Micro Man

Callum O. ~ Super Hero Alias: Micro Man

Callum OAge: 14 months
Weight at Birth: 1lb 9oz
Weeks Gestation: 25 weeks
Time in the NICU: 118 days

Diagnosis, complications, surgeries?
Chronic Lung Disease, still oxygen dependent, ROP, aspiration, pneumonia, reflux, g-tube.

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

I never could have guessed that the strongest person I would ever know would arrive in the form of a 1-1/2 pound baby boy. But my son Callum was born a fighter. His first few weeks of life were tenuous at best and there were times that we weren’t sure if he was going to make it through the night. He battled Chronic Lung Disease, dangerous drops in blood pressure, infection, and Retinopathy of Prematurity among other things. For the first 4 months of his life, Callum endured needle sticks, PICC line placement, IV insertions, arterial line insertions, blood draws, painful eye exams. The world was not a kind place to him. And yet, despite all this, Callum was, and continues to be, the happiest child we have ever met.

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GastroKids

GastroKidsGastroKids provides easy to understand information about the treatment and management of pediatric digestive conditions for children and parents. They have a wealth of information in multiple languages (English, Spanish and French) to help parents and teens navigate how specific conditions are diagnosed, treated and managed for the short- or long-term. They have downloadable guides, videos, podcasts and pre-screened external links. Patients can also connect with them on Facebook and Twitter.

In addition to their pediatric digestive disorders A-Z Glossary, GastroKids has collected in-depth information on the following most common conditions:

  • Daddy feeding in NICU by Marvin's Dad Pediatric Celiac Disease, a serious condition caused by a permanent intolerance for gluten–a protein found in wheat, rye, and barley.
  • Eosinophilic esophagitis (EoE), an inflammatory condition in which the wall of the esophagus becomes filled with large numbers of white blood cells causing symptoms similar to GERD.
  • Inflammatory Bowel Disease, which includes both ulcerative colitis and Crohn’s disease.
  • Reflux and GERD (gastroesophageal reflux disease) – Reflux or spitting up is very common in young children. It becomes GERD when reflux causes troublesome symptoms such as weight loss, bleeding, respiratory problems or esophagitis.
  • The Nutrition and Obesity section gives information about healthy eating and fitness.

GastroKids is patient outreach and education effort of NASPGHAN – the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition – an organization of more than 1,400 pediatric gastroenterologists, predominantly in 46 states, the District of Columbia, Puerto Rico, Mexico and 8 provinces in Canada.

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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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Wonder Girls

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

Lily & Sophie S. ~ Super Hero Alias: Wonder Girls

Lily and Sophie SAge: 16 months
Weight at Birth: Lily – 4 lbs and Sophie – 3 lbs 15 ounces
Weeks Gestation: 34 weeks
Time in the NICU: Lily – 29 days; Sophie – 14 days

Diagnosis, complications, surgeries?
Twin birth – preterm labor – my water broke – both had low birth weight; Lily had sleep apnea, problems eating, and reflux.

Why should your children be recognized as “Preemies of the Year”?

My adorable twins, Lily and Sophie, should be recognized as your Preemies of the Year because they deserve to be recognized for their individuality and power to influence others. As the second born twin, Sophie came out early and little but she fought hard to be the biggest and strongest and the first one home. Lily is a brave little fighter who has had many issues including sleep apnea, reflux, and a helmet to fix her head shape. Both of these sweet girls can warm and melt your heart with one little smile just like fire. They also have this amazing capability or super power to work any room like the greatest social butterflies and bring smiles to all they meet. They love each other and are inseparable. They tickle each other and giggle so much that they fall to the ground in hysterics and mommy and daddy can’t help but laugh.
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Sherri and Andy Smetana and their Daughters, Sophie & Lily: A Mother’s Dream

Sophie and Lily Smetana

Sherri and Andy Smetana share the story of the birth and hospitalization of their twins, Lily and Sophie , and the challenges they experienced after being released from the NICU. They volunteer as Helping Hand peer mentors to “help others KNOW they don’t have to do it alone, there are no judgments, and someone has walked in their shoes.”

On December 15, 2008, my husband and I saw my first ultrasound – surprise, we were having twins! We were so thankful and felt so blessed to have two little miracles joining our family. We had always wanted to have two children, so having twins seemed like it would be a dream come true.

After an otherwise ordinary pregnancy, our twin girls, Lily and Sophie, were born at 34 weeks and 3 days. My water broke and I knew the babies were coming even though it was six weeks too early. My dream of having a “normal” pregnancy and delivery was crushed in that moment. I had a quick and easy c-section and I heard those sweet girls cry, but they were rushed to the NICU after a quick kiss from mommy. I never had the happy scene of delivering my babies and holding them in my arms surrounded by family and well wishers in the hospital. Luckily my girls just needed a bit more time to grow but the NICU time was extremely hard and the days at home were even harder. [Read more...]

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Site last updated May 15, 2013 @ 3:17 pm