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

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!

Owey the Great

Owen R ~ Super Hero Alias: Owey the Great

Owen R

Age: 3 months old
Weight at birth: 4 lbs 10 oz
Weeks gestation: 36 weeks
Time in the NICU: 40 Days in NICU 48 and counting in PICU

Diagnosis, surgeries, complications?

Owen has not been diagnosed yet. All genetic testing has come back negative. Owen is a twin and has cystic kidney disease, crainosynostosis, heart abnormalities, reoccurring aspiration pneumonia and had an emergency trach due to that. He had to get the nissen fundoplication g-tube and has chronic lung disease from that as well, so he is also on oxygen, and has had multiple blood transfusions. Owen has hearing problems, spine abnormalities, and underdeveloped brain tissue. He has upcoming skull surgery and kidney surgery.

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

Owen has been fighting from the beginning and is still fighting every day of his life. I was being monitored from 30 weeks for his low weight and kidney problem. After he was born, it has been an uphill battle, new issues, and infections every day. We have been very close to losing him and it’s heartbreaking to think about those times.  He has been through so much and continues to amaze everyone around him. The will he has is truly humbling. He has blessed our family more than words can explain, he has given us all strength we never thought we had. Owen is such a miracle we can’t wait to get him home to really enjoy his sweet spirit and infectious smile.

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

Owen’s super power of looking deep into your eyes and making your heart melt is one of his strongest. He is hiding away in his lair in the PICU getting stronger so he can do great things. He has hypnotizing powers as well. He has used them on his 2 year old sister to give him her binky and she was more than happy to do so and uses them daily on mommy and daddy to do pretty much anything he wants. Owen also has super healing powers as he has recovered from surgeries and infections better than anyone had expected. Super strength for sure, he fights sedation and the vent every time. Of course he is brave. And we can’t forget he has his twin brother sidekick at home just waiting for his return. He is truly our HERO!

What advice do you have for future NICU parents?

Take one day at a time! Rest and take care of YOURSELF so you can be there for you child. It is OK to miss a day. It can get very overwhelming and some days you just need time away from the hospital. Cherish every moment!

Tiny-N-Tuff

Kastyn & Kenady M ~ Super Hero Alias: Tiny-N-Tuff

Kastyn & Kenady M.Age: 8 months old
Weight at birth: Kastyn 2lbs, Kenady 1lb 15oz
Weeks gestation: 26 weeks
Time in the NICU: Kastyn 120 days, Kenady 141 days

Diagnosis, surgeries, complications?

Kastyn: Bronchopulmonary Dysplasia, PDA, ROP, Laryngomalacia, Osteopenia of Prematurity, Hydronephrosis, Gastroesophageal Reflux. Surgeries: PDA Ligation, Supraglottoplasty

Kenady: Bronchopulmonary Dysplasia, Gastroesophagael Reflux, Subglottic Stenosis, ROP, IVH, PDA. Surgeries: Glottis Granuloma Resection, Tracheostomy, Gastrostomy Tube, Nissen Fundoplication

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

Kenady and Kastyn should be recognized as Preemie of the Year because they are the example of strength. I was put on hospital bed rest at 20 weeks and my doctor thought that within a couple of days I would lose both of them. They held on for 6 weeks. When they were born, they were so tiny yet so strong. Kastyn was the sickest baby and for days we didn’t know if he would live. His lungs were so bad that they did not know if he would be able to come off of the ventilator.  He fooled everyone and 120 days later he came home with no oxygen and very few medications. He now weighs 15 lbs and is growing like a weed.  Kenady also played a few tricks on us. At six days old she was off the ventilator and breathing on her own but was so small she wore herself out. At a week old and only 1lb 12oz she flipped over and extubated herself. We knew she was a fighter.  After 115 days in the NICU it was determined that she would need a tracheostomy.  She received her trach on July 8th and on July 17th she came home. She is still tiny at 11lbs but she is a little spitfire.  After all that she has been through she has a smile that will light up a room.  Kastyn and Kenady are my heroes.

Note (posted Oct 31, 2012):

Thank you to everyone for voting…We just recently found out that our fierce little girl has more obstacles to overcome. We thought she would outgrow the need for her trach but things went the opposite direction and her airway is completely closed. The trach is her lifeline. The doctors hope sometime after her 1st birthday they can reconstruct her airway. She is so brave and still smiling everyday.

