Quinn the Unstoppable

Quinn T. ~ Super Hero Alias: Quinn the Unstoppable

Quinn TAge: 2 years old
Weight at birth: 2lbs 9 oz
Weeks gestation: 29 weeks, 2 days
Time in the NICU: 100 days

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

At just 16 weeks gestation we knew Quinn was going to be a super hero in the fight to prove that all preemies no matter how early deserve a fighting chance. She knew her battle would be hard but she also knew she needed to be strong for all preemies. Quinn did not let being a preemie slow her down. She proved the doctors wrong time and time again. When they said she could not be able to do something, she knew her job was to prove them wrong. Quinn should be “Preemie of the Year” because size does not matter. She has shown that you can come back from a very rough start and be okay. Quinn is not perfect in the eyes of the medical world but to her family and twin brother she is a super hero in our eyes. [Read more...]

Share

Owey the Great

Owen R ~ Super Hero Alias: Owey the Great

Owen R

Age: 3 months old
Weight at birth: 4 lbs 10 oz
Weeks gestation: 36 weeks
Time in the NICU: 40 Days in NICU 48 and counting in PICU

Diagnosis, surgeries, complications?

Owen has not been diagnosed yet. All genetic testing has come back negative. Owen is a twin and has cystic kidney disease, crainosynostosis, heart abnormalities, reoccurring aspiration pneumonia and had an emergency trach due to that. He had to get the nissen fundoplication g-tube and has chronic lung disease from that as well, so he is also on oxygen, and has had multiple blood transfusions. Owen has hearing problems, spine abnormalities, and underdeveloped brain tissue. He has upcoming skull surgery and kidney surgery.

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

Owen has been fighting from the beginning and is still fighting every day of his life. I was being monitored from 30 weeks for his low weight and kidney problem. After he was born, it has been an uphill battle, new issues, and infections every day. We have been very close to losing him and it’s heartbreaking to think about those times.  He has been through so much and continues to amaze everyone around him. The will he has is truly humbling. He has blessed our family more than words can explain, he has given us all strength we never thought we had. Owen is such a miracle we can’t wait to get him home to really enjoy his sweet spirit and infectious smile.

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

Owen’s super power of looking deep into your eyes and making your heart melt is one of his strongest. He is hiding away in his lair in the PICU getting stronger so he can do great things. He has hypnotizing powers as well. He has used them on his 2 year old sister to give him her binky and she was more than happy to do so and uses them daily on mommy and daddy to do pretty much anything he wants. Owen also has super healing powers as he has recovered from surgeries and infections better than anyone had expected. Super strength for sure, he fights sedation and the vent every time. Of course he is brave. And we can’t forget he has his twin brother sidekick at home just waiting for his return. He is truly our HERO!

What advice do you have for future NICU parents?

Take one day at a time! Rest and take care of YOURSELF so you can be there for you child. It is OK to miss a day. It can get very overwhelming and some days you just need time away from the hospital. Cherish every moment!

Share

Scrappy Doo

Chiron W

Chiron W

Chiron W ~ Super Hero Alias: Scrappy Doo

Current age: 9.5 months old
Weight at birth: 3 lbs, 1 oz (1402 grams)
Weeks Gestation: 29 weeks, 6 days
NICU stay: 53 days

Diagnosis, surgeries, complications?

Really just prematurity: respiratory support necessary, A&Bs, and nutritional support. A little hyperbilirubinemia and GERD thrown in to be like big brother and that’s pretty much it. His prematurity was a result of the inter-utero death of his twin sister.

Why Should Your Child Be Recognized as Preemies of the Year?
Chiron could serve as Preemie of the Year not due to his uniqueness, but due to his ordinariness.

Chiron was born a day shy of 30 weeks after almost six weeks of preterm labor and hospital bedrest due to the interutero death of his twin sister, Aurelia.

He suffered nothing unique. He didn’t contract any unusual conditions. He simply was born too early and too small.

He received support to eat, to breathe, to regulate his body temperature and to continue to develop. He exists because of the constant vigilance and care of neonatal staff every day, not just in crisis situations.

