Warrior Princess

GiaAge: 2
Weight at Birth: 1 pound 2 ounces
Weeks Gestation: 24
Time spent in the NICU: 111

My Preemie Power Story:

Our story begins on April 17, 2012. I was admitted to the hospital on complete bed rest due to Premature Rupture Of Membranes (PROM) at 23 weeks gestation. I was given 3 dosages of steroids just in case she decided to come early. Well, 8 days later, she did! I was rushed into the OR for an Emergency C-Section due to a Prolapsed Umbilical Cord. There are no words to describe how I felt when I was told my baby had a 35 percent chance of survival. Every time a doctor walked into my room, my heart would drop to the floor. The moment I saw my daughter, I just cried. She looked so helpless. I was overwhelmed by breathing machines, tubes, wires, IVS, the fact that I could see right through her skin and consent forms for blood transfusions. I quickly became very familiar with the words “Bradycardia” and “Apnea”, which is a nightmare to witness. The first time she was taken off the ventilator and put on oxygen didn’t go so well. She was getting too tired and was put back on the vent for a few days. The second time was perfect! On July 19, 2012, she was taken off oxygen and did excellent! She was fed every 3 hours through an NG tube until she slowly learned how to bottle feed. Reflux was a major issue. She was prescribed to Prevacid and Zantac. On August, 14, 2012, she was discharged from NICU. Unfortunately, she was admitted into PICU the next day because she refused to drink all together. We found out she had a UTI and was put on antibiotics through IVS for 7 days. The bottle feeding and reflux was getting worse, so the GI doctor decided to mix her formula with Gelmix. It helped! Two weeks later, we were talking about discharge, but of course that was delayed due to blood in her stool. X-rays, ultrasounds and cultures determined it wasn’t NEC or Intussusception. The doctor then decided to do a colonoscopy and endoscopy, but first she had to have a Frozen Plasma Transfusion because her blood wasn’t clotting and Vitamin K wasn’t working. The end results turned out to be an allergic reaction to the Gelmix. The GI doctor then suggested a Nissan Fundoplication and G-Tube to be the next best option. On October 6, 2012, she went in for a 4 hour surgery in which she also had 2 hemangiomas removed. Those were the longest 4 hours of my life. She remained in PICU and Peds until November 5, 2012. Although we have still hit some bumps in the road and she still has her G-Tube, I’m thrilled to say that Gia is a happy, healthy and very intelligent 2-1/2 year old. I love her with all my heart and soul and I thank God everyday for showing me that miracles can happen!

Super Hero Characteristics:

Gia is strong, intelligent and courageous

Jonny McDash

JonathanAge: 2
Weight at Birth: 1 lb 5 oz (600 grams)
Weeks Gestation: 23
Time spent in the NICU: 150 days

My Preemie Power Story:

Jonny is fast. As soon as he could stand, he walked. And as soon as he could walk, he ran. This speed is his greatest strength, and his greatest weakness.

Half-way through his gestation, he thought he was ready to fight supervillains. His sisters pleaded for him to stay put. “No-no-no, baby, don’t come out!” His mother told him it wasn’t time. But there was no slowing down McDash. He burst his bubble and made his escape. A superhero was born.

Jonny’s first stop was the Neonatal Incredible Kid University, or “Niku,” a school for super-kids like him. He learned to do normal baby things like unfuse his eyes and hold his heat. He trained to enter the world as his mild-mannered alter-ego. But even in Niku he was not safe .

Episode1: McDash vs. The Potent Deceptive Alternate (PDA) & Necros Ever Crank (NEC)

Knowing that Jonny McDash would become a formidable enemy, the League of Supervillains (LoS) infiltrated Niku. They whispered to McDash to keep a heart duct open. An open duct would make him faster, they lied. He was still young, so their deception worked. His body slowed. A team of superheroes, “The Doctors” gave him an antidote to close the open duct. LoS heard of this. Upset that their deception had been thwarted, they sent Potent Deceptive Alternate (PDA) to open the duct again. “Surge,” the superhero in scrubs, defeated PDA with two staples and a scalpel. Brilliant! But without wasting any time, the LoS attacked again. This time they sent Necros Ever Crank (NEC) against Jonny’s intestines, the source of his energy and strength. Over a half a foot of intestines died. But once more, Surge came to the rescue, discovering the stealthy villain and sending her packing.

Episode 2: McDash vs. the Rush Reserve Operative (ROP)

Having failed to eliminate Jonny McDash, the enemies sought to neutralize him by taking away his eyesight. To catch the speedy hero, they sent in their fastest Reserve Operative (ROP) – Rush ROP. Armed with an impenetrable protein cloud, Rush ROP attacked McDash’s eyes, threatening to tear them apart from the inside. The operative got more than he bargained for, however, since Jonny and the Doctors were ready with their laser cloud piercer, turning back Rush ROP in record time.

