Courageous Caiden

Caiden ~ Super Hero Alias: Courageous Caiden

CaidenAge: 4 years old
Weight at birth: 1 lb 7 ozs
Weeks gestation: 36 weeks
Time in the NICU: 88 days

Diagnosis, complications, surgeries? 

A few days after Caiden was born they found out that he had a hole in his heart. He was sent over to another hospital and had a PDA ligation. Soon after that we found out that he needed to have a VP shunt. At 2years old we were told that he had Spastic Dyplegic Cerebral Palsy.

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

Caiden has the special powers of brightening anyone’s day!! Through everything that he has been through and still to come he always has a smile on his face. [Read more…]

Kolyn the Lil Wonder Monkey

Kolyn ~ Super Hero Alias: Kolyn the Lil Wonder Monkey

KolynAge: 10 days old
Weight at birth: 7lbs 6oz
Weeks gestation: 36 weeks
Time in the NICU: 10 days and counting

Diagnosis, surgeries, complications?

Lung Disease (premature lungs)

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

My baby boy is 10 days old and should be recognized as preemie of the year because he is a miracle. We tried 3 yrs to conceive him and almost lost him 3 times during pregnancy. Now he is sick in the NICU struggling to breath and he is such a good baby. He doesn’t fuss much, just sleeps. He has made a really big impact on my whole family life. He is the first baby we have ever experienced being in the NICU and we are not sure when he will be home yet.

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

He is strong, brave and powerful.

What advice do you have for future NICU parents?

Try to stay calm around your baby. Know that the NICU nurses and doctors are doing what is best for your baby. Try not to get upset at them when he is not home. Yet always ask questions if you don’t understand. It is okay to cry. Don’t ever feel like it is your fault and never give up hope.

Amazing AnnaLei

AnnaLei R. ~ Super Hero Alias: Amazing AnnaLei

AnnaLei RAge: 5 weeks
Weight at birth: 10 lb 6 ozs
Weeks gestation: 36 weeks
Time in the NICU: 19 days

Diagnosis, surgeries, complications?

Oxygen Tube, Feeding Tube, Acid Reflux, DeSat Episodes, Sent Home With Apnea Monitor

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

My child should be Preemie of the Year Because…after a long and complicated pregnancy and issues with her being born she still fought hard and shows that she is getting better everyday.

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

Strong, Powerful, Amazing

What advice do you have for future NICU parents?

Be patient. I just barely went through this and I had everyone telling me that at the time but it is so true.  Have faith if they are in NICU it’s for a reason.  It is where they need to be.  When you bring your baby home, you want them to be ready to come home not a moment sooner.

Boogie Man Bryson

Bryson S ~ Super Hero Alias: Boogie Man Bryson

Bryson SAge: 2-1/2 months
Weight at birth: 4lbs 8 oz
Weeks gestation: 36 weeks
Time in the NICU: 6 days

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

My son Bryson was a very strong preemie when he was born. He was also very alert. The only problem he had at first was that he could not eat more than 10ccs and had a hard time sucking on the bottle.

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

Strong, alert, and happy

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!

Lonestar Luke

Luke W

Luke W

Luke W ~ Super Hero Alias: Lonestar Luke

Age: 2 years old
Weight at birth: 3 lbs, 9 oz
Weeks gestation: 36 weeks
NICU stay: 44 days

Diagnosis, surgeries, complications?

Luke’s list is bigger than Texas! He began life as an IUGR baby (he didn’t grow well in utero) and had a pelvic kidney. Then, we discovered two holes in his heart (VSD and PDA), a tethered spinal cord and an incomplete skull.  We breathed a sigh of relief, until a nasty villain showed up, necrotizing enterocolitis (NEC). We had an emergency transport to Dell Children’s where Luke underwent emergency bowel surgery and lost 16cm of bowel and his appendix. We owe Luke’s life to his surgeon, neonatologist and an army of prayer warriors.

