Super Sam

SamAge: 5 months
Weight at Birth: 1 lb 6 oz
Weeks Gestation: 23 weeks
Time spent in the NICU: 118 days

My Preemie Power Story:

Sam was a surprise pregnancy after being told I could not have children. His due date was August 25th. On April 26th at 22 weeks pregnant I went into labor. I was transported to the University of Iowa Hospital and clinics. They were able to stop labor and get me steroids and keep me pregnant for 3 more days. On the 3rd day I developed an infection and he had to come. On April 29th at 245 pm Samuel entered the world. Prior to his birth the NICU staff let me know that if he was not fighting and responsive they would not try to resuscitate him. Luckily he was. His APGAR score at 1 minute was 2 and at 5 minutes was 7. He was born septic with Ecoli and was very sick. We were in Bay 1 the most critical of bays for 3 weeks when he started gaining weight and doing well. They moved him to bay 2 were we only lasted 12 hours before he became septic with staph and back to bay 1 we went. He fought the staph infection and made a recovery. But developed BPD and pneomatoceles in his longs. 2 weeks later we moved to bay 3. He was born at 1 lbs 6 oz . He was 5 weeks hold before the first time I held. He spent 10 weeks on the ventilator with 2 failed extenuation attempts. He has grade 2 IVH brain bleeds, Bronchial pulmonary displasia, had bilateral cataracts (just had surgery for that) and bilateral hydronephrosis (which resolved).

We spent 118 days in the NICU and Sam came home on his due date. He was 7 lbs 6 oz when we came home. He learned to bottle feed immediately suck swallow and breathe seemed to be natural for him. He came home on oxygen and monitors, many medicines and has had 1 readmit to the PICU/Peds for a really nasty UTI. He is a super hero because he shouldn’t still be here, he fought from Day 1, his stubborness, tenacity and fiest drew many nurses to him, and amazed doctors with how well he was doing. He is currently 5 months old and 4 weeks adjusted. He can sit up assisted in a bumbo, he can roll from tummy to back, he reaches for toys and people. He far exceeds any milestone chart for his adjusted age. He is a miracle. We’ve called him Super Sam for many months and the superman logo has been part of his t-shirts and much more. Super Sam is strong and courageous. A true example of Preemie Power!

Super Hero Characteristics:

Strong Courageous Resilient Brave

The Great Juju Bee

JulianAge: 5 months
Weight at Birth: 1 lb 5 oz
Weeks Gestation: 23
Time spent in the NICU: 155 days

My Preemie Power Story:

Julian (Juju Bee’s civilian name) was eager to get out of mommy’s tummy and bring joy to the world. There was an infection in mom’s placenta and he knew he had to get out of there fast. At 22 weeks and 6 days, Mom’s water broke, and Julian was on his way out in a super hero pose – one arm up, hand in a fist. He was only 1 lb 5 oz so the doctors wanted to save his strength, and they did a c section to get him out quickly, and The Great Juju Bee was born at 23 weeks exactly.

The doctors didn’t think he would make it through the night, but The Great Juju Bee started his signature move of proving every body wrong. The very next week he underwent emergency surgery for a perforated bowel, and again the doctors didn’t think he would make it – a DNR was signed at the doctor’s recommendation, and a pastor brought in. But Julian knew that he had to be in this world to give people hope and inspiration! He made it through and kept going uphill ever since. Every single doctor and nurse tells mommy and daddy how they are so amazed at Julian – for those first couple of months they didn’t think he would make it. But, as his favorite doctor said, “That’s typical Julian. We give a room and gloom diagnosis, and he goes and proves us wrong, smiling and happy the whole time.”

After 155 days in the NICU, an ROP diagnosis, a VP shunt, and a bilateral inguinal hernia repair, Julian was able to come home to Mommy and Daddy. He continues to build his strength and inspire the world with his bravery – a little superhero!

Super Hero Characteristics:

Super strength, amazing resilience, the power to inspire and give hope, and the ability to bring joy and love to all who come into contact with him!

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.

