There is no truer statement than “life is a gift, never take it for granted”. Jason and I learned this valuable lesson to be true when our daughter was born prematurely. When it comes to the birth of a child, it is truly a miracle where you cherish each and every moment.

It was the evening of Wednesday, August 15, 2007 and my water broke. All we were thinking was it’s too soon, I’m only 32 weeks. We contacted the on-call nurse and she told us to come to the hospital. We hadn’t even packed our hospital bag or went to our birthing class yet. We just grabbed a few things and left with the uncertainty of what was to come.

We arrived at St. Francis Hospital Bartlett and immediately the doctor was trying to stop the labor. After much effort, the doctor said this baby is coming. At 2:24pm on August 16, 2007 our daughter, Rylee Rae Vinson was born. She arrived 7½ weeks premature, but came out kicking and screaming like any normal, healthy baby. Rylee was 3 pounds 14 ounces and 17 inches long. We were all confident that she would be just fine. She looked absolutely perfect. The nurses took her to the NICU within the first few minutes and put her on oxygen. Approximately 48 hours later, the neonatologist informed us Rylee wasn’t getting enough oxygen and needed to be put on a ventilator. Jason and I were concerned but she was still hanging in there.

On her third day of life, the doctor felt that she was having severe lung complications and that we needed to transfer her to the NICU at The Med. They had a different type of ventilator that would be gentler on her lungs than a regular one. Rylee was transported by ambulance and all set up on this new ventilator. We never expected any of this to happen to our sweet little girl. We scrubbed into the sterile environment numerous times through the day and night and using sterile foam each time before we touched her. She had blood transfusions, many tests, x-rays and connected to all sorts of wires and machines. We hung on every moment while we waited for the results on the next tests to see if there were signs of improvements. Sadly, after being on life support for 8 days, Rylee became an angel in heaven.

There was so much happening from the very beginning that we didn’t understand or that just overwhelmed us. The March of Dimes was there to help us. There was printed material for us to read to find out terminology as well as what happens with preemies while in the NICU. It was a whole support system that helped us through while Rylee was here.

On April 29th, 2010, we were blessed with the full-term birth of our second daughter, Kayden Rylee Vinson.  It was a long pregnancy of home rest and weekly injections to prevent premature birth.  It was worth every moment as our miracle baby was born 7 lbs 2 oz and was 19 ½ inches long.  Her safe arrival was due to the research and medical advances of the March of Dimes with the help of her older sister as her guardian angel.  We are so very thankful for the healthy birth of Kayden and continue to cherish each milestone she reaches.

The March of Dimes continues to be there for us with family nights, parent education meetings, etc. To honor Rylee’s memory, celebrate Kayden’s safe arrival and to repay the kindness we have received, we raise as many donations as possible to give back to the March of Dimes.  It is our hope that they are able to continue to help families in our situation, to find a way to prevent prematurity and that “one day, all babies will be born healthy”.

Find out more on Team Rylee...  

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Kayden is now an extremely happy almost 6 year old who loves soccer and gymnastics. She laughs, smiles and brings so much joy to everyone she is around. No one would ever know she has had more than 100 seizures daily for the past five years. This is the story of how LeBonheur is helping Kayden.

When Kayden was about 7 months old, I noticed her slump over really quickly and pop back up. It was as if someone turned a power switch on and off. I thought it was strange and called the Pediatrician's office. The nurse said it sounds like maybe she is tired and just falling asleep. Just keep an eye on her. I was still worried and then when it happened a few more times in the afternoon, I rushed her to the pediatricians office. The doctor was out so the Nurse Practitioner looked at her. Her vitals were all normal and she acted fine. I still didn't feel right about it after we left so my husband and I agreed we would take a video of it if it happens again. Sure enough, that evening after we put her to bed, she woke up and it happened again.

We went straight to LeBonheur and showed the triage nurse the video we took. They took us back immediately and started running several tests. EKG, EEG, spinal tap, blood work, etc. We were so worried and the first thing they told us was that these were seizures. I always thought a seizure was just the convulsive kind. We now know the several different types of seizures and how they can look so different in each person. After being in the hospital for about 5 days full of tests and medications, they sent us home to start the first medicine of several.

Three years later, we have been in the Epilepsy Monitoring Unit at LeBonheur for several days on 6 separate occasions, tried over 12 different medications, blood work every 6-8 weeks to check medication levels and numerous tests (EEG, MEG, MRI, genetic testing, etc).

After the hard work of the doctors at LeBonheur, Kayden has been diagnosed with Generalized Myoclonic Epilepsy. Myoclonic seizures are like twitches or jerks. She also does have atonic seizures at times which are also called drop seizures. We have not been able to find a cause for the seizures. The MRI showed that her brain structure is normal, no lesions or tumors. An amazing test she had in December 2012, was an MEG (magnetoencephalography). There are only 3 of these for pediatrics available in the country. LeBonheur being one of them. It is able to detect within a milimeter of where the seizure activity is located and will show what areas of the brain are being used. Basically, they placed headphones on Kayden to see if the speech area of her brain reacted when she heard speech. It can also see what parts of her brain respond to reflex tests as well. It was very insightful to find out that Kayden has two areas in her frontal lobe that are causing seizure activity.

