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!

Jonny McDash

JonathanAge: 2
Weight at Birth: 1 lb 5 oz (600 grams)
Weeks Gestation: 23
Time spent in the NICU: 150 days

My Preemie Power Story:

Jonny is fast. As soon as he could stand, he walked. And as soon as he could walk, he ran. This speed is his greatest strength, and his greatest weakness.

Half-way through his gestation, he thought he was ready to fight supervillains. His sisters pleaded for him to stay put. “No-no-no, baby, don’t come out!” His mother told him it wasn’t time. But there was no slowing down McDash. He burst his bubble and made his escape. A superhero was born.

Jonny’s first stop was the Neonatal Incredible Kid University, or “Niku,” a school for super-kids like him. He learned to do normal baby things like unfuse his eyes and hold his heat. He trained to enter the world as his mild-mannered alter-ego. But even in Niku he was not safe .

Episode1: McDash vs. The Potent Deceptive Alternate (PDA) & Necros Ever Crank (NEC)

Knowing that Jonny McDash would become a formidable enemy, the League of Supervillains (LoS) infiltrated Niku. They whispered to McDash to keep a heart duct open. An open duct would make him faster, they lied. He was still young, so their deception worked. His body slowed. A team of superheroes, “The Doctors” gave him an antidote to close the open duct. LoS heard of this. Upset that their deception had been thwarted, they sent Potent Deceptive Alternate (PDA) to open the duct again. “Surge,” the superhero in scrubs, defeated PDA with two staples and a scalpel. Brilliant! But without wasting any time, the LoS attacked again. This time they sent Necros Ever Crank (NEC) against Jonny’s intestines, the source of his energy and strength. Over a half a foot of intestines died. But once more, Surge came to the rescue, discovering the stealthy villain and sending her packing.

Episode 2: McDash vs. the Rush Reserve Operative (ROP)

Having failed to eliminate Jonny McDash, the enemies sought to neutralize him by taking away his eyesight. To catch the speedy hero, they sent in their fastest Reserve Operative (ROP) – Rush ROP. Armed with an impenetrable protein cloud, Rush ROP attacked McDash’s eyes, threatening to tear them apart from the inside. The operative got more than he bargained for, however, since Jonny and the Doctors were ready with their laser cloud piercer, turning back Rush ROP in record time.

Episode 3: McDash strikes out on his own
The Supervillains kept trying, but McDash had grown strong enough to defeat them easily. Desat, Apnea, and Brady often attacked together. Kidney killer threw him into renal failure more than once, and Anemia showed up again and again. But each time, Jonny McDash and his team of teachers (wearing badges like “RT,” “RN,” “NP,” “OT,” and “PT”) and The Doctors warded them off. When ready, McDash passed his graduation exam (known in-house as the “carseat test”), with flying colors. He was ready for the world!

Next Time on McDash: LoS unleash a top secret project, code-named “Failure to Thrive,” and Dr. Nephros delivers McDash from Acidosis Monster. McDash triumphs again!

Super Hero Characteristics

Primary Superpowers:

Speed, quickness, and super-fastness. Also good at being early and fighting supervillians

Bryson the NICU Warrior

BrysonAge: 11 months
Weight at Birth: 1lb 14oz
Weeks Gestation: 28
Time spent in the NICU: 72 days

My Preemie Power Story:

My husband and I knew that having a baby would be life changing, but we had NO clue what that really meant for us. Around 25 weeks pregnant I started having horrible swelling but everyone told me it was “normal”, and I listened. By week 28, I was starting to get worried so with a little reading and researching, I decided I had better check my BP. It was sky high, and that night I went straight to the ER. My husband who was 10 hours away at work, drove through the night to get to me, fearing what was in store for us. I was diagnosed with severe acute Preeclampsia/HELLP. They kept me pregnant for three days and then my son was delivered via emergency c-section at 28 weeks. It was a whirlwind. For 72 long days, my husband, myself and most of all our son, endured the ups and downs brought on by extreme prematurity and being in the NICU. My son experienced, risk of IVH, being SGA, Hypoglycemia, Hyperbilirubinemia of Prematurity, Apnea of Prematurity, RDS, Stage 2 ROP, Sepsis, PDA, two blood transfusions, Staph Epi infection, possible NEC and so many other complications. I could write all the details, but instead I’d rather write some good things this experience has given meI. It has taught me to cherish every minute with my son and loved ones. It has taught me to be strong, even when it seems like being strong is impossible. It has taught me patience, trust and hope. For so long I felt nothing but anguish over our journey, but here we are almost a year later, with a happy, healthy, little boy. My son overcame all odds, he is a preemie, a NICU warrior and I am a proud preemie mom!

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!

