Feisty Faith

Faith B. ~ Super Hero Alias: Feisty Faith

Faith BAge: 1 year
Weight at birth: 1lb 3.5 ozs
Weeks gestation: 23 weeks, 6 days
Time in the NICU: 101 days

Diagnosis, complications, surgeries?

Surgery to close a PDA. Was diagnosed with BPD and a ASD.

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

Faith defied the odds of being born at 23.6 weeks at a hospital without a NICU. Although her NICU Journey was a typical roller coaster, she has done so well since being home that she has left many medical personnel baffled. Faith has brought my family closer to one another and inspired the start up of The Gift of Faith Project. The organization provides care packages and support to families with premature infants. Faith is now 24lbs and many cannot tell she was a preemie. She has a feisty attitude and can make even the coldest hearts melt. I tell everyone that Faith has taught me more in her year of life than, I’ve learned in all of my 33 years. She has taught me patience, kindness and to just have “faith.” Even though I wish I could have carried her to term, I’m so thankful for my child.

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

Determined, Strong, Innocent, Energetic

What advice do you have for future NICU parents?

Patience & Faith are essential.

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God

Noah L ~ Super Hero Alias: God

Noah LAge: 6 months
Weight at birth: 1lb 6 oz
Weeks gestation: 23 weeks
Time in the NICU: 151 days

Diagnosis, surgeries, complications?

Two chest tubes for collapsed lung, bilateral inguinal hernia

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

Noah was born at 23 weeks. He was four months early. He was on an oscillator vent and had chest tubes two times for a collapsed lung. He had bilateral inguinal hernias. After spending 151 days in the NICU at UAMS, he did not come home on oxygen or monitors. The doctors always told us that he would go home on oxygen, but Noah proved the medical team wrong. We are so blessed by this little 1lb 6oz miracle that is now 10lbs 4ozs.

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

Noah was a little fighter from the very start. The medical team was always amazed with all he had to overcome. He is stronger than anyone I’ve ever seen. We are truly blessed he is with us today.

What advice do you have for future NICU parents?

Take one day and one hurdle at time. Trust that the medical team knows what they are doing.

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The Amazing Micro-Preemie 3 Amigos

Reese F., Troy F., Jillian F.

Reece, Troy & Jillian F. ~ Super Hero Alias: The Amazing Micro-Preemie 3 Amigos

Age: 2 years old and 4 months
Weight at birth: Reese (1lb 6oz), Troy (2lbs 2oz), Jillian (2lbs)
Weeks gestation: Reese (23wks6days), Troy & Jillian (26wks3days)
Time in the NICU: Reese (115 days), Troy (91 days), Jillian (97 days)

Diagnosis, surgeries, complications?

Beyond the many micro-preemie breathing and other issues (ventilator, cpap, blood transfusions, brain bleeds, etc), Troy had heart surgery to close his PDA in August 2010. We currently have speech therapy, occupational therapy and physical therapy weekly.

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

Our triplets, Reese, Troy and Jillian, are “Preemies of the Year” because they are the real life 3 Amigos! I have never seen so much character packed into such tiny little bodies. Our first daughter, Reese, decided to take a leave from the Amigos at 23 weeks, 6 days because she was so determined to meet the world outside her momma’s belly. Troy and Jillian could only do without the first Amigo for so long, so they joined us 18 days later. Yes, that’s right; they are triplets with two separate birthdays! In the NICU, Kangaroo care was a joy, while the incessant warning beeps of the monitor were not; unless, of course, it was Reese doing her signature brief-bradychardia-beep when we tried to leave at the end of the day; just her way of saying “bye-bye” to Mom and Dad! Just as we were getting cozy into our NICU routine, Troy would be transferred to another hospital for heart surgery to close his PDA. On his Dad’s birthday, Troy went through surgery with flying colors, and his little heart was fixed. Troy shocked us all by being discharged HOME, and not back to our original NICU, on September 1st. We had heard of the infamous “wimpy boy” syndrome…well…this wimpy boy was the first of our three to come home. Not so wimpy, after all (he has much to prove on that at home now, as his sisters test his 2.25 year old strength on a daily basis). Reese and Jillian joined us at home on September 16, and that is when a whole other kind of crazy began! My husband made a photo montage recently, and for this point in time the music he chose was “Welcome to the Jungle” by Guns n’ Roses. He could not have chosen a more appropriate tune. While we were so sleep deprived that it is rather blurry in both of our brains, we do remember a sea of acid reflux induced spit-ups,’ round the clock feedings, and lots of breast milk pumping (on my part, anyway). We waded through lots of doctor’s appointments and therapy appointments, but had to minimize the visitations by people who had awaited the arrival of these babies for so very long. It was very difficult saying “No, you can’t meet my children that I am immensely proud of” because of the risks of infection that came with it. Since then, it has been one amazing day after another. With the possible outcomes we were given based on their gestations at birth, I never would have pictured the amazing little people that they are today. They continue to receive various therapies, but are otherwise healthy 2 year olds. I cannot express how blessed we feel and how immensely thankful we are for everything (and everyone) we have. Reese, Troy and Jillian are truly the Amazing Micro-preemie 3 Amigos!

