Warrior Princess

GiaAge: 2
Weight at Birth: 1 pound 2 ounces
Weeks Gestation: 24
Time spent in the NICU: 111

My Preemie Power Story:

Our story begins on April 17, 2012. I was admitted to the hospital on complete bed rest due to Premature Rupture Of Membranes (PROM) at 23 weeks gestation. I was given 3 dosages of steroids just in case she decided to come early. Well, 8 days later, she did! I was rushed into the OR for an Emergency C-Section due to a Prolapsed Umbilical Cord. There are no words to describe how I felt when I was told my baby had a 35 percent chance of survival. Every time a doctor walked into my room, my heart would drop to the floor. The moment I saw my daughter, I just cried. She looked so helpless. I was overwhelmed by breathing machines, tubes, wires, IVS, the fact that I could see right through her skin and consent forms for blood transfusions. I quickly became very familiar with the words “Bradycardia” and “Apnea”, which is a nightmare to witness. 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! 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. She was prescribed to Prevacid and Zantac. On August, 14, 2012, she was discharged from NICU. Unfortunately, she was admitted into PICU the next day because she refused to drink all together. We found out she had a UTI and was put on antibiotics through IVS for 7 days. The bottle feeding and reflux was getting worse, so the GI doctor decided to mix her formula with Gelmix. It helped! Two weeks later, we were talking about discharge, but of course that was delayed due to blood in her stool. X-rays, ultrasounds and cultures determined it wasn’t NEC or Intussusception. 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. The end results turned out to be an allergic reaction to the Gelmix. The GI doctor then suggested a Nissan Fundoplication and G-Tube to be the next best option. On October 6, 2012, she went in for a 4 hour surgery in which she also had 2 hemangiomas removed. Those were the longest 4 hours of my life. She remained in PICU and Peds until November 5, 2012. Although we have still hit some bumps in the road and she still has her G-Tube, I’m thrilled to say that Gia is a happy, healthy and very intelligent 2-1/2 year old. I love her with all my heart and soul and I thank God everyday for showing me that miracles can happen!

Super Hero Characteristics:

Gia is strong, intelligent and courageous

Bibs

AleenaAge: 5 months
Weight at Birth: 1lb 10 ozs
Weeks Gestation: 25 weeks
Time spent in the NICU: 105 days

My Preemie Power Story:

Aleena surprised us all by jumping into this world at 25 weeks. She almost arrived at 22. She weighed 1lb 10 ozs and was 13.78 inches long. Eyes still fused shut, she was clearly curious and fierce! The moment she opened her eyes we just knew there was power and strength there. She would not stop moving around kicking and waving while awake her physical strength was more than obvious.

The NICU road was not easy for Aleena. She suffered a failed picc line her first week and a collapsed lung resulted in the slow leak. More soon followed. Aspirations that required a 3rd round of being vented. She then contracted an e coli infection in her lungs. Throughout all this, Aleena never appeared sick although the monitors and labs said otherwise. We knew our little one was going to be strong and a bit stubborn. Once she overcame the lung infection she went back onto cpap then sipap and finally oxygen.

Once she hit 34 weeks, the bottle was introduced and she loved it but was quite messy. She always needs a bib or two nearby. She then hit a smoot spot in the NICU road. As feeding went up and she was taken off the feeding tube, reflux showed its ugly face. Aleena, unable to clear her spit up, began to choke numerous times a day. She began meds once reflux was verified and apnea was ruled out. The reflux kept her in the NICU longer.

September 10th after 105 days discharge day was upon us which included a take-home apnea monitor.  Aleena has beem home for a few weeks and has flourished now weighing over 9lbs!! Reflux is still there requiring a large stock of bibs especially with her appetite. Her strength still strong and her stubbornness accompanies it as well. She spends a portion of her busy baby day attempting to crawl but is unable to we give her a little help by letting her kick off on our hands. If not, she lets us know she wants to move! Aleena is more than a highlight to our lives and to our families’ lives. Being a preemie, she is one of many that few experience. She may never really understand her story and what it means to us all but she will hear it numerous times, see the pictures as well as her bibs.

Super Hero Characteristics:

Energetic- she is a busy body always moving wants to be up.

Curious – she likes to be where the action is at to see who is talking and what’s going on.

Determined – she obivously will not be letting her size hold her back she knows what she wants even if it takes a little yell to get our attention she gets it!

Mr. Incredible

ChaseAge: 4 years
Weight at Birth: 2lbs 3 ozs
Weeks Gestation: 26
Time spent in the NICU: 92 days

My Preemie Power Story:

Chase was born at 26 weeks, weighing 2lbs 3ozs. At exactly 1 week old we were told he had a massive brain bleed on both sides of his brain. At only 3 weeks of age and less then 3lbs he had his first of many surgeries to have a shunt placed to drain the fluid that was building up. A month later he was diagnosed with a UTI and Meningitis and the shunt was removed immediately. At that moment my life fell apart. I had watched my son work so hard to breath on his own, go from an incubator to an open crib, and to be able to eat from a bottle versus through a tube. He had worked 6 long weeks to get where he was and in a matter of seconds all the work had disappeared and he was being kept alive by a ventilator. That was probably the longest week of my life.