Hope With Hannah

HannahAge: 16
Weight at Birth: 17 1/2 oz
Weeks Gestation: 23
Time spent in the NICU: 123 days (4 months)

My Preemie Power Story:

Hannah was born on the first day of her 23rd week weighing 17 1/2 oz. I had been in the hospital for 2 weeks prior to her birth because of 2 failed cerclages due to an incompetent cervix. Hannah was a TWIN. Jacob, her twin brother, despite being 4 oz larger and 2 inches longer- did not survive. On the morning of their birth, the neonatologist told us that if they were born on that day- it would be unethical to resuscitate them because their tissue probably would not be mature enough to survive. Little did we know, Hannah and Jacob had planned to make their arrival that very night. When the neonatologist arrived that night in the operating room, I looked at her through tear stained eyes asking her why she even bothered to come. She said, ‘Well, we will take a look and maybe they will be stronger than we think.’ As we both listened to their strong heart beats throughout the delivery, we both were thinking the same thing- ‘WHY?’ ‘Why do 2 perfectly healthy babies have to be born tonight?’

To no fault of their own, my body could give no more and delivered these angels. Hannah, born first, came out pink and whimpering and feisty. The doctor immediately whisked her away to the NICU nursery. [Read more…]

Ezra the Jedi Padawan

EzraAge: 2 years
Weight at Birth: 2 lbs 3 oz
Weeks Gestation: 25
Time spent in the NICU: 72 days

Preemie Power Story:

Preemie Power Story At the beginning of my pregnancy with Ezra things started out much like his older Padawan sisters and brother. Morning sickness, headaches, and a growing excitement to meet the newest member of our alliance were par de course. But suddenly at 11 weeks I began bleeding profusely. Scared that I was losing our sweet Padawan, I went to the hospital after an ultrasound showed that the Force was still with him. From there my pregnancy was never a guarantee that we would ever meet our Jedi. Clothes were not bought. Dreams of the future were clouded with the reality that it may end in sadness. But we held on. The bleeding, the cause never known, never ceased. Tension began to build and we questioned whether the placenta (where the source of blood seemed to be coming from) would be able to withstand past 24 weeks. After another sudden burst of bleeding, I was hospitalized on strict bed rest. The bleeding let up and I was discharged. When I stood up, the course changed. The bleeding didn’t stop and he was born by emergency C section later that night.

I trusted the doctors more than I had trusted anyone in my life in those moments leading to his birth. A peace fell over me and when I heard his cry, like a kitten, my heart filled with hope. [Read more…]

Jake the Great

Jake ~ Super Hero Alias: Jake the Great

JakeAge: 9 months
Weight at birth: 2 lb 6 ozs
Weeks gestation: 28 weeks
Time in the NICU: 59 days

Diagnosis, complications, surgeries? 

Apnea, Bradycardia, Acid Reflux, Anemia

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

To us Jake IS the Preemie Of The Year!! Jake gave his Mom every sign that he possibly could to let her know that he wanted OUT! Mom had no idea her placenta was failing until Jake decided to be still for hours at a time. Born at 28 weeks and 1 day (2lbs 6oz 14 inches), Jake was born breathing on his own and fighting! After loads of caffeine, one blood transfusion, a few Bradycardias, mild Sleep Apnea, prayer, blood, sweat, tears and a huge weight gain; he was discharged with a monitor and a script for Zantac! Jake is now 9 months 19lbs 8oz and 27 inches! Thank You Lord for this modern day Miracle! His name is Jake and I’m sure he approves this message 🙂

[Read more…]

MicroMiracles

Addison & Salvatore ~ Super Hero Alias: MicroMiracles

Addison & SalvatoreAge: 2 years
Weight at birth: Addison 2lbs 4oz / Salvatore 1lb 12oz
Weeks gestation: 29 weeks
Time in the NICU: Addison 58 days / Salvatore 82 days

Diagnosis, complications, surgeries? 

Before reaching 4lbs, the twins had suffered through multiple blood transfusions, jaundice, oxygen desaturation, apneas, bradycardias, collapsed lungs, sepsis, spinal taps, surgeries, staph infections, and quarantines.

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

My twins are my heroes. They have endured more in their short 2 years than most adults have been through in their entire life. They are the strongest people I know, and I have learned so much from watching them. They truly are my “miracles”.

[Read more…]

Super Love Baby

Morgan ~ Super Hero Alias: Super Love Baby

MorganAge: 14 months
Weight at birth: 2 lb 5 ozs
Weeks gestation: 27 weeks
Time in the NICU: 75 days

Diagnosis, complications, surgeries? 

