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ThunderEli

May 13, 2013 by Leave a Comment

Nayeli M. ~ Super Hero Alias: ThunderEli

Nayeli M.Age: 2 years
Weight at birth: 3lbs 10 ozs
Weeks gestation: 31 weeks
Time in the NICU: 33 days

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

Nayeli was born early because I am a diabetic and during my pregnancy I had preeclampsia. During my pregnancy my conditions put a lot of stress on her as she grew in me. She didn’t let my medical conditions stop her though. She continued to grow strong and normal. She was very determined to let us all know she was meant to be here and to help save me. Because of my angel I now see that obstacles may be tough but you keep fighting. I now fight diabetes and recently had a heart attack. Now every time I look at my big baby girl she reminds me of what I am fighting for.

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

Tough, courageous, strong-willed, fearless and most of all she is super lovable and caring.

What advice do you have for future NICU parents?

It’s a tough position to be in and you are going to feel helpless. Remember that in the NICU they are in the best place they can be for the time being until they are at their full strength for them to go home. Pray a lot and never leave your baby’s side. They need you more than you need them. God Bless you and your baby(s).

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Ninja Sophia

May 8, 2013 by Leave a Comment

Sophia K. ~ Super Hero Alias: Ninja Sophia

Sophia KAge: 2 years
Weight at birth: 1lb 9oz
Weeks gestation: 24 weeks
Time in the NICU: 103 days

Diagnosis, surgeries, complications?

Chronic Lung Disease, PDA, Oxygen dependent, malnutrition, hernia, Retinopathy of prematurity (eye sugery), vision loss, oral hyposensitivity & tactile hypersensitivity

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

Sophia has always been a fighter, even came out kicking and trying to cry. She has 3 therapies each week & has come so far for her little age of 2 (21 months adjusted). She continue to give others hope by visiting the Ronald McDonald House & Room where other preemie parents stay while their children are in the NICU. Not to mention being inspiration for preemie parents on Facebook. When you tell people you have a 24 week old and see how far she has come it really does give hope to other who are just starting their rollercoaster ride.

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

My Sophia is known as the little Ninja because she is such a strong little fighter who conquers any developmental/medical issues she has.

What advice do you have for future NICU parents?

You are your child’s best advocate, it’s important to be there regularly in the NICU not only for the bonding/kangaroo care but to make sure things are going right. And if you need help (emotional/informational) don’t be afraid to ask anyone because this is a very hard time & they want to help so let them.

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The Kellenator

May 5, 2013 by Leave a Comment

Kellen M. ~ Super Hero Alias: The Kellenator

Kellen BAge: 17 months
Weight at birth: 2lbs 1oz
Weeks gestation: 27 weeks
Time in the NICU: 163 days

Diagnosis, surgeries, complications?

Sepsis and pneumonia at 1 month resulting in Bronchopulmonary dysplasia.  Surgery to place a gastronomy tube for inability to eat in May 2012

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

Kellen has such amazing strength and personality.  From 4 weeks gestation until the time I delivered, the doctors were unsure and unoptimistic about him being able to make it.  Against all odds, he came into the world fighting, and has continued to do so the past 17 months of his life.  He has overcome severe breathing issues, eating issues, and developmental issues, against all odds.  He is a ball of energy that is always on the go!

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

He is incredibly strong willed. He knows what he wants and will do anything in his power to get it!
He is incredibly brave. When he went back to have his surgery, he went with the nurses back to the operating room and just gave his Mom and Dad a smile and a wave.
He is incredibly strong. He overcame a massive infection while in the NICU that nearly cost him his life. Despite the doctors prognosis, he pulled through amazingly.
He’s tough! He may be younger, but he can overtake his older brother in less than a minute!!

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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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Peanut Squirrel Action Hero

April 24, 2013 by Leave a Comment

Alice S. ~ Super Hero Alias: Peanut Squirrel Action Hero

Alice SAge: 18 months
Weight at birth: 2lbs 6oz
Weeks gestation: 28 weeks
Time in the NICU: 58 days

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

Every time Alice is told that she is “Too Little” to do something, she fights back. At daycare they were not wanting to bring her outside for play due to the equipment being “too big for a premature toddler.” Alice decided to show them all by climbing all over everything and just pushing the little cars around that she was “too little” to drive. Eventually, due to my little peanut being very persistent, they gave up and let her play outside with the rest of her classmates. She continues to push limits everyday and doesn’t let her size stop her. She even walks better than Mommy does in Mommy’s high heels.

