Remarkable Reese

  • ReeseAge: 10 months
  • Weight at Birth: 1 pound, 6 ounces
  • Weeks Gestation: 23
  • Time spent in the NICU: 97 days

Super Hero Characteristics: Resilient, Strong, Brave, Energetic, Tenacious

My Preemie Power Story:

I went in for my 24 week appointment at 23 weeks, 3 days. My physician found my cervix to be opened and immediately sent me to the closest hospital with a NICU. I was given magnesium for 3 days, but Reese was ready to enter the world the day after Thanksgiving last year at just 23 weeks, 6 days gestation. She weighed 630 grams. She spent 97 days in the NICU but still came home 15 days before my due date. We had our share of problems while in the NICU, PDA ligation, 7 transfusions, mild ROP. She came home on oxygen for just a few weeks and has not looked back! She is growing well and is meeting or ahead of all of her milestones for her adjusted age of 6 months. She is such a fighter and we couldn’t be more proud to be her parents.

Atticus the Great

Atticus R. ~ Super Hero Alias: Atticus the Great

Atticus RAge: 9 weeks
Weight at Birth: 2 lbs, 1 oz
Weeks Gestation: 26 weeks
Time in the NICU: 69 days and counting

Diagnosis, complications, surgeries?

Respiratory distress syndrome, inguinal hernia, retinopathy of prematurity

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

Atticus was brought into this world with the odds against him.  Although he had weak lungs and a fragile body, he has a strong heart. What was written on his Star Wars baby shower invitations was correct, “The force is strong with this one.”  Atticus battled back from almost not making it at birth, to 9 weeks later being 5 lb 9 oz and expected to be discharged from the NICU in the next few weeks.  There have been lots of little bumps and stumbles along the rocky road we’ve been down the past two months, yet every time Atticus shows us how strong he is.  He is determined not to give up! He truly is a blessing to all who are around him and we are so excited to bring our little boy home very soon.

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Jazzin Josie

Josie H. ~ Super Hero Alias: Jazzin Josie

Josie HAge: 2 years, 8 months
Weight at Birth: 1 lb 15 oz
Weeks Gestation: 27 weeks
Time in the NICU: 100 days

Diagnosis, complications, surgeries?

Josie has chronic lung disease, and an immune deficiency. She had surgery in June of 2009 for port placement for her to receive her I.V.I.G and she just had surgery in October of 2011 to remove the port due to complications.

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

Josie is our miracle baby! She came into this world fighting and she wasn’t bcking down. She was born at 27 weeks weighing only 1 pound and 15 ounces and was 13 inches long. We were on the NICU rollercoaster for exactly 100 days. In those 100 days we were told many times that we would need to prepare to lose our daughter, but they didn’t know what she was capable of. Josie was breathing on her own when she was born and continued to do so with the assistance of a c-pap machine untill she developed two major lung infections, 4 weeks later that caused her to be placed on the vent for a month and and left the doctors and nurses baffled as to why after a month of the vent and numerous strong antibiotics Josie just could not get rid of these infections. These infections we were told would cost our precious baby girl her life if they could not find out why she was not improving fast! That is when her immune deficiency was discoverd. After several blood transfusions, I.V.I.G, antiobiotics, and patience, Josie finally was off the vent. Now for another bump. Because of the high use of the vent, and the numerous doses of strong antibiotics we were faced with the possibility that Josie may never hear or see. She indeed failed her hearing test and showed stage 2 signs of retinopathy. We had prepared ourselves for the worst with this. How were we going to be able to communicate with our daughter if she could not see or hear us? A couple months later, lo and behold after many many prayers, Josie passed her hearing test and her eye sight had corrected itself. We were elated! Today, Josie is almost 3 years old and preparing for pre-school. She continues to recieve her I.V.I. G. for her immune system and they tell us that this will more than likely be a life long issue.  Other than her small size (26 pounds), you would never know she was a preemie! She is very intelligent and doesn’t miss a beat! We have our miracle baby, and are amazed everyday at how strong she is!
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Sean, the Strong!

Sean M. ~ Super Hero Alias: Sean, the Strong!

Sean MAge: 12 months
Weight at Birth: 2 lbs, 14 ounces
Weeks Gestation: 26 weeks, 6 days
Time in the NICU: 72 days

Diagnosis, complications, surgeries?

Bronchopulmonary Dysplasia
PDA (closed on its own!)
Stage 1 IVH (brain bleed, also resolved on its own over time)
Stage 1 Retinopathy of Prematurity
Respiratory Distress Syndrome

Sean was born very unexpectedly and I was diagnosed with incompetent cervix. My chances of having another preemie in the future are high, but they are options I can go through to try and get around it. Sean is almost one year old and currently weighs 21 lbs and 4 oz. He is doing pretty well developmentally; he is almost crawling and his first tooth popped up this evening. He says mama and dada. He was a real fighter, and I look up to him every day for that. He is a happy, healthy little boy.

