Our Fighting Princess

KimberlyAge: 16 year
Weight at Birth: 2-1/2 lbs
Week Gestation: 26 weeks
Days Gestation: 4-1/2 months

My Preemie Power Story:

Kimberly came into this world with many strikes against her.  We became her foster parents and later adopted her.  We were told when we brought her home that she would only live a few months.  She is fed through a G Tube and has seizures, CP, Hydrocephalus, Microcephaly and sleep apnea.  She has had more than 30 surgeries, mostly for shunt infections or breakage,  She has had a spinal fusion, a hip removed, hip surgeries, her tonsils and adenoids removed and many others.  We almost lost her on 2 different occasions.  But she and God pulled her through.  She smiles, laughs and sings all the time.  We do not understand most of the words she sings but we recognize the tune immediately.  She is always happy.  She loves school and wakes around 4 to 5 am saying bye bye because she wants to go to school.  We have learned that the doctors don’t always know what kind of life the child will have or how long they will live.  Our fighting princess was given only a few months to live and on December 5 she will be 17 years old.  She is truly a miracle.  She is a ray of sunshine in our lives and we can not imagine our lives without her.  She so deserves to win this contest.

Super Hero Characteristics:

Happy, Fighter, Loving

Addy Bear

AddyAge: 1 year
Weight at Birth: 3lbs 12 ozs
Weeks Gestation: 32
Time spent in the NICU: 48 days

My Preemie Power Story:

Addison was born with hydrocephalus at 32 weeks by an emergency C-section. From day 1, she never failed to amaze with constant weight gain. Less than 3 days and she didn’t need any assistance other than a feeding tube. At about 1 ½ months old they decided Addison would need a shunt. Addison was struggling trying to eat from a bottle. The first day after surgery Addison was able to eat a full feeding from a bottle. Addison was released from the NICU to go home just 3 days after surgery. Addison has continued to go to OT/PT as an outpatient to ensure she isn’t having trouble hitting her milestones. They are amazed at how well she is doing with crawling/walking etc. They do not have to compare her with her adjusted age group because she is doing things just like any other 12 month old. Addison is a miracle to us. All preemies are “Preemie of the Year” they all have to overcome so much. 

Super Hero Characteristics:

Overachiever, amazing, determined fighter

Sir Dylan Eli the Dragon-Slayer

DylanAge: 20 months
Weight at Birth: 3lbs, 3oz
Weeks Gestation: 29
Time spent in the NICU: 101 days

My Preemie Power Story:

Dylan Eli was born 11 weeks premature on Valentine’s Day 2012, weighing 3lbs, 3oz, 15.75″ long. Today he weighs 22lbs and is just over 31 &1/2 inches long. The journey to today has been nothing short of miraculous!

The list of ailments Dylan has overcome is long, but most very common in premature infants. Very weak and unable to breathe without assistance, Dylan battled a dangerous bacterial infection for 101 days in the NICU. With the infection throughout his body, no one was sure he was going to live… except his moms! [Read more…]

Dallas the Invincible

Dallas P. ~ Super Hero Alias: Dallas the Invincible

Dallas PAge: 21 months
Weight at birth: 1lb 1 oz
Weeks gestation: 22 weeks
Time in the NICU: 287 days

Diagnosis, surgeries, complications?

Hydrocephalus, extreme short gut, chronic lung disease.
Surgeries: shunt, cvl placement, 2 shunt revisions, one cvl lime replacement, lasik, intestine removal (surgery name not sure), VAD placement, g-tube placement.

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

There is no particular reason why my child should win over all others. This past year she has made HUGE strides with her progress, developmentally. We have been told that she would be a vegetable, she would never eat by mouth, never do ANYTHING because she wouldn’t live to see two. She will be two January 7th! Within these past few months she has began to eat whole jars of baby food multiple times a day. She plays with her older brother, and is now starting to sit on her own.

I know many preemies are given negative outcomes and prove everyone wrong. I do not believe may daughter is any better than the rest, but I am really proud of the accomplishments she has made in such a short time. As well as becoming a BIG sister 3 months ago.

