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Twintastic Wonders

April 3, 2013 by 1 Comment

Amelia & Jackson P ~ Super Hero Alias: Twintastic Wonders

Amelia & Jackson PAge: 15 months
Weight at birth: 2 lbs 1 oz, 2 lbs 2 oz
Weeks gestation: 27 weeks 2 days
Time in the NICU: 54 days

Diagnosis, surgeries, complications?

Grade I IVH, ROP, Chronic Lung Changes (with additional breathing/lung complications and 14 months of oxygen therapy), several blood transfusions

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

Jackson and Amelia have overcome everything that’s been thrown at them to become two of the healthiest and wild 1 year olds you will ever meet. Not only are they healthy, they are by far the happiest babies in town. If we hear one thing about them all the time, it’s how happy and smiley they both are. They have kept smiles on their faces at all awake hours of the day despite countless hours/days/weeks/months in hospitals and doctors offices. We have never had a week without a medical appointment. They’ve been poked, jabbed, and prodded like no other baby, yet they never cry. They have truly been an inspiration to their parents, grandparents, aunts, uncles and friends of how to enjoy life and despite the bad, keep a smile on your face. They seem to find the good and funny things in every situation, even if its a funny noise their oxygen machine makes or the little baby blinking on the thermometer. They probably have more medical knowledge than most adults and can take their own temperatures, help put their medicine in the nebulizer, and pour water in the humidifier of their oxygen machine.

They amaze us everyday with how much healthier and stronger they get. I’m happy to say most of their prematurity issues have corrected themselves, they are making strides in catching up developmentally, and have surpassed every doctor’s expectations for them. If the past year has been any indication of what strong, happy, powerful people they are, I can’t wait to see what their future holds for them. They have been superstar preemies and definitely deserve the title of “Preemie of the Year”.

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

courageous, determined, positive, uplifting, encouraging, powerful

What advice do you have for future NICU parents?

Just breathe and take it one day at a time.

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T-Man Superman!

March 16, 2013 by Leave a Comment

Tanner H. ~ Super Hero Alias: T-Man Superman!

Tanner HAge: 14 months
Weight at birth: 1lb 11oz
Weeks gestation: 27 weeks
Time in the NICU: 148 days

Diagnosis, surgeries, complications?

He had to have a g tube inserted in order to eat. He has not needed to use it for a few months now! He likes to eat his solid foods!

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

Tanner and Trenton were born at 27 weeks gestation. They had twin to twin transfusion syndrome. Trenton weighed 2lbs and was 12 inches long. Unfortunately he passed away 5 hours after birth. Tanner, however, stayed strong and fought for his life. He has over come many obstacles. He was in the NICU for 148 days. When he finally came home, he used a g-tube for all his feedings. When he started eating solid foods, he stopped needing the tube. He now takes all his formula through a bottle and he eats just fine! At 14 mos old, he weighs 13 lbs and just learned to crawl! He is an inspiration to many people! There’s nothing he won’t be able to conquer!

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

Tanner is a very brave little boy! He does what he needs to do in order to be healthy! He is also very strong! He has the will and determination to do anything! Even when doctors and nurses didn’t think he would make it, he fought through! He is also extremely handsome, which I think every super hero needs to be! LOL He loves people and he loves to smile! He can make anybody laugh! Tanner truly is our superman!

What advice do you have for future NICU parents?

Take one day at a time! Don’t worry about tomorrow…just get through today! Cherish each precious moment and celebrate every little milestone!

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Miracle Super Brothers

March 3, 2013 by Leave a Comment

Marco & Carlo F. ~ Super Hero Alias: Miracle Super Brothers

Marco and Carlo FAge: 9 months
Weight at birth: 6 lbs
Weeks gestation: 35 weeks
Time in the NICU: 3 weeks

Diagnosis, surgeries, complications?

My twins were born early because I had preeclampsia and pregestational diabetes and high blood pressure. My pregnancy condition put a lot of stress on me and the babies, but they continued to grow strong and normally. They are fighters.