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

Sean is an extraordinary little boy and he might be a baby, but I look up to him in so many ways. He was brought into this world 3 months early, and fought so hard to stay here. His NICU stay was actually very smooth, his PDA closed on its own, he never required any blood transfusions, his breathing tube was taken out 4 hours after birth, CPAP was only in for 3 weeks, and the cannula not long after. Despite being a premature baby, he is just so happy and healthy, you would never hardly tell the difference. I want to show others that preemies can achieve anything if you truly believe in them.
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Luke Cheetowalker

Lucas N. ~ Super Hero Alias: Luke Cheetowalker

Luke NAge: 22 months
Weight at Birth: 2 lb, 1 oz
Weeks Gestation: 27 weeks
Time in the NICU: 123 days

Diagnosis, complications, surgeries?
Chronic Lung Disease, Stage 2 ROP, on oxygen for a year

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

Despite the fact he has been through more medical tests and procedures than most adults he has never stopped smiling and laughing. He is so silly, and such a happy toddler. He loves his baby sister, and is a people magnet with the most beautiful eyes. He is proof that miracles really do happen, and we are thankful every day for him and his health.
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Brawling Brayden

Brayden B. ~ Super Hero Alias: Brawling Brayden

Brayden BAge: 4 years old
Weight at Birth: 2 pound 2 ounces – went down to 1 pound 7 ounces
Weeks Gestation: 26 weeks
Time in the NICU: 105 days

Diagnosis, complications, surgeries?
Intubated and feeding tube for 2 and 1/2 months, heart murmur, ROP – and surgery, bacterial meningitis, multiple pic lines and blood transfusions and sleep apnea

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

Our amazing, little man entered this world on March 12, 2007. I was admitted 24 weeks along with uncontrolled bleeding due to placenta previa. Each day was a gift and struggle at the same time. Late the night of March 12, I hemorrhaged and lost over half the blood in my body requiring 4 blood transfusions, so Brayden entered this world under serious circumstances. Things were so serious in the beginning for both he and I, that we did not know what each day would bring, but as the weeks and months passed – he continued to amaze my husband and I, our families and, most importantly, the team of doctors. I was still very weak in the ICU for several weeks after his birth and was able to be there at any moment. Brayden, and his brother, Carlson finally met when he was 2 months old and it looked like we were winning this battle. He was finally released at 13 weeks weighing over 6 lbs and 19 inches long. However, after he was released he contracted H flu Meningitis and had to be transported to Chicago Children’s Hospital in the Infectious Disease unit for 2 weeks. His weak body had been through so much and now this battle was traveling up his spine. Thanks to the unbelievable medical team, support of amazing friends and families, and prayer – this amazing miracle finally came home for good – and hasn’t made us stop smiling since. He is a gift from God and our inspiration everyday. I was unconscious for his birth and my husband was not present. Neither of our moms were permitted in the room because of the seriousness of it. It certainly wasn’t the pregnancy most babies and moms experience but I knew angels were looking over us. After he left the NICU/PICU, we knew he had a great chance of having an amazing life and were going to give it our best shot. I stayed home with him and oversaw all his early intervention – OT, PT, speech therapy and high risk clinic. He is now a happy 4 and a half year old and is involved in everything. The only visible wound he has from his rough start to life are his glasses and a scar on his stomach. We realize there may be some struggles in school and are very well prepared for that. He is a Super Hero fanatic…and what he doesn’t know is he is a real life Super Hero at the age of 4…to all the professional and related adults in his life that love him, support him and admire him!!!! [Read more…]

Wonder Twins Batman and Robin

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

Maddox and Chase M. ~ Super Hero Alias: Wonder Twins Batman and Robin

Maddox and Chase MAge: 4 years old
Weight at Birth:  1 lb 9 oz and 2 lbs
Weeks Gestation: 25 weeks
Time in the NICU: 90 days

Diagnosis, complications, surgeries?
Severe prematurity, ROP, lung disease, apnea and PDA surgery

