Chris Rice Cooper
JOSIAH’S
STORY
*ON Saturday, June 10,
2017, from 9 a.m. to 12 p.m., a fundraiser will be held for 17-month-old Josiah Benard Rainey who has VACTERL. In a scripted
interview via email Josiah’s mother Brie Anne Rainey talks about Josiah, his
special needs, and the special blessing he has been to their family.
Describe in detail when
you found out you were pregnant with Josiah?
I
believe I found out I was pregnant in March or April of 2015. My daughter
(Aaliyah Marie Rainey) was about 7 months old and we were enjoying life as a
family of three when I became increasingly tired. Not unusual for newer
parents, or parents in general, but I was barely getting through my day.
After a couple weeks of that my husband suggested I go to the doctor to see if
anything was wrong with me. I made a joke saying I'm so tired its almost
like I'm pregnant. Then I thought about what I said, did a little math in
my head, and realized I'd better check! The next morning I found out I
was pregnant!
Describe in detail what
your pregnancy was like with Josiah?
The
first 3 months of my pregnancy with Josiah was amazing, I was excited to have
another baby! And besides being tired, I physically felt well.
My
entire pregnancy changed on July 28th. We went in to find out the sex of
the baby and a couple minutes into the ultrasound the woman performing the scan
started asking some questions which my husband and I both thought was unusual,
and then she excused herself. She came back with the doctor and the Dr.
told us our baby had major heart issues, brain issues, and had no left
leg. My husband and I completely broke down, I remember asking her what
do we do. At that point the Dr. told me that babies like this don't make
it and that I could choose to terminate the pregnancy or carry the baby until
he passes and then deliver him. I remember just trying to keep it
together just enough to get out to the car.
The
next day was my birthday. We drove to
St. Louis and did blood work, an amniocentesis, and an ultrasound. Keep
in mind there are like 6 Drs. in the room...our main Dr. who we came to us told
us that along with heart issues they don't understand and the missing leg, he
had spinal issues, kidney issues, and was also missing part of his arm.
The Dr. basically told us they were a couple of possibilities of what was going
on, but was unsure of what the outcome of the pregnancy would be, and again
gave us the choice.
To
me there was never a choice, I could feel the baby moving and I knew that if
there was even a 1% chance that I could meet my baby face to face even if would
only be for a short time, that I had to fight for that moment. From that
moment on we had so many Dr. appointments for checkups, and ultrasounds, and to
meet with specialists, and developing care plans.
At
home, my husband and I definitely had tearful times and moments of doubt, but I
had to give my pregnancy to God to find peace and comfort, and I did. I
also did not want to spend much time upset and crying because I wanted to enjoy
every single moment I had with Josiah. I wanted him to know that he made
mommy and daddy so happy, not sad. I waited for every single kick, every
single movement is engraved in my heart.. because for that moment I knew he was
still alive.
Describe in great detail
the delivery of Josiah? And when is his
birthday?
On
December 7th, 2015 my husband and I walked into the hospital so I could be
induced. This was not my first choice, but we needed to be prepared with
our Doctors and the NICU team. We got there early in the morning and got
the process started. My husband was with me and I remember I was on my
phone most of the time until the contractions really set in in the
afternoon.
As I kept progressing, Josiah started not doing
so well. I remember the nurse telling me that if they give me
instructions to follow without asking why because time was limited and they
were doing what was best for the baby. There were so many nurses in the
room and Drs. coming in and out the whole time...I one time stopped counting at
13 people. They were constantly monitoring him and telling me to switch
positions, giving me oxygen, giving me fluids to help him out. With
strong contractions his heart rate would drop. It got so bad they had to
give me shots to stop my labor several times. The shots had a temporary
effect for about 15 minutes and would stop my contractions to give him a
break. We came extremely close to having an emergency c section several
times but my Dr was determined not to do the section unless absolutely
necessary.
I was in a lot of pain and decided to get an
epidural, I felt slight relief and more relaxed but my contractions were still
very strong. They didn't think I was receiving the pain relief I needed
so decided to try again on the epidural. That one went bad and I couldn't
hear or see anything so they had to redo it a third time. By this time I
had given up on the epidural and left it as is.
I progressed and was fully ready but he still
had not come down to where he needed to be, but since he wasn't doing well the
Dr decided to have me start pushing. I delivered him in the OR so we were
prepared for anything, with the NICU team waiting. I pushed for about an
hour with not much progress. Finally he started coming down and out but
he was coming out the wrong way. So in between pushing the Dr. had to
turn him each time, which was incredibly pain full. After about another
hour I remember telling them I can't do it anymore. The Dr. and nurses
continued to encourage me and finally he came out at 11:51 p.m.
As soon as he came out I remember the Dr. told
my husband to hurry and cut the cord and the NICU team took him to the other
room to work on him.
I just remember asking over and over again if he
was ok and they told me he was but didn't say much more. After he and I both got taken care of, they
wheeled Josiah in. He was already hooked up to oxygen and monitors and
was in a little incubator. I was able to open up the door of it and hold
his little hand and look in his eyes for the first time. I remember
feeling so blessed that God gave me the blessing of meeting his beautiful
soul. We spent a couple minutes together then they took him back to
evaluate him.
After a couple hours they told me it was time to
take him to Cardinal Glennon (http://www.cardinalglennon.com/Pages/default.aspx), and they brought him
in the room so I could see him before he left.
Again he was in a giant
transport incubator and this time i could only look at him for a couple minutes
before they took him. It was so crazy because I felt like I had a baby,
but it didn't seem like I'd had a baby because i had