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Miraculous Makaiyah

April 26, 2013 by Leave a Comment

Makaiyah M. ~ Super Hero Alias: Miraculous Makaiyah

Makaiyah BAge: 6 months
Weight at birth: 3lbs 8oz
Weeks gestation: 33 weeks
Time in the NICU: 32 days

Diagnosis, surgeries, complications?

Intrauterine Growth Restriction. She stopped growing at 29 weeks.

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

Makaiyah has came a long way and though I realize she was not a micro preemie, she still had her battles to overcome. She had came to complete IUGR at 29 weeks but it was not discovered until I went to labor and delivery for severe pain at 32 weeks. Anything bad could have happened to her in the womb during that time but she held on tight and survived. She amazes us every day with what she accomplishes and she’s such a joy to have.

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

Makaiyah is strong, strong-willed and stubborn. I believe it was the combination of these three things that kept her alive and going.

What advice do you have for future NICU parents?

You’re stronger then you may think. The NICU proves it!

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Dom-inator

December 26, 2012 by Leave a Comment

Domonic O. ~ Super Hero Alias: Dom-inator

Domonic OAge: 3 years, 5 months
Weight at birth: 1 lb, 8 oz
Weeks gestation: 28 weeks
Time in the NICU: 128 days

Diagnosis, surgeries, complications?

Severe IUGR, PDA ligation (3 days old), Gtube, Nissen Fundoplication, GJ tube, 8 surgeries for infections of MRSA originating from Nissen. Mild Ataxic CP, Oral Aversion, Failure to thrive, Superior Oblique Palsy as result of RSV, Developmentally delayed, Grade III IVH, numerous blood transfusions, GERD, Slow motility, PKU, Hiatal Hernia.

Why Should Your Child Be Recognized as Preemie of the Year?
Dom has been such a true testament to never giving up. He has continuously hit road block after road block and has approached each with the biggest grin you have ever seen, just completely happy. He truly DOMinates every obstacle. Since his release from the NICU just over 3 years ago, he has been hospitalized 25 times and each time we hear the same phrase, “You are so happy for a sick little guy.” Dom is able to do things most adults cannot and that is focusing on the good the good things in life. I recall the first day he walked with his little walker, he had the brightest face full of excitement, mine full of tears. Now I can barely keep up! All of the surgeries, all of the hospital stays, all of the medications, tests and procedures DO NOT hamper who Dom is in any respect. He has taught us the true meaning of living life for each moment and I could not be prouder of him.

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

Super Super Strong- He has endured 12 surgeries and yet still smiles.
Beyond Brave- Although he is terrified of any office or medical professional, he cooperates to get what is needed done, whether its blood work, ct’s, xrays’s, mri’s. He does it.
Intelligent- he has learned to attach his feeding extension and start the pump. He may be delayed in some aspects yet can still teach an adult a thing or two.
Ability to change/touch lives- Dom has made numerous friends in his short journey, his ability to fight forth after each thing he comes across is amazing.

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Deuce

December 24, 2012 by Leave a Comment
Bobby R

Bobby R

Bobby R ~ Super Hero Alias: Deuce

Current age: 21 months
Weight at birth: 1.96 lbs
Weeks gestation: 26 weeks
NICU Stay: 158 days

Diagnosis, surgeries, complications?

IUGR (should have weighed approx. 3 lbs. at birth); Respiratory Distress Syndrome/Chronic lung disease; Pneumonia; sepsis; GERD; Adrenal insufficiency; ROP stage 2; Respiratory failure; PDA; bilateral inguinal hernia surgery; 3 life threatening infections; “Wimpy White Boy” Syndrome

Why Should Your Child Be Recognized as Preemie of the Year?
What makes on a superhero?  There are a few commonalities that ALL Superheroes share.

Superheroes:

  • Have Alter-Egos
  • Have weaknesses
  • Have Lairs
  • Are Brave

Superman, Iron Man, Deuce, these are all true Superheroes.
Deuce? Who’s that you say?

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

Deuce, also known as Bobby (his alter ego, who’s never caught without his glasses) was born 21 months ago. A micropreemie, Deuce weighed only 721g (1 pound 9 ounces) at birth.  He was severely underdeveloped and vulnerable. Struggling with respiratory distress syndrome, Deuce was placed on a ventilator in a NICU.  Two weeks after his birth, Deuce developed upper lobe pneumonia and went into respiratory failure. He had to be medevac’d to Children’s Hospital in Philadelphia (CHOP) because it was a level IV NICU and Deuce needed maximum support to stave off his weakness – the dreaded Pneumonia Man and his powerful kryptonite like chronic lung disease/respiratory failure.  His chances of surviving the flight, let alone his challenges ahead, were 50/50, at BEST.

