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!!!

Mr. Incredible

ChaseAge: 4 years
Weight at Birth: 2lbs 3 ozs
Weeks Gestation: 26
Time spent in the NICU: 92 days

My Preemie Power Story:

Chase was born at 26 weeks, weighing 2lbs 3ozs. At exactly 1 week old we were told he had a massive brain bleed on both sides of his brain. At only 3 weeks of age and less then 3lbs he had his first of many surgeries to have a shunt placed to drain the fluid that was building up. A month later he was diagnosed with a UTI and Meningitis and the shunt was removed immediately. At that moment my life fell apart. I had watched my son work so hard to breath on his own, go from an incubator to an open crib, and to be able to eat from a bottle versus through a tube. He had worked 6 long weeks to get where he was and in a matter of seconds all the work had disappeared and he was being kept alive by a ventilator. That was probably the longest week of my life.

I remember walking into his pod and seeing all the wires and monitors and feeling like we were starting at the beginning again. He proved to me and our entire family that week what a fighter he truly was. Once all the meds kicked in he was able to begin the fight for his life. He fought hard for 7 days and in the end he won. He would not let life beat him. It seemed like one day he still wasn’t improving and then the next he was back to him self and doing everything he was doing just a week before. [Read more…]

Tiny Tornado

RyanAge: 5 years
Weight at Birth: 2lbs
Weeks Gestation: 25
Time spent in the NICU: 134 days

My Preemie Power Story:

Just like a tornado, Ryan came storming into our lives with a flurry of unexpected activity. Ryan was born at 25 weeks, weighing in at 2 pounds. He was born with pneumonia, and remained seriously ill for most of the 19 weeks (134 days total) he remained in NICU. In the span of 5 months, Ryan endured more than most do in an entire lifetime and has the scars to prove it! He continues to not only endure life, but to thrive. This “Tiny Tornado” hasn’t slowed down since NICU…you could categorize his intense activity level as an F-5!

Ryan required Ventilator support for two months, C-pap for one month, and oxygen via nasal cannula for the remainder of his NICU stay. He endured daily chest X-rays, labs, blood transfusions, and required photo therapy for several weeks. A moderate PDA and a Grade 1 brain bleed were found, both of which resolved on their own or with medication. He had mild ROP and today wears glasses. He had two Immunoglobulin infusions while in NICU and one as an outpatient, to bolster his weak immune system. [Read more…]

Ezra the Jedi Padawan

EzraAge: 2 years
Weight at Birth: 2 lbs 3 oz
Weeks Gestation: 25
Time spent in the NICU: 72 days

Preemie Power Story:

Preemie Power Story At the beginning of my pregnancy with Ezra things started out much like his older Padawan sisters and brother. Morning sickness, headaches, and a growing excitement to meet the newest member of our alliance were par de course. But suddenly at 11 weeks I began bleeding profusely. Scared that I was losing our sweet Padawan, I went to the hospital after an ultrasound showed that the Force was still with him. From there my pregnancy was never a guarantee that we would ever meet our Jedi. Clothes were not bought. Dreams of the future were clouded with the reality that it may end in sadness. But we held on. The bleeding, the cause never known, never ceased. Tension began to build and we questioned whether the placenta (where the source of blood seemed to be coming from) would be able to withstand past 24 weeks. After another sudden burst of bleeding, I was hospitalized on strict bed rest. The bleeding let up and I was discharged. When I stood up, the course changed. The bleeding didn’t stop and he was born by emergency C section later that night.

I trusted the doctors more than I had trusted anyone in my life in those moments leading to his birth. A peace fell over me and when I heard his cry, like a kitten, my heart filled with hope. [Read more…]

The Electrifying Tiny Hiney

Ryan ~ Super Hero Alias: The Electrifying Tiny Hiney

RyanAge: 4 years
Weight at birth: 1 lb 15.5 ozs
Weeks gestation: 25 weeks
Time in the NICU: 134 days

Diagnosis, complications, surgeries? 

