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.
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.
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
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...
If you can't make it to the tournament
or the 5K this year, you can still make a donation through PayPal!
Click below to donate!
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
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
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
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.
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.
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."
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
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
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?
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
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!