood in it and they were worried that it might alter the test results. A few days later my water broke at 19 weeks!! My heart sank again. As we heard all of the problems that happen when your water breaks so early. They strongly encouraged us to terminate. I was stubborn and I wanted to give her the best chance possible. So I went on bedrest.

We did schedule an induction a week later. I went in to the doctors the morning of the induction, to see if by any chance there would be any fluid. The ultrasound tech was as nervous as I was. There was 3 oz of fluid, so my doctor said we could make the choice not to have the induction. We opted out. As weeks went by she got better; there was more fluid and her swelling was going down. Her heart was functioning better. We saw the pediatric cardiologist several times. Until my water broke for the second time, at 29 weeks. This time I was hospitalized, I lasted 6 days before my contractions started, I had her on November 26 at 12:00. She surprised us all and came out crying! She did well the first 2 days. Until we got the call she had to be air lifted to primary children’s to have her heart surgery. We had many downs with a few up in the Nicu. She had several infections and the heart surgery as well as feeding issues.

She came home at 4 lbs 3 ounces, she has had an extremely hard time gaining weight. There are future heart surgeries in her future, as well as growth hormones and lots of specialist. She’s here and that’s what we are so thankful for. She is crawling, and getting better at eating, she gives kisses and high fives, claps her hands. To top it all off she’s only 9 lbs 3 oz. [Read more…]

Elevi the Sparkler

Elevi J. ~ Super Hero Alias: Elevi the Sparkler

Elevi JAge: 12 weeks
Weight at birth: 2lbs 13oz
Weeks gestation: 30 weeks
Time in the NICU: 42 days

Diagnosis, surgeries, complications?

Prematurity, ROP, reflux, primary aspiration, cardiology issues

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

Elevi should be preemie of the year because of her strength, her will to live. My entire 30 weeks of pregnancy were tough but my Elevi made sure to let me know she was ok throughout. I was considered high risk which meant lots of ultrasounds. My sparkler had a way of showing me everything was going to be ok was by showing off with her flips, her punches, and kicks. She knew we were watching her and she gave us a show. I went into preterm labor at 20 weeks and was already 3cm dilated. The doctors told me to expect my baby mid August. Elevi did not like that idea and my water broke the last week of June at 28 weeks. I was put on strict hospital bedrest. The 2 weeks I was on bedrest awaiting her arrival, Elevi became very familiar with the nurses. They called her a little sparkler due to her constant moving and coming off the monitors. It usually took 3 nurses to try and find her before she was put back on. On her birthday, I knew she was coming, and I knew I did not want to deliver a baby on a holiday, but she knew she wanted fireworks for her birthday since she was like the nurses said, a sparkler. In the NICU the name followed and she pulled at everyone’s heartstrings by showing just what she is made of, determination.

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

Strong~ Elevi never needed to be intubated like doctors expected. She is still on oxygen, and is working with a pulmonary team, a cardiologist, and gastroenterologist, but so far EVERYONE she has met can see her strength.

Determined~ Elevi has had her own plan in effect since was in utero. She was determined to be born on July 4th despite her mom’s wishes. Her mommy told the doctors she wasn’t going to push a baby out until after midnight, so Elevi turned breech. She was born at 11:31pm by cesarean and got her holiday birthday.

Outspoken~Even though Elevi does not know actual words, she has found her voice. She is able to let us know when something is wrong, when she wants something or someone, when is is uncomfortable, and most of all when she is hungry.

What advice do you have for future NICU parents?

Know it’s not your fault your baby is in the NICU. Find someone who is in the same situation or has been. Trying to talk to someone who has never been where you are is tough and they don’t know how to help. Take care of yourself and know your baby is in safe hands.

Peanut & Butter to the Rescue!!!

Berlyn and Madisyn K. ~ Super Hero Alias: Peanut & Butter to the Rescue!!!

Berlyn and Madisyn K.Age: 3 years
Weight at birth: 3 lb 1 ozs and   1 lb 10 ozs
Weeks gestation: 30 weeks
Time in the NICU: 45 and 58 days

Diagnosis, surgeries, complications?

IUGR and Reverse-end diastolic flow in twin B resulted in delivery, transfusions, PDA, PFO, TPN, failure to thrive,vent, A&Bs, coombs positive, jaundice, Brain bleed grade I, Ng tubes

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

From the beginning of time super heroes have roamed the earth in secrecy. Saving lives without asking for anything in return.  Peanut and Butter came to the rescue in a desperate time of need.  When their parents had almost given up hope of ever holding their own children in their arms, they came and saved them. They surmounted all odds, growing in treacherous conditions to bring this couple happiness. We need to thank these heroes for saving this couple from such an empty life. And for bringing joy to all those in contact with them.

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

A hero is an ordinary person who does extraordinary things. From the beginning Berlyn & Madisyn have been EXTRAORDINARY. They started off in a petri dish, where they outgrew 12 other cells before making their way to the womb (IVF). At 23 weeks Madisyn was diagnosed with IUGR. She wasn’t receiving the nutrients she needed and was a month behind in growth. The pressure in her umbilical cord was too high. She was DETERMINED to survive past the 26 weeks doctors hoped for. Her PERSEVERENCE got her and her sister to 30 wks. Berlyn SACRIFICED a full term pregnancy so that Madisyn had a chance to live. She could have made it to 40 wks if her sister had died. They exhibited FORTITUDE through their 6 and 8 week stays in the NICU away from their Mommy and Daddy. They ENDURED the poking, prodding, and all the other things associated with being premature. Three years after their birth story they still exhibit these characteristics. When Madisyn cries, Berlyn SELFLESSLY gives her “Teddy” to make Madisyn feel better. They always make sure the other is not forgotten about. “Where is sister’s cracker” or “Sister wants the blue crayon.” When we are out, Madisyn is always ready to spreads the love.  She tells the cashier “love you” or they give a random lady at the store a hug. With their big smiles and bright eyes, they always know how to brighten your day. These girls are extraordinary in every way! They are my HEROES!