Admirable Abigail

  • AbigailAge: 1
  • Weight at Birth: 1lb, 11oz
  • Weeks Gestation: 25
  • Time spent in the NICU: 157 days

Super Hero Characteristics: Strong, Fighting Spirit, Energetic, One of a kind, and Loving

My Preemie Power Story:

If she doesn’t get you with her story, she will get you with her dimpled smile!

Abigail has been flaunting her preemie powers from 21 weeks gestation when mommy suffered from preeclampsia and liver failure. Taken out of the womb at 25 weeks, Admirable Abigail weighed in at one pound eleven ounces. She has had a strong yet rough fight. It took a variety of machines to keep her tiny little body alive as her body grew and developed enough to thrive on her own. 23 days after birth, mom was finally able to hold her baby for the first time; at this point, we bonded, and I knew she was going to change me in many ways; I gained my preemie parent super powers.

After five failed extubations she joined the “trach life” where she depends on a tracheostomy to breathe. After a 157 day slumber party in the NICU, she joined mom and dad at home, and has been thriving ever since! Over the past year, we together, have grown and conquered more than we could have ever hoped! Within these few months since you’ve been home, you’ve gotten rid of equipment they prepared us to have for years to come: feeding tube, oxygen, and your ventilator. I reminisce in memories some would be afraid of, some of things no one will ever understand. The milestones we celebrated were different than the average parent celebrates, but these milestones were more significant; they supported the fact of how far you have come, and how strong of a little girl you are.

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!!!

Miracle Man

KyleAge: 1 year
Weight at Birth: 1 lb .04 ounce
Weeks Gestation: 29
Time spent in the NICU: 149 days

My Preemie Power Story:

After hearing for nine weeks that our son would not make it out of the womb, he amazed us all with his strength.  Every week we went to listen to his heartbeat and it was always steady and strong.  He was born tiny, weighing not even one full ounce over 1 pound.  Through all his setbacks in the NICU (Rickets, broken femur, MRSA, etc.) he managed to remain strong and fight for life.   There were many days that we were not sure just how much more he could take but he always amazed us with his willingness to push on.  After 149 days in the hospital, we were able to come home on oxygen and with a feeding tube.  Even though it hasn’t been easy, it has been an amazing learning experience.  He is growing, getting stronger with the help of some amazing therapists, and still defying odds one year later.  Kyle’s amazing personality and love of life have helped him make it this far.  Every time we go back and visit his NICU doctors and nurses, they are astounded and impressed by all he has accomplished.  Kyle taught us to never give up and always trust God to provide for our needs.  We do not know what the future holds for Kyle but we do know that we have all we need to face it with courage, grace and an unwavering attitude.

Super Hero Characteristics:

Kyle is driven. He had to fight hard to make it into this world and he will continue to fight.
Kyle is charming. He can make anyone smile and is full of laughter and love.
Kyle is strong and continues to grow stronger each and every day.

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…]

Porkchop

Brooklyn T. ~ Super Hero Alias: Porkchop

Brooklyn TAge: 22 months
Weight at birth: 3 lbs 8 ozs
Weeks gestation: 31 weeks
Time in the NICU: 51 days

Diagnosis, surgeries, complications?

breathing troubles (2 doses surfactant), anemia(blood transfusion) and slow feeding (feeding tube), enlarged kidneys, and apnea.

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

At 20 weeks I was diagnosed with complete placenta previa putting Brooklyn’s life in danger, all while her father was serving our country in Iraq risking his life also. She fought hard while her oven was fighting against her. She still is small and is growing to be a very feisty little girl with 4 older siblings. She is an army strong child. The NICU nurses nicknamed her porkchop for her at one time chubby cheeks.

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

strong, strong-willed and persistent little girl

What advice do you have for future NICU parents?

Be prepared for a roller coaster ride.  There will be up days and down days. And be there for every procedure and every moment you can.

The Shawman

Shawnee H. ~ Super Hero Alias: The Shawman

Shawnee HAge: 16 years
Weight at birth: 1 lb 5 ozs
Weeks gestation: 23 weeks
Time in the NICU: 5 months

Diagnosis, surgeries, complications?

Seizures, CP, Heart Surgery, On oxygen, feeding tube, IV brain bleed, apnea monitor.

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

Our adopted son came home on all kinds of machines and monitors. Around the age of 3 he no longer needed the oxygen and soon afterwards the feeding tube. Today he can propel his own wheel chair, use a stander and walk a short distance with his special walker. He is truly a miracle. We are so proud of him and all he has accomplished. And today he weighs about 170 lbs. His favorite activities are riding in the van/motor home and going to Arby’s or McDonald’s. He loves school. And he loves Disney.