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

They are brave and have a will and determination to do anything.They love to try new things and love to have fun. They are very happy boys. They smile a lot and laugh a lot.

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

Strong, Brave, Courageous, Lovable, and Smart

What advice do you have for future NICU parents?

Cherish every moment,and take it one day at a time.

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Super Twinies!

February 24, 2013 by Leave a Comment

Madison & Makenzie B. ~ Super Hero Alias: Super Twinies!

Madison and Mackenzie BAge: 2 years old
Weight at birth: 3lbs 6oz and 3lbs 4oz
Weeks gestation: 31 weeks
Time in the NICU: 42 & 49 days

Diagnosis, surgeries, complications?

31 weekers, One baby had e-coli which needed a spinal tap, sleep apnea and breathing issues

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

In my eyes after going through what I went through all preemies should be preemies of the year :) However, my twins should be recognized as “Preemie(s) of the Year” because of their life because given the worst hands of cards they managed to make our home a full house in weeks. Born at 31 weeks due to Baby A placenta abruption, our family was told this whole thing will be a 50/50 battle. As with any and all preemie families, everyday is a new battle, victory and roller coaster. Our girls pulled through and pulled us through what we thought was a never ending pain feast. In their 6 and 7 week NICU journey myself and my family knew true love, faith and the precious gift of life.

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

Madison’s Super Hero characteristics are strong, charismatic, fighter, and brave.

Makenzie’s Super Hero characteristics are fighter, fast as lightning, brave, and strong.

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Miracle Twins

February 6, 2013 by Leave a Comment

Aiden and Ethan S ~ Super Hero Alias: The Miracle Twins

Aiden and Ethan S.

  • Current age: 6 years
  • Weight at birth: 1lb 14oz/1lb 6oz
  • Weeks gestation: 24 weeks
  • Time in the NICU: 150 days

Diagnosis, surgeries, complications?

Micro-preemie twins:  PDA (resulting in heart surgery), ROP (resulting in eye surgery), Failure to Thrive (resulting in G-tube surgery), Double Hernia (resulting in hernia repair surgery), Chronic Lung Disease (resulting in 1 year on O2), brain hemorrhages, seizures, cerebral palsy, rickets, sepsis, social sensitivity.

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

My twins should be recognized as Preemies of the Year because they have struggled so hard for the last 6 years to overcome unbelievable odds and obstacles.  They were given a 5% chance of surviving and being healthy – and after 6 months in the NICU, 3 years in isolation, numerous surgeries and hospitalization, and years of therapy – I’m so happy to say that they’re doing amazingly well and just started kindergarten.

They’ve had to work so hard during their short lives just to live and to grow, I feel like their childhood and opportunities to just have fun have really been affected.  As parents facing medical bills that have run in the hundreds of thousands of dollars, we haven’t been able to focus on much other than just providing the basics.

This Disneyland trip would be our first family event as a “normal” family and would mean the world to all of us.

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

Aidan and Ethan are more than just strong, brave and resilient.  They are inspirational to all that meet them.  Not only did they encounter so many obstacles in their lives – they have gone on to test on the genius scale.  They are absolutely brilliant.  Both boys taught themselves how to read at age 2. Now they are studying science, math, and foreign languages.  They are truly inspirational and I believe they will go on to do amazing things – possibly even cure prematurity!

Note (posted 10/29/12):

I just wanted to sent you a note saying thanks, and add a personal story around my boys’ entry “Miracle Twins”.

Aidan & Ethan were born at 24 weeks, had a 5% chance of surviving and being healthy, and spent 6 months in the NICU and 3-1/2 years in isolation.  Needless to say, it’s been a LONG journey for them (and us!)

It was kind of a family joke while they were in the NICU, I would tell them “just survive this and I’ll take you to Disneyland.”  As they got older and had more complications, more surgeries, and more hospitalizations, I continued to tell them “someday you’ll be healthy and we’ll go to Disneyland”.  Disneyland got to be the trigger of healthy.