Ryan was born with a pneumonia infection which required daily chest X-Rays and labs.  Due to the amount of blood drawn, he required several blood transfusions.  He remained on ventilator support for  two months, on C-pap for another month, and nasal cannula for the remainder of his NICU stay.  He became septic due to multiple pneumonia infections, and suffered from Respiratory Distress Syndrome. He had high Bilirubin levels and remained under the photo therapy lights for a couple of weeks.   A moderate PDA and a Grade 1 brain bleed were found, both of which resolved on their own or with medication.  Diuretics were necessary, due to fluid overload.   He had mild ROP and today wears glasses.  He had two Immunoglobulin infusions while in NICU and one as an outpatient, to help bolster his weak immune system.  After returning home, Ryan required oxygen during feedings, was medicated for GERD, and was considered for a PEG tube at 8 months.  Ryan developed Torticollis and Plagiocephaly and wore a cranial remolding helmet for 5 months.  He also wore orthotic shoe inserts to assist with toe walking and low tone.  Ryan has Bronchopulmonary Dysplasia/Chronic Lung Disease and asthma controlled with daily medication and inhalers.  He received multiple therapies and attended Early Childhood Special Education classes until age four.

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

Our Tiny Hiney is quite “electrifying” and not easily forgotten. Ryan’s BIG brown eyes are typically the first thing people notice, but it doesn’t take long before they realize he has a passion for anything mechanical and electrical…especially vacuums. With his first word being “light”, it is no wonder he is asking Santa for a new vacuum, a power strip, and an extension cord for Christmas, or that he named his pet fish Dyson. We have joked that his name should have been Cord. He has an inquisitive nature and a methodical and analytical mind, often taking a scientific approach to most everything he sets his mind to. We attribute this, in part, to his being “raised” by machines for the first 5 months of his life.

Ryan was born at 25 weeks, due to preterm labor. He was born with a pneumonia infection which caused his already compromised lung function to be even more critical. He remained in NICU for 19 weeks…134 days total. Ryan endured more than most do in an entire lifetime, in the span of 5 months…and has the scars to prove it! He continues to not only endure life, but to thrive. He was on the move even in NICU (the nurses had a difficult time keeping him swaddled and he often pulled at his ET and NG tubes) and he hasn’t slowed down!

Life since NICU has not been uneventful for Ryan, yet typical for a micro-preemie. In less than five years, there have been a multitude of medical appointments, procedures, medications, therapies, orthotics, and other special needs. Additional appointments and therapy are in Ryan’s future, to help assist with a cross bite, lateral and frontal lisp, asthma, and for farsightedness and cross-eye. Through it all, Ryan has risen to meet each challenge with a great deal of strength and determination, an intense curiosity, and great sense of humor.

Ryan is not just our Preemie Super Hero of the Year, but of every single day. We recognize him as our Super Hero not only because of his personality, abilities, or his endurance, but because he is a testament to strength, endurance, and determination of the Neonatalogists, NICU nurses, Respiratory Therapists, and other specialists who devote their careers to ensuring a happy, healthy future for our babies. They make miracles like Ryan happen!

To read more about Ryan’s NICU days, and the months following, please take a peak at his Caring Bridge site at http://www.caringbridge.org and enter the site name ryanondrick. For a smile, please watch a video of Ryan reciting the Pledge of Allegiance last Fall at http://youtu.be/Zk1hl6DTlX4. [Read more…]

Amazing Ava

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.

Jedi

Preemie Power 2012 – Ezra C –  Jedi

Ezra CCurrent age: 15 months old
Weight at birth: 2 lbs 3 oz
Weeks gestation: 25 weeks
Time in the NICU: 72 days

Diagnosis, surgeries, complications?

PDA ligation at 3 days old
Severe Reflux
Apnea (came home with monitor)
Currently has severe asthma

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

All preemies are superheroes and our Jedi is no different. He came to the party early and although it has been rough, in the NICU and also during the many hospital stays we have had since then, Ezra has shown us how to keep on keeping on. Nothing seems to get him down and his zest for life is contagious. From the new discoveries he makes every day to the trying times when we are worried about his health, he is right there, sharing with us his world. His happiness is our happiness, his bravery in the face of challenges, is admirable. He fills our hearts with more hope and love that we even know what to do with. All preemies are amazing, but our little guy…well he is our Jedi.

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

He can walk to the kitchen and knock over the trash can in a single bound! Power!

He can melt your heart with a smile! People skills! (or diplomacy according to the Jedi code)

Nothing stops him! No, I am serious, nothing stops him, not a hospital stay, straps on his high chair, his bed railing….DETERMINATION!

What advice do you have for future NICU parents?

If you have other children, make sure to take lots of pictures of your new little one to share with them. We took a pic every day that we visited and the kids looked forward to it. Also if you can’t be there all of the time, it is OKAY. Don’t get too upset over it, they will be home in your arms soon enough, and it will all be a distant memory. Much love.

