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

Warrior Princess

GiaAge: 2
Weight at Birth: 1 pound 2 ounces
Weeks Gestation: 24
Time spent in the NICU: 111

My Preemie Power Story:

Our story begins on April 17, 2012. I was admitted to the hospital on complete bed rest due to Premature Rupture Of Membranes (PROM) at 23 weeks gestation. I was given 3 dosages of steroids just in case she decided to come early. Well, 8 days later, she did! I was rushed into the OR for an Emergency C-Section due to a Prolapsed Umbilical Cord. There are no words to describe how I felt when I was told my baby had a 35 percent chance of survival. Every time a doctor walked into my room, my heart would drop to the floor. The moment I saw my daughter, I just cried. She looked so helpless. I was overwhelmed by breathing machines, tubes, wires, IVS, the fact that I could see right through her skin and consent forms for blood transfusions. I quickly became very familiar with the words “Bradycardia” and “Apnea”, which is a nightmare to witness. The first time she was taken off the ventilator and put on oxygen didn’t go so well. She was getting too tired and was put back on the vent for a few days. The second time was perfect! On July 19, 2012, she was taken off oxygen and did excellent! She was fed every 3 hours through an NG tube until she slowly learned how to bottle feed. Reflux was a major issue. She was prescribed to Prevacid and Zantac. On August, 14, 2012, she was discharged from NICU. Unfortunately, she was admitted into PICU the next day because she refused to drink all together. We found out she had a UTI and was put on antibiotics through IVS for 7 days. The bottle feeding and reflux was getting worse, so the GI doctor decided to mix her formula with Gelmix. It helped! Two weeks later, we were talking about discharge, but of course that was delayed due to blood in her stool. X-rays, ultrasounds and cultures determined it wasn’t NEC or Intussusception. The doctor then decided to do a colonoscopy and endoscopy, but first she had to have a Frozen Plasma Transfusion because her blood wasn’t clotting and Vitamin K wasn’t working. The end results turned out to be an allergic reaction to the Gelmix. The GI doctor then suggested a Nissan Fundoplication and G-Tube to be the next best option. On October 6, 2012, she went in for a 4 hour surgery in which she also had 2 hemangiomas removed. Those were the longest 4 hours of my life. She remained in PICU and Peds until November 5, 2012. Although we have still hit some bumps in the road and she still has her G-Tube, I’m thrilled to say that Gia is a happy, healthy and very intelligent 2-1/2 year old. I love her with all my heart and soul and I thank God everyday for showing me that miracles can happen!

Super Hero Characteristics:

Gia is strong, intelligent and courageous

Savvy G

SavannahAge: 15 mos (12 mos adjusted)
Weight at Birth: 1lb 2oz
Weeks Gestation: 27 weeks 5 days
Time spent in the NICU: 109 days (plus 120 in PICU)

My Preemie Power Story:

Savannah Grace or “Savvy G” was born three months premature due to IGUR caused by the blood flow in the umbilical cord flowing in reverse. She was born via an emergency C-section just 1hr 38mins after a scheduled ultra-sound appointment. At a mere 1lb 2oz and 11.5 inches long, Savvy G. spent the first 109 days of life in NICU. We brought her home with a NG feeding tube and oxygen. After 2.5 months of improvement (or so we thought) she was admitted to PICU with severe pulmonary hypertension, aspiration, BPD, and ASD. She sent the next 120 days in the PICU before we brought her home, at 10 months of age, with a trach, vent, gtube, central IV line, oxygen, and Nissen. Our incredible fighter has been back to the hospital for 10 admissions since then, but never gives up! She’s the most happy, brave, and determined little girl I have ever met. She has spent more nights in a hospital crib than at home, but I know she is going to continue to beat the odds with God’s grace! She continues to grow (currently 20.5lbs and 28inches long) and amaze us as her little personality emerges day by day. We have a long way to go developmentally, as she is still working on sitting up and relies solely on her gtube for nourishment and her 13 meds. We are incredibly blessed with an amazing team of doctors (7 to be exact) and nurses (whom are with us 16hrs a day). Her doctors have an incredibly positive outlook for Savvy G’s future. They anticipate her being off her oxygen, trach and vent within the next 2-3 years and just in need of an inhaler for some asthma. She keeps us on our toes, as you can see the orneriness in her picture, and we can’t wait to see what our little Savvy G has in store for the future! We figure she will have a great story to share for ice breakers down the road too 🙂

