You are here: Home / Archives for BPD

Feisty Faith

May 12, 2013 by Leave a Comment

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.

Share
Filed Under: Preemie Power Tagged With: , , ,

Cowboy Cole

January 24, 2013 by Leave a Comment

Cole C ~ Super Hero Alias: Cowboy Cole

Cole CAge: 5 years
Weight at birth: 1 lb 5 oz
Weeks gestation: 24 weeks
Time in the NICU: 147 days

Diagnosis, surgeries, complications?

Bronchopulmonary Dysplasia, Grade 2 Bilateral Brain Bleed, PDA ligation surgery, Hernia surgery, Intubated for four months.

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

Much to our surprise, Cole was born on a hot day in mid June instead of an autumn day in early October.  Weighing only 1 lb. 5 oz. and having very underdeveloped, sick lungs, Cole was given a 20% chance of survival.  We were told that if he did live, there was only a 5% chance that he would not have life long medical problems.  His stay in the NICU would last until his due date or beyond.  Born in Beaumont, Cole was transported to Texas Children’s Hospital by the Kangaroo Crew.  He was diagnosed with BPD, a chronic lung disease common to premature babies.  During his stay at TCH, he had a grade II bilateral brain bleed, PDA ligation surgery, risk of ROP, and hernia surgery.  He was almost a month old when we were finally able to hold him.  He was intubated four out of the five months he spent at TCH and then received oxygen through a nasal cannula.  A week before Thanksgiving, Cole was released from TCH.  At home, he continued to require oxygen through a nasal cannula and received supplemental nutrition with an NG feeding tube until after his 1st birthday.  He also received occupational and feeding therapy.  Cole is now an energetic five year old and loves the same things that other little boys his age enjoy.  He has a fun loving personality and inspires everyone he meets.  If you met him today, you would never guess all that he has been through.  He is truly our hero!

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

Cole is FEARLESS!  Like a speeding bullet, Cole rode a sheep farther and longer than any other little cowboys and cowgirls at the rodeo.

Cole is ENERGETIC!  Unable to stand still in the outfield of a TeeBall game, Cole has been spotted picking flowers and throwing dirt.

Cole is CHARMING!  Cole never misses an opportunity to greet a pretty lady.  He has been witnessed practicing on the mannequins at department stores with, “Hello Ladies!”.

Note (posted 10/23/12):

You can see Cole’s journey at Carepages.com. The name of his care page is colecoopercarepage.

What advice do you have for future NICU parents?

You are your baby’s best advocate… don’t be afraid to ask questions.  Although you may not be able to hold your baby for a while, you can read, hum, and sing to your baby.  Be as involved as the hospital staff will allow you to be. You can tell them you want to participate in little things like bathing, diapers, and feedings.

Share
Filed Under: Preemie Power Tagged With: , , , , , , ,

Tiny-N-Tuff

January 16, 2013 by Leave a Comment

Kastyn & Kenady M ~ Super Hero Alias: Tiny-N-Tuff

Kastyn & Kenady M.Age: 8 months old
Weight at birth: Kastyn 2lbs, Kenady 1lb 15oz
Weeks gestation: 26 weeks
Time in the NICU: Kastyn 120 days, Kenady 141 days

Diagnosis, surgeries, complications?

Kastyn: Bronchopulmonary Dysplasia, PDA, ROP, Laryngomalacia, Osteopenia of Prematurity, Hydronephrosis, Gastroesophageal Reflux. Surgeries: PDA Ligation, Supraglottoplasty

Kenady: Bronchopulmonary Dysplasia, Gastroesophagael Reflux, Subglottic Stenosis, ROP, IVH, PDA. Surgeries: Glottis Granuloma Resection, Tracheostomy, Gastrostomy Tube, Nissen Fundoplication