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

Strong,  courageous, invincible!

What advice do you have for future NICU parents?

Never give up hope. Even when all you hear is negative, there is always a rainbow at the end of the storm. Be there and be the voice for your little fighting miracle!

~ Super T Man ~

Travis A ~ Super Hero Alias: ~ Super T Man ~

Travis AAge: 12 months
Weight at birth: 2 lbs 11 oz
Weeks gestation: 28 weeks
Time in the NICU: 68 days

Diagnosis, surgeries, complications?

My son was diagnosed with low birth weight, severe anemia, grade III IVH  bilateral bleed meaning both sides, PVL, cyst in right ventrical, Hydrocephalus. He has had 8 blood transfusions and has had four TAPs done (a surgery to withdraw extra fluid off brain), GERD, and ROP. He has therapy every week.

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

Why should my son be Preemie of the Year is because he has overcome so much that the doctors didn’t think he would be able to do. Being diagnosed with Grade III bilateral bleed, pvl on both sides of the brain, cyst inside the ventricle, and hydrocephalus, there was some doubt that he wouldn’t be able to walk or talk. But with u/s weekly until we left the nicu then CT’s month (still going for them) the ventricles have enlarged a little but not much. So far no shunt (a device to drain extra fluid off brain) hasn’t been needed to be placed. He has proven the doctors wrong. He is sitting up, pulling up and trying to walk! He also started saying bye-bye as of yesterday (9-24-12). He’s a true miracle. I don’t want him to think he can never do anything in life because nothing compares to the NICU journey.

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

Courageous- he faces prematurity everyday.

Determined- he’s determined to beat prematurity and everything doctors say he might not be able to do.

Brave- He fought for his life and is such a happy baby boy!

What advice do you have for future NICU parents?

God put you through it, he will walk you through it! I love that saying, its so true! Also mom’s and dad’s, take lots of pictures and videos. Remember you’re your child’s voice. Ask questions and don’t be afraid to ask again. Talk to other preemie moms and dads. They’ve been there they understand, don’t hold anything inside. Take care of your self.

Warrior Princess Jasmine

Jasmine S ~ Super Hero Alias: Warrior Princess Jasmine

  • Jasmine SCurrent age: 5 years
  • Weight at birth: 4 lbs
  • Weeks gestation: 31 weeks
  • Time in the NICU: 62 days

Diagnosis, surgeries, complications?

Fought Group B Strep
Fought Bacterial Meningitis and because of this and the fact it was misdiagnosed she….
Ended up with Hydrocephalus
Has had 3 brain surgeries
Lost her hearing
Had Cochlear Implant Surgery
Has Global Delays
Has Brain Damage

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

Warrior Princess Jasmine was born at 31 weeks gestation but healthy! She was doing well in the NICU when she suddenly had blood in her stool. The pediatrician who was caring for her took some samples and sent them off and when everything checked out ok, he felt she was fine. After a week or more of this, WE were getting worried! The pediatrician kept saying because she was gaining weight and tolerating her feeds she was fine!

I went in to the NICU to visit her one day (she was approx. 4 weeks old at this point) and she was WHITE as a ghost and you could see all the veins in her body, I was sick to my stomach! I asked the nurse what was wrong with my baby and she told me Jasmine had been crying for a couple of hours so she had the pediatrician come take a look at her, but he once again said she was fine! I sat there holding her and bawling my eyes out! If I would move the slightest bit, she would moan in pain. It was heart wrenching. I knew something was terribly wrong! I asked the nurse why does she look so white? The nurse replied she just looks white to you because she is wrapped in a white blanket! WHAT?

After a few hours of witnessing her in pain I had to go home because I had to feed my family (I have three other children) but planned on going back up to see her after dinner. It was hard to leave her! I never got to eat, I received a phone call that she was being emergency transferred to Children’s Hospital! The pediatrician figured she had a twist in her bowel! My mom, dad and I prayed over Jasmine.