This year, Ethan had his feeding tube removed.  For the first time ever my boys are tube/wires/monitor free!  And of course –  now they’re saying It’s time for Disneyland! I feel like this competition couldn’t have come at a better time for us.  My kids are finally healthy and they deserve this so much.  This would allow us to give them this experience.

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The Dynamic Drooling Duo

January 22, 2013 by Leave a Comment

Jacen and Spencer G ~ Super Hero Alias: The Dynamic Drooling Duo

Jacen and Spencer G

Age: 6 months old
Weight at birth: 2lbs 13oz and 3lbs 3oz
Weeks gestation: 29 weeks and 4 days
Time in the NICU: 62 days

Diagnosis, surgeries, complications?

Jacen – Apnea, bradycardia, pneumothorax, anemia, grade I brain bleed, reflux, torticollis, plagiocephaly.
Spencer – Apnea, bradycardia, anemia, grade II brain bleed, severe reflux, torticollis.

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

Jacen and Spencer are a dynamic duo. From their first ultrasound videos at only 8 weeks gestation, it was obvious they were strong. When mom went into preterm labor at 28 weeks and 1 day, everyone thought they would be arriving very soon, but the boys fought to hold on for ten more days before being born on their father’s birthday. After a few very scary weeks, Jacen and Spencer became “feeders and growers”. During rounds every Tuesday morning, the doctor would say, “Here are Jacen and Spencer; they are pretty boring.” Medically boring, maybe, but superhuman exciting. They deserve to be “Preemies of the Year” because they have fought hard to catch up in growth and development comparable to other babies of their adjusted age.  They are a model of strength and an inspiration to other preemies.

I wanted to also share that we have a blog about their journey, beginning before they were even conceived. http://oneplusoneismore.blogspot.com/

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

Jacen is physically strong. He has the strength of a 6 month old in a 4 month old’s body. He constantly surprises doctors and therapists with his physical prowess. He battled the evil Pneumothorax on his own when the doctors were convinced he would need a chest tube. The doctors were then convinced that he would require a transfusion for the wily foe Anemia, but he bested that on his own as well. He is intelligent, constantly investigating and exploring the world around him. He is a doer and would much rather study his toys, or tools rather, than lay down to take a nap. Finally, Jacen is fearless. He does not back down from a fight, whether it’s from a preemie-related foe or with his brother over a pacifier.

Spencer is extremely compassionate. He seems to have a sixth sense when someone, especially mommy, needs an extra snuggle. He is hard-working and has overcome many physical obstacles. He has had to battle the evil villain Severe Reflux. With the help of his sidekick, Prevacid®, he has been able to knock that foe out. Spencer is also inspirational. No matter how tough things have been, he has fought foes with an inner strength few know.

What advice do you have for future NICU parents?

The NICU journey is a marathon, not a sprint.  It doesn’t end at discharge day but homecoming is something to look forward to.  Take lots of pictures because there will come a day, in the not too distant future, where you won’t believe your child was ever that small.

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Tiny-N-Tuff

January 16, 2013 by Leave a Comment

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.

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The “Real” Dynamic Duo

December 27, 2012 by Leave a Comment
Gabe and Sam W

Gabe and Sam W

Gabe  & Sam J ~ Super Hero Alias: The Real Dynamic Duo

Age: 8-1/2 months
Weight at birth: 3.4 lbs (Gabe) and 3.6 lbs (Sam)
Weeks gestation: 29 weeks, 5 days
NICU stay: 58 days

Why Should Your Children Be Recognized as Preemies of the Year?
We were told after the initial “surprise!” of being pregnant with twins, that the pregnancy would, if nothing else, be shorter.  After a really scary day around the 14 week mark, we were put on red alert.  Bed rest followed, and at 27 weeks the boys tried to come early.  After a three hour ambulance ride, and a short stint in the hospital, the arrival was averted.  The boys were still in the oven, hopefully back on schedule.

