Admirable Abigail

  • AbigailAge: 1
  • Weight at Birth: 1lb, 11oz
  • Weeks Gestation: 25
  • Time spent in the NICU: 157 days

Super Hero Characteristics: Strong, Fighting Spirit, Energetic, One of a kind, and Loving

My Preemie Power Story:

If she doesn’t get you with her story, she will get you with her dimpled smile!

Abigail has been flaunting her preemie powers from 21 weeks gestation when mommy suffered from preeclampsia and liver failure. Taken out of the womb at 25 weeks, Admirable Abigail weighed in at one pound eleven ounces. She has had a strong yet rough fight. It took a variety of machines to keep her tiny little body alive as her body grew and developed enough to thrive on her own. 23 days after birth, mom was finally able to hold her baby for the first time; at this point, we bonded, and I knew she was going to change me in many ways; I gained my preemie parent super powers.

After five failed extubations she joined the “trach life” where she depends on a tracheostomy to breathe. After a 157 day slumber party in the NICU, she joined mom and dad at home, and has been thriving ever since! Over the past year, we together, have grown and conquered more than we could have ever hoped! Within these few months since you’ve been home, you’ve gotten rid of equipment they prepared us to have for years to come: feeding tube, oxygen, and your ventilator. I reminisce in memories some would be afraid of, some of things no one will ever understand. The milestones we celebrated were different than the average parent celebrates, but these milestones were more significant; they supported the fact of how far you have come, and how strong of a little girl you are.

Our Miracle Gaby

GabyAge: 4 years
Weight at Birth: 1lbs 5 ozs
Weeks Gestation: 26
Time spent in the NICU: 314 days

My Preemie Power Story:

Our daughter Gaby was born extremely premature due to pre-ruptured membrane first at 14 weeks. Our doctor advised us to be induced because in his professional experience it was too early in our pregnancy for this child to survive. My husband and I agreed to let nature happen and God’s will be done so I was sent home after 2 days in the hospital. A few days later, my doctor called and was shocked to find out that I was still pregnant so I was placed on complete bed rest in the hospital.

An ultrasound was done once a week until 26 weeks when our doctors couldn’t understand or scientifically explain how it was possible for this child to be growing and weighing appropriately with still no measurable amniotic fluid. A C-section was scheduled and we were before warned that our baby may not be fully developed or formed. Upon delivery, Gaby was taken away after just a glimpse into the Neonatal Intensive Care Unit (NICU). She was placed in an isolette, put on a mechanical ventilator, oxygen and all sorts of tubes and wires on her tiny fragile body plus crazy alarms going off every second. [Read more…]

Elijah Almighty

ElijahAge: 17 months
Weight at Birth: 1lb 8oz
Weeks Gestation: 28
Time spent in the NICU: 10 months

My Preemie Power Story: 

Well nothing could have prepared our family for this incredible journey we have traveled with our little miracle Elijah.  He was brought into this world very unexpectedly at 28 weeks and weighing 1lb 8oz!  We had no idea what a NICU was and how to navigate this new reality.

We knew Elijah was going to be in the NICU longer than most but never expected it to be almost a year.  Elijah fought through so many hurdles, infections, and surgeries.  Each time we would set a goal for a going home date and it would come and pass with no end in sight.

Then we were given the devastating news that Elijah would most likely never be making it home.  So we prepared our bucket list and just enjoyed our precious boy.  Well Elijah had other plans and proved to all of us that he was a fighter.  Over a few months our amazing NICU team prepared us to care for Elijah.  He would be going home with a tracheostomy, on a ventilator, and with a g-tube.  After 314 days in the NICU we finally got to bring our sweet boy home.  The first month was extremely challenging and even had some setbacks and re-hospitalizations.  It took some time but we are definitely so happy in our “new normal”, and proud to say we have been hospital free for 6 months.  Elijah has taught our family so much and we are blessed to watch him thrive and grow.

Super Hero Characteristics:

Always happy & smiling, strength, and hope

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!

Amazing Ava

Ava H

Ava H ~ Super Hero Alias: Amazing Ava

Current age: 2.5 years old
Weight at birth: 1 lb 2 oz
Weeks gestation: 24 weeks
Time in the NICU: 176 days in NICU, 278 days in PICU, Total of 454 days in hospital since birth

Diagnosis, surgeries, complications?