Against the odds, Deuce started to (slowly) improve, once he got into his isolette at CHOP (AKA his Lair).  His arch-enemy (Pneumonia Man) tried everything to stop him – resulting in the use of a JET ventilator, used in trying to harm Deuce’s hearing with its helicopteresque decibel levels.  He caused infections befuddling some of the best doctors in the world.  Whenever Deuce started to eat more volume of his mommy’s liquid gold, Pneumonia Man hindered the progress – by dropping Deuce’s Blood Pressure, or causing reflux, and Deuce fought through every obstacle!

Once, the doctors noticed a whistling sound coming from Deuce.  Turned out that Deuce fought so hard that he outgrew the rigid ventilator tube and air was escaping.  They decided to extubate Deuce, much earlier than desired, and let him rest on Si-Pap for 12 hours, with equipment ready to reintubate with correct tubing. Deuce, fearing that the tube was the instrument that Pneumonia Man was using to weaken him, fought with such determination that he never was intubated again.  Well, that’s not 100% true.

Just before Deuce was released from the hospital, he needed hernia surgery.  This was worrisome because he had to be intubated again for surgery.  Before the doctors took him away, Deuce looked at me, winked and gave me a (figurative) fist bump.  I knew all was going to be OK, because he was so resilient. I was proven right as he was extubated when he returned to his lair.  Deuce’s bravery and determination are awe inspiring.  He fought through every obstacle that Pneumonia Man could muster and 158 days after birth, Deuce left his lair and began living as his alter-ego “Bobby”  in the Superhero Relocation/Protection Program (allegedly somewhere in Maryland).

Knock on wood, Deuce hasn’t encountered Pneumonia Man again, but surely he’d be ready to rip off his glasses, jump into his lair (although he probably needs to remodel because he’s a bit bigger than when he used it last) and destroy Pneumonia Man once and for all!

What advice do you have for future NICU parents?

Stay strong and never give up hope.  As Yogi Berra said, “It ain’t over till it’s over!”  And make sure you have a great support system (non family) who you can lean on and will allow you to have a tiny escape from the daily stress of parenting a newborn micropreemie.  Family is wonderful, but they are also hurting.  You need people around that won’t ask questions and will allow you to escape to the mundane every day worldly happenings.  Take pictures, enjoy the moments – the 1st bath, the 1st kangaroo care, the 1st feeding!  Keep a journal, write whatever you want – whether daily notes from the Doctors rounds or highlights – Believe me, it is awe inspiring to go back and review after the fact.

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 wish we would have known about Hand to Hold during Bobby’s NICU journey.  I feel that these services could provide the type of support that I mentioned above – the escape the mundane world support.

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Lonestar Luke

December 20, 2012 by Leave a Comment
Luke W

Luke W

Luke W ~ Super Hero Alias: Lonestar Luke

Age: 2 years old
Weight at birth: 3 lbs, 9 oz
Weeks gestation: 36 weeks
NICU stay: 44 days

Diagnosis, surgeries, complications?

Luke’s list is bigger than Texas! He began life as an IUGR baby (he didn’t grow well in utero) and had a pelvic kidney. Then, we discovered two holes in his heart (VSD and PDA), a tethered spinal cord and an incomplete skull.  We breathed a sigh of relief, until a nasty villain showed up, necrotizing enterocolitis (NEC). We had an emergency transport to Dell Children’s where Luke underwent emergency bowel surgery and lost 16cm of bowel and his appendix. We owe Luke’s life to his surgeon, neonatologist and an army of prayer warriors.

Why Should Your Child Be Recognized as Preemies of the Year?
Lonestar Luke may have come out tiny for a 36-weeker, but the lessons he taught us have been bigger thanTexas:  patience, trust, surrender, joy and thanksgiving.  There have been many times Luke’s life hung in the balance.  Yet, he’s a tough cowboy and keeps defying the odds and surprising his specialists – all ten of them.  Somehow, he roped his specialists into five surgeries on his belly, spinal cord and ears (one more to go on his brain) and eight hospital stays.  One of his biggest nemesis’ didn’t show his face until surgery number four; he and cephalosporins are arch enemies.  But, once he got a shot of new blood and plasma, his sharpshooting skills were better than ever.  The chuckwagon still doesn’t hold much appeal for him; he’d rather drink his calories than eat them.  He does have two mighty cute cowgirls (speech and occupational therapists) that are working to convince him otherwise.  He’s still a wrangler of few words, but he does have a mighty fine laugh, big blue eyes and a soft spot for animals.  You’d have to ride the range a long time find a tougher cowboy than our Lonestar Luke.