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

Reese – Determined, Creative, Stealthy

Troy – Persistent, Persuasive, Glowing

Jillian – Ambitious, Indomitable, Clever

I tried to come up with three encompassing characteristics of Reese, Troy and Jillian. They have similarities, however they have characteristics that also set them apart from each other, slightly, and I wanted to share those.

Reese has been determined to beat the odds since the day she was born. It is always difficult to know when Reese isn’t feeling well because she maintains her good spirit and mood no matter how she is feeling. She is very stealthy in this way, and is also physically stealthy; this girl can be reading a book one second and then across the room climbing over a baby-gate the next! She finds ways to make anything work Reese’s way. She finds out how everything works, down to the details. This comes in handy later on when she wants to maneuver a dollhouse into a climbing stool to get over that gate.

Troy is a salesman at heart. He can persuade you of anything even though his vocabulary is still fairly limited at age 2. Once he has decided he wants to do something, he is persistent and will have you convinced of the same thing very quickly. He has a glow about him that just emanates his good spirits, which only helps with his persuasiveness. Watch out if you do catch him in bad spirits, though; that fiery redhead temper can flare every once in a while!

Jillian was dubbed “happy go lucky” in her NICU and early months. She was content to sleep in her Isolette and rarely encountered fussiness. We are convinced that she was planning her future ambitions this whole time. Her goals of leaping from couch to ottoman and doing a forward somersault have already been reached. Only Jillian knows what her next accomplishment will be. She cleverly keeps these ideas to herself and surprises everyone with them when she completes her attempts. Do not try to dissuade her from these tasks – if Jillian has decided it is important to try, it will be done.

What advice do you have for future NICU parents?

Even though you are focused on your baby (or babies), please take time to take care of yourself. Even if you aren’t hungry, eat. Even if you aren’t tired, sleep when you can. NICU babies need healthy Moms and Dads!

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Fightin’ Jax

Jaxon C. ~ Super Hero Alias: Fightin’ Jax

Jaxon CAge: 11 months
Weight at birth: 1 lb, 4 oz
Weeks gestation: 23 weeks
Time in the NICU: 192 days

Diagnosis, surgeries, complications?

Almost all of the complications a 23 weeker could get, he got!  Grade 2 IVH on right and left sides, PDA ligation which led to a paralyzed vocal cord, jaundice due to cholestasis and weeks on TPN, chronic lung disease, NEC which led to Penrose drain and ileostomy surgeries, ROP which led to laser surgery on both eyes, subglottic stenosis due to being on and off the ventilator several times, GERD which led to a several week bout with aspiration pneumonia, chylothorax which led to the insertion of a chest tube to drain fluid, Nissen fundoplication surgery to treat GERD, and surgery to insert a G-tube for feeding due to silent aspiration. (Phew!)

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

Jaxon is a fighter. He fought to see the world early, and when he got here he fought for his life! When he was born we knew that he had some pretty big odds to overcome when it came to his life and his quality of life. Just like any parent of a micro-preemie, those first hours of his life were the most frightening times of our lives. Nothing could console us as we worried for our little man. However, that all changed when we were able to touch him for the first time. He reached up and grabbed our fingers so tight, that’s when we knew we had a fighter, and we put our faith in him. It seemed that God was going to make him strong by giving him many complications to fight, and boy, did he have some battles! The doctors and nurses also saw his fighting spirit. They would not hesitate to treat Jaxon aggressively and they never doubted his will to recover. Several times we heard the staff say, “Jaxon will be ok, he is a fighter.” Some fights were very long and tiring (on and off ventilator), and some were life threatening (pneumonia and chylothorax), but he fought and won them all! He was always happy, even during the “bad” NICU days he would always crack a smile at us, and this showed us his determination to fight. His greatest victory was him being able to come home after 192 days in the NICU, and he hasn’t looked back!

At home with his Mommy, Daddy, Sissy, and Bubba loving him, his fighting spirit has grown 100 fold! He no longer needs respiratory support, he no longer has jaundice, he had his ileostomy reversed and turned what the doctors said would be a 10 day hospital stay into 5, his eyesight is perfect, his medications have been cut to 1/3 of what they had been, he can finally be fed orally, and he has met all of the milestones for his corrected age. And he keeps on fighting, and winning!!!

