Amazing Alexis

AlexisAge: 2 years
Weight at Birth: 1lb 6ozs
Weeks Gestation: 27 weeks
Time in the NICU: 124 days

My Preemie Power Story:

Our Superhero is named Alexis Hope. In true superhero fashion, she has never backed down from a challenge or given in when odds were stacked against her. At 20 weeks into our pregnancy, we were informed that Alexis was not getting enough oxygen and nutrients. Doctors cautioned that her chances of survival were slim. The issue was further complicated by Alexis’ twin brother, who was healthy and thriving. Our decision to deliver the twins at 27 weeks was heartbreaking, as we were uncertain Alexis could survive in her fragile state and were devastated by the potential danger we were be putting her brother in.

Luckily for us, we were the parents of a full-blown superhero. Born at only 1lb 6ozs, Alexis had a long struggle through her first years. Our stay in the NICU was an excruciating 124 days long. While her twin brother seemed to thrive from the start, Alexis’ battle was hard; spending months on a ventilator, facing numerous infection scares, enduring transfusion after transfusion, and having countless feeding issues. Even once welcomed home, she remained hooked up to monitors, oxygen support, and a feeding pump. Her first year was spent visiting specialists and receiving round the clock care. Every gram gained was celebrated and every one lost was grieved. But throughout all of her battles she remained resilient and the source of our strength. Her smiles lighten a room and her boisterous laugh could melt even the toughest exteriors. While typically children learn from their parents, it was clear that we were the ones learning valuable lessons from her. In time, Alexis got stronger and by her second birthday started walking! Today, she is unstoppable. She is still extremely tiny but not to be underestimated. In fact, her size is one of her most valuable secret weapons!

As is the case for every notable Superhero, Alexis has proven to be a tenacious fighter; never to be underestimated. The experts cautioned not have too much hope. Immediately upon getting her prognosis we responded with selecting her middle name: Hope. And she has not disappointed, as we watched her beat the odds time and time and time again. For 2 years, Alexis has taken her own path at her own speed and laughed in the face of predictions. While the journey was long and the ride scary, she is absolutely our hero.

Super hero characteristics:

Tenacious Fighter: Even now you can see Alexis is not your average 2 year old. A micro preemie given those odds simply cannot be. She can be strong-willed, tenacious, stubborn, and fiery but beyond all of the adjectives; she is amazing and inspiring.

Unpredictable: Just when you think our superhero is down and out…KA POW…she rallies to win the fight.

Super Speed: Now that Alexis has started taking her first steps, she is making up for lost time and getting into EVERYTHING and getting there at super human speed. There is no holding her back now!

Smiley Gayily

Avigayil

Age: 6 months
Weight at Birth: 1.6 kilos
Weeks Gestation: 33
Time spent in the NICU: 101 days

My Preemie Power Story:
At 23 weeks the doctors thought I was about to give birth, but after a high risk pregnancy that included surgery and months of hospitalization, Avigayil hung in for an amazing 10 more weeks and was born by c-section at 33 weeks. Right from the start there were surprises. She had IUGR and severe RDS. She was not breathing at birth and it took a few hours for the doctors to stabilize her. During her NICU stay she was diagnosed with severe BPD, GERD, Pulmonary Hypertension, Osteoporosis, FTT and anemia, among a host of other more common preemie problems. She had 3 blood transfusions, was on nitric oxide for 2 weeks and was intubated for 3 weeks.

From the beginning our little red head was a fighter. While sedated on morphine she none the less managed to extubate herself 3 times. Even though she was and still is confronting challenges that no one expected, she is a very happy and social baby.

While in the NICU became the first preemie to use a newly approved machine that would allow her to go home on Vapotherm. It is now in use in the NICU and at homes here in Israel. She is honored to be part of such an amazing breakthrough for preemies and their parents.

Now at 6 months of age she is home and on oxygen and a monitor 24 hours a day. She has an NG tube for feeds with a kangaroo pump and inhalations every 4 hours.

Despite her hard life so far and having to fight for every breath, Avigayil treats every person who comes near to a giant smile with her generally sunny disposition. She loves people and makes friends wherever she goes.

We hope that she keeps that love of people and love of life with her always as she teaches us every day just how valuable life can be.

Super Hero Characteristics:

Avigayil can fly into the hearts of every one around her faster than a speeding bullet. With the incredible ability to charm anyone she can even make the most serious and experienced doctors and nurses smile and coo.

She has amazing agility seen in her talent of being able to remove any tube or cord placed on/in her within 5 minutes, even under sedation!

Mind Control! She brightens peoples day and has touched the lives of people she has never even met as they keep up with her story online.

She goes on every day with her super strength and determination. It is that quality that is helping her parents and 4 brothers and sisters to make it through each day.

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!!!