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

Tone of Surprise:  Lonestar Luke is an expert in surprising his enemies, like blood allergies and developmental delays.  Just when they think they’ve corralled him, he makes an escape for greener pastures.

Strong-willed:  Luke’s four siblings don’t offer their cowboy brother any slack.  He has to arm wrestle for his favorite toy, run like the wind when he wins it from his brothers and sweet talk his sisters when they take it away.

Hero:  Our 3lb. 9oz. cowboy came out galloping and has become a hero to his siblings, his parents and his friends.  His brawls have been many, but he comes out stronger each time.

What advice do you have for future NICU parents?

Get a Hand to Hold mentor.  Learn to say “yes” when people ask if they can help.  Seriously.  Give them a job and ease your stress.  Pump if you can, that breastmilk is gold.  Cut yourself some slack.  This is, quite possibly, the hardest thing you’ll ever do.

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?

My Hand to Hold mentor, Kelli, gave me much-needed sanity, a big hug, a cold Dr Pepper, plenty of chocolate, a listening ear, sound advice and a heart full of understanding.  No website, no book, no brochure can give you all that…only a parent who’s been there before.

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Trailblazing Trevor

December 15, 2012 by Leave a Comment

Trevor C. ~ Super Hero Alias: Trailblazing Trevor

Trevor CAge: 23 months
Weight at birth: 1 lb, 1 oz
Weeks gestation: 26 weeks
Time in the NICU: 102 days

Diagnosis, surgeries, complications?

Severe IUGR (he should have weighed around 2.5 pounds at 26 weeks, but he was the size of a 22 weeker). PDA ligation at 2 days old, Bilateral brain bleed progressed into Cystic PVL (dead brain tissue), Chronic Lung Disease, Paralyzed vocal chord, Dysphagia, Atrial Tachycardia, inguinal hernias, Stage 2 ROP, GERD, 2 life-threatening infections, 16 blood transfusions, countless spinal taps.

Why Should Your Child Be Recognized as Preemie of the Year?
In spite of Trevor’s difficult birth and the terrible diagnosis of Cystic PVL, he has overcome all obstacles forced upon him.  Trevor will turn 2 years old on October 19th and has NO signs of any physical or mental disability.  Cystic PVL is almost always followed by a Cerebral Palsy diagnosis. In fact, we were told numerous times to expect him to have some form of CP and mental retardation.  Trevor does not have any signs of CP or mental retardation.  His story and journey continues to inspire many people.  Our family participates in raising funds and awareness for The March of Dimes, Children’s Miracle Network, and Graham’s Foundation.  We were recently chosen as a Texas Children’s Hospital “Miracle Family” for the Children’s Miracle Network.  Trevor’s photo and story appear on “miracle cards” distributed by CMN in efforts to gain CMN sponsors.  Team Trevor compiled a cookbook named “A Pound of This…An Ounce of That,” to raise money for the March of Dimes.  We received recipes from all 50 states in the US, 6 different countries, and personal submissions from celebrities including: Paula Deen, Brian Boitano, Nolan Ryan, Mario Andretti and many more.  Trevor has touched the lives and hearts of so many people across the nation.   He reminds us how precious life is, and how quickly it can be changed forever, and his story brings hope and inspiration to families of extremely pre-term babies.   He continues to prove to us everyday, that he fought the “preemie fight,” and he won.

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

Trevor’s resilience,strength and determination amazed doctors and specialists from the moment he was born. While being prepped for an emergency cesarean, I was told that IF he survived delivery, not to expect to hear him cry at birth. Babies under 500 grams are not strong enough to cry. At 5:31pm, the moment he was brought into this world, Trevor cried. He stopped breathing shortly after and had to be intubated, but nonetheless, he made sure that his mommy heard him cry before they whisked him away. I never even seen him, but I heard him, and those tiny cries healed my heart for the moment.
Trevor had amazing determination from the beginning and still does today. He fought against the ventilator, breathing over it so much that doctors were afraid he would cause a tear in his lungs. He was not strong enough to breathe efficiently on his own, so he required the help of the ventilator, but he never stopped trying. He was determined to live, determined to cry, and determined to overcome the damage caused by his bleeding brain.