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

Kenady and Kastyn should be recognized as Preemie of the Year because they are the example of strength. I was put on hospital bed rest at 20 weeks and my doctor thought that within a couple of days I would lose both of them. They held on for 6 weeks. When they were born, they were so tiny yet so strong. Kastyn was the sickest baby and for days we didn’t know if he would live. His lungs were so bad that they did not know if he would be able to come off of the ventilator.  He fooled everyone and 120 days later he came home with no oxygen and very few medications. He now weighs 15 lbs and is growing like a weed.  Kenady also played a few tricks on us. At six days old she was off the ventilator and breathing on her own but was so small she wore herself out. At a week old and only 1lb 12oz she flipped over and extubated herself. We knew she was a fighter.  After 115 days in the NICU it was determined that she would need a tracheostomy.  She received her trach on July 8th and on July 17th she came home. She is still tiny at 11lbs but she is a little spitfire.  After all that she has been through she has a smile that will light up a room.  Kastyn and Kenady are my heroes.

Note (posted Oct 31, 2012):

Thank you to everyone for voting…We just recently found out that our fierce little girl has more obstacles to overcome. We thought she would outgrow the need for her trach but things went the opposite direction and her airway is completely closed. The trach is her lifeline. The doctors hope sometime after her 1st birthday they can reconstruct her airway. She is so brave and still smiling everyday.

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

Kastyn is strong, thoughtful, and energetic.  He has a very sensitive side to him.

Kenady is my brave, fierce fighter. She always has a smile and can melt your heart.

Share
Filed Under: Preemie Power Tagged With: , , , , , , , , , , , , , , ,

Amazing Ava

January 4, 2013 by Leave a Comment

Ava H

Ava H ~ Super Hero Alias: Amazing Ava

Current age: 2.5 years old
Weight at birth: 1 lb 2 oz
Weeks gestation: 24 weeks
Time in the NICU: 176 days in NICU, 278 days in PICU, Total of 454 days in hospital since birth

Diagnosis, surgeries, complications?

Trached & ventilated for 2-1/2 years, pulmonary hypertension, asthma, GJ, G-tube, micro-preemie, ROP, PDA, BPD, GERD, weak immune system, slow gastric emptying, severe developmental delays & more

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

Look up in the air, it’s a bird… it’s a plane… It’s Super Ava! My daughter Ava is a child who will make a difference in this world. Her inviting smile and story has already helped people have faith and hope. We were told from the beginning that she would never be viable (from 6 weeks on) but Ava’s heart stayed strong & healthy. Although she has gone through challenges most people don’t see in a lifetime, Ava has chosen to conquer life and take it on like “Super Girl”. She has fought numerous enemies like Lung Disease & infections with remarkable patience & ease despite being in the hospital most of her life. Being born as a micro-preemie hasn’t conquered Ava, but rather made her into a strong & loving Super Hero that has hurtled life with a single bound.

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

Courageous – Ava has been courageous from the start. From shaking her fist at the NICU nurses the night they told us she was going to die, to bravely getting monthly immunoglobin infusions & blood draws.

Super strength – A few days after Ava came home to us the first time, she needed chest compressions to revive her. On the way to the hospital in the ambulance after being revived, she watched Elmo on my lap as if nothing happened. This happened twice before the hospital discovered she had rotavirus.

Extra endurance – Ava went 6 weeks without amniotic fluid in utero. Her heart kept beating strong & despite the docs saying that she would never be viable, Ava came out fighting for the long haul. She has endured numerous induced comas while in the NICU & PICU which kept Ava from sitting up until she was over 1 1/2 years old. She started walking & being ventilator-free this July & no longer needs a trach to breathe.

Kind to Strangers – Ava always has a smile to share and can make someone’s day incredibly bright. She waves to strangers and reaches out her hand to invite them into her world of love.

To see more instances of Ava’s strength, you can view her blog at http://annhackett.blogspot.com

Note: This photo of Ava is the day that Ava’s trach came out & she breathed without any assistance.

Share
Filed Under: Preemie Power Tagged With: , , , , , , , , , ,

Lion Heart Luke

December 10, 2012 by Leave a Comment

Luke B. ~ Super Hero Alias: Lion Heart Luke

Luke BAge: 19 months
Weight at birth: 1 lb, 13 oz
Weeks gestation: 27 weeks
Time in the NICU: 75 days

Diagnosis, surgeries, complications?