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

Shawnee is a super hero because he has had to fight just to survive and he is winning that battle. He is very strong, brave and an inspiration to others who have micro preemies.

He inspires us each and every day.

Feeding Tube Awareness Foundation

Interviewed by Erika Goyer, Hand to Hold’s Family Support Navigator

Making the decision to tube feed is never an easy one. Tube feeding is frequently associated with gravely ill adults, not as a way to help children get the nutrition and hydration they need to be able to grow, thrive, and develop. And tube feeding can be a scary prospect for parents, but it doesn’t have to be. Thanks to moms Traci Nagy and Laura Wagner.

Never Underestimate the Power of Parents

Harmony getting a bolus feeding, Courtesy of FTAF

Harmony getting a bolus feeding, Photo Credit: Wagner Family/FTAF

Traci Nagy’s son, Lucas, received his first feeding tube in August 2008 at two months of age. She wasn’t satisfied with the resources available to new parents on tube feeding and the general lack of awareness among the general public of the benefit tube feeding can have to medically complex children like her son. In June 2010, Traci launched the “Let’s Get a Tube Fed Child on Sesame Street!” campaign on Facebook. In October 2010, she galvanized an effort to create Feeding Tube Awareness Week which resulted in creating the organization, website and Facebook support page.

Laura Wagner’s daughter, Harmony, has had a feeding tube since she was born in June 2009. Laura has been an advocate for creating awareness through her blog and her group on Babycenter.com, Special Needs and Medically Complex Kiddos. She pushed to make the Feeding Tube Awareness Foundation a non-profit organization.

A Movement is Born

Feeding Tube Awareness was founded in 2010 as a means of supporting parents of tube fed children and raising positive awareness of tube feeding as a life-saving medical intervention. Tens of thousands of infants and children are able to live, grow and thrive because of tube feeding.   The organization is dedicated to providing parents and caregivers with practical information needed for day-to-day life with a tube-fed child. In addition, FTA strives to raise positive awareness of tube feeding as a life-saving medical intervention, so that children who are tube fed enjoy increased acceptance in society and parents have greater support in their care. Traci and Laura want tube feeding families to know that they are not alone, even though they can sometimes feel like they are.

I Love a Tubie

The group’s logo “I heart a tubie” sums it up nicely. It is a symbol of embracement and empowerment for families faced with a child whose medical conditions require tube feeding.

Feeding Tube Awareness Week is the second week in February each year! 

To get I Love a Tubie apparel and find out more about Feeding Tube Awareness Week visit the “Raising Awareness” page.

The Mission of the Feeding Tube Awareness Foundation

  • “Provide medical type information in language that sleep-deprived parents can understand. That’s why we also have how-to videos made by parents
    G-tube, Photo courtesy of FTAF

    G-tube, Photo credit: FTAF

  • Make tube feeding feel less scary and overwhelming. I have seen parents go through great lengths (often at the expense of their child’s health) to avoid tube feeding. Children need enough calories and hydration to live, grow and thrive. If they are unable to do it on their own, a feeding tube can help make sure they are getting what they need during critical stages of development. Children and parents quickly adapt to tube feeding and it becomes second nature just like everything else.
  • Change public perception of feeding tubes as being for the elderly at end-of-life. Public perceptions do not match the reality so many tube feeding families have. Tube fed children often don’t look sick. Children can reach their potential because they have the nutrition they need. Tube feeding can mean life is possible.
  • Show parents they aren’t alone. It is pretty easy to feel alone when you have never heard of tube feeding a child or met anyone with experience. But, there are hundreds of thousands of children who are, or have recently been, tube-fed in US alone. There are more than 5,400 parents, caregivers and supporters on the FTA facebook page and growing.”

If You are Considering a Feeding Tube

If you are faced with the decision to tube feed, here are some questions to consider:

  • Is my child safely able to eat and drink enough to grow and develop appropriately?
  • Will my child be able to catch up on necessary weight gain on his own?
  • Is my child using too much energy to eat and drink?
  • Does my child have a medical condition that will make it more difficult for her to maintain a healthy weight?

Join the Cause

Visit their website www.feedingtubeawareness.org or contact them through their contact page.

Feeding Tube Awareness’ facebook group offers real-time support and knowledge sharing among thousands of parents and supporters.

You will find a wealth of information, resources, and inspiring stories.

Hand to Hold especially loves the information page created to educate friends and family about feeding tubes and how they can support the families who use them!

photo courtesy FTAF

Photo credit: FTAF

Let’s Spread the Tubie Love!

Site last updated June 19, 2017 @ 11:09 pm