Super Hero Characteristics:

1.Radiation Immunity (def: having an invulnerability to forms of radiation) – Just like Iron Man, Savvy G has radiation immunity power … I lost count of how many x-rays she has had around 90(ish).
2. Super Breath (def: enhanced breath; the ability to create high lung pressure)
With her vent, trach and oxygen, Savvy G has the best lung pressure to fight off her pulmonary hypertension!!!!!
3. Endurance (def: stamina; the capability of sustaining prolonged stressful effort)
Savvy G has undergone 3 blood transfusions, 3 surgeries, 2 non-surgical OR procedures, 4 central line IV placements, too many standard IV’s to count, anesthesia, and countless infections …. but she NEVER gives up!!! Thank you Lord for our strong, courageous, brave fighter … Savvy G is our SUPER HERO!!!

Lil Warrior

AsherAge: 5-1/2 months
Weight at Birth: 1 lb 14 oz
Weeks Gestation: 26
Time spent in the NICU: 125 days +21 days in PICU totally 146 days

My Preemie Power Story:

Asher is dressed as Clark Kent in this picture. He has secretly been Superman from the very second he entered this world. Asher entered this world at 26 weeks weighing 1 lb 14 oz and 13 inches long in the parking lot of his brothers daycare in my pants with no medical personnel on hand. He was crying!! It is that determination that propelled him through all the hurdles he faced with his early arrival.

At less than a month old he had the PDA Heart Ligation surgery and it took 2 titanium clips to close the hole in his heart. At almost 3 months old he had a Tracheotomy due to having paralyzed vocal cords, and then at almost 4 months old he had four surgeries in one for the G-Tube placement, Fundoplication, Hernia and one other. After multiple re-intubations, 2 bouts of pneumonia and almost losing him two times, my lil warrior always kept fighting and always had a smile on his face. He showed me what true strength and grit means and he his the epitome of strength in my book. What he has overcame in his short life is nothing short of miraculous and I am so honored that God blessed me with such an incredible little boy.

His determination through every obstacle he has faced, and continues to face, is a testament to how much he wants to be in this world and he is going to do something great. He already has made such a difference in people lives with how inspirational he is with his huge smile and happy face despite what he has been through. His brother and I adore him and are happy to celebrate that he has been home a month now after a 5 day hospital stay for Bilateral Viral Pneumonia 3 weeks after coming home. At almost 6 months old he weighs 7 lbs 14 oz and is 20 1/4 inches long. He just amazes me and I am so fortunate to be able to look into the eyes of his beautiful face and witness a miracle every day.

Super Hero Characteristics:
Resilient, Conqueror, Courageous, Inspiring, he smiles in the face of adversity……I could go on and on. 🙂 (He has 2 amazing sidekicks in his brother and mom too!)

Gabby the Great

GabriellaAge: 2 years
Weight at Birth: 1lb 4 ozs
Weeks Gestation: 29 weeks
Time spent in the NICU: 118 days

My Preemie Power Story:

My beautiful daughter was given a 10% chance of survival. She overcame so much during her 118 day NICU stay. She was a fighter all the way. She had all the usual micro preemie problems, including NEC. She had an umbilical hernia, sacral dimple and severe edema. She was on a vent for 51 days, and came home on oxygen.

The NICU days were just unbearable, not knowing if she would live or die. I learned to lean on God more than I ever had before, lots of bedside prayers. The first time I held her, she was well over 2lbs and 1 month old. So small, but yet so mighty. I had never in my life seen a preemie until her. What amazing things the doctors can do these days to keep these tiny super heroes alive!

When my daughter came home she was 5lbs 14ozs. She had a heck of a time eating, and as a result she was a tiny 11lbs at one year old. Despite her small size at 18 months, she learned to crawl, and at her second birthday she walked. She does not eat any food as of yet. We are in Feeding, Speech, Occupation and Physical Therapies. She has AFOs for her feet because her gait is very off. She doesn’t talk yet, but I am hopeful she will soon learn. She has her fair share of troubles still. She has a serious Developmental Delay, she is G tube fed, she amazes me.