The Wiggle Worm

EdgarAge: 10 months, 20 days
Weight at Birth: 1 lb 2 oz
Weeks Gestation: 23
Time spent in the NICU: 153 days

Preemie Power Story:

Our story is no different than any other. But they all have their own special meaning. Edgar The Wiggle Worm was born at 23 weeks, also known as micro-preemie, November 25, 2013, weighing in at only 1 pound and 2 oz. We will soon be celebrating his first birthday since he was born. He would always find a way out of his snuggle, knock out his feeding tube and respiratory tube. When the nurses would place him on his belly, he would be so comfortable he didn’t like his assessments. It was always a challenge trying to get through them with out his heart rate dropping or his respiratory going down. He looked like a little man, long eyelashes, dark eyebrows and a small hairy back. As he is growing, he shows us he still has that strength he had while in the NICU.

Having surgery at less than 1 month of being born and another at almost 4 months of being born, a feeding tube for about 4 months, and sometimes not being able to be fed due to having problems with his stomach, and having oxygen support for about 3-1/2months, Edgar is a miracle preemie.

Now at almost being a year old he is one tough Wiggle Worm. He rolls all over the floor, loves to jump around his bouncer.

We are thankful for everyone that helped our Wiggle Worm fight for his life. He is our little miracle preemie.

Super Hero Characteristics:

Loves to wiggle his way out of trouble, drinks his super milk, and uses his strong legs to play.

Miraculous Mandy

Mandy ~ Super Hero Alias: Miraculous Mandy

MandyAge: 4 years
Weight at birth: 1 lb 12 ozs
Weeks gestation: 28 weeks
Time in the NICU: 67 days

Diagnosis, complications, surgeries? 

I had HELLP Syndrome.  Emergency C-section, Amanda was on a ventilator for over three weeks.  She was diagnosed with early stages of pneumonia and the doctors said to brace ourselves.  She was so tiny, they weren’t sure with the antibiotic she would pull through.

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

I know every parent thinks their child is the most special–as they should!  Amanda is beyond anything we could have asked for.  She is smart and funny.  She LOVES Dean Martin, Disney Princesses, and Peter Pan.  She is quite eclectic!  Amanda is very small for her age, and asks me why from time.  she also likes to ask me about the clear box (incubator) she was in as a baby, and if you could have tea parties in them.  Her imagination is so funny!  There isn’t one day that goes by where I don’t think about how scared we all were as a family.  I feel beyond blessed to have this awesome little girl in our lives! [Read more…]

The Amazing Grace

Grace ~ Super Hero Alias: The Amazing Grace

GraceAge: 3 months
Weight at birth: 1 lb 9 ozs
Weeks gestation: 24 weeks
Time in the NICU: 98+ days, still there

Diagnosis, complications, surgeries? 

Chronic lung disease. Bacteria in her lungs. Grace was off all oxygen, had an eye exam and during the eye exam,stopped breathing,she is now back on oxygen at 2 liters on the nasal cannula.

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

Grace has overcome so much.She was born at 24 weeks gestation weighing in at only 1lb 9oz. She spent the first 2 months of her life with breathing tubes down her throat which caused 2 forms of bacteria to form in her lungs. She’s spent most of her 3 months on this earth in isolation because of the bacteria so was not able to feel the loving touch of her family.She was 2 months old before her mom got to hold her for the first time. She is a fighter.She is my super hero. I would never be able to handle everything this poor child has had to endure these past 3 months. [Read more…]

Mighty Mia

Mia ~ Super Hero Alias: Mighty Mia

MiaAge: 11 months
Weight at birth: 1 lb 4 ozs
Weeks gestation: 23 weeks
Time in the NICU: 128 days

Diagnosis, complications, surgeries? 

1 month- Both lungs collapsed and it took 30+ minutes to get her lungs functioning again
2 months- Mia suffered a bowel perforation and was sent to Mercy Hospital in St. Louis. They discovered a Meconium Ileus blockage and she had surgery to remove it. Her bowel movements were through an ostomy/stoma site for 6 weeks after until she was reconnected at 4 1/2 pounds

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

Mia received the name “Mighty Mia” in the nicu. Our minister even referred to her as “Mighty Mia” when he would update her status for the church. She’s been mighty since the day she was born.