Jaxon’s fighting spirit, and the fact that he fought and conquered all of the obstacles that have been presented to him, are the reason why Fightin’ Jax should be recognized as “Preemie of the Year!”

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

Jaxon has a FIGHTING SPIRIT that cannot be equaled!  Whenever he had a medical challenge he fought till he overcame it.  He has a POSITIVE ATTIDUDE that sadness cannot affect!  Jaxon has been through a lot in his 11 months on Earth, but even during his worst days he would always look at us with love in his eyes and would smile if he could to let us know he will be alright.  He has a WILL OF STEEL that cannot be defeated!  Even when complications would come to him one after the other, he was determined to come out on top.  Finally he has a SLOBBERY SMILE that makes everyone who sees it happy!

What advice do you have for future NICU parents?

Our advice to parents would be to take the NICU one day at a time.  We all want to see the light at the end of the tunnel, but only God knows when your little baby will be coming home.  If you focus on coming home too much you will go nuts!  Take it one day at a time.  Don’t dwell on the bad days, focus and cherish all the good days your baby has.

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 was there for us when we didn’t have anyone to talk to about what we were going through.  We talked to others, but they just couldn’t understand 100% because they never had a baby in the NICU.  Through Hand to Hold, we were able to talk to others who have gone through what we were and that helped us tremendously!

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Half Baked Alaska

Elena R. ~ Super Hero Alias: Half Baked Alaska

Elena RAge: 16 months
Weight at birth: 1 lb, 2 oz
Weeks gestation: 23 weeks
Time in the NICU: 116 days

Diagnosis, surgeries, complications?

Chronic lung disease, ROP (requiring laser eye surgery), hernias (requiring surgery)

Why Should Your Child Be Recognized as Preemie of the Year?
Elena is the Preemie of the Year because of how far she come.  With her guardian angel (her identical twin sister, Sonja) looking over her from above, Elena progress, to quote her pediatrician, has been “pretty fricken awesome.”  She was able to leave the NICU before her due date and was off of oxygen within a month of coming home and all monitors within a month after that.  Elena is also already a rock star — appearing in print (in a poster and pamphlet championing the benefits of kangaroo care), video (a training video for standing transfers), and on the radio (during a radiothon supporting the NICU).  And despite her superstar status, Elena remains down to earth — always quick with a smile and willing to give a hug to anyone in need.  Elena will always be my hero and my “Preemie of the Year.”

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

Despite being born at a mere 1 lb. 2 oz., at just 16 months (12 adjusted) Elena is now “faster than a speeding bullet(in), more powerful than a (toy) locomotive, and able to leap tall buildings (blocks) in a single bound.”  But, in all seriousness, Elena is the bravest and strongest person I have ever met — she bounced back quickly from both eye and hernia surgeries.  She fought all the odds — just surviving was 50/50 at first, she beat that and most of the other likely complications (brain bleeds, PDA surgery, etc.)  However, I think Elena’s greatest superior hero characteristic is her mastery of disguising that she is a Super Hero.  Much like no one would guess the mild-mannered Clark Kent was Super Man, unless you know Elena’s history, when you first meet her she comes across as a mild-mannered, loving, “normal” 12 month old.  Again, like Clark, only those that know her best, or need her help (though her inspiring story), learn of her true identity.

What advice do you have for future NICU parents?

Get involved, don’t be afraid to ask questions, and lean on your support network of family, friends, and faith community.  Miracles do happen.

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Jolly Jada Reese

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

Jada A. ~ Super Hero Alias: Jolly Jada Reese

Age: 15 months old
Weight at Birth: 1 lbs 8 oz
Weeks Gestation: 23 weeks
Time in the NICU: 124 days

Diagnosis, complications, surgeries?
CMV, ROP, PDA…

Why should your child be recognized as “Preemie of the Year”?
Although Jada wanted to greet the world at 19 weeks, she and her sister stayed in the womb until 23 weeks and 4 days. She said her goodbyes to her sister, and entered the world on July 21, 2009. She fought a long and lonely battle in the NICU as she faced surgeries, breathing machines, isolation with CMV, and a transport to a near by hospital. This miracle brought so much joy to family, friends, and NICU nurses/doctors. She has defied all odds through the power of prayer, and she continues to touch lives as she shares her story of survival. God has great plans for her life, and He made it clear that her time on earth is just beginning!

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Site last updated May 15, 2013 @ 3:17 pm