We see so many specialists who have no answers as to why she is not progressing very well. I am proud of her everyday, for never quitting. I can’t communicate with her yet, but I know she understands how much I love her. I was not always the best mother, before I got her. I feel like I have been redeemed in my role as a mother caring for her special needs day in and day out. The traumatic birth, and long NICU stay, then all the issues that follow a micro preemie through life, don’t seem so bad, when I see her smile. Other days, when its seems like all hope is fading, I still can just think of how hard she fought just to live, all of the things she had to face as a 1lb infant in this big scary loud cold world when she should have been in my womb.  Well, she is a super hero. A miracle is what I like to refer to her as, OUR FAMILY MIRACLE! I can’t imagine one day of my life without her, thank you, God, for Gabby the Great!

Super Hero Characteristics:

Strength, Fierceness, Persistence

Super Averybug

AveryAge: 2 years
Weight at Birth: 1lbs 9 ozs
Weeks Gestation: 24
Time spent in the NICU: 4 months

My Preemie Power Story:

Avery (and twin sister Eliza ) were born at 24 week, 6 days. Each weighed a pound and half. Eli had a fairly easy go of it compared to a lot of preemies, but not Avery. Avery had a grade 3/4 IVH (brain bleed) and we were given the option to stop treatment (as children often with that diagnosis are not more than wheel chair bound, blind and deaf) and let her pass.  We decided to let her keep the fight, and she is a super AVERY!  She had NEC, she has had 9 brain surgeries, one g-tube surgery, pneumonia, and countless trips to the ER after she was out….but today, Avery not only survives, she thrives. She walks with a walker, her hearing is normal (after testing as severe and profound hearing loss for a year and half, now normal? I know!) she loves her musical box, being chased, and “ba ba black sheep.”  She likes to steal her twin sister’s binkie and snuggle up on her cousin Dax.  She is amazing.

Super Hero Characteristics:

Strong, Assertive, Amazing!

Our Miracle Gaby

GabyAge: 4 years
Weight at Birth: 1lbs 5 ozs
Weeks Gestation: 26
Time spent in the NICU: 314 days

My Preemie Power Story:

Our daughter Gaby was born extremely premature due to pre-ruptured membrane first at 14 weeks. Our doctor advised us to be induced because in his professional experience it was too early in our pregnancy for this child to survive. My husband and I agreed to let nature happen and God’s will be done so I was sent home after 2 days in the hospital. A few days later, my doctor called and was shocked to find out that I was still pregnant so I was placed on complete bed rest in the hospital.

An ultrasound was done once a week until 26 weeks when our doctors couldn’t understand or scientifically explain how it was possible for this child to be growing and weighing appropriately with still no measurable amniotic fluid. A C-section was scheduled and we were before warned that our baby may not be fully developed or formed. Upon delivery, Gaby was taken away after just a glimpse into the Neonatal Intensive Care Unit (NICU). She was placed in an isolette, put on a mechanical ventilator, oxygen and all sorts of tubes and wires on her tiny fragile body plus crazy alarms going off every second. [Read more…]

Tiny Buddha

BridgetWeight at Birth: 1 lb 9 oz
Weeks Gestation: 26 weeks
Time spent in the NICU: 119 days

My Preemie Power Story:

Bridget was born at 26 weeks due to chronic abruption. Three days before she was born, we found out that Bridget had a congenital heart defect called Tetralogy of Fallot. The doctors were accustomed to seeing TOF in term babies, but nobody knew what to expect of a baby born so early with TOF. We were told that her chance of survival was less than 10%. But our little girl continues to amaze us all with her vitality, strength, and courage.

We had our share of scary times along the way. After three failed extubation attempts, we feared Bridget would never breathe on her own. Because her troubled heart had to work so hard, Bridget was slow to gain weight. The TOF led to frequent drops in Bridget’s oxygen saturation. Bridget’s heart medicine dramatically increased the frequency of her apnea spells. Bridget tested positive for cystic fibrosis at one month old, but she wasn’t big enough for further testing until much later (thankfully she does not have CF, but is a carrier). Bridget was diagnosed with retinopathy of prematurity (which subsequently resolved). [Read more…]

Elijah Almighty

ElijahAge: 17 months
Weight at Birth: 1lb 8oz
Weeks Gestation: 28
Time spent in the NICU: 10 months

My Preemie Power Story: 

Well nothing could have prepared our family for this incredible journey we have traveled with our little miracle Elijah.  He was brought into this world very unexpectedly at 28 weeks and weighing 1lb 8oz!  We had no idea what a NICU was and how to navigate this new reality.