The DOMinator

DominicAge: 6 months
Weight at Birth: 1lb 13 ozs
Weeks Gestation: 28
Time spent in the NICU: 91 days

My Preemie Power Story:

I had chronic high blood pressure and an incompetent cervix held up by a cerclage. The doctor always had a difficult time performing the ultrasounds because Dominic wouldn’t stay still. He was already playing hide-and-go-seek. But I loved it! Dominic was telling me he was okay. Medication was no longer helping. The doctor gave me the weekend to get my stuff together before “turning myself in.” I was put on bed rest and constant monitoring, at The Woman’s Hospital of Texas in Houston.

The first time Dominic’s heart rate dropped, frantic nurses came in, flipped me to the side and put the oxygen mask on me. I was given Magnesium and Celeston. Then he would stabilize. This happened three times. It was a rollercoaster of emotions worrying about Dominic’s survival inside or outside of the womb. But he still kicked like crazy, telling me I’m ready to play.” The nurses were constantly in my room adjusting the belts to keep him monitored. My husband was so proud of his misbehavior.

The Doctor detected breathing-movement. She also saw Reverse-End Diastolic Flow and Dominic wasn’t growing. [Read more…]

The Feisty Peanut

AbigailAge: 22 months
Weight at Birth: 3 lbs 10 oz
Weeks Gestation: 33
Time spent in the NICU: 36 days

My Preemie Power Story:

Our little super hero came in to the world at 33 weeks 3 days when my body started failing due to HELLP Syndrome and severe preeclampsia. I went to the ER, at 33 weeks, with severe back pain. I thought I was just dehydrated, but after being transferred by ambulance to a hospital that was more prepared for preemies, we found out that I had HELLP Syndrome. The pain I was feeling was my liver swelling and my kidneys were not functioning well.

Abigail fought hard, and thanks to her many many prayer warriors, she was able to stay in me three more days while she got two rounds of steroids to help her lungs. On the third day they decided it wouldn’t be safe to wait any longer and they took us in for the c-section. [Read more…]

Super Beauties

Skye & LaceyAge: 11 months
Weight at Birth: 3lb 7oz and 3lb 5oz
Weeks Gestation: 34
Time spent in the NICU: skye 3 weeks, lacey 6 weeks

My Preemie Power Story: 

Delivered by planned emergency c section at 34 weeks, the Super Beauties had to have regular scans from 25 weeks due to IUGR and low fluid had to have steroid injections three or four times. They made it to 34 weeks then they were delivered. Skye did well, but Lacey got NEC at two days and was transferred to a different hospital. So I had one twin in one hospital and one in another. Lacey was very ill but she got better and she came home just before xmas to be back with her sister at home. Now they are the most gorgeous little happy girls anyone could wish for 🙂 Skye is now 17lb6 and Lacey is 16lb15. They have come so far.

Super Hero Characteristics:

Determined , beautiful and clever

Surprise Miracle Aimee

AimeeAge: 13 months
Weight at Birth: 2lbs 2 oz, 960g
Weeks Gestation: 29+5
Time spent in the NICU: 62 days total between 2 hospitals

My Preemie Power Story:

We only found out that I was pregnant at 22 weeks, and didn’t know I was that far along until I went for an ultrasound at 24 weeks. We were very surprised, but baby seemed to be doing good and weighed 1 pound 6 ounces on the ultrasound. The next 4 weeks, I finished up college and was starting to prepare for baby’s arrival. When I was 28 weeks pregnant, we were in a car accident where I was brought to the hospital to check on the baby. I was told I had to stay for 4 hours to make sure everything was fine. The baby was doing great, but they took blood work and discovered I had pre-eclampsia (and possible hellp syndrome). My blood pressure was very high. They informed me that they were going to be sending me to a hospital with a NICU and gave me my first dose of steroids. I was told they were going to try and push it 48 hours to let the steroids work, but they weren’t sure that would be possible.

A very long and stressful 8 days later, they were doing an ultrasound and found out I also had placental abruption. My daughter was born by emergency c-section 2 days later weighing only 2 pounds 2 ounces. She was IUGR. We got to see her for a minute before they took her away to the NICU. I wasn’t allowed out of bed to see her until the next day due to the magnesium they were giving me through my IV. When she was 24 hours old, I finally got to see her. She was gorgeous, but very tiny. I put my hand in the isolette, and she grabbed it almost immediately. She was doing great, but was on CPAP. The nurse said she liked the little “puff” of air. She was on CPAP for 3 weeks, mostly on room air. She spent 26 days in the NICU and then got transferred to the special care nursery at my local hospital. The level 2 nursery was full and they needed the room in level 3.

She spent another 36 days there where she learned to eat and grow. She came home 10 days before my due date weighing 5 pounds 3 ounces.

Aimee has an atrial septal defect (ASD). She has had many cardiology appointments, and we finally do not have to go back until she is 3 unless she starts to have problems.