Why Should Your Child Be Recognized as Preemies of the Year?
Lonestar Luke may have come out tiny for a 36-weeker, but the lessons he taught us have been bigger thanTexas:  patience, trust, surrender, joy and thanksgiving.  There have been many times Luke’s life hung in the balance.  Yet, he’s a tough cowboy and keeps defying the odds and surprising his specialists – all ten of them.  Somehow, he roped his specialists into five surgeries on his belly, spinal cord and ears (one more to go on his brain) and eight hospital stays.  One of his biggest nemesis’ didn’t show his face until surgery number four; he and cephalosporins are arch enemies.  But, once he got a shot of new blood and plasma, his sharpshooting skills were better than ever.  The chuckwagon still doesn’t hold much appeal for him; he’d rather drink his calories than eat them.  He does have two mighty cute cowgirls (speech and occupational therapists) that are working to convince him otherwise.  He’s still a wrangler of few words, but he does have a mighty fine laugh, big blue eyes and a soft spot for animals.  You’d have to ride the range a long time find a tougher cowboy than our Lonestar Luke.

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

Tone of Surprise:  Lonestar Luke is an expert in surprising his enemies, like blood allergies and developmental delays.  Just when they think they’ve corralled him, he makes an escape for greener pastures.

Strong-willed:  Luke’s four siblings don’t offer their cowboy brother any slack.  He has to arm wrestle for his favorite toy, run like the wind when he wins it from his brothers and sweet talk his sisters when they take it away.

Hero:  Our 3lb. 9oz. cowboy came out galloping and has become a hero to his siblings, his parents and his friends.  His brawls have been many, but he comes out stronger each time.

What advice do you have for future NICU parents?

Get a Hand to Hold mentor.  Learn to say “yes” when people ask if they can help.  Seriously.  Give them a job and ease your stress.  Pump if you can, that breastmilk is gold.  Cut yourself some slack.  This is, quite possibly, the hardest thing you’ll ever do.

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?

My Hand to Hold mentor, Kelli, gave me much-needed sanity, a big hug, a cold Dr Pepper, plenty of chocolate, a listening ear, sound advice and a heart full of understanding.  No website, no book, no brochure can give you all that…only a parent who’s been there before.

Super Wy

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

Wyatt G. ~ Super Hero Alias: Super Wy

Wyatt GAge: 14 months
Weight at Birth: 6 pounds 6 ounces
Weeks Gestation: 36 weeks, 3 days
Time in the NICU: 12 days

Diagnosis, complications, surgeries?
Respiratory Distress Syndrome, pulmonary hypertension

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

Wyatt and his twin, Mason, were born prematurely. We knew Wyatt was big for a twin of his gestational age and once I passed 36 weeks my doctor indicated that the babies probably would not have any serious health problems. Unfortunately Wyatt turned blue just a few minutes after he was born and was struggling to breathe on his own. He was moved to the NICU and put on oxygen. It was determined that his lung development was immature and he was diagnosed with Respiratory Distress Syndrome. The doctors were troubled when he had not made any improvement after three days, which is typically when RDS babies have turned the corner. They indicated that there might be something more serious going on, but everything seemed to check out and we just had to wait for him to get better. He was such a strong little guy and he fought so hard and after six days in the NICU on oxygen he finally started to improve. He was a very feisty baby and he had a reputation with the NICU nurses for pulling off his canula and pulling out his OG/NG tube and IVs! We were so excited when he finally began to wean off of the oxygen after about 10 days and after 12 days he was ready to come home to us. Wyatt really struggled with gross motor delays for the first 8 months of his life. He started occupational therapy when he still wasn’t sitting at all, even tripod sitting, at 7 months old. We worked diligently on his exercises and after 6 weeks he was able to sit on his own. He has been such a little fighter and so strong and now at 14 months he is completely caught up on gross motor, walking all over the place with his brothers. We are so proud of what a strong fighter and hard worker our little Wyatt is.
[Read more…]

ELLABELLABOO!