Trached & ventilated for 2-1/2 years, pulmonary hypertension, asthma, GJ, G-tube, micro-preemie, ROP, PDA, BPD, GERD, weak immune system, slow gastric emptying, severe developmental delays & more

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

Look up in the air, it’s a bird… it’s a plane… It’s Super Ava! My daughter Ava is a child who will make a difference in this world. Her inviting smile and story has already helped people have faith and hope. We were told from the beginning that she would never be viable (from 6 weeks on) but Ava’s heart stayed strong & healthy. Although she has gone through challenges most people don’t see in a lifetime, Ava has chosen to conquer life and take it on like “Super Girl”. She has fought numerous enemies like Lung Disease & infections with remarkable patience & ease despite being in the hospital most of her life. Being born as a micro-preemie hasn’t conquered Ava, but rather made her into a strong & loving Super Hero that has hurtled life with a single bound.

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

Courageous – Ava has been courageous from the start. From shaking her fist at the NICU nurses the night they told us she was going to die, to bravely getting monthly immunoglobin infusions & blood draws.

Super strength – A few days after Ava came home to us the first time, she needed chest compressions to revive her. On the way to the hospital in the ambulance after being revived, she watched Elmo on my lap as if nothing happened. This happened twice before the hospital discovered she had rotavirus.

Extra endurance – Ava went 6 weeks without amniotic fluid in utero. Her heart kept beating strong & despite the docs saying that she would never be viable, Ava came out fighting for the long haul. She has endured numerous induced comas while in the NICU & PICU which kept Ava from sitting up until she was over 1 1/2 years old. She started walking & being ventilator-free this July & no longer needs a trach to breathe.

Kind to Strangers – Ava always has a smile to share and can make someone’s day incredibly bright. She waves to strangers and reaches out her hand to invite them into her world of love.

To see more instances of Ava’s strength, you can view her blog at http://annhackett.blogspot.com

Note: This photo of Ava is the day that Ava’s trach came out & she breathed without any assistance.

Gallant Gabe

Gabe H. ~ Super Hero Alias: Gallant Gabe

Gabe HAge: 8 months
Weight at birth: 1 lb, 1 oz
Weeks gestation: 22 weeks
Time in the NICU: over 250 days

Diagnosis, surgeries, complications?

extreme prematurity, grade 3 and 4 IVH, G-tube (feeding tube), tracheostomy, and much much more

Why Should Your Child Be Recognized as Preemie of the Year?
He was under 23 weeks and less than 500 grams at birth, which the medical staff said, because of this, they would not resuscitate him when he was born. They gave us the choice to try everything which we said yes. They gave him a 1% chance of survival.  He wasn’t supposed to live past delivery, but he did. Then, he wasn’t supposed to live past the first few days, but he did.  The doctors said he wouldn’t live long so we should spend all our time with him… 8 months later he is doing way better than expected (although he still has his battles to fight) and he is a happy little baby boy.  He has overcome so many obstacles and impossibilities. He has shocked neonatal nurses and doctors. Superpowers?? I think so!!

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

Fearless, Invincible, Joyful

What advice do you have for future NICU parents?

Stay positive, take notes, have faith, be involved with child’s care, be open to outside support.

What kind of support would have helped you most during your journey?

It is very helpful to talk to other parents who have been through similar experiences.

 

Warrior Princess Ericka

Ericka L. ~ Super Hero Alias: Warrior Princess Ericka

Ericka LAge: 7 years old
Weight at Birth: 1 pound 4 ounces
Weeks Gestation: 27 weeks
Time in the NICU: 107 days

Diagnosis, complications, surgeries?
Failure to thrive, delayed, short gut, malabsorption, POV

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

My daughter was born early kicking and streaming. Followed by 10 surgeries from tracheostomy to g-tube. She has overcome having RSV twice and being in a coma for 3 months. To being in a respiratory code for four and half hours and living. She fought for four years to live and came up being the strong princess. She has fought to survive and made it through thick and thin. She is all preemie power on high. She was a caterpillar that came out and is now flying high as a butterfly in full color.  [Read more…]

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.

[Read more…]

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