Episode 3: McDash strikes out on his own
The Supervillains kept trying, but McDash had grown strong enough to defeat them easily. Desat, Apnea, and Brady often attacked together. Kidney killer threw him into renal failure more than once, and Anemia showed up again and again. But each time, Jonny McDash and his team of teachers (wearing badges like “RT,” “RN,” “NP,” “OT,” and “PT”) and The Doctors warded them off. When ready, McDash passed his graduation exam (known in-house as the “carseat test”), with flying colors. He was ready for the world!

Next Time on McDash: LoS unleash a top secret project, code-named “Failure to Thrive,” and Dr. Nephros delivers McDash from Acidosis Monster. McDash triumphs again!

Super Hero Characteristics

Primary Superpowers:

Speed, quickness, and super-fastness. Also good at being early and fighting supervillians

Chubchub

JenniAge: 15 months
Weight at Birth: 1lb 14oz
Weeks Gestation: 26/5
Time spent in the NICU: 103 days

My Preemie Power Story: 

At 24 weeks my bag of water started bulging. I was placed on bedrest and delivered at 26/5 weeks.  Jenni was the sicker out of the twins.  Jenni had issues with respiratory.  She didn’t tolerate being held and could only handle about 5 mins.  She also had feeding intolerance.  There were times where she was placed on continued feeds.  Her doc also warned that she might be a reflux baby.  Jenni finally got off oxygen in early September.  At first they were talking about releasing the twins together but the night before she had a brady.

Littlebit, her twin, came home and Jenni continued to have bradys.  Doc talked about releasing her on an apnea monitor and I was very nervous because they still didn’t have a diagnosis of why she continued to have them.  About a month into her stay without her sister, she had a major brady about 15 mins after her feed requiring resuscitation. Finally they did a barium swallow confirming mod/sev reflux.  She was also on a fluid limit of 75 mls.  Doc changed her formula to enfamil ar and also no more breastmilk. I was heartbroken because she was actually latching and nursing well.

Jenni finally got fitted for an apnea monitor and came home 2 weeks later.  We did have an episode at home but it was a heart rate dip because she had a fever.  I also invested in a rock and play for her.  You would never know that she is a preemie.  At her 12 mth checkup she is above average for both weight and height.  She is 30+ inches and as of Oct, she weights 24 lbs and 10 ozs.  She is my miracle baby.

Super Hero Characteristics:

Tuff little fighter

Terrific Tommy

TommyAge: 6 months
Weight at Birth: 4 Pounds 8 Ounces
Weeks Gestation: 30 weeks 5 days
Time spent in the NICU: 38 days

My Preemie Power Story:

On Sunday March 24th my seemingly uneventful and perfectly normal pregnancy came to a screeching halt. I woke up feeling very strange that morning and by the afternoon I was sure that my water had broken. I was only 30 weeks. As this was Sunday I couldn’t call my doctor so I opted to call the hospital instead. They told me I was fine, to rest, and that I didn’t need to come in. A half hour later we were on our way to the hospital because I was sure that this wasn’t normal. Once we arrived the staff confirmed that my water had indeed broken and they administered antibiotics, magnesium and a shot of steroids. 24 hours later I was given another shot of steroids and taken off magnesium and antibiotics. 3 hours later I was dilated to 10 and in full blown labor. I hadn’t even had my baby shower yet!

Just before midnight, March 25, 2013 Thomas made his expedited arrival. The doctors had prepared us earlier in the day that the baby may not cry when he was first born…happy to say the doctors were mistaken and Tommy announced himself quite loudly. [Read more…]

Jake the Great

Jake ~ Super Hero Alias: Jake the Great

JakeAge: 9 months
Weight at birth: 2 lb 6 ozs
Weeks gestation: 28 weeks
Time in the NICU: 59 days

Diagnosis, complications, surgeries? 

Apnea, Bradycardia, Acid Reflux, Anemia

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

To us Jake IS the Preemie Of The Year!! Jake gave his Mom every sign that he possibly could to let her know that he wanted OUT! Mom had no idea her placenta was failing until Jake decided to be still for hours at a time. Born at 28 weeks and 1 day (2lbs 6oz 14 inches), Jake was born breathing on his own and fighting! After loads of caffeine, one blood transfusion, a few Bradycardias, mild Sleep Apnea, prayer, blood, sweat, tears and a huge weight gain; he was discharged with a monitor and a script for Zantac! Jake is now 9 months 19lbs 8oz and 27 inches! Thank You Lord for this modern day Miracle! His name is Jake and I’m sure he approves this message 🙂

[Read more…]

MicroMiracles

Addison & Salvatore ~ Super Hero Alias: MicroMiracles

Addison & SalvatoreAge: 2 years
Weight at birth: Addison 2lbs 4oz / Salvatore 1lb 12oz
Weeks gestation: 29 weeks
Time in the NICU: Addison 58 days / Salvatore 82 days

Diagnosis, complications, surgeries? 