On August 2, 2013 Kayden had brain surgery since her seizures were not getting better through medications and were becoming physically dangerous. We would have to hold her hand all day to prevent her from falling and injuring herself during a seizure. The surgery is called a Corpus Callosotomy where the connection to the right and left sides of the brain is cut to prevent the seizures from spreading through out the brain. It was a huge success!

Two of the three seizure types have stopped. Her development has skyrocketed since she can finally complete her thoughts and retain information without a seizure constantly interrupting. This all happened immediately. Her first meal after surgery, Kayden took the fork from the plate and put food right into her mouth. We had been working on that for months prior to surgery and she couldn't do it. She has continued to make amazing progress daily. It's as if she was reborn after the surgery and came out of the cloud. Her recovery has been absolutely amazing.

Kayden continues to have several seizures daily but they are mild and not developmentally damaging. She receives weekly physical, developmental, occupational and speech therapy. Physically she is coming along very well. She is walking and almost running these days. She absolutely loves her gymnastics class when she gets to do somersaults, jumping on the trampoline and hanging from the rings. Speech and communication is what we are really working on. Kayden hasn't said any words yet but does babble every once in a while which is a known side effect of the medication. During the MEG test she had in December, we were told her speech pathways are excellent and she may have an auditory processing issue. She has done well with following one step directions with physical and verbal cues. We are continually amazed at her strength and determination.

Kayden goes to school every weekday and is doing fantastic! She is learning, playing with her peers and following directions.

Her tonic seizures stopped in October 2014 and she starting making noises again. We are hoping these may turn to words some day soon as we continue to try different medications in hopes that she will be seizure free one day."

The LeBonheur Neuro Unit is such an amazing part of a wonderful institution, dedicated to the health and well-being of children. They are tremendously supportive medically, but also emotionally. They have the resources to be leaders in children's medicine, but also offer the compassion and support to treat each child as their own. As parents, they help get Jason and I though every day, knowing we are not alone in this struggle with our daughter.

When Sean and I found out we were pregnant in April 2009, we were so excited and thought “that was really easy!”  We had only tried for a month to get pregnant and had no issues.  We were so thankful and felt very lucky. 
 
We found out we were having a boy in August 2009 and all the dreams parents have about their sons came into our heads, would he one day be a doctor, lawyer, a husband, a father??  All of these wonderful visions and aspirations were so overwhelming and exciting.  I am sure every new parent feels the same way that we did.
 
I had a rough pregnancy, lots of morning sickness and a stay overnight in the hospital due to dehydration and early contractions.  That was in late August 2009.  On Friday, September 25th 2009, our lives were forever changed.  I had been at work and noticed that something just didn’t feel right.  I called my doctor and they told me to go get checked out at labor and delivery.  By the time we got to the hospital, I was contracting every 3 minutes or so.  The doctor performed a test to see if I was in actual preterm labor and it came back as positive.  There it was, the scariest moment in our lives so far.  Sean and I were so terrified and optimistic all at the same time.  I never thought it was possible to have all the emotions going on at once.  I was only 24 weeks pregnant, how could our son live?

I was checked into the hospital and given a ton of medicines to stop the labor and try to keep me pregnant as long as possible.  It was a rough week of almost constant laboring, not being able to eat, and very raw emotions.  By the next Friday, October 2nd, 2009, my cervix was completely gone.  Sean and I knew this was the day our son was to going to be born.  We were terrified and hopeful.  At 10:09 pm, our son Campbell was born via C section.  I heard the tiniest little sound I have ever heard come from his mouth when they pulled him out of me.  He sounded like a tiny puppy dog.  I remember being so thankful I had at least been able to hear him for a minute. 
 
I was wheeled into recovery and so exhausted and out of it that I think I was almost too afraid to ask about our son.  Sean got to go see him; they took me back to my room to rest.  He had pulled the breathing tube out and was breathing on his own for a little while.  The Doctors were amazed at our little boy’s strength.  The next day, I finally felt strong enough to get wheeled into the NICU to see my wonderful miracle of a baby.  He was a mighty 1 lb 15 ounces and 13 ¼ inches long, but he was the most beautiful thing I had every seen. He was our angel baby.  Sean and I were so scared, but so happy he was breathing and alive and smiling and he was such a wonderful testament to the NICU doctors and nurses.
 
Over the next almost 5 months, Campbell had many ups and downs in the NICU.  He had to have a shunt placed due to hydrocephalus and also contracted MRSA in the first few weeks of his tiny life.   He had to fight to live and he did.  Campbell is still a fighter to this day.   If it wasn’t for the March of Dimes, Campbell would most likely not be here.  The March of Dimes provides so much funding for research for premature birth and it will hopefully find a way to stop it completely!  Sean and I are forever grateful to anyone and everything that made it possible for our sweet little boy to live.  He is now 18 months old and doing wonderfully!