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

What happened at today’s baseball game is one of many examples of why my boys are preemies of the year. In our last game of the season, Maddox made a triple play which any baseball enthusiast knows that it is one of the rarest plays in the game of baseball. To help break down this amazing feat, here is a quick rundown of the play. Maddox was playing short stop when a boy at bat hit an air ball heading straight for Maddox. Maddox in his usual attentive self, caught the fly ball, then as another boy from the opposing team approached second base, he tagged the boy out then threw the ball to his team mate who was covering first causing three consecutive outs. Not to be outdone by his twin brother, Chase caught a ground ball and threw it to first base, which is a huge accomplishment for Chase because he prefers hockey. Today was an amazing day of great plays, hits and team work thanks to my preemies of the year. Before my dynamic duo was hitting balls, they were frail 23 weekers fighting for their life. At 23 weeks, my water broke leaving Maddox with very little fluid in his amniotic sac. The threat of early delivery also put Chase in extreme jeopardy. The night my water broke, the doctors told me that if the boys were to deliver at 23 weeks, they would have very little chance of survival or if they survived, they would suffer from lifelong disabilities. Because of my twin pregnancy and ruptured membranes at 23 weeks, I had to remain on hospital bed rest until delivery. Two weeks later, I developed an infection and the boys were delivered by emergency c-section. At 25 weeks, Maddox and Chase entered the world weighing 2lbs and 1lb 9 ounces. Instead of November 6, 2005 being one of the happiest, it was one of the saddest, scariest days of our life. Overnight, I went from joyful expectant mother to a mother who sobbed daily at their bedside in the NICU. Both boys suffered from lung disease, apnea, ROP and other illnesses that plague 25 weekers. On top of a long list of complications, the blood flow to Maddox’s heart was in jeopardy so at 28 weeks, he needed PDA surgery. After a 90 day stay in the NICU, and countless steps forward and more steps back, Maddox and Chase finally came home. Not only are they excelling on the field, but also in school. At a recent parent teacher conference, our very first one by the way, their teacher told us that they both ranked master/proficient in all curriculum categories. For years, I wondered why we weren’t lucky enough to have a story book beginning, but the story that is unfolding before us; one that is filled with sweet moments like today’s triple play or hearing that your boys are math whizzes at school makes the road less traveled that much more rewarding. [Read more…]

Toughguy Ty

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

Tyler S. ~ Super Hero Alias: Toughguy Ty

Tyler SAge: 7 years
Weight at Birth: 2 pounds 10 ounces
Weeks Gestation: 27 weeks
Time in the NICU: 78 days

Diagnosis, complications, surgeries?
BPD, RDS, PDA (surgery to correct), IVH grade 1 & 2, ROP (Surgery to correct), hernias (surgery to correct), countless As & Bs, sepsis, etc

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

Each and every preemie is extraordinary in his or her own way. Our little guys (or gals) have endured and overcome more in their first year than most people do in their entire lifetime. Ty had many ups and downs during his own roller-coaster ride in the NICU with many good and bad days. Through it all he was a fighter and showed an extremely powerful will to live. Now, at 7 years old that powerful will still shows and he lives each day to the fullest. Sometimes his strong will drives me bonkers… but I try to remember that stubbornness is what helped him stay on this earth. Today tyler is a happy, healthy and energetic little guy. He has no lasting complications from his prematurity and for that we thank God every day. I love to watch him learn and grow into a wonderful young man and can’t wait to see the person he will become. He is and always be my little star who graces the world with his energy and brightness…. preemie of the year or not 🙂
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The Amazing Bryce-anator

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

Bryce M. ~ Super Hero Alias: The Amazing Bryce-anator

BryceAge: 16 months
Weight at Birth: 1 lb 8 oz
Weeks Gestation: 34 weeks,  1 day
Time in the NICU: 150 days

Diagnosis, complications, surgeries?
Bryce was born at home in our bathroom one short minute after my water broke and just a couple of minutes after I realized I was in labor.  We gave him CPR until the emergency responders arrived and took us to Cedar Park Regional Hospital.  There they spent a long time trying to intubate and stabilize Bryce,  eventually stabilizing him enough to transfer him to Dell Children’s NICU where every day for weeks we had no idea if he would make it to the next.  We learned that Bryce had developed stage III and IV brain bleeds (IVH) which led to hydrocephalus and many brain surgeries to pull the extra fluid from his brain.  Bryce also had heart surgery at a week old to close his PDA but his biggest struggle may have been his inability to breath independently.  Bryce was on a ventilator for four long months until yet another surgery was able to open his airway enough to finally get him off the ventilator for good.  Bryce came home on nasal cannula oxygen and a nasal gastric tube for feeding.  Bryce also developed ROP (retinopathy of prematurity) which was surgically treated to keep him from becoming blind. As a result of the surgery he is near-sighted and will need corrective eye glasses for the rest of his life.

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

In Bryce’s short life he has overcome so much adversity.  He has surpassed all expectations and continues to amaze not only us but his doctors and specialists.  But Bryce isn’t defined by his Cerebral Palsy, his poor eye sight or his week immune system.  He is so much more than any medical condition – Bryce epitomizes strength, hope and a real zest for living life with a smile on his face.

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Colleen & Karl Heubaum and Their Daughter Trinity

Colleen and Karl Heubaum, both Helping Hand peer mentors with Hand to Hold, describe their family’s experience with prematurity after the birth of their second child and why they want to support other parents who have been down this path.

Our youngest daughter, Trinity, was born at 26 weeks, weighing 1 pound, 12 ounces. Trinity spent 110 days in the NICU with a Grade 1 IVH, BPD, a PDA and ROP, but thankfully no surgeries. Our first daughter was born healthy after an uncomplicated pregnancy, so ending up in the NICU was quite a surprise – something for which we were completely unprepared.  And the “surprises” kept coming – just about the time we learned how to navigate and deal with one aspect of the NICU,  some new situation would present itself and we would be faced with a new set of expectations or fears.   [Read more…]