Before reaching 4lbs, the twins had suffered through multiple blood transfusions, jaundice, oxygen desaturation, apneas, bradycardias, collapsed lungs, sepsis, spinal taps, surgeries, staph infections, and quarantines.

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

My twins are my heroes. They have endured more in their short 2 years than most adults have been through in their entire life. They are the strongest people I know, and I have learned so much from watching them. They truly are my “miracles”.

[Read more…]

Gia The Warrior Princess

Gia G. ~ Super Hero Alias: Gia the Warrior Princess

Gia GAge: 6 months
Weight at birth: 1 lb 2 ozs
Weeks gestation: 24 weeks
Time in the NICU: 111 days

Diagnosis, surgeries, complications?

Colonoscopy, Endoscopy, Nissen Fundoplication, G Tube, Removal of two hemangiomas, Endoscopic Balloon Dilation

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

On April 17, 2012 I was admitted to the hospital on complete bed rest due to Premature Rupture of Membranes. The next week, I had an Emergency C-Section due to a Prolapsed Cord. There are NO WORDS to describe how I felt when I was told my baby had a 50/50 chance of survival. When I first saw Gia, I cried. She looked so helpless. I was overwhelmed by breathing machines, tubes, wires, IV’S, the fact that I could see right through her skin, and consent forms for blood transfusions (which she had several of). I quickly became familiar with the words “Bradycardia and Apnea”, which is a nightmare to witness, especially when the baby needs stimulation. The first time she was taken off the ventilator and put on oxygen didn’t go so well. She was getting too tired and was put back on the vent for a few days. The second time was perfect! Everyone thought she was going home on oxygen, but of course she had to prove everyone wrong! On July 19, 2012 she was taken off oxygen and did excellent! She was fed every 3 hours through an NG tube until she slowly learned how to bottle feed. Reflux was a major issue. Prevacid and Zantac was prescribed. On August 14, 2012 (two days after my due date) she was discharged from NICU. As soon as we got home, she went from drinking 60ccs to drinking only 20ccs and sometimes nothing at all. The next day she was admitted into PICU. She had a UTI and was put on antibiotics through IV’S for 7 days. She wasn’t bottle feeding as well, so speech therapists continued working with her. The reflux was getting worse, so the GI doctor recommended Gelmix. It helped! Two weeks later, we were talking about discharge, but that was delayed due to blood in her stool. X-rays and ultra sounds determined that it wasn’t NEC or Intussusception. Cultures came back negative. The doctor then decided to do a colonoscopy and endoscopy, but first she had to have a Frozen Plasma Transfusion because her blood wasn’t clotting and Vitamin K wasn’t working. Results of tests showed an allergic reaction. It was the Gelmix. Rice was recommended as an additive, but the reflux kept getting worse. On October 4, 2012 she had a Nissen Fundoplication, G Tube, and removal of two hemangiomas (one of which had already started oozing). The gut wrenching feeling that I had when Gia was being taken into the OR is beyond words! Surgery went well. Recovery was on target. On October 12, 2012 the post surgery esophagram showed some swelling. Therefore, on October 15, 2012 Endoscopic Balloon Dilation was done to open passage. So far, all is well and it looks like Gia will be home soon tipping the scales at 8 pounds 12 ounces! I can definitely say that my Faith has grown stronger and Gia is the TRUE definition of a MIRACLE BABY!

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

Three words that come to mind when describing Gia are: Fighter, Strong, and Winner. From the time she was born, she fought one battle after another to get to where she is today.  The strength she showed in her survival proves that she is a winner!

What advice do you have for future NICU parents?

STAY STRONG AND NEVER LOSE FAITH!

Super Boo-Boo

Lilly C. ~ Super Hero Alias: Super Boo-Boo

Lilly CAge: 3 months
Weight at birth: 4lbs 4 ozs
Weeks gestation: 34 weeks
Time in the NICU: 10 days

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

Lilly is absolutely amazing. The doctor forgot to tell her she was a preemie. She came six weeks early (giving mommy a seizure to let her know she was ready to come out) and spent 10 days in the NICU. At first she had a little bit of jaundice but she kicked its butt early in her stay there. Before we could take her home she had to learn how to multitask when eating. Every brady she had made my heart sink but this little girl is a trooper. She doesn’t give up and blows through every obstacle that is put in front of her. This is why I think she is amazing. She makes me think “if this little preemie can do it, I can do it!” Her strength gave me the strength to get up out of bed two days after an emergency c-section so that I could get better to take care of her.