Adeline the Dragon-slayer

Adeline D ~ Super Hero Alias: Adeline the Dragon-slayer

Adeline DAge: 4 years
Weight at birth: 1lb 8ozs
Weeks gestation: 26 weeks
Time in the NICU: 135 days

Diagnosis, surgeries, complications?

Addie was born unexpectedly at 26 weeks, weighing just 680 grams. She was immediately transferred to our local children’s hospital where she lived for the first 135 days of her life.

She was diagnosed with NEC at 11 days old and had emergency surgery, removing 13 cm of dead bowel and creating two stomas on her tummy. At three weeks old, she had a PDA ligation, where they inserted a small clip in her heart through a tiny incision near her left shoulder. When she was three months old and nearing her due date, she had laser treatment on both eyes due to ROP, permanently eliminating most of her peripheral vision.

As a result of her bowel surgery, Addie struggled to gain weight in the NICU, so we stayed six weeks past her due date to have her ileostomy takedown surgery. She had a fifth surgery to repair an abdominal hernia in the fall of 2010.

Addie was a late crawler, late speaker, late walker (2nd birthday) and received occupational therapy, physical therapy and speech therapy until her 3rd birthday. She has asthma and continues to struggle with weight gain, though you would never know all she’s been through just by looking at her.

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

“And though she be but little, she is fierce.”

–Shakespeare, A Midsummer’s Night Dream

When I was pregnant with our first child–a daughter!–in the spring of 2008, I had lots of sweet dreams about her arrival. We bought tiny pink clothes and created a cozy nursery for her come home to. I read all the books and thought I knew “what to expect” from this little bundle of joy.

And then our lives were turned upside down in an instant…I still remember clearly the moment I realized I was about to give birth 14 weeks too early. I can picture the face of the sweet nurse who firmly told me that my daughter needed me to relax and breath. I can recall, word for word, the exact conversation that the nurses and doctors had while prepping me for surgery–cinnamon rolls for breakfast in the cafeteria.

And then she was born, crying like a newborn kitten with those soft little mews. After being checked over by the neonatologist and his transport team, her plastic isolette was wheeled into my recovery room for a moment before she left in an ambulance, without either of her parents.

For two days, I was kept at my delivery hospital and relied solely on pictures and updates from my husband, parents, and NICU nurses. For a month, I waited to hold her for the first time. For 135 days, I longed to take her home.

Most first-time parents don’t send their child off on their first car ride by themselves when they are hours old, count surgeries before teeth, or speak like they’ve been through years of medical school. Most parents don’t call a nurse every morning to find out how their child did overnight–they tuck their child safely into a bassinet next to them and complain about not getting enough sleep.

Every time I look at an early picture of Adeline or read through my journal, I am blown away by her strength in the midst of such adversity. As she’s grown into a beautiful little girl, I am even more amazed by her kind heart and strong faith. She is a walking One Pound Miracle.

“Most people never meet their hero. I gave birth to mine.”

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

Adeline, our Dragon-Slayer

We have a difficult-to-pronounce, 13-letter last name. When Addie was in the NICU, her OR team called her Adeline “Dragon-Slayer” instead of using our last name (which also starts with a D).

*COURAGEOUS*

Adeline faces every new situation with a strong heart and a smile on her face. Every medical procedure, every blood draw, every therapy session–every time!

*SUPER-HUMAN STRENGTH*

She’s been in gymnastics classes for two months now and she can hang from the high bar and rings for an insane amount of time. I also wouldn’t want to go up against her in a game of tug-of-war!

*A SHARP MIND*

Addie started reading books at the age of 3 after not speaking a word until she was 18 months old. She remembers EVERYTHING we’ve ever told her and even likes to repeat it at the most interesting times. 🙂

*SENSE OF JUSTICE*

Our sweet girl is a people-person. She can read moods exceptionally well and she wants everyone around her to be happy and included.

What advice do you have for future NICU parents?

Do your research. Connect with other parents. Ask questions. Don’t compare your child to others. Disregard timelines. Pray!

Ikey the Invincible & Resilient Reagon

Ikey and Reagon K

Ikey and Reagon K. ~ Super Hero Alias: Ikey the Invincible & Resilient Reagon

Age: 8 years old
Weight at birth: 1 lb, 15 oz each
Weeks gestation: 26 weeks, 5 days
Time in the NICU: 97 and 98 days

Diagnosis, surgeries, complications?

Reagon: Grade 3 bleeds in both sides of brain, PIE, multiple blood transfusions, constant As and Bs, PDA, asthma.

Ikey: mild ROP, bilateral inguinal hernia repair, multiple blood transfusions, constant As and Bs, PDA, asthma.

