0-1 Year Old

Evelyn M. – Enduring Evelyn
Current Age: 4 months
Weight at Birth: 3lbs.15oz.
Weeks Gestation: 31 weeks
Time in the NICU: 21 days

Why should your child be recognized as “Preemie of the Year”?
Once upon a time there was a preemie named Evelyn Grace. She was trooper right from the start! Mommy was the one suffering from all the pregnancy complications (placenta previa, vasa previa) and she just hung in there and endured as long as she could. We had MANY ER visits starting from 6 weeks-27 weeks due to excessive bleeding. One visit at 16 weeks we were told we were suffering a miscarriage due to all the bleeding and blood clots, and as it turned out that wasn’t the case. After an ultrasound we saw she was perfectly fine, our little trooper was enduring it all.

Using three or more typical characteristics of a Super Hero, please describe your child.
TROOPER, strong, courageous, persistant, tenacious

What advice do you have for future NICU parents?
Pray. Visit your little one in the NICU every chance you get, know they are in good hands NICU nurses are amazing!

Describe how Hand to Hold’s services are meaningful to you and future families.
I wish there was something like this is the DFW area. Just the website alone offered a lot of information for me as a new NICU parent. A great resource for me to go to.
Our last trip to the ER at 27 weeks is when they finally decided bedrest in the hospital was our best option. There she was perfect the whole time monitored every 4 hours…the doctors were just waiting for us to get to 32 weeks or have another “big bleed” and that would be the day she would be delivered! July 10, 2010 was that very special day! We finally got to meet the precious little girl who endured a nightmare for 31 weeks.

Camdyn H. & Cade H. – Captivating Camdyn & Courageous Cade
Current Age: 7 months
Weight at Birth: 1 lb. 2 oz. and 1 lb. 8 oz.
Weeks Gestation: 24 weeks
Time in the NICU: 133 days

Diagnosis, complications, surgeries?
Camdyn – grade II head bleed, PDA surgery at 2 weeks old, vented for 5 weeks

Camdyn – grade II head bleed, PDA surgery at 2 weeks old, vented for 5 weeks

Why should your children be recognized as “Preemie of the Year”?
My baby sister and baby brother deserve to be “preemies of the year” because they are so special to me and my Mommy and Daddy.  I knew that my Mommy was having 2 babies even before the doctors told her that. I told her there were 2 babies in her tummy, but she didn’t believe me. I was right! Our babies were very tiny (only a little over one pound each) when they were born, so they had to live at the hospital for a long time. Mommy says they were born before they got to finish growing in her tummy, so they had to grow at the hospital. My Mommy wasn’t able to hold them for a whole month. She and Daddy went to the hospital a lot, and I got to stay with my grandma which was good with me. I met my baby sister and baby brother for the first time when they were 2 months old. They were both still very tiny. I just loved their little fingers and toes. When they grew stronger and healthier, we got to take them home to live with us. Mommy and Daddy were so happy! Mommy calls me her ‘blessing’ and the babies her ‘miracles’.  It would be really cool for my baby brother and baby sister to win “preemies of the year”, but even if they don’t, we’ve already won because we get to hug them and kiss them everyday. – Love,  Big Sister Brenna

Using three or more typical characteristics of a Super Hero, please describe your children?
Captivating Camdyn – Camdyn has a captivating presence about her. She was born with her eyes still fused shut, but as soon as she could open them, she was always looking out of her isolette trying to take in the world. When we were allowed to touch her tiny fingers through the window of her isolette, she would squeeze her little fingers around ours and as she did this, a feeling of calmness, hope, and comfort would wash over us as if she was telling us in her miraculous way that she was going to be okay. Her willingness to keep on fighting captivated all of us. Through a PDA surgery at just two weeks old still weighing under 2 pounds and after being ventilated for more than 5 weeks, she wasn’t going to give up. Her perseverance is like a shining light showing us all that no matter how small you are or how small you may feel, never give up.  A few days after she was born, she dropped down to only 1 lb.  Who knew that this tiny superhero would be able to ward off the evil NICU villains – NEC, ROP, etc.- who try to attack preemies, never even letting them come near, and come out so strong?Courageous Cade – On Cade’s first night, the neonatologist came into our hospital room and told us that he needed to put Cade on nitric oxide. He was on the highest ventilator settings. We told them to do whatever was needed. From that time on, Cade faced many challenges. One night we rushed up to the NICU because he was again on the highest settings. They had to bag him to get him to breathe again. Through all of this Cade showed incredible courage. You could just feel his courageous spirit emanating through the glass of his isolette. He possesses several battle wounds all over his little body from surgery, probes, and needles. I know he will wear these battle wounds with pride showing everyone the beauty of life and that it is worth fighting for.  Like his sister, he was able to keep the preemie-attacking villains at bay.  He was left with left vocal cord paralysis during the PDA war, but he isn’t going to let that stop him.  Cade is currently fighting the feeding issue battle, and we are hoping for yet another victory.  He has already proven victorious in so many battles.  I know he will muster up his incredible strength to win this one too.