We knew Elijah was going to be in the NICU longer than most but never expected it to be almost a year.  Elijah fought through so many hurdles, infections, and surgeries.  Each time we would set a goal for a going home date and it would come and pass with no end in sight.

Then we were given the devastating news that Elijah would most likely never be making it home.  So we prepared our bucket list and just enjoyed our precious boy.  Well Elijah had other plans and proved to all of us that he was a fighter.  Over a few months our amazing NICU team prepared us to care for Elijah.  He would be going home with a tracheostomy, on a ventilator, and with a g-tube.  After 314 days in the NICU we finally got to bring our sweet boy home.  The first month was extremely challenging and even had some setbacks and re-hospitalizations.  It took some time but we are definitely so happy in our “new normal”, and proud to say we have been hospital free for 6 months.  Elijah has taught our family so much and we are blessed to watch him thrive and grow.

Super Hero Characteristics:

Always happy & smiling, strength, and hope

Ben the B Charmer

BenAge: 4 years, 7 months
Weight at Birth: 1lb 6oz
Weeks Gestation: 24
Time spent in the NICU: 185 days

My Preemie Power Story: 

Ben entered this world fighting to breathe, but with his charm and strong will, he is slowly conquering every challenge of his traumatic birth. He coded in the delivery room, was resuscitated and taken to the NICU. With his eyes taped shut, he charmed the doctors and nurses with his ‘I can do it’ attitude as he struggled to breathe and set off alarms frequently. At twenty days old, Ben snuggled into my chest for the first time and we learned that he needed surgery to close his PDA. Two weeks later, after two infections and barely weighing 2 lbs., Ben had surgery to close his PDA. But even then, my amazing son still had to fight to breathe, charming the people around him but finding it difficult to charm the beeping machines. After 5 1/2 months of relying on machines to help him breathe, Ben was breathing on his own! Two weeks later, at 185 days of life, Ben came home to a nursery equipped with a pulse ox monitor, oxygen tanks and a feeding pump.

Twenty-eight days later, Ben was readmitted in respiratory distress. Watching my tiny baby with fragile lungs struggle with the doctors and nurses as they intubated him, a man tapped my shoulder and said he was the chaplain and they had sent for him. Squeezing my husband’s hand, we prayed for our son’s strength. Once again, my little superhero persevered and charmed his way through the incessant beeping of the machines.

Ben celebrated birthdays in true superhero style, charming his way through each challenge and gaining the love, admiration and encouragement of the doctors, nurses and therapists working with him. For his first birthday, Ben stopped relying on steroids to help him breathe and had his second surgery to place a g-tube and Nissen fundoplication. For his second birthday, Ben was weaned from tube feedings and began eating smooth purees and thickened formula and taking medications orally. For his third birthday, Ben started school and had his g-tube removed. For his fourth birthday, Ben had a party at school and ate frosting off his cupcake, and then had his third surgery to close the g-tube site, which had reopened, and fix the strabismus in his left eye.

Today, Ben is a joyful preschooler who continues to charm all those around him. He loves dolphins and kangaroos, fire trucks and school buses, dancing and singing. His smile lights up the room and his laughter is contagious. Ben is running and climbing and throwing rocks like other four year old boys, but he continues to fight to overcome the oral aversion to chew whole food and the developmental delays in fine motor skills and speech. But as he has proven in the past, Ben will continue to work his charms to overcome each and every challenge of his premature birth. And he will do it with a smile on his face and a twinkle in his eyes as he is the B Charmer.

Super Hero Characteristics:

My little superhero is strong, both physically and mentally, as he overcomes each challenge of his premature birth. He is persistent as some of these challenges are more difficult for him than others, like breathing and eating. He is brave and full of courage as evidenced by the countless pinpricks on his hands and feet and the surgical scars on his body. He is intelligent as he masters new skills to overcome his developmental delays in fine motor skills and speech. He is compassionate and loving, wearing his heart on his sleeve and offering it to others in need. He is curious and fearless, always seeking out new adventures and new friends. My little superhero charms his way into the minds and hearts of all those he encounters. The world is a better place as my little superhero lights up the day with his smile.