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

Persistent, Fighter, Fearless

What advice do you have for future NICU parents?

Don’t believe statistics…

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Amazing Rose

April 21, 2013 by Leave a Comment

Rosalie C ~ Super Hero Alias: Amazing Rose

Rosalie CAge: 2 years old
Weight at birth: 2 lbs 4.2oz
Weeks gestation: 27 weeks
Time in the NICU: 75 days

Diagnosis, surgeries, complications?

She did not have surgeries thank you God! We have had our good day and bad days.

Why Should Your Child Be Recognized as Preemieof the Year?

She was born so early and from day one, she was a fighter til today. She is a shy toddler and it takes her a while to warm up. Mostly she is shy because she stayed home most of the time her first year because she was so premature and we just tried to keep her safe as the doctors advised us. She know all her letters and can count to 10 great. She doesn’t speak as well as other kids her age but she tries everyday and that makes me a proud mom. She is currently in a baby ballet class and gymnastics and no one know her troubles or understands. She does not let anything or anyone slow her down.

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

Strong
Active
Loving
Sweet
Smart
Entertaining

What advice do you have for future NICU parents?

It may not be fair but it is all worth it. There have been days my heart was going to burst and take that time to learn because taking care of a preemie isn’t like taking care of a full term baby.

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Haillees Comet

April 19, 2013 by Leave a Comment

Haillee C. ~ Super Hero Alias: Haillee’s Comet!

Haillee CAge: 15 months
Weight at birth: 3lbs 14oz
Weeks gestation: 35 weeks
Time in the NICU: 43 days

Diagnosis, surgeries, complications?

Turner’s Syndrome; repair of PDA; coarctation of aorta; dextrocardia; bicuspid valve

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

She fought through all the pain with a beautiful smile on her face! There were many downs but she managed to defy the odds. I know there is a long road ahead of us but we will continue to hold our heads high and smile because sometimes that’s all it takes to make the pain and fear go away.

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

Determined, Strong, Fighter, Happy, Lovable

No matter how hard things got she was determined to do everything possible to meet her milestones! She didn’t sit unassisted till 11 months. At 12 she started army crawling and rolling. By 13 she was walking! I am so unbelievably proud of my daughter. No matter how impossible it seems she is determined to prove she can do anything she wants to do!

To do something, she learns how to do it, no matter what the obstacle, thus giving her the intelligence to do it again or do it better.

What advice do you have for future NICU parents?

One day at a time! Baby steps! All that matters is when you’re there holding your precious miracle. The rest of the world can wait.

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Feelings of Grief, Gratitude and Healing

April 9, 2013 by Leave a Comment

Neonatal Maternal Transportby Cindy Marks

After a difficult pregnancy, my son was delivered nearly 6 weeks early due to the fact that I had HELLP Syndrome. He was medevaced to a larger hospital while I had to stay behind as a patient at the smaller hospital. For 30 days, my husband, one year old daughter, and I traveled back and forth from our home to the larger hospital to visit our “Superman.” When he was finally discharged, I thought that everything was over and life would continue as normal. I was wrong.

For the first year of his life, I barely had time to think about what had happened with his delivery and our NICU experience because my life was consumed with taking care of two small children. When thoughts of what had happened would creep into my mind, I would shove them back because it was never a good time to think about them. I was taken by surprise on his first birthday when feelings of grief snuck in with my happiness. I felt something must be wrong with me to feel sad since everything turned out okay. Again, I pushed it back.

Eight months after his first birthday, my friend had a premature baby in the NICU. I wanted to provide her with my support, so I was forced to face pictures of the NICU, feeding tubes, and everything else that goes along with the experience. Her experience turned out different than mine, and her precious baby boy passed away a few days later. For the first time, I cried—hard. I cried for my friend and the injustice of what had happened, and I cried for my boy who also had been in the NICU. I was no longer able to push away what had happened. It was right there staring me in the face, and I had to face it.