When Children’s hospital’s EMT got there, they had a very different attitude than the pediatrician. All they kept saying to us was “You have a VERY sick baby!” They sped off full lights and sirens.

When we arrived at Children’s hospital, we waited in a private room for over 3 hours while a team of 10 people stabilized her. They kept coming in and out giving us updates saying not to leave as they weren’t sure if she’d make it!

Later we were told, she tested positive for Group B Strep (late onset) and then the next day we were given the worst news ever, it was bacterial meningitis! Our poor baby, all this time she had been suffering through meningitis! Now she was given a slim chance of even surviving!

Being the warrior that she is, Princess Jasmine beat the odds and survived this terrible illness that so many don’t survive! She has also beat many other battles because of all of this!

She is and always will be OUR super hero!

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

Jasmine is a tough, brave, determined little warrior princess!

Note (posted 10/22/12):
I just want to thank everyone for their votes and remind you that you can view a video montage that I made up of Jasmine’s journey at the following link! It has pictures of what she looked like when she was going through all this, will help you understand what she really went through and what she has been through since.

What advice do you have for future NICU parents?

TRUST YOUR INSTINCTS! Be the voice for your baby! Don’t be afraid to ask questions!!

Always have a pen and paper in hand when talking to any professional in the NICU so you can write things down as you tend to forget what you’ve been told! Also write down questions you want to ask so you don’t forget when the opportunity comes up!

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!

The Mighty Pound

Aiden W

Aiden W

Aiden W ~ Super Hero Alias: The Mighty Pound

Age: 4 months
Weight at birth: 1 lb 10 oz
Weeks gestation: 24 weeks, 5 days
NICU stay: 109 days

Diagnosis, surgeries, complications?

RDS, Precipitous Delivery, Hypernatremia, Hyperchloremia, Hyperglycemia, Hyerlipidemia, Hyponatremia, Over 15 Blood Transfusions, Anemia of Prematurity, Respiratory Acidosis, Jaundice, Thrombocytosis, PFO, Chronic Lung Disease, Bilateral Grade 2 IVH, Post Hemorrhagic Hydrocephalus, Acute Renal Failure, Oliguria, ROP. Was on ventilator for over a month and is home now (still on oxygen/apnea monitor)

Why Should Your Child Be Recognized as Preemie of the Year?
Of course every preemie parent thinks of their child as “Preemie of the Year” but I think Aiden deserves to be recognized as “Preemie of the Year” because he has overcome what so many people didn’t believe was possible. He was blessed from the moment he was born. They always say a baby born still in the amniotic sac is a blessed baby. That was the case with Aiden and as soon as they broke the sac he started breathing and crying all on his own! It was the best sound in the world since we all know that it was highly possible for him to be born not breathing at all.

Aiden had plenty of good days in the NICU but he had multiple bad days as well. It hurts so bad being a parent and seeing your precious baby lay helpless in an incubator struggling just to breathe. Every time they would diagnose him with a problem he found the strength to overcome it. He didn’t let anything keep him down for long and he kept on proving everyone wrong. He’s our little miracle and he is proof for everyone out there that miracles can happen and that if you are there by your baby’s side in the NICU then they will find the strength to pull through.

Aiden came home the day after his due date (September 5th, 2011) and is up to 9lbs 8oz now. He is still on oxygen and apnea monitor but we are so happy to have him home.

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

Aiden’s first super-hero power would have to be Super-Strength like The Hulk. Without this power there is no way he would have been able to defeat the stay in the NICU. Using his Super-Strength he has beat down his premature lungs, his brain bleed, and his hydrocephalus and is still going strong and ready for whatever comes next!

Aiden’s second super-hero power is Accelerated Healing like Wolverine! He showed us this power in his first few weeks of life. When he was touched or had leads on him they left abrasions and his skin would bleed and bruise because his skin was so thin. Aiden didn’t let this bring him down and he would heal himself very quickly. Now he has a few tiny scars from it but you can barely tell that he ever had to go through such pain.

