Inside Gillette Blog

Kid Of The Day - Jaxson’s Story

Posted On: 11/07/2013

My pregnancy was healthy and normal. An ultrasound said we were having a girl! My husband and I were on vacation four hours from home. We spent hours in our boat talking about how we would take our daughter fishing. I was 23 weeks along – just over halfway. But on the last day of vacation, I went into labor. I was airlifted to a hospital with a high-level NICU. And the baby was born. It was not breathing.

Doctors were working frantically. Everyone was crying. And then I heard the most amazing sound – a tiny little cry! The baby was alive! My husband was able to cut the cord. That’s when he noticed that we had a boy instead of the girl we were expecting! Jaxson surprised us by coming 17 weeks early, and he has kept us on our toes ever since.

Jax was the youngest baby in that NICU…ever. Doctors gave him a 4-percent chance of healthy survival. But he proved from day one that he was here to stay. Our little 1-pound, 8-ounce fighter was the “feisty” baby. He was a wiggler and was drugged so he wouldn't pull out his IVs. He extubated himself four times. He had significant trouble with his insulin levels and received six blood transfusions in the first three weeks of life. Jax had aggressive and severe ROP in both eyes, which required Avastin injections and laser eye surgery. He is still monitored closely, but so far his eyes look great!

After 93 days in the NICU, Jax came home. He was released an entire month before his due date! This is unheard of for 23 weekers. His pediatrician calls him “a superhero” every time he sees him.

Jax has done very well, but he still faces some challenges. He’s had four surgeries, with another one scheduled for this fall. He struggles daily with chronic lung disease. We have a million doctor appointments, but the main thing we do is love each other! Jax just turned 14 months old and after months of physical and occupational therapy at Gillette Children's Specialty Healthcare, our little buddy celebrated by pulling himself up to standing! He is always on the go.

Jax has the amazing power to lift your spirits anytime he’s in the room. His genuine smiles, open-mouthed kisses, and friendly “talks” make every day special. Jax is also independent. He does his own thing and goes his own way. He doesn't fit the mold and defies the odds every single day. Jax is also very adaptable. Jax is the most laid–back kid. He goes with the flow and does it with a smile on his face. Jax had oral aversion problems when we introduced solid food. After only three months of therapy, he will now eat whatever you put in front of him. He faces challenges head on: show him once, and he figures out a way! Jax is a hilarious kid – he makes us laugh everyday with his funny faces and goofy songs. He loves music and always moves to the beat. Some of his favorite things are going for walks in his stroller, reading books, playing with his cousins, and meeting new people. He’s so friendly – he has a smile for everyone he meets. You’d never know by his happy personality that he spent three months in the hospital fighting for his life!

Kid of the Day - Rayf’s Story

Posted On: 09/26/2013

I am certain you want a short snippet of why our son is great. Well, I just don’t know how to condense why he is so great into a short sentence. So, I am going to take a chance on faith and my heart and tell you as quickly as I can.

I want people to know what our son Rayf, almost 3, has gone through to be this great. I also want to raise awareness about child neglect and the importance of good foster parents.

Rayf was born at 24 weeks with two grade four brain bleeds, which left him with left sided paralysis and weakness. The bleeding also caused severe cerebral palsy and cortical visual impairment.

Rayf came to us at 10 months old weighing roughly 8 pounds. He had been neglected so badly that his hair and nails had quit growing, which caused his major organs to shut down. He was covered in scabs from scabies tunneling all over his body, and his body and skull were malformed from lying in the same position for so long. He was so weak that he lost his sucking reflex, which made his feedings take two hours. Rayf does not sit, crawl or walk unaided, yet. He babbles but cannot speak.

Fast forward to today and you will find a handsome, happy, blue-eyed boy smiling at you. He is love. He does not know hate. He holds no grudges. He is capable of learning. He has done so many things people said he would never do. He has the most infectious laugh. He amazes us every day. If you spend any amount of time with him and leave unhappy, there is something dreadfully wrong with you. 

I am not saying this journey is going to be easy. We have four children: two biological boys, ages 9 and 8, and God blessed us with Rayf’s baby sister, who just turned 2. We officially adopted them this past spring. We are still saving for a handicapped van, ramp and bathroom for Rayf, but we make the best of it because he is so worth it. I know he was meant to be there. Rayf is our Kid of the Day!

Gillette Kid of the Day

Posted On: 05/22/2013

Our Gillette Children’s Specialty Healthcare Kid of the Day is 12-year-old Malikia. Although she has Osteogenesis Imperfecta, a condition that causes extremely fragile bones, she always has a smile on her face! She has taught her family to never give up.

Gillette Kid of the Day: Olive

Posted On: 03/20/2013

By: Dana Shelso

My daughter, Olive, was born with a congenital heart defect because of an extremely rare chromosome deletion that has never been reported before (17q11.2 micro-deletion).

Olive started visiting Gillette’s Feeding Clinic for therapy in 2011, at age 1 ½.  We liked it so much that we also started physical therapy, occupational therapy, and most recently speech therapy at Gillette’s Minnetonka Clinic. Her therapists are Chrissy, Leah, and Megan. Olive has made great progress and development in her therapy areas!

This past summer, we noticed global delays and were referred to pediatric neurologist Nicole Williams, M.D. for evaluation. Dr. Williams recommended an MRI, which revealed that Olive has a condition called Chiari 1 malformation. Basically, this means the back of her brain, called the cerebellum, pushes into the upper spinal canal. We also found out that Olive has a tethered spinal cord, meaning her spinal cord is abnormally attached to the tissues around her spine.

At that point, it was time to determine the best treatment plan for Olive, which included surgery. In December 2012, Olive had two neurosurgeries at Gillette. Pediatric neurosurgeon Peter Kim, M.D., performed a Chiari decompression while Debbie Song, M.D., released her tethered cord.  Soon after these surgeries, doctors also discovered Olive would need a third procedure—an emergency surgery to treat hydrocephalus, or excess fluid on the brain, with an implanted shunt.

Olive’s unexpected diagnosis of hydrocephalus was one of the most surreal, scary, and numbing moments I have experienced. I am so thankful Dr. Kim took the time to explain everything in detail and answer every question we had. It was quite a whirlwind evening but we knew that Olive was receiving great care.

Throughout Olive’s time at Gillette last December, we realized how truly awesome Gillette is — not that we didn’t think so before! All of the PICU staff were great. The nurses, nurse practitioners and surgeons treated us like we were part of the “Gillette family” and we were included in any and all treatment decisions that were made for Olive.

We truly love Gillette. Olive has come so far in her almost 4 years of life, and we owe much of this to the fabulous care she gets from her Gillette team!