A Google search led me to Hand to Hold. Laura Romero immediately responded to my request and was available to provide me insight to the unique feelings I had. She matched me up with my mentor, Kimberly, and the two of us talked on the phone. I told Kimberly of how I had tremendous feelings of guilt. I felt guilty that my son had to be delivered early because of my syndrome and had to be in the NICU. I felt unworthy of my sadness of the experience because my son was healthy and alive. I couldn’t figure out why I wasn’t “over” the whole experience and able to just move on with life. Kimberly shared her experience with me. A key thing she told me was that even after 8 years, she still has moments of sadness but that those moments are briefer and further apart. She told me that you don’t ever have to get over it. It’s a traumatic experience that happened to your child. You are that child’s mother and you never want anything tragic to happen to your child. And when something tragic does happen, it’s okay to feel sad—even years later.

My son just celebrated his second birthday. A week before his birthday, I found myself curious and wanting to see his NICU pictures which I couldn’t look at before because of tremendous sadness. As I was looking at the first days of my precious boy, I realized something . . . I was smiling. Today as I watch my son running around the house playing with his sister, my heart swells with gratitude and healing.

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Giada Bean

April 8, 2013 by Leave a Comment

Giada N. ~ Super Hero Alias: Giada Bean

Giada N.Age: 1 month 2 weeks and 6 days
Weight at birth: 4lbs 11oz
Weeks gestation: 34 weeks and 6 days
Time in the NICU: 12 days

Diagnosis, surgeries, complications?

Hydronephrosis at 25 weeks

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

I had my daughter on August 17, at 34 weeks and 6 days, due to preeclampsia, while I was on vacation in Flagstaff, AZ. For those who don’t know, Flagstaff is 7500 ft above sea level, and I live in San Diego, CA, which is at sea level. At 34-35 weeks, the fetus is learning how to use their lungs, so to be born at 34 weeks and at such a high altitude, would make breathing a struggle for her. Giada had also been diagnosed with hydronephrosis early in my pregnancy, and the Doctors were afraid she might have some sort of hip dysplasia because I had had it when I was born. She stayed in the NICU for only 2 weeks. After only 2 days, she was taken off of oxygen. Despite being very skinny, she was eating very well. Finally after a long wait, I was finally able to take her out of the NICU, but we still had one more feat: getting back to San Diego. Ten hours of driving later, we made it home. The next week she had a x-rays of her kidneys and an ultrasound of her hips done. They came back normal. She is finally a healthy 8 lbs at 1 and 1/2 months old, with no physical or mental health problems. She managed to over come a lot in only a few weeks, and that’s why Giada should be “Preemie of the Year”.

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

1. Strong – I was told she would have to stay in the NICU until September 22 (her actual due date) but she was released after only 2 weeks.

2. Determined – When she wants something she will do anything to get it.

3. Intelligent – She’s learning new things every day. And every day she gets smarter, she gets stronger, and with that strength comes determination, and when she’s determined to do something, she learns how to do it, no matter what the obstacle, thus giving her the intelligence to do it again or do it better.

What advice do you have for future NICU parents?

It is very scary at first, but just trust that your NICU nurses are doing everything they can for your son or daughter, and at some point they will be able to come home with you. Try not to be too upset because the baby can sense that. Visit him/her as often as possible, and bring a ton of outfits for him/her to wear to cheer you up :)

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Amazing Grace

April 6, 2013 by Leave a Comment

Grace S. ~ Super Hero Alias: Amazing Grace

Grace SAge: 14 months
Weight at birth: 4lbs 2oz
Weeks gestation: 31 weeks
Time in the NICU: 48 days

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

My Amazing Grace has lived up to her name since her unplanned early entrance to our world. We rode the NICU roller coaster like many other parents but through it all her strength and fighting spirit got us through. She is feisty and opinionated and has never let her two month delay hold her back. Instead it has been more like a head start for her! With the loss of my brother a few months ago, Grace has been the light at the end of the rainbow for my parents. She gives us all a reason to face the day no matter how dark and cloudy it may be. She is our super hero.

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

Courageous
Independent
Leader

What advice do you have for future NICU parents?

Ask a lot of questions. In this case it is more true that knowledge is power than ever before. Be your childs advocate. Read, sing, and talk to your baby but don’t be offended if staff asks you not to or even not to touch your baby. Its the most un-natural feeling in the world to not touch and hold your baby, but too much stimulation is not good for a preemie.

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