But they wanted out, and two weeks later, after another 3 hour ambulance ride, and a few hours in the hospital, they were born.

Fortunately, our boys escaped many of the pratfalls that many preemies encounter.  The only reason they stayed in the NICU for so long was because they couldn’t quite keep their oxygen levels up without low-flow oxygen assistance.

Or so we thought…

What we now know is that Gabe and Sam came early to save not just our lives, but the lives of every person on the entire planet.

While in the womb the boys learned of the imminent arrival of evil space hamsters from a small planet many light-years away.  How did they learn this?  It is not for you to know, but they did.

After their birth, Gabe pulled the classic “hey what’s that over there!” trick.  Everyone in the room turned to look of course, because who could believe such a cute little baby would pull one over on them?  Whilst attention was diverted, the boys used their superior mind powers to create exact replicas of themselves, which they left behind in order to go fight the horde of evil space hamsters.

It was a glorious battle, unevenly matched of course because our boys are awesome and it was only evil space hamsters. But the evil space hamsters had numbers on their side, so it took 58 days for Gabe and Sam to defeat the evil space hamsters (yes, I have to keep typing the whole name out).

Afterwards, Gabe and Sam returned to the NICU.  The boys traded places with the clones, and were thankful that the doctors never caught on to the fact that they had been treating clone replicas (because everyone knows that clone replicas can’t breathe well without oxygen assistance, duh…).

They’ve been home over six months now, and along with their older sister, who herself is the basis for the Wonder Woman character (the guy who created that character traveled into the future and saw her of course…) have been fighting evil-doers ever since.

So our boys deserve to be preemie(s) of the year because they saved your lives. How about a little gratitude.  ;D

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

Awesome, Strong, X-ray vision

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One Pound Wonders

December 14, 2012 by Leave a Comment

Camdyn & Cade H – Super Hero Alias ~ One Pound Wonders

Camdyn and Cade H

Camdyn and Cade H

Age: 18 months
Weight at birth: 1 lb, 2 oz and 1 lb, 8 oz
Weeks gestation: 24 weeks
NICU stay: 133 days

Diagnosis, surgeries, complications?

Camdyn – PDA ligation, grade II head bleed, collapsed lungs, chronic lung disease, intubated 5 weeks

Cade – PDA ligation, grade II head bleed, pneumothorax (air pocket in lungs), paralyzed vocal cord, g-tube surgery, plagiocephaly, chronic lung disease, vented 5 weeks

Why Should Your Children Be Recognized as Preemie of the Year?
The One Pound Wonders came into this world 16 weeks early weighing a mere 1 lb 2 oz (Camdyn) and 1 lb 8 oz (Cade). From the first day of life, they had to valiantly fight off all the evil NICU villains, those malicious micro-preemie harmers – IVH, PDA, ROP, CLD, and the gang. After 133 days of continuous fighting, they left the NICU battlefield. The One Pound Wonders encountered still more battles. They spent over a year fighting off the evil Feeding Fiend who caused them both to deal with major feeding issues. Cade used his magic g-tube portal to gain superhero strength to eventually conquer this evil enemy. Camdyn, although tiny, showed her fierce superhero powers to overcome this enemy on her own. The One Pound Wonders continue to gain strength and power in their superhero training camps, aka occupational, physical, and speech therapy weekly. They have left the world in awe of their amazing powers – the power to eat, breathe, walk, talk, and most importantly, live after being given only a 30-40% chance of surviving! The One Pound Wonders have proven to the world that miracles exist.

To follow their progress, visit our blog at www.camdyncade.blogspot.com.

To watch a slideshow of their incredible journeys, visit http://www.youtube.com/watch?v=il0NdAfvzQI.

Although it would be a huge honor to be recognized as Preemies of the Year, we are entering the contest in hopes of being recognized with the Thundering Thurston award (entry with the most votes). We need your votes to help us achieve this. The amazing Thundering Thurston was in alliance with our One Pound Wonders in the same NICU. I am honored to be friends with Thurston’s incredible mother. We walked through our NICU journeys together supporting one another along the way. We would be so honored to win the Thundering Thurston award in memory of this amazing baby boy who touched the lives of so many.