Severe BPD
PDA Surgery

Why Should Your Child Be Recognized as Preemie of the Year?
Luke was born at 27 weeks gestation weighing 1lb 13 oz due to mom having severe HELLP Syndrome.  Luke was immediately placed on the vent and spent 5-1/2 weeks on a vent.  It was immediately discovered he had a large PDA.  He received 3 rounds of medication to try to close the PDA.  At 2-1/2 weeks he had PDA surgery.  He developed pneumonia three times while in the NICU.  He was taken off the vent and was put on a Nasal Prong vent for 2 days then moved to a cannula.  The respiratory team did not want to take him off the vent as they felt he was not ready.  Luke spent 75 days in the NICU.

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

Luke is strong, he was born fighting and at this point has come out on top. At 19 months Luke has completely caught up to his actual age.

Luke is amazing. Luke began walking at 12 months actual, taking a step or two. He was completely walking by 13-1/2 months.

Luke is relentless; he knows what he wants and does not stop until he has it. Luke loves to be independent at this age. He doesn’t let anything stop him.

Luke is an inspiration. He has in his short 19 months has been such an inspiration. We have returned to the NICU and he has been taken into see some of the families. He has been able to give them hope.

What advice do you have for future NICU parents?

Don’t rush.  Let your child determine his stay and how he develops.

Share
Filed Under: Preemie Power Tagged With: , , , ,

Fiesty “Spitfire” Gabriel

November 27, 2012 by Leave a Comment

Gabriel A. ~ Super Hero Alias: Fiesty “Spitfire” Gabriel

Gabriel AAge: 20 months
Weight at birth: 1 lb, 2 oz
Weeks gestation: 25 weeks
Time in the NICU: 132 days

Diagnosis, surgeries, complications?

Extreme prematurity, PDA ligation surgery, Bronchial Pulmonary Dysplasia, ROP, Pneumonia, Sepsis

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

Gabriel was born a fighter. Actually, from the moment I felt his first flutters when he was still warm and cozy in utero, I knew he was a fiesty little one! He didn’t just give one or two kicks. No! Gabriel moved like he was doing the doggie paddle or maybe even in a boxing match. And from that very first movement I could just imagine him trying to tell us that “I am here and I am a fighter!”At 25 weeks gestation, I went into labour and delivered a tiny 1 lb 2 ounce miracle. He was born still in the sac and my husband is still amazed at how our sweet baby reached his arms up and out through the opening the doctor made in the sac, as though saying “Here I am world!!” We named him Gabriel and we feel very confident that a certain angel by the same name was watching over him.

His 4.5 months in the NICU were a whirlwind. He was born at 1 lb 2 ounces and by far, the sickest, smallest baby in the NICU at the time. A few times, we were sure he wasn’t going to make it through another hour but he has defied all odds and now we know that the greatest miracles come in the smallest of packages.

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

Strong-We did not know the true meaning of strength until our little fighter showed us. He taught us to climb over every obstacle without stopping and without looking back. He is truly the strongest person in our lives.

Fighter-When I think of a fighter, I think of Gabriel who fought for 132 days so that he could come home and be with his family. He fought so much, the doctors had to paralyze him in order to let the machines fully help him.

Grateful- Everyday that I wake up and see Gabriel’s smiling face, I know that he is grateful. Grateful to be alive and grateful to be enjoying the simple things in life that so many people take for granted.

What advice do you have for future NICU parents?

Remember–Where there is life, there is hope!

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?