Chiron is a living model of what we are all seeking to provide for all preemies and thus I believe serves as a powerful model in the role of Preemie of the Year.

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

The main characteristic that qualifies Chiron to serve as a superhero is his scrappiness. He was nicknamed Scrappy Doo by one of his NICU nurses when he was just a couple weeks old because she said he was always stronger than they anticipated. Yes, he was small, but he could do things that the staff weren’t used to babies of his age and size doing. Sometimes this was good, like breathing just fine when his CPAP came off while they waited for a respiratory tech to be free to fix it rather than requiring bagging or anything. Sometimes it was neutral, like requiring three nurses to hold him for a blood draw while he weighed under four pounds. Sometimes it was negative (from the perspective of a nurse), like when he required nine NG tubes to be placed in the course of one day despite only having eight feeds a day!

Chiron remains scrappy to the day. He has severe reflux and allergic enterocolitis and so still weighs under 15 pounds. Yet, he can require multiple people to hold him down for bloodwork or to place an IV. Yet, he can stand supported by a chair. He is small, but he is scrappy.

I believe it is the superhero way to take something that might be viewed as a weakness, small size, and instead turn it into a strength.

Resilience is the second characteristic that I think supports the designation of Chiron as a superhero. Whether it’s his happy demeanor in dealing with vomiting a couple dozen times a day, adjusting to a NICU nurse changing multiple things in his usual operating procedures at the same time or continuing on as an active, playful boy despite critically low levels of iron, Chiron refuses to succumb to anything we have seen thus far. This ability is perhaps what is necessary to take one from hero to superhero.

Finally, Chiron has the characteristic of a superhero in that he has a sidekick. His older brother has been devoted to him from the day he was born, gently touching the top of Chiron’s head exactly as he was instructed, throughout his entire time in the NICU, at home and later hospital stays. And true to a sidekick relationship, Chiron has reciprocated the relationship with his big brother being the cause of his first smile, his first laugh and his first giggling episode. He derives strength and desire to stretch his limits and do new things to be closer to and more like his brother.

Scrappy Doo he is.

What advice do you have for future NICU parents?

Ask questions, learn and really work to develop autonomy and comfort.

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?

The feeling of not being alone.

Share

Half Baked Alaska

Elena R. ~ Super Hero Alias: Half Baked Alaska

Elena RAge: 16 months
Weight at birth: 1 lb, 2 oz
Weeks gestation: 23 weeks
Time in the NICU: 116 days

Diagnosis, surgeries, complications?

Chronic lung disease, ROP (requiring laser eye surgery), hernias (requiring surgery)

Why Should Your Child Be Recognized as Preemie of the Year?
Elena is the Preemie of the Year because of how far she come.  With her guardian angel (her identical twin sister, Sonja) looking over her from above, Elena progress, to quote her pediatrician, has been “pretty fricken awesome.”  She was able to leave the NICU before her due date and was off of oxygen within a month of coming home and all monitors within a month after that.  Elena is also already a rock star — appearing in print (in a poster and pamphlet championing the benefits of kangaroo care), video (a training video for standing transfers), and on the radio (during a radiothon supporting the NICU).  And despite her superstar status, Elena remains down to earth — always quick with a smile and willing to give a hug to anyone in need.  Elena will always be my hero and my “Preemie of the Year.”

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

Despite being born at a mere 1 lb. 2 oz., at just 16 months (12 adjusted) Elena is now “faster than a speeding bullet(in), more powerful than a (toy) locomotive, and able to leap tall buildings (blocks) in a single bound.”  But, in all seriousness, Elena is the bravest and strongest person I have ever met — she bounced back quickly from both eye and hernia surgeries.  She fought all the odds — just surviving was 50/50 at first, she beat that and most of the other likely complications (brain bleeds, PDA surgery, etc.)  However, I think Elena’s greatest superior hero characteristic is her mastery of disguising that she is a Super Hero.  Much like no one would guess the mild-mannered Clark Kent was Super Man, unless you know Elena’s history, when you first meet her she comes across as a mild-mannered, loving, “normal” 12 month old.  Again, like Clark, only those that know her best, or need her help (though her inspiring story), learn of her true identity.

What advice do you have for future NICU parents?