His ability to overcome statistics are mind boggling. Statistically, babies born weighing less than 500 grams do not survive, and sadly, those that do, usually face life-altering disabilities. Trevor weighed 490 grams. Not only did he survive, he fought endlessly, and walked away from extreme prematurity with no lasting effects. Trevor has blazed a trail through the NICU journey, and paved the way for future micro-preemies! Our little cowboy is, and will always be, my Super Hero.

What advice do you have for future NICU parents?

Where there’s life, there’s hope!  Stay strong, fight for your child, and never give up.

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 wish that I had known about Hand to Hold during our NICU journey.  I feel that talking with other parents who had previously experienced the same situation, would have helped me cope tremendously!

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Ian Man!

November 1, 2012 by Leave a Comment

Ian S. ~ Super Hero Alias: Ian Man!

Ian S

Age: 8.5 years
Weight at Birth: 1 lb. 12.4 ounces
Weeks Gestation: 32 (26wks IUGR)
Time in the NICU: 45 days (about 5.5 weeks)

Diagnosis, complications, surgeries?

Multiple blood transfusions, Apnea of prematurity, Bradycardia, PICC line, Reflux, first head scan IUGR, Apnea, Bradycardia, patent ductus arteriosus (PDA), Double Hernia Surgery at 4 months – age 3 diagnosed with: ADHD, asthma and febrile seizure

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

Ian was nicknamed by the nurses and Doctors in the hospital as “Small but Mighty.” For only being 1 pound 12.4 ounces and 13 inches long he made a huge impact on all who met him. How a little baby boy can show such charisma and personality at his size was beyond me, but he did. One morning we came in to kangaroo with him and the nurse mentioned that the night before Ian had traveled the inner circumference of his isolette while strapped down in his little snuglie. She had never seen a micropreemie do so! We had so many ups and downs in and out of the hospital but his strength and attitude always inspired us.
When Ian was about to turn two and wasn’t walking, we were concerned. We met up with a physical therapist that worked with him doing visceral stimulation and Ian was walking within 12 hours. No, not walking, excitedly doing laps from our sofa to our door; back and forth for at least 20 minutes. He was giggling with excitement the whole time.

Ian has had a rough road with his asthma. We’ve had more ER visits than we could count as well as two 911 calls. Each time he held no ill will to the nurses or doctors; he would smile and work his charm. He views the hospital as a fun place which amazes me considering all he has been through.

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Wild Woman Yara

August 10, 2012 by Leave a Comment

Yara F. ~ Super Hero Alias: Wild Woman Yara

Yara BAge: 6 years
Weight at Birth: 2 lbs, 3 oz
Weeks Gestation: 34 weeks
Time in the NICU: 7 weeks

Diagnosis, complications, surgeries?

Yara was IUGR and only grew to 29.5 weeks in utero.  She had PDA surgery two days after her delivery and then spent time in the NICU working on building up her weight and getting her gastrointestinal system to work correctly.

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

Because you would never know that Yara was a preemie! As they say, dynamite comes in small packages, and this little peanut is just that.  She showed the world from the moment that she came into it that she was loaded and ready to go.  The nurses at St. David’s dubbed her “Wild Woman Yara” early on because of her spunk and fearless attitude.  She would use those strong lungs of hers to get their attention and it worked so well that she was given her own private room in the NICU.  She has grown up to be a very precocious and life loving little girl who believed she could fly when she was three so she jumped off of a playscape and broke her wrist, thinking she was a superhero.  She is the life of a party and is a great testament that preemies can conquer the greatest challenges and not just survive but THRIVE!

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Mighty Mykah

May 24, 2012 by Leave a Comment

Mykah T. ~ Super Hero Alias: Mighty Mykah

Mykah TAge: 2 years old
Weight at Birth: 1 lb 5 oz
Weeks Gestation: 32 weeks
Time in the NICU: 106 days

Diagnosis, complications, surgeries?

Mykah was born at 32 weeks but was diagnosed with Intrauterine growth restriction (IUGR) and was the size of a 24 weeker. At 17 days old she was diagnosed with Necrotizing Enterocolitis, usually called NEC, is a condition where the intestines become infected and can begin to die. At only 17 days old she had her first surgery to try to have the bowel drain. At 2 pounds she had her second surgery, a Colostomy and had ostomy bag placed that had to be carefully monitored. After waiting till she finally reached 4 pounds she had her 3rd and final surgery to repair the bowel. After the 106 long days in the hospital, she was finally sent home a healthy (although small) 3 and half month old little girl.