I definitely think that a support group would have helped us tremendously. I am in the process of starting one for 2 NICU’s in Ottawa and I believe that the parents will benefit from speaking to someone who has been there and done that!
Share
Filed Under: Preemie Power Tagged With: , , , , , , ,

Tiny Warriors

September 1, 2012 by Leave a Comment

Christian & Landon L. ~ Super Hero Alias: Tiny Warriors

Christian & Landon LAge: 13 months
Weight at Birth: 1lb 15oz & 2lbs 3oz
Weeks Gestation: 27 weeks
Time in the NICU: Christian: 195 days, Landon: 75 days

Diagnosis, complications, surgeries?
Apgars: Christian – 1, 5, 7; Landon – 1, 7, 9

Diagnoses:

  • Intraventricular Hemmorhage, Grade II (Christian)
  • Bronchopulmonary Dysplasia (Christian)
  • Patent Ductus Arteriosis (Both)
  • Ventricular Septal Defect (Christian)
  • Cholestatic Jaundice (Christian)
  • Retinopathy of Prematurity (Both)
  • GERD (Both)
  • Transfusions (Christian: 6 Landon: 3)
  • UTI (Christian)
  • 2 ALTE (Christian)
  • Bilateral Inguinal Hernias (Christian)
  • Hydrocele (Landon)
  • Subglottic Stenosis (Christian)

Surgeries/Procedures:

  • Bronchoscopy with removal of transglottic granulation tissue (Christian)
  • PH probe (Christian)
  • Bilateral Inguinal Hernia repair (Christian)
  • Nissen Fundoplication (Christian)
  • Gastrostomy Tube placement (Christian)

Why should your children be recognized as “Preemies of the Year”?

Born at 27 weeks gestation, Christian (PROM at 24 weeks) and Landon came into the world ready to fight. Landon powered through and met milestones with great strength and determination. He came home after 11 weeks in the NICU. Christian had a longer road and was slowed by his respiratory deficiencies. He spent 4 months on a ventilator and after countless failed extubation attempts, was scheduled for a tracheotomy. The day before his trach surgery, the doctors tried one last time to extubate — and Christian, with oxygen support, breathed on his own. At 6.5 months old, Christian finally came home for the first time… and thrived. Now at 13 months old, you wouldn’t know what kind of start they had!

[Read more...]

Share
Filed Under: Preemie Power Tagged With: , , , , , , , , , , , , ,

Miracle Men!

July 21, 2012 by Leave a Comment

Peter and Marc A. ~ Super Hero Alias: Miracle Men!

Peter and Marc A.Age: 29 months old
Weight at Birth: 1280 (Peter) and 1200 (Marc) grams
Weeks Gestation: 26 weeks, 3 days
Time in the NICU: 58 (Peter) and 85 (Marc)

Diagnosis, complications, surgeries?

Necrotizing Enterocolitis (both, no surgical intervention needed!)
Hyperbilirubinemia (both)
Apnea (both)
Bradycardia (both)
Oxygen Desaturations (both)
Patent Ductus Arteriosis (Marc)
Respiratory Distress Syndrome (both)
Low Blood Pressure (both)
Primary Pulmonary Hypertension (Marc)
Retinopathy of Prematurity (both, Peter stage 2, Marc stage 2-3)
Intraventricular Hemorrhage (Marc grade 1 on right, Peter grade 2 right, grade 3 left germinal cortex)
Sepsis (Peter twice, Marc once)
Simple infections (both several times)
Bronchopulmonary Dysplasia (Marc + still affected)
Pulmonary Hemorrhage (Marc)
Transient Tachypnia (Peter)
Reflux (Both, Marc still affected)
Inability to make their own red blood cells, resulting in need for transfusions. (Peter 6 transfusions, Marc 28 transfusions)
Hypothermia (Both, Peter worse at arrival to hospital)
Hypoglycemia (both)
Immature gastrointestinal and digestive system (both)
Hypospadius with chordee (both)
Vascular anomaly in leg (Marc)
2 sets of ear tubes (Marc)
developmental and physical delays (Marc)
Reflux (Marc)
Asthma (Marc)

Why should your children be recognized as “Preemies of the Year”?