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

Ella S. ~ Super Hero Alias: ELLABELLABOO!

Ella SAge: 9 months
Weight at Birth: 5 pounds 10 ounces
Weeks Gestation: 36 weeks
Time in the NICU: 3 weeks

Diagnosis, complications, surgeries?
Ella had trouble breathing, maintaining safe temperature and experienced a drastic drop in heart rate.

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

Our little Ella Bella is our little super-hero. She has surprised us from day 1  starting with conception and her unlikely survival to her due date, given complications around conception issues. We feel like she kind of, well, “chose us” and then gave us a run for our money in the beginning–a hardiness test, you could say, while we made it, all together, through the trials and challenges of the NICU. She’s a preemie of the year because she’s our preemie of our lifetime.
[Read more…]

Reece: The KING of the NICU!

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

Reece O. ~ Super Hero Alias: Reece: The KING of the NICU

Reece O.Age: 12 months
Weight at Birth: 7 pounds 3 ounces
Weeks Gestation: 36 weeks
Time in the NICU: 39 days

Diagnosis, complications, surgeries?
Reece was born with an Omphalocele, which is an abdominal wall defect resulting in his liver being completely outside his body at birth. In addition, he had 2 inguinal hernias.

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

Reece was termed “The King of the NICU” from the very beginning by all the doctors and nurses due to being such a big boy and such a fighter (he needed a crib after the first week)! The title seems so ironic on one hand given all the battles that he had to overcome, most of which were unexpected. And yet, the title is so fitting on the other hand given he has managed to overcome them ALL!

After all the hurdles of the NICU and believing “the journey” to be over…

*5 days later the inguinal hernias recurred.
*1 month later he developed a wound infection (2 week hospital stay).
*3 months later, the infection occurred again resulting in another 2 week hospital stay, IV antibiotics,surgery (number 3) opening his entire abdomen and a wound vac (surgery number 4).
*3 months later, he developed a bowel obstruction from scar tissue resulting in a 2 1/2 week stay in PICU, surgery number 5, 2 chest tubes, 5 day intubation, and 4 different central lines.

And yet, despite ALL of these crazy setbacks and spending a total of 3 months of his first year of life in the hospital…Reece is in the 85% for height and 60% for weight. He is on track for ALL developmental milestones, has no apparent long term difficulties, and has the most contagious smile you have ever seen. His friends and family have nicknamed him “TROOPER” due to his incredible ability to overcome the odds and push ahead no matter what obstacles get in his way. He is OUR Superhero of the Year! He has changed us all for the better and no doubt will continue to reach amazing heights in his life!
[Read more…]

Marty and Tim Barnes and Their Daughter Casey

Casey BarnesMy entire world changed the day my daughter, Casey, was born–April 23, 2006 just a few days shy of 37 weeks gestation.  Due to a birth trauma, she suffered a severe brain injury. The brain injury led to a handful of other health complications.  The first two months were spent in the NICU.  Then, when we finally did get home, we spent the next six months just trying to figure things out.  The past five years have been spent doing everything in our power to keep her as healthy and happy as possible.  We have had some great days, and some terrifying.  My daughter is without a doubt the most amazing person I have ever met.  She has inspired me in so many ways.

One day a friend of mine asked if I had heard of Hand to Hold.  She went on to tell me the general idea behind Hand to Hold and suggested that I contact Kelli.  When I pulled up the web page and began to read the history and how Hand to Hold came to be, I could not believe my eyes.  I felt like I had just found my long lost sisters.  There were so many times that I wished, even begged doctors, for another family to talk to about our experiences.  During our stay in the NICU, I think I must have asked daily.  At times I really needed someone that had been there to just tell me it will be okay. Other times (after the first year or so), I wanted so much to be able to provide other families with what wasn’t available to us.  The fact that Hand to Hold was created from that very idea was more than a sign to me.  I knew I had to get involved. [Read more…]

Site last updated April 16, 2017 @ 9:38 pm