Last but not least, Aiden’s third super-hero power is Bravery like every super-hero. Aiden has showed us tremendous amount of bravery since the day he was born. He was ready to come into this world and when he got here he showed us the true meaning of how to be brave. He fought hard and didn’t cry at all. He took all the poking like a man which shows me that he is brave enough to do anything is this world and that is why I know he is going to grow up and do big things.

What advice do you have for future NICU parents?

Don’t lose Hope.

There is a book titled “PREEMIES” (large green letters on front) BUY IT!!! It’s basically the “What to expect” book for the NICU and anything that could possibly go wrong in there and in PLAIN language. It helped me understand a lot more about what my baby boy was going through and what the pros and cons were of every procedure.

Don’t be afraid to talk to people about how your feeling and what you are going through. Have a support “person” or “group” We stayed at the Ronald McDonald House and it helped us a lot because we were able to talk to other parents that were going through the same thing.

Last but not least, Pray everyday.

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 services are amazing. It gives parents hope and a way to see that other Parents are going through the same thing. It gives Parents peace of mind knowing that other children have been strong and survived being a preemie.

The best kind of support is knowing that you aren’t alone.

Captain BAM!

Bryce M. ~ Super Hero Alias: Captain BAM!

Bryce MAge: 2-1/2 years old
Weight at birth: 1 lb, 8 oz
Weeks gestation: 24 weeks
Time in the NICU: 150 days

Diagnosis, surgeries, complications?

24 week Micropreemie, Grade III & IV brain bleeds, Hydrocephalus, VP shunt, Retinopathy of Prematurity, Cortical Visual Impairment, Cerebral Palsy, Developmental Delay, Over a dozen surgeries to date

Why Should Your Child Be Recognized as Preemie of the Year?
A true preemie hero, Captain BAM! overcame seemingly insurmountable odds: being born at home, severe brain hemorrhages, struggling for months in the NICU to learn to breathe without a machine, and much more.  Captain BAM! is the living, breathing symbol of tenacity, bravery and the power of a mighty will to live!

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

Vowing to defy even the scariest of odds, Captain BAM! faces all evils head on, literally – brain bleeds, hydrocephalus and even multiple brain surgeries.

He laughs in the face of medical adversity as he continues to meet milestones never imagined for him.

And though his vision may be imperfect without his Blue Spectacles of Might, his heightened hearing prevents evil tickle monsters or boogeymen from sneaking up unannounced.

Perhaps Captain BAM’s most formidable super power of all though is his innate ability to charm. He can charm a needle-toting nurse or a stranger at dinner with a single glance and a mere glimpse of his intoxicating smile.

But have no fear, Captain BAM! is here. He’ll brighten your day, instill hope in your heart and make your thankful for all that you’ve got!

What advice do you have for future NICU parents?

Be active in the Hand to Hold network, it’s an invaluable tool for navigating the crazy, unpredictable post-NICU life.

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?

Being able to pick up a phone, send an email or have coffee with another mom who knows and understands my fears, my hurts, my little triumphs and my huge disappointments is the only real support I need that my friends and family just can’t offer.
Hand to Hold gives us the tools necessary to make the best decisions we can for our Bryce while also making the process of raising a preemie feel less isolating. I can honestly say that I don’t know where I would be today without the support and resources that Hand to Hold has given my family.

King Josiah

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

Josiah N. ~ Super Hero Alias: King Josiah

Age: 18 months
Weight at Birth: 8 lbs 3 oz
Weeks Gestation: 37 weeks
Time in the NICU: 11 days

Diagnosis, complications, surgeries?
Spina Bifida, Hydrocephalus, Arnold Chiari II Malformation

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

We were told Josiah wouldn’t walk and some doctors suggested severe mental delays.  We were told that Josiah would be a vegetable needing 24-hour care.  Let me say, Josiah is proving them wrong!  He is crawling all over the place and is gaining hip and thigh movement.  Since birth, Josiah has had 8 surgeries.  He has overcome a lot of obstacles, and he is the happiest kid you’ll ever meet. He talks nonstop. He is learning sign language and currently knows about a dozen different signs.  He can also tell you about colors and loves to be read to.

[Read more…]