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

Kastyn is strong, thoughtful, and energetic.  He has a very sensitive side to him.

Kenady is my brave, fierce fighter. She always has a smile and can melt your heart.

Jude the Ad”vent”urer

Jude S

Jude S ~ Super Hero Alias: Jude the Ad”vent”urer

Current age: 9-1/2 months old
Weight at birth: 4lbs (including 10z tumor)
Weeks gestation: 31 weeks 0 days
Time in the NICU: 111 days
Hometown: Kansas City, Kansas

Diagnosis, surgeries, complications?

Oral Teratoma, PDA, Obstructive thrombus, Progressive Posthaemorrhagic ventricular Dilatation (IVH grade 4s), Choanal atresia, Aspiration pneumonia, Cholestasis, GT/fundo, VP Shunt, Vent Trach dependent, Digestive complications. Removal of Teratoma, plus multiple additional surgeries. Multiple blood transfusions. Lung problems. Development delays. Among other things.

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

Jude the Ad”vent”urer should be Preemie of the Year because of his ability to defy all odds. Before Jude was even born, he had to demonstrate super hero abilities to survive. Doctors told us that less than 1% of babies born have oral teratomas and of those babies a finite few are born with a teratoma as large as Jude’s. Multiple specialists warned that Jude would likely not survive.  If he did, his quality of life would be pitiful. Jude came early at only 30 weeks. We rushed to the hospital after going into labor. The doctors tried to stop the labor process but within 12 hours, Jude was ready to come out. He was born with a 10 oz tumor (3/4 the size of his head) growing from the roof of his mouth and descending out of the mouth. He was delivered via emergency exit procedure, and was, from what we know, the first successful emergency exit procedure. During delivery, a tracheostomy tube was placed and he was hooked to a ventilator. Days after birth, Jude experienced two grade 4 inter ventricular hemorrhages (brain bleed) as well as an open PDA. In addition, Jude’s primary physician that diagnosed the IVHs, proposed that the likelihood of developing Cerebral Palsy as a result of the IVHs was almost inevitable. Days before the removal of the tumor, doctors discovered brain clots on each side of Jude’s brain. These clots, if left untreated, would cause enough damage to the brain to eventually lead to death. Jude would require inter muscular Lovinox® injections twice daily for the next three months. The tumor was surgically removed shortly after, approximately one month after his birth. Due to damage from the tumor, Jude has several oral and nasal malformations. Following the surgery, Jude had to wear a custom brace 23 hours a day for two weeks on his head which reshaped his jaw-line, which was terribly malformed, caused by the weight and size of the tumor. Due to two different cases of aspirated pneumonia, the doctors felt that Jude required a fundoplication in addition to the g-tube placement. His stomach was extremely small. The doctor said it was the size of a blue berry. He was on a continual 24hr feed through his g-tube, with his stomach having to be vented at all times. Because of the tumor and pneumonia, Jude was placed on an oscillator multiple times. At almost four months, Jude was sent home fully dependent on the vent, oxygen support, and on a 22hr vented feeding. At six months old, Jude had a shunt placed in his brain to combat hydrocephalus, and enlarged ventricles. Jude is currently weaning off the vent and decreasing his feeding time. In the next few years he will have multiple surgeries to repair the damage the tumor has done, in hopes to allow him to breath and speak. He will also continue multiple therapies. Jude continues to astonish the doctors with his ability to overcome.

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

Jude’s adventurous: Jude laughs in the face of danger! There is nothing too big for Jude to overcome. When Jude sets his mind to something he does it. Jude enjoys observing his surroundings, he eagerly searches the room. He will spend hours exploring the things around him. Jude has had many adventures in his life and always comes out stronger. We were told he would make little if any noise around his trach, Jude has not stopped making noise. Each visit to the doctors or hospital stay Jude takes on the adventure with eyes wide open, focused and a smile.