She had low sodium for the first 6-7 months of her life. She had 3x daily sodium supplements and bi-weekly blood sodium checks.

At 13 months old, she is still small for her age but she is doing great. She’s 18 pounds and 28 inches long.

This is Aimee’s blog. http://aimeeelizabethbourre.blogspot.ca/

Super Hero Characteristics:

Determined – She is determined to not let her prematurity hold her back. She tries so hard to keep up with full term babies her age.

Strength – Aimee has proven to be very strong. She has been through a lot and is still a very happy little girl.

Intelligent – She is a very smart little girl. She learns fast and loves to learn new words.

Ari-tron

Ari ~ Super Hero Alias: Ari-Tron

AriAge: 9 months
Weight at Birth: 1 lb 2 oz
Weeks Gestation: 28
Time spent in the NICU: 4 months 27 days

My Preemie Story:

Ari-tron was born December 26, 2012! He was born 1 lb 2 oz and 10 1/2 inches! Never in our lives had we seen something so magnificent but yet so frail. We knew from early on that we had a long road ahead of us, but we were so excited to walk that road with him.

We were told at our 18 week appointment that most likely he had Spina Bifida as well as bilateral clubbed feet and that we had the choice to terminate the pregnancy. This was not an option for our family. Not knowing anything about Spina Bifida we were beyond scared. We decided to get a 2nd opinion. Our next Dr. more professionally confirmed that yes it was a neural tube defect most likely in the S1 location. But more importantly he pointed out that Ari was a small baby. We now learned that he was an IUGR kiddo.

We made it 28 weeks and then had an emergency c-section. Ari measured about a 24 week old baby. [Read more…]

Super Peanut

Brantley ~ Super Hero Alias: Super Peanut

BrantleyAge: 6 months
Weight at birth: 1 lb 11 ozs
Weeks gestation: 26 weeks
Time in the NICU: 70 days

Diagnosis, surgeries, complications?

IUGR, Micropreemie, Sandifer’s Syndrome, ROP, PDA

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

My son is my super hero. He has taught me that miracles do happen, to be patient, to be hopeful and to have faith in the small things.

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

Strong, fighter and miracle

What advice do you have for future NICU parents?

Ask lots of questions, be there every day, take part in caring for your baby, do research, every little thing matters, be patient, and ride the roller coaster… 3 steps forward, 1 step back.

Peanut & Butter to the Rescue!!!

Berlyn and Madisyn K. ~ Super Hero Alias: Peanut & Butter to the Rescue!!!

Berlyn and Madisyn K.Age: 3 years
Weight at birth: 3 lb 1 ozs and   1 lb 10 ozs
Weeks gestation: 30 weeks
Time in the NICU: 45 and 58 days

Diagnosis, surgeries, complications?

IUGR and Reverse-end diastolic flow in twin B resulted in delivery, transfusions, PDA, PFO, TPN, failure to thrive,vent, A&Bs, coombs positive, jaundice, Brain bleed grade I, Ng tubes

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

From the beginning of time super heroes have roamed the earth in secrecy. Saving lives without asking for anything in return.  Peanut and Butter came to the rescue in a desperate time of need.  When their parents had almost given up hope of ever holding their own children in their arms, they came and saved them. They surmounted all odds, growing in treacherous conditions to bring this couple happiness. We need to thank these heroes for saving this couple from such an empty life. And for bringing joy to all those in contact with them.

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

A hero is an ordinary person who does extraordinary things. From the beginning Berlyn & Madisyn have been EXTRAORDINARY. They started off in a petri dish, where they outgrew 12 other cells before making their way to the womb (IVF). At 23 weeks Madisyn was diagnosed with IUGR. She wasn’t receiving the nutrients she needed and was a month behind in growth. The pressure in her umbilical cord was too high. She was DETERMINED to survive past the 26 weeks doctors hoped for. Her PERSEVERENCE got her and her sister to 30 wks. Berlyn SACRIFICED a full term pregnancy so that Madisyn had a chance to live. She could have made it to 40 wks if her sister had died. They exhibited FORTITUDE through their 6 and 8 week stays in the NICU away from their Mommy and Daddy. They ENDURED the poking, prodding, and all the other things associated with being premature. Three years after their birth story they still exhibit these characteristics. When Madisyn cries, Berlyn SELFLESSLY gives her “Teddy” to make Madisyn feel better. They always make sure the other is not forgotten about. “Where is sister’s cracker” or “Sister wants the blue crayon.” When we are out, Madisyn is always ready to spreads the love.  She tells the cashier “love you” or they give a random lady at the store a hug. With their big smiles and bright eyes, they always know how to brighten your day. These girls are extraordinary in every way! They are my HEROES!

Site last updated May 23, 2017 @ 3:00 pm