Mia amazed the doctors and nurses by proving to everyone that she was a person not a statistic. I think she showed a lot of folks not to under estimate a 23 weeker. There was a time a nurse was preparing for her to pass away due to her perforated bowel. I remember looking at Mia so tiny and fragile and thinking I have to stay strong for her because she’s been strong for me. I soaked up my tears, grabbed her precious little hand and a feeling of love came over me that I had never felt before. I knew from that moment on that she would come home. I also think that her twin brother’s passing gave her the extra fight. A guardian angel watching over is what I like to think.

Mia has taught me how important it is to give everything your all when the odds are stacked against you, to push harder and bend before you break. I am a lucky mama. Lucky to be able to have her home and tell her each and every day how proud I am of her for
fighting and winning the hardest battle she’ll ever have to fight. People may become discouraged because their pregnancy ended so soon but I now see it as how special it was to have been able to see her grow on the outside. Who needs the last 17 weeks of pregnancy anyway? 😉 I see life in a brand new perspective because of my daughter. She’s not only my miracle baby, she’s MY hero and without her I wouldn’t be as strong as I am today.

I always…ALWAYS remember that; “It’s the little things in life that mean the most. It’s always the tiniest of things that can become so “Mighty.”  [Read more…]

Frog Boy

Zane ~ Super Hero Alias: Frog Boy

ZaneAge: 4 months
Weight at birth: 1 lb 15 ozs
Weeks gestation: 26 weeks
Time in the NICU: 87 days

Diagnosis, complications, surgeries? 

PDA ~ closed after 2 rounds of Indocin
Constant drip feeds for several weeks
Conjunctivitis ~ 1 week of drops
Grade 2 Stage 3 ROP bilateral eyes ~ Bimonthly visits to ensure they do not get worse and keep moving on the upward slide

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

Zane’s birth added to the nightmare that has been 2012, but his premature arrival has also shown how strong I really am and has changed me for the better.

Zane has drastically changed me from a very strong type A personality, in which I need to be in control of everything at all times, to someone that has much more patience with the simplest things in this world. He has shown that there is such strength in the smallest things in this world. He has empowered me to better myself and has profoundly impacted several people’s lives.

Sure there were struggles, and days when I thought “why me?” but then his big blue eyes pulled me in and I was honored to have something so precious in my life. He is always good for a snuggle, and at times was “fought” over for who would get to rock-a-bye with him between nurses and volunteers if I was not present (which wasn’t often, but mainly after my appendectomy).

He has this grace about him that shouts silence and moves mountains. No matter who wins, he is my Preemie of the millenium! [Read more…]

Incredible Kylie

Kylie ~ Super Hero Alias: Incredible Kylie

KylieAge: 1 year
Weight at birth: 1 lb 7 ozs
Weeks gestation: 26 weeks
Time in the NICU: 88 days

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

Kylie was born at 26 weeks due to unknown reasons. She spent 3 months fighting to get big and strong. Today she is a smart, bright, beautiful babygirl who deserves to shine to the fullest.

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

Strong, fearless, smart

What advice do you have for future NICU parents?

Be strong for your little ones. They will have a tough road ahead of them, with courage love and support everything will be okay.

RJ the Blaze

RJ ~ Super Hero Alias: RJ the Blaze

RJAge: 15 months
Weight at birth: 1 lb 6 ozs
Weeks gestation: 26 weeks
Time in the NICU: 80 days

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

At 23 weeks I started showing signs of HELLP and finally was forced to deliver at 26 weeks. RJ was my 2nd preemie due to HELLP so I thought I knew what I was in for. However, RJ came into this world with a blaze and has not stopped moving forward and proving all of us wrong. Many of the professionals in the NICU doubted him and advised that he would probably have a long, hard struggle being a micro-preemie. Everyday he proved them wrong and did the opposite of what we were told. RJ was taken off the ventilator and put on C-PAP and we were told to expect him to stay on it for awhile. He had it for one day. He consistently pulled the nasal cannula out of his nose until they finally left it out. The nurses nicknamed him the “NICU Rockstar” because he excelled all of their expectations with every milestone. I am so proud of where he has come and look forward to where he will go. [Read more…]