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

Mykah should be recognized as preemie of the year because her smile is contagious and can make you fall in love with her with just one look in her eyes. She is just the most happy and sweetest little girl. She loves to be around people and makes sure to say “Hi” to everyone she meets; she truly lights up a room. Her personality is so big, you can honestly forget how small she is. If it was up to Mykah everyone would be singing and dancing instead of doing anything else.

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Super Luke

May 8, 2011 by Leave a Comment

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

Luke W. ~ Super Hero Alias: Super Luke

LukeAge: 13 months
Weight at Birth: 3 lbs 9 oz
Weeks Gestation: 36 weeks, 3 days
Time in the NICU: 44 days

Diagnosis, complications, surgeries?
Luke was initially diagnosed as an IUGR (intrauterine growth restriction) baby – he just did not grow well in utero.  After birth, we discovered two heart defects, PDA and VSD, a pelvic kidney, bilateral arachnoid brain cysts and a tethered spinal cord.  Our biggest complicating factor?  Developing a severe surgical case of necrotizing enterocolitis (NEC) on day nine.  Most recently, he was diagnosed with plagiocephaly and brachycephaly, hence the reason for his awesome Aggie football helmet!

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

Luke is a fighter.  Luke is a miracle.  Luke is complicated.  Luke is a stinker.  Luke is an inspiration.  Even after all the setbacks with his additional diagnoses, he just kept making slow and steady progress.  After NICU discharge we thought we were in the clear!  Then, in the span of seven months, we returned to Dell Children’s for four more surgeries and a total of seven hospital stays.  Through the past year, we have grown into more compassionate parents to our own children, and others who have special needs. I hope Luke’s scars never fade away, they are a reminder of how far we’ve come.

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Thundering Thurston

March 31, 2011 by 2 Comments

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

Thurston M. ~ Super Hero Alias: Thundering Thurston

Age: 8 months old
Weight at Birth: 1 lb 4 oz
Weeks Gestation: 27 weeks
Time in the NICU: 230 days

Diagnosis, complications, surgeries?
IUGR, BPD, CLD, PDA, High Blood Pressure, Pulmonary hypertension, over 20 blood transfusions, multiple Nitric Oxide infusions, on the oscillator for first 4 weeks, on the cpap for a very long 13 weeks, on cannula for 4 weeks, aspirated (we think) and almost died again, back on oscillator for 2 weeks, cpap for 1 week and back on high flow nasal cannula, switched hospitals, gtube/fundo surgery, possible trach surgery, possible hernia surgery, ROP stage 2 zone 2 resolved, 4 rounds of steroids, on chronic diuretics, inhalers, and multiple other medications etc.

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

Thurston has been the most extraordinary little superhero ever and the best teacher anyone could ever ask for.  He has taught me and my family numerous lessons, and in true superhero fashion, has shape-shifted all of us, warming and changing our hearts forever.

When we were told that Thurston was not going to even make it out of the womb, they sent us home for him to pass away quietly inside me.  To try and cope with such a great and sorrowful loss, I kept thinking about how lucky I was to have known him even that much, to have felt his little kicks, to feel him inside me just even for a few more days.  He taught me to carpe diem, or seize the day, and to enjoy what time I did have with him, however short that was to be.

When he hung on and was born, he taught me about patience.  he taught me that things do not happen overnight.  I really wanted him to come home around his due date and when that didn’t happen, I became frustrated.  But after he continued on the roller coaster journey and went through some more harrowing dips, I realized how much I had to be patient, as with patience comes strength, calmness and happiness and that is what he needed his mother to be.

He taught me great humility.  On this journey it is very easy to get caught up in thinking, “Why me, why my family, why my pregnancy, why my son?”  As you begin to meet others on this journey, you realize there are so many others going through the same thing, and still others that are dealing with far worse tragedies than your own. Then the “Why Me’s” slowly turn into the. “Why them?”  Thurston made me look outside of myself and my own problems and realize just how lucky we have been on this journey and has encouraged me to reach out to others who are hurting.

Most importantly, Thurston has taught me to hope more than I ever thought I could.  In the beginning I believed so much of the worst case scenarios that were thrown my way.  Just when I thought he was out of the woods, Thurston was again knocking on death’s door and instead of believing the worst would happen I clung onto the most amazing and overwhelming feeling of hope, realizing not only had he proven time and time again that he has the ability to overcome obstacle after obstacle, but that he deserved a mother that was as strong, as tenacious, as stubborn, as persistent, and as brave as her son had grown to be. [Read more...]

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