Get involved, don’t be afraid to ask questions, and lean on your support network of family, friends, and faith community.  Miracles do happen.

Share

Charismatic Kate

Kate H. ~ Super Hero Alias: Charismatic Kate

Kate HAge: 4 years
Weight at Birth: 2lbs 1oz
Weeks Gestation: 25 wks, 6 days
Time in the NICU: 59 days

Diagnosis, complications, surgeries?

Multiple blood transfusions, Apnea of prematurity, Bradycardia, PICC line, Reflux, first head scan came back abnormal (second was fine).

Charismatic Kate has defied odds, done it with flair, and taught so many friends & family what can truly be achieved through faith.

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

We had never heard (much less known) of anyone giving birth to a baby at 25 weeks gestation but we didn’t tell Kate that. She was delivered without a c-section and needed no resuscitation at birth. She entered the world screaming like Joan Jett and rocked her perfect little 2 pound physique with beautiful dark hair and long, tiny fingernails that could already use their first mani.

As she rolled off to the NICU, we were confident that she had beat the worst case scenario: death. But would she also escape deafness, mental retardation and the other possible scenarios we had read about?

When the head scan, hearing, vision tests all came back normal, she took on villains like anemia, apnea, bradycardia, and reflux.

She formed a Justice League with Nurse Bob and Nurse Linda. She charmed them by accomplishing impossible feats like waiting til their back was turned and moving to the complete opposite side of the isolette when there’s no way her muscles could do that yet!

Unbeknownst to us (her nervous/hypervigilant parents), her justice league saw something special in her and started pushing her ahead of schedule to accomplish the goals necessary to finally come home.

They gave her a chance to sprint on the cannula and she did it! They let her wear clothes weeks early & she regulated her own temperature! They fed her a bottle and she gulped it right down!

Kate and her Justice League converted her October 6th graduation into an August 26th graduation!!!

She had defied the odds and our prayers had all been answered. Thank you, Kate, for your tenacity! Thank you, God, for all of your blessings! And thank you Justice League for your wisdom & strength!

[Read more...]

Share

Amazing Alanna

Alanna W. ~ Super Hero Alias: Amazing Alanna

Alanna WAge: 4.5 months
Weight at Birth: 4lbs 3oz
Weeks Gestation: 33 weeks
Time in the NICU: 83 days

Diagnosis, complications, surgeries?
Prematurity, multiple birth, necrotizing enterocolitis (NEC), sepsis

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

Alanna and her twin brother Carson were born by C-section at 33wks gestation. They were born at Brackenridge Hospital, and spent a week in the NICU there. After 5 days, they were diagnosed with necrotizing enterocolitis (NEC), where part of the intestines start to die off. Carson got better with bowel rest and antibiotics; Alanna did not. At seven days old Alanna had to be rushed to Dell Children’s Hospital for emergency surgery due to a perforated intestine and sepsis. The survival rate for this surgery is very low. When she came out of surgery, she was a very sick little girl, and spent several days on a ventilator because she was so heavily medicated to keep her from being in pain. It took several weeks of very strong antibiotics to get the infection under control. She went through so many IV lines as they tried to maintain the flow of the various drugs that were keeping her alive. The nurses even had to shave off all of her hair so they could use the veins on her head for IVs. As she got well enough to eat again, we discovered her dislike of anything but donor breastmilk. Her little tummy barely tolerated formula, and it was a struggle to find one it didn’t completely reject. She kept the nurses hopping through all of this. She was very quick to voice her opinion when she disliked the situation. When I would come to visit her, I would always have to hunt her down, because she was being carried all over the unit by the nurses and CAs. When she was just over two months old, she had another surgery to repair the ileostomy she had gotten during the first surgery. She took another week to heal after this major surgery, and during her recovery had several rough patches, including going into respiratory arrest, and having to be put back on the ventilator. She finally got to come home after 83 days in the NICU.

[Read more...]