Despite the odds being against them: Peter was born at home, and even though he was only 26+3, he was able to breathe on his own long enough to get to the hospital. Marc was extremely sick,  and we were told to say goodbye. We allowed him to be part of a “study” which we truly believe saved his life. Both at 29 months old are happy healthy children with only minor delays. Although Marc does have some residual effects from his rough beginning, both boys are off doing things we were told they would never do, such as walk, talk (Peter anyways, Marc does not yet speak) run, climb, jump, eat, etc.

[Read more...]

Share
Filed Under: Preemie Power Tagged With: , , , , , , , , , , ,

Sean, the Strong!

April 22, 2012 by Leave a Comment

Sean M. ~ Super Hero Alias: Sean, the Strong!

Sean MAge: 12 months
Weight at Birth: 2 lbs, 14 ounces
Weeks Gestation: 26 weeks, 6 days
Time in the NICU: 72 days

Diagnosis, complications, surgeries?

Bronchopulmonary Dysplasia
PDA (closed on its own!)
Stage 1 IVH (brain bleed, also resolved on its own over time)
Stage 1 Retinopathy of Prematurity
Respiratory Distress Syndrome

Sean was born very unexpectedly and I was diagnosed with incompetent cervix. My chances of having another preemie in the future are high, but they are options I can go through to try and get around it. Sean is almost one year old and currently weighs 21 lbs and 4 oz. He is doing pretty well developmentally; he is almost crawling and his first tooth popped up this evening. He says mama and dada. He was a real fighter, and I look up to him every day for that. He is a happy, healthy little boy.

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

Sean is an extraordinary little boy and he might be a baby, but I look up to him in so many ways. He was brought into this world 3 months early, and fought so hard to stay here. His NICU stay was actually very smooth, his PDA closed on its own, he never required any blood transfusions, his breathing tube was taken out 4 hours after birth, CPAP was only in for 3 weeks, and the cannula not long after. Despite being a premature baby, he is just so happy and healthy, you would never hardly tell the difference. I want to show others that preemies can achieve anything if you truly believe in them.
[Read more...]

Share
Filed Under: Preemie Power Tagged With: , , , , , , , , ,

Faithful Kaleb

January 20, 2012 by 2 Comments

Kaleb M. ~ Super Hero Alias: Faithful Kaleb

Kaleb MAge: 23 months
Weight at Birth: 1 pound 10 ounces
Weeks Gestation: 27 weeks
Time in the NICU: 150 days

Diagnosis, complications, surgeries?
Gtube, inguinal hernia, Had BPD, cardiac problems, 1 kidney

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

On Oct. 13, I was rushed to surgery when the baby’s heart rate dropped. After an emergency C-section at the Walt Disney Pavilion at Florida Hospital for Children, Kaleb was welcomed into this world. He was just 1 lb., 10 oz. and 12 inches long.

He was admitted immediately to the Neonatal Intensive Care Unit (NICU). He was so tiny that he fit in our hands and we could do nothing but hope and trust that God was in control. As you can imagine, it was a very stressful time. But Kaleb was so strong and he continued to improve. There were many good days, and some bad ones too. It seemed that for every two steps forward we’d take ten big ones back.

Kaleb’s mom Rosie Moore wrote a book, A Story of Faith, about her experience to share hope with other families. Find out more.

With time, Kaleb came off the ventilator and CPAP and continued to show improvement. He had problems eating so he had to have additional surgery to have a bilateral inguinal hernia repaired and a feeding tube inserted to help him get the nutrition he needed.

Kaleb called the hospital home for the first five months of his life before he was finally able to come home with us in March 2010. With the help of the nurses, respiratory therapists and doctors at the Walt Disney Pavilion at Florida Hospital for Children who were such a big part of his life for 23 weeks, we now have Kaleb, our little miracle from God. We hope that anyone who reads this will find encouragement and understand that miracles can and do happen. Our own Kaleb is a testament to this. And we thank God and your hospital for this miracle and blessing bestowed on our family.
[Read more...]

Share
Filed Under: Preemie Power Tagged With: , , , , , , , ,
«Older Posts

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