Premature birth due to infection, BPD, CMV infection, sleep apnea

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

Morgan must have been really excited to meet her mom, dad and big brother Noah because she entered the world 13 weeks early at 27 weeks gestation. She fought many obstacles in the NICU including a lung infection called CMV. She went home on oxygen and at 14 months she continues to use oxygen while she sleeps. She was very delayed in her milestones to the point that her doctors were unsure if she would walk, but Morgan keeps fighting. She goes to therapy twice a week and practices her exercises at home. At 14 months (just a few days ago!) she took two steps on her own! Soon, Morgan will undergo her first surgery which we are sure she will go through with grace and courage as she has with all her other obstacles. Morgan deserves to be “Preemie of the Year” because throughout her first year of life Morgan has brought joy to so many people in her family and community. Her smile melts your heart! Morgan has taught the people she has met what love and happiness truly means.

[Read more…]

Atomic Alivia

Alivia ~ Super Hero Alias: Atomic Alivia

AliviaAge: 1 month
Weight at birth: 5 lb 14.7 ozs
Weeks gestation: 32 weeks
Time in the NICU: 18 days

Diagnosis, complications, surgeries? 

heart rate drops, 2 spinal lumbar punctures, low calcium level, apnea spells, jaundice

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

Alivia arrived into this world at 32 weeks because of my heart. I have dilated cardiomyopathy and wasn’t able to carry her to full term. When I was 14 weeks pregnant with her, every doctor I saw told me to abort her. I couldn’t see myself ending her life just so I could live mine because to me, my life would end if she wasn’t in it. I already have two little boys so it was a hard decision to make knowing that there might be a chance that my boys would have to go through this world without their mother. Some of my family were angry because I chose to continue the pregnancy because they thought I wasn’t being fair to my boys. I prayed and kept the faith that God would pull me through. Since no doctor near me would treat me, I was sent to Barnes Jewish Hospital in St Louis. I was also assigned a cardiologist who kept a close eye on me as I carried Alivia as far as I could. At 24 weeks, I went into preterm labor so they gave me steroids to help develop her lungs. Thankfully, they were able to stop the labor. At 32 weeks, they found that my heart was only working at 30% so the doctors felt they had to give me a second round of steroids and deliver Alivia. She was born the day before my 29th birthday. She was perfect. When everybody else had told me to abort her, I kept my faith in God and He rewarded me with a beautiful and fairly healthy baby girl. [Read more…]

Gia The Warrior Princess

Gia G. ~ Super Hero Alias: Gia the Warrior Princess

Gia GAge: 6 months
Weight at birth: 1 lb 2 ozs
Weeks gestation: 24 weeks
Time in the NICU: 111 days

Diagnosis, surgeries, complications?

Colonoscopy, Endoscopy, Nissen Fundoplication, G Tube, Removal of two hemangiomas, Endoscopic Balloon Dilation

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

On April 17, 2012 I was admitted to the hospital on complete bed rest due to Premature Rupture of Membranes. The next week, I had an Emergency C-Section due to a Prolapsed Cord. There are NO WORDS to describe how I felt when I was told my baby had a 50/50 chance of survival. When I first saw Gia, I cried. She looked so helpless. I was overwhelmed by breathing machines, tubes, wires, IV’S, the fact that I could see right through her skin, and consent forms for blood transfusions (which she had several of). I quickly became familiar with the words “Bradycardia and Apnea”, which is a nightmare to witness, especially when the baby needs stimulation. 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! Everyone thought she was going home on oxygen, but of course she had to prove everyone wrong! 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. Prevacid and Zantac was prescribed. On August 14, 2012 (two days after my due date) she was discharged from NICU. As soon as we got home, she went from drinking 60ccs to drinking only 20ccs and sometimes nothing at all. The next day she was admitted into PICU. She had a UTI and was put on antibiotics through IV’S for 7 days. She wasn’t bottle feeding as well, so speech therapists continued working with her. The reflux was getting worse, so the GI doctor recommended Gelmix. It helped! Two weeks later, we were talking about discharge, but that was delayed due to blood in her stool. X-rays and ultra sounds determined that it wasn’t NEC or Intussusception. Cultures came back negative. 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. Results of tests showed an allergic reaction. It was the Gelmix. Rice was recommended as an additive, but the reflux kept getting worse. On October 4, 2012 she had a Nissen Fundoplication, G Tube, and removal of two hemangiomas (one of which had already started oozing). The gut wrenching feeling that I had when Gia was being taken into the OR is beyond words! Surgery went well. Recovery was on target. On October 12, 2012 the post surgery esophagram showed some swelling. Therefore, on October 15, 2012 Endoscopic Balloon Dilation was done to open passage. So far, all is well and it looks like Gia will be home soon tipping the scales at 8 pounds 12 ounces! I can definitely say that my Faith has grown stronger and Gia is the TRUE definition of a MIRACLE BABY!

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

Three words that come to mind when describing Gia are: Fighter, Strong, and Winner. From the time she was born, she fought one battle after another to get to where she is today.  The strength she showed in her survival proves that she is a winner!

What advice do you have for future NICU parents?

STAY STRONG AND NEVER LOSE FAITH!

Site last updated April 16, 2017 @ 9:38 pm