Share

Smily Lorenza

Lorenza P. ~ Super Hero Alias: Smily Lorenza

Lorenza P

Lorenza P

Age: 6 years old
Weight at Birth: 2lbs 14oz
Weeks Gestation: 28 weeks
Time in the NICU: 46 days

Diagnosis, complications, surgeries?
ROP, brain bleed level 2, oxygen dependent until 6 months.  Left side weakness…

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

Lorenza was brought to us by her angel twin brother Jacobe four days after their birth. We were searching for a child to love and had our papers ready to adopt a special child/children.  Jacobe hung out on this earth for four days until the right parents were found.  On the national day of love (Feb. 14th), we were called. He gave his sister a kiss (white patch on her left shoulder) and he flew back to heaven.  Lorenza was a fighter from the start. She did and continues to do things in her own time with a determination that would beat most normal mere mortals.  She has the power to make you smile on the dreariest of days and energy that expounds to everyone that meets her.  She is a miracle like so many preemie children, but she just has that one “special” spark.

[Read more...]

Share

Boogie

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

Blake R. ~ Super Hero Alias: Boogie

Blake RAge: 21 months
Weight at Birth: 1 pounds 3 ounces
Weeks Gestation: 24 weeks
Time in the NICU: 122 days

Diagnosis, complications, surgeries?
Low Birth Weight, PDA (surgery), Pulmonary Hemmorhage, Chronic Lung Disease, ROP (RUSH disease), numerous blood transfusions

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

My preemie is a true hero. From the first few minutes of his life, he fought numerous odds. For such a tiny guy, his will and strength is truly amazing. Incredibly, he made it through a pulmonary hemorrhage at 36 hours of life. As his body struggled to survive with organs that were underdeveloped, he slowly but surely grew stronger each day. He later underwent PDA surgery. He also underwent an emergency laser eye surgery to help save his vision. He faced many challanges but continued to exceed expectations and statistics. He showed us strength on days that his father and I were weak. Even 21 months later, he is still amazing us with his strong will and huge heart. [Read more...]

Share

Super Wy

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

Wyatt G. ~ Super Hero Alias: Super Wy

Wyatt GAge: 14 months
Weight at Birth: 6 pounds 6 ounces
Weeks Gestation: 36 weeks, 3 days
Time in the NICU: 12 days

Diagnosis, complications, surgeries?
Respiratory Distress Syndrome, pulmonary hypertension

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

Wyatt and his twin, Mason, were born prematurely. We knew Wyatt was big for a twin of his gestational age and once I passed 36 weeks my doctor indicated that the babies probably would not have any serious health problems. Unfortunately Wyatt turned blue just a few minutes after he was born and was struggling to breathe on his own. He was moved to the NICU and put on oxygen. It was determined that his lung development was immature and he was diagnosed with Respiratory Distress Syndrome. The doctors were troubled when he had not made any improvement after three days, which is typically when RDS babies have turned the corner. They indicated that there might be something more serious going on, but everything seemed to check out and we just had to wait for him to get better. He was such a strong little guy and he fought so hard and after six days in the NICU on oxygen he finally started to improve. He was a very feisty baby and he had a reputation with the NICU nurses for pulling off his canula and pulling out his OG/NG tube and IVs! We were so excited when he finally began to wean off of the oxygen after about 10 days and after 12 days he was ready to come home to us. Wyatt really struggled with gross motor delays for the first 8 months of his life. He started occupational therapy when he still wasn’t sitting at all, even tripod sitting, at 7 months old. We worked diligently on his exercises and after 6 weeks he was able to sit on his own. He has been such a little fighter and so strong and now at 14 months he is completely caught up on gross motor, walking all over the place with his brothers. We are so proud of what a strong fighter and hard worker our little Wyatt is.
[Read more...]

Share

Speedy Stella

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

Stella W. ~ Super Hero Alias: Speedy Stella

Stella WAge: 11 months
Weight at Birth: unknown
Weeks Gestation: 31 weeks
Time in the NICU: 23 days

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

Stella was born very small and early.  From the moment she was born, she was eager to see the world and impress the staff of the NICU with her fast progress.  Our pediatrician has told us that Stella never got the memo that she was a preemie.  Her growth and eagerness to thrive have sent her off the charts!  Nothing slows Stella down! [Read more...]

Share

Site last updated May 20, 2013 @ 11:26 am