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

The One Pound Wonders have demonstrated their superhuman powers with their strength – they had to endure so much pain throughout their NICU journey, their endurance – they work so much harder to accomplish milestones that come easily to others, and their perseverance – they never gave up even though the odds were stacked strongly against them. They will continue to leave the world in awe and wonder at all they will accomplish!

What advice do you have for future NICU parents?

Connect with other parents who understand what you are going through.  Also, be your child’s advocate.  You know your child best.

Describe how Hand to Hold’s services are meaningful to you and future families. What kind of support would have helped you most during your journey?

Hand to Hold’s quarterly discussions have given me great information to navigate insurance, therapies, specialists, etc. after my twins came home from the NICU.

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Ikey the Invincible & Resilient Reagon

November 17, 2012 by Leave a Comment

Ikey and Reagon K

Ikey and Reagon K. ~ Super Hero Alias: Ikey the Invincible & Resilient Reagon

Age: 8 years old
Weight at birth: 1 lb, 15 oz each
Weeks gestation: 26 weeks, 5 days
Time in the NICU: 97 and 98 days

Diagnosis, surgeries, complications?

Reagon: Grade 3 bleeds in both sides of brain, PIE, multiple blood transfusions, constant As and Bs, PDA, asthma.

Ikey: mild ROP, bilateral inguinal hernia repair, multiple blood transfusions, constant As and Bs, PDA, asthma.

Why Should Your Children Be Recognized as Preemies of the Year?
These little boys were not supposed to do as well as they have.  I had been in the hospital for the week before they were born being treated with magnesium sulfate to stop the labor.  Contractions subsided, so I was discharged on a Thursday morning.  I went home on strict bedrest (had already been on bed rest since 24 weeks.)  Four hours later, with severe pain, my husband rushed me to the hospital, 10cm on arrival, and within 21 minutes, Ikey and Reagon were born by emergency c-section.  They had an extremely rough start, and several weeks of the unknown.

Here are a couple of things they endured while in the hospital. Doctors had to work to collapse Reagon’s lung to hopefully relieve him of all of the pockets of fluid in it (PIE), at the same time as watching his grade 3 bleeds in his brain.  He endured so many As and Bs in the hospital, that there were not even spots in the chart to record them all.  He was finally discharged from the NICU after three months, only to stop breathing in my arms at home two days later.  He had an undiagnosed UTI and was septic.  He was rushed to Children’s, which was at Brack at the time, and was revived.  He was a very sick little baby. Now, he is a robust 60 pound 8 year old third grader, who plays tennis, baseball, football, and rides his bike to school.

Ikey endured multiple blood transfusions. When we would arrive at the NICU to visit the babies, Ikey would be a dark red color, and we knew he had received more blood that day.  He had many more tranfusions than his brother.  He had minor ROP, and during his last week in the NICU, when he was stable enough, he had bilateral inguinal hernia repair.  He, too, had constant As and Bs during his stay.  Too many to count.  He now is a whopping 55 pound 8 year old third grader.  He is also very active and loves football, baseball and tennis.

When the boys were admitted to the NICU, they were put in the far back corner of bay 6.  They stayed in that spot for two and a half months.  They were never feeders and growers.  They were just trying to breathe.  They are both amazing, smart, humorous, athletic, and just wonderful.  They love to play sports with their big brother Walker, age 9 (35 weeker) and their friends.  They are just a delight to be around.

Why should these little boys be recognized as “Preemies of the Year”?  Well, they are just remarkable little boys who have been through far more than most people will ever go through in their entire lives.  And, thanks to the fantastic doctors and nurses at the Seton NICU, they are here with us today and could not be doing better!

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

Ikey: invincible, adventurous, extraordinary.

Reagon: resilient, courageous, amazing.

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