What advice do you have for future NICU parents?
Meet with other parents. Allow yourself to feel whatever you are feeling, but talk to others about it. You have to stay strong for your baby or babies. My blog helped me express my feelings, concerns, triumphs, and setbacks. It was a great escape for me, and it allowed others to keep up with the babies’ progress. www.camdyncade.blogspot.com

Describe how Hand to Hold’s services are meaningful to you and future families.
It is very helpful to share information and stories with other families who know what you are going through.

In the 1+ to 3 Years Old

Andrew “The Lion Heart”
Current Age: 3 years old
Weight at Birth: 2lbs.2oz.
Weeks Gestation: 25 weeks
Time in the NICU: 70 days

Diagnosis, complications, surgeries?
severe acid reflux, broviac surgery, and NEC

Why should your child be recognized as “Preemie of the Year”?
He came out fighting all 2 pounds of him ready to take on the world (a little bit of napoleon syndrome prehaps?). upon coming into the world at 3:14 am he made his presence known he took in a deep gulp of air, filled his lungs to the brim and wailed. I was able to get a  quick glance of him before he was wisked away, intubated twice (he ripped the first one out) and hurried to the nicu fighting doctors off all the way. In that quick glance I knew he would make it I saw so much fight and passion all wrapped up in one frail small package. Once in the NICU he continuted to fight the doctors diagnosis, the odds and the nurses trying to swaddle him (he is still a little claustrophobic). after 70 days a tough bout with NEC and a Broviac surgery he came home. Now why should my son out of all be chosen out of all these little miracles to be “Premiee of the year”? He is a fighter just like all other preemies, He has a lust for life just like all other preemies. But He approaches life with such moxie, such fearlessness that even I sometimes envy his bravery sometimes and  his unwavering determination to do things his own way. He is a LionHeart through and through!

Using three or more typical characteristics of a Super Hero, please describe your child.
This little Lion Heart is no cowardly lion he has  courage to spare!  He laughs in the face of danger daily but don’t be fooled by his mighty lion roar he’s really a big sweetheart and the gentlest lion you will ever meet.

What advice do you have for future NICU parents?
My advice for NICU parents is to never give up hope even when the whole world is doubting you. Keep faith in your child that they can do anything and beat any odds. Also reach out to other parents in the NICU they are just as scared and feel just as alone as you do.

Describe how Hand to Hold’s services are meaningful to you and future families.
Hand to Hold gives just what ever NICU parent needs someone who just gets it.

Ava M. – Ava Bean
Current Age: 3 years
Weight at Birth: 1lbs.4oz.
Weeks Gestation: 24 weeks
Time in the NICU: 101 days

Diagnosis, complications, surgeries?
Ava’s mommy had severe pre-eclampsia and Ava had to greet the world a little bit earlier than was planned. When Ava was just a couple of days old, she had to have PDA surgery on her heart, but she did great and recovered quickly. We were very fortunate that this was the only “major” surgery Ava had while in the NICU. Thankfully Ava didn’t have very many complications. Mainly just trying to get her oxygen levels stabilized to bring her home.