Why Should Your Children Be Recognized as Preemies of the Year?
These little boys were not supposed to do as well as they have.  I had been in the hospital for the week before they were born being treated with magnesium sulfate to stop the labor.  Contractions subsided, so I was discharged on a Thursday morning.  I went home on strict bedrest (had already been on bed rest since 24 weeks.)  Four hours later, with severe pain, my husband rushed me to the hospital, 10cm on arrival, and within 21 minutes, Ikey and Reagon were born by emergency c-section.  They had an extremely rough start, and several weeks of the unknown.

Here are a couple of things they endured while in the hospital. Doctors had to work to collapse Reagon’s lung to hopefully relieve him of all of the pockets of fluid in it (PIE), at the same time as watching his grade 3 bleeds in his brain.  He endured so many As and Bs in the hospital, that there were not even spots in the chart to record them all.  He was finally discharged from the NICU after three months, only to stop breathing in my arms at home two days later.  He had an undiagnosed UTI and was septic.  He was rushed to Children’s, which was at Brack at the time, and was revived.  He was a very sick little baby. Now, he is a robust 60 pound 8 year old third grader, who plays tennis, baseball, football, and rides his bike to school.

Ikey endured multiple blood transfusions. When we would arrive at the NICU to visit the babies, Ikey would be a dark red color, and we knew he had received more blood that day.  He had many more tranfusions than his brother.  He had minor ROP, and during his last week in the NICU, when he was stable enough, he had bilateral inguinal hernia repair.  He, too, had constant As and Bs during his stay.  Too many to count.  He now is a whopping 55 pound 8 year old third grader.  He is also very active and loves football, baseball and tennis.

When the boys were admitted to the NICU, they were put in the far back corner of bay 6.  They stayed in that spot for two and a half months.  They were never feeders and growers.  They were just trying to breathe.  They are both amazing, smart, humorous, athletic, and just wonderful.  They love to play sports with their big brother Walker, age 9 (35 weeker) and their friends.  They are just a delight to be around.

Why should these little boys be recognized as “Preemies of the Year”?  Well, they are just remarkable little boys who have been through far more than most people will ever go through in their entire lives.  And, thanks to the fantastic doctors and nurses at the Seton NICU, they are here with us today and could not be doing better!

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

Ikey: invincible, adventurous, extraordinary.

Reagon: resilient, courageous, amazing.

Wonder Bella

Isabella D. ~ Super Hero Alias: Wonder Bella

Isabella DAge: 2 years old
Weight at Birth: 1lb 11oz
Weeks Gestation: 24 weeks
Time in the NICU: 99 days

Diagnosis, complications, surgeries?
Mom went into preterm labor unexpectedly. Isabella had many blood transfusions, was on a ventilator for 7 weeks, had a ruptured small intestine requiring a bowel resectioning and later reanastomosis, PDA ligation, and ROP laser surgery. Toward the end of her stay, she had difficulty flushing bilirubin and bladder regurgitation.

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

After a bowel resectioning, PDA ligation, ROP laser surgery, a bowel reanastomosis, and other residual complications, totaling 99 days in the NICU, Isabella came home from the hospital to start her life with her family. Although life was not normal, and to this day isn’t completely normal, she resiliently radiated a personality of determination and fighting spirit. That same spirit has helped her overcome 3 hospitalizations in the PICU for bowel motility and asthma. Our micropreemie has soared through her development and surpassed so many hurdles. She is a blessed child and we are fortunate parents to have a daughter whose life could be drastically different. Many micro-preemies’ physical and mental states turn out completely different all because of the slightest of margins in medical care and preventive care. We are eternally grateful to our NICU family and their team of medical professionals. Although Isabella went through many awful days and nights, after two and a half joyous years of constant smiles and laughs, we continuously reminisce about our family’s NICU experience.

At just shy of 3 years of age and 2 years of a variety of therapy, our little girl who has over come so much in her short life, is doing tremendous feats:
1. Speaking and singing in full legible sentences.
2. Counting to 50.
3. Identifying animals, shapes, colors and recognizing them all by name in English and Spanish.
4. Reading any beginner book you hand her…”Your Baby Can Read” really worked for her.
5. After starting to walk at 19 months and finally climbing steps by 24 months, she is now running, jumping, taking tumbling and dance classes.

Each day she amazes us and lights up our lives. So here’s to you, Wonder Bella…to one spectacular, courageous, determined, independent, loving and miraculous child. WE LOVE YOU!

[Read more…]