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

Lilly’s secret identity is called Boo-boo. Her super abilities include: Sleeping through the night, power kicking mommy, and making everyone  who meets her fall in love with her. Her trade mark is her tongue, she never keeps that thing in her mouth. She even has her own catchphrase “agee.”

The Pee-er

Sterling W ~ Super Hero Alias: The Pee-er

Sterling WAge: 10 weeks
Weight at birth: 3 lbs 11 oz
Weeks gestation: 34 weeks
Time in the NICU: 56 days

Diagnosis, surgeries, complications?

Truncus and aorta repair. Focal seizures left arm. Moderate stroke. 1-1/2 collapsed lungs. Left vocal chord paralyzed. Jaundice. Arrhythemias. Apnea. Bradycardia. That is all I can think of now. But I’m sure there is more.

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

He has been through so much. He was a preemie, but because of placental failure he was really small for his age. So he had to grow before he could have surgery to repair the truncus and aorta. He had apnea and bradycardia from being premature, but he was also on prostaglandin that just made the apnea and Brady spells worse. The TPN started giving him problems with his liver. He was on Lasix to help with the fluid on his lungs, that threw off his electrolytes giving him arrhythmias. His hematocrit kept dropping so he was having blood transfusions 2-3 times a week. Once he was 6 weeks old (actual) he was finally big enough to have open heart surgery, but those were not without complications. He threw a clot from the bypass giving him a moderate stroke and seizures. All the swelling in his chest collapsed his left lung halfway and his right lung entirely. His left vocal chord was also paralyzed from the surgery. But our little guy is a fighter. He came home at 9 weeks old (actual) on oxygen and a NG tube. But he is finally home with us and we are thrilled. He is now 10 weeks old and weighs 7 lbs 8 oz. we are so proud of our little fighter.

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

strong, charming, calm
Our little guy is well known by all at UCSF. He quickly got a reputation not only for being cute, but for the incredible superpower of being able to pee on everything in his isolette while swaddled in a daiper. He quickly became known as “the pee-er”. He has peed on many of the nurses and his dad. He peed this morning and created a puddle almost twice the size of his body, while in a diaper and swaddled. But the pee-er is not into being dirty. The only reason he screams is if his diaper is dirty.

The pee-er is also known for being incredibly cute–melting hearts with his expressive face.

The pee-er is often accompanied by his trusty sidekick Bear. A beanie baby that was just a little smaller than him at birth. Bear has been by his side through his journey in the NICU and has followed him home to continue to fight together as long as there is a need to fight.

What advice do you have for future NICU parents?

Occasionally leave the hospital. Sleep in your own bed. Eat a home cooked meal. Especially if the stay is long. You can’t sleep in chairs and eat at the hospital forever.

Bring in hats for the baby. It makes them look like they belong to you and not the hospital. Decorate their isolette. Make a sign with their name. Bring in 1-2 SMALL stuffed animals, think beanie baby size.

Miss Feisty

Nessi C. ~ Super Hero Alias: Miss Feisty

Nessi CAge: 3 years old
Weight at birth: 3lbs
Weeks gestation: 29 weeks
Time in the NICU: 44 days

Diagnosis, surgeries, complications?

jaundice, necrotizing enterocolitis, apnea, bradycardia, a few blood transfusions..two weeks after leaving the nicu she was back in the hospital with meningitis for another three weeks

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

Nessi was fiesty even in utero. She would always move around so much, dancing when we played music, kicking inside like a future soccer player. She was a little too impatient in there, so she decided to make her grand entrance into this world a few months early. She was nicknamed “Little Miss Feisty” by the NICU nurses. She was outgoing even for a preemie, crying the loudest and wanting all the attention. She would constantly pull out her cpap and have a sly little smile on her face…nobody was quite too sure if she knew what she was doing but she sure liked to cause trouble!

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

Nessi is made of steel! She is a super hero all around. She will light up a room in an instant with her smile and giggles. She will grab your attention by playing jokes, making faces, or hiding and jumping out to scare you. She is fearless and adventurous. She has an unbelievable memory and pays great attention to even minute details. Nessi is our super hero for life!

What advice do you have for future NICU parents?

Be there as much as possible with your baby, touch your baby (if allowed), talk to your baby, sing to your baby, hold your baby (if allowed). Enjoy the moments with the baby as much as possible. Be there for bath time, feeding time, etc. Don’t be afraid to ask questions. Be friendly with the nurses!! And other parents that you meet. It’s ok to cry and it’s normal to get frustrated, but just remember that things will get better, keep faith!

Site last updated March 21, 2017 @ 2:17 pm