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

Ava’s motto has always been “I may be tiny, but I’m strong!”. And this motto has held true from the day she was born. She came out fighting the moment she came out of my womb, even though she was a micro-preemie. Looking and listening to Ava, you would never know she started out life way before she was supposed to. Ava Bean is our Superhero because she has shown us that no matter how you started your life, it is how you live it. She may only be three, but that girl has more life in her than anyone I know. She lives it fully and with such fervor. She has never let any setbacks keep her down. Ava dances her way through life, always with a smile on her face.

Using three or more typical characteristics of a Super Hero, please describe your child.
Strength – Ava amazed all the NICU doctors and nurses with her strength and resiliency. She just never seemed to give up no matter if she was having a “bad” day or not. She was commonly referred to as a “tough cookie” by the nurses.

Determined – Because of Ava’s severe prematurity, she was a bit behind on her gross motor skills and didn’t walk on her own till she was 22 months. However, with much persistence and lots of practice, she finally did it on her own and there was absolutely no stopping her after that!

Intelligence – This girl is smart! She is obsessive about her books and reading and and has no problem coming up with her own stories to read to us. Her fine motor skills were always above the curve and she is a lefty! She is quite the artist already and knows numbers and ABC’s in English and Spanish!

Three years+

Reagon K. & Ikey K. – Resilient Reagon & Ikey the Invincible
Current Age: 7 years
Weight at Birth: 1 lb. 15 oz. each
Weeks Gestation: 26 wks 5 days
Time in the NICU: 97 and 98 days

Diagnosis, complications, surgeries?
Reagon: grade 3 bleeds in both sides of brain, PIE, multiple blood transfusions, constant As and Bs, PDA.

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

Why should your children be recognized as “Preemie 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 mag 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 52 pound 7 year old second 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 more 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.  He now is a whopping 49 pound 7 year old second grader.  He is also very active and loves all sports.

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 (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 typical characteristics of a Super Hero, please describe your child.

Reagon: resilient, courageous, amazing.
Ikey: invincible, adventurous, extraordinary

Victoria – “Wings of Faith”
Current Age: 8 years
Weight at Birth: 1lb.1oz.
Weeks Gestation: 28 weeks
Time in the NICU: 260 days

Diagnosis, complications, surgeries?
suglottis stenosis, asthma, chronic lung disease,reflux, inguinal hernia,feeding problems, tracheal reconstruction,nisen to fix reflux,trachestomy

Why should your child be recognized as “Preemie of the Year”?
My daughter has been a fighter since the day i found out i was pregnant. She struggled to fight for her life as soon as she was born Feburary 28,2002. From the start me and my husband were scared and didnt know what to expect, when we saw her for the first time she was so little and fragile and all the machines were bigger than she was and it was hard to believe how small she was.But as the journey began she had to fight and overcome all the obstacles that have been  and were put in front of her. She has had more surgeries than some adults, she has been stuck with needles more than some adults ever will their entire life, she has slept in a hospital bed more than some last I counted it was almost 300 days worth , but she is the STRONGEST LITTLE PREEMIE in our heart.Because she was so tiny but so very brave and she proved to everyone she was meant to be a part of this world and our family’s lives!

Using three or more typical characteristics of a Super Hero, please describe your child.
Victoria has the personality of one of the powderpuff girls named BUBBLES because she is cute and has a bubbly and fun personality and can make anyone smile!!

BRAVE–she was tough enough to deal with all the pain to get through each day she was fighting to stay alive.

HEADSTRONG–my daughter knows what she wants

LOVING

HAPPY–no matter what has been through she still is always smiling, and its a smile that warms your heart

ENERGETIC

CARING

FIGHTER–SHE PROVED THAT JUST BECAUSE YOU ARE LITTLE DOESN’T MEAN  YOU’RE NOT AS STRONG, IT PROVES YOU ARE STRONGER.

SMART

courageous

What advice do you have for future NICU parents?
The advice I would give to other parents would be try to gather as much information as you can before you come home. Look into trying to speak to other families that have been through the same. Make friends you will need them and don’t be afraid to ask questions!!!

Describe how Hand to Hold’s services are meaningful to you and future families.
This organization has touched my heart because I think this is the best idea that has ever come out to help families with questions and support with our fragile babies