I remember walking into his pod and seeing all the wires and monitors and feeling like we were starting at the beginning again. He proved to me and our entire family that week what a fighter he truly was. Once all the meds kicked in he was able to begin the fight for his life. He fought hard for 7 days and in the end he won. He would not let life beat him. It seemed like one day he still wasn’t improving and then the next he was back to him self and doing everything he was doing just a week before. [Read more…]

Evan from Heaven

EvanAge: 9 months
Weight at Birth: 1lb 4oz
Weeks Gestation: 23
Time spent in the NICU: 117 days

My Preemie Power Story: 

Evan was special from the day we found out I was pregnant. You see, we had been trying to get pregnant for almost 3 years and after a miscarriage, knowing that I was pregnant again was the answer to my hardest, most relentless prayers.

Going into labor unexpectedly at 23 weeks 5 days would be scary and terrifying for anybody, including my husband and even the medical staff, but somehow I was not. “So do not fear, for I am with you; do not be dismayed, for I am your God.” Infertility was torture, but it gave me the most precious gift: realizing I was not in control and putting all my trust in God.

The truth is Evan’s path had been chosen way before he entered this world at 23 weeks 6 days. “Before I formed you in the womb I knew you, before you were born I set you apart.” So we wanted to give him a name to reflect this: Evan means God is Gracious and Little Fighter.

Superhero from Day 1: Evan was born crying and that tiny little cry was the sweetest sound. He conquered many battles in his 117 day NICU stay: the ventilator, small PDA, blood infection, meconium issues, high blood sugar, HMF intolerance, slow weight gain, blood and platelet transfusions, spinal tap, CPAP, high flow and low flow cannula, ROP stage 2, bilateral hernia. God has held him in his palm every second of the way. Just the fact that a 23 weeker did not have any brain bleeds is a miracle. And we are thankful and will forever be grateful for His blessings.

Today Evan is almost 9 months old and is doing amazing, meeting all the milestones for his adjusted age and no current issues except for his reflux. He is OUR MIRACLE and the answer to many people’s prayers.

Super Hero Characteristics:

My little superhero is strong, both physically and mentally, as he overcomes each challenge of his premature birth. He is persistent as some of these challenges are more difficult for him than others, like breathing and eating. He is brave and full of courage as evidenced by the countless pinpricks on his hands and feet and the surgical scars on his body. He is intelligent as he masters new skills to overcome his developmental delays in fine motor skills and speech. He is compassionate and loving, wearing his heart on his sleeve and offering it to others in need. He is curious and fearless, always seeking out new adventures and new friends. My little superhero charms his way into the minds and hearts of all those he encounters. The world is a better place as my little superhero lights up the day with his smile.

Chubchub

JenniAge: 15 months
Weight at Birth: 1lb 14oz
Weeks Gestation: 26/5
Time spent in the NICU: 103 days

My Preemie Power Story: 

At 24 weeks my bag of water started bulging. I was placed on bedrest and delivered at 26/5 weeks.  Jenni was the sicker out of the twins.  Jenni had issues with respiratory.  She didn’t tolerate being held and could only handle about 5 mins.  She also had feeding intolerance.  There were times where she was placed on continued feeds.  Her doc also warned that she might be a reflux baby.  Jenni finally got off oxygen in early September.  At first they were talking about releasing the twins together but the night before she had a brady.

Littlebit, her twin, came home and Jenni continued to have bradys.  Doc talked about releasing her on an apnea monitor and I was very nervous because they still didn’t have a diagnosis of why she continued to have them.  About a month into her stay without her sister, she had a major brady about 15 mins after her feed requiring resuscitation. Finally they did a barium swallow confirming mod/sev reflux.  She was also on a fluid limit of 75 mls.  Doc changed her formula to enfamil ar and also no more breastmilk. I was heartbroken because she was actually latching and nursing well.

Jenni finally got fitted for an apnea monitor and came home 2 weeks later.  We did have an episode at home but it was a heart rate dip because she had a fever.  I also invested in a rock and play for her.  You would never know that she is a preemie.  At her 12 mth checkup she is above average for both weight and height.  She is 30+ inches and as of Oct, she weights 24 lbs and 10 ozs.  She is my miracle baby.

Super Hero Characteristics:

Tuff little fighter

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.

[Read more…]

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:

  • Pediatric Celiac Disease, a serious condition caused by a permanent intolerance for gluten–a protein found in wheat, rye, and barley.
    Daddy feeding in NICU by Marvin's Dad

    ©Flickr/Marvins_Dad

  • 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.

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.

[Read more…]

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.
[Read more…]

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…]

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