Jude’s Unconditional Love: Despite painful operations and an overall uncomfortable life style, Jude continues to spread joy with his infectious smile and comedic wit. Jude loves not only life but everyone he meets! Several of his allies in the fight, or nurses, have remarked that he is quite possibly the happiest baby they’ve ever seen. We are told again and again by countless people that a mere picture of Jude did more to brighten their day than anything else could. He has faced several painful surgeries and daily routines and kept a cheerful smile the entire time. He will smile at anyone that looks at him till they smile back and then he will show you what amazing things he can do. He is fueled on by the cheers of his people and tackles each villain as they come.

Jude’s indestructibility: Before his birth doctors speculated that he would likely not survive birth. When Jude was born, however, his indestructibility only increased. He then took on several surgeries and procedures, some of which were quite dangerous, and all of them painful. As with most superheroes, Jude has been placed in situation after situation which has tested his indestructibility only to come out on top. Jude is the only baby I know who will smile at the nurse after he’s been given a shot. “I’ve never seen anything like this” seems to be a common saying amongst the doctors when speaking in regards to Jude which is typically followed by “of course, it’s Jude.” Jude has come leaps and bounds from where he was and where they predicted Jude to be. Not only was he a rare baby before birth but in every situation, no matter how big or small, he continues to make his own way. Jude refuses to fall into line and is determined to continue making life exciting for those with him and those reading about him. He, like all superheroes, makes the stories worth reading.

As every super hero has an arch-enemy, Jude takes on adversity and misfortune using his super powers that are expected from any super hero. He’s craftier than a guy with a mullet, nobler than a pure motive, able to leap small buildings with a single bound (toy buildings with the help of his daddy, of course)…he’s Jude the Ad”vent”urer!

What advice do you have for future NICU parents?

Write down something every day, good or bad. The days seem to fly by and stand still all at the same time and you think you won’t forget a single second. Take time to be still and enjoy your baby. Make fun memories. And remember everyone is fighting together for your precious baby!

SuperBella-Bug

Isabella C. ~ Super Hero Alias: SuperBella-Bug

Isabella CAge: 3 years
Weight at Birth: 1 lb, 1 oz
Weeks Gestation: 24-26 (Biological mother had no prenatal care.)
Time in the NICU: 158 days

Diagnosis, complications, surgeries?

Isabella was born exposed to drugs from biological parents. She is adopted after being abandoned at birth. She experienced grade III/I brain bleeds, 2 blood transfusions, feeding issues, eye surgery, Fundo-Nissen surgery, and quadraplegia spastic Cerebal Palsy.

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

My child spent the first two months of her life fighting alone. She not only went through everything a preemie, such as with underdeveloped lungs, brain bleeds and breathing but also she did it all exposed to the drugs of her mother and alone.

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Chloe the Conqueror

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

Chloe G. ~ Super Hero Alias: Chloe the Conqueror

Age: 8 months 10 days at death
Weight at Birth: 1 lb 8 oz
Weeks Gestation: 24 weeks
Time in the NICU: 211 days

Diagnosis, complications, surgeries?
Micro preemie, bowel rupture, PDA Ligation (open heart surgery), pneumothorax, colitis, multiple hernia repair, 3 bronchialscopes, nissen funduplication, g-button placement, compartment syndrome, abdomen opened and internal organs placed in a silo, 4 abdominal surgeries to close her abdomen, tracheostomy, 3 central line placements, multiple pneumothorax’s, multiple chest tubes

Why should your child be recognized as “Preemie of the Year”?
Chloe Elizabeth Gallaway was known to the Scott and White NICU as “drama queen” or “diva.” To us she was known as precious. Chloe survived more physical trauma than the Scott and White NICU has ever seen an infant endure and survive. Survive them she did! She fought her way to the PICU where she continued to make a name for herself. She was vivacious, filled with more tenacity than most people encompass in a lifetime. Chloe was determined to live, love, and be loved. Her 8 months and 10 days, though enduring 20 surgeries, changed the lives of everyone around her. She left an imprint on this world that can never be erased. Chloe is our hero. She changed more lives in a tiny amount of time than most people change in a lifetime! Chloe’s funeral was standing room only. There were more than 300 people in attendance. The stories told of Chloe by the Scott and White staff and other NICU familes confirmed what our hearts already knew about Chloe. She was special, one of a kind, and never to be forgotten! I believe Chloe should be the preemie of the year because she exudes the essence of all preemies, a strong will to live, love, and flourish in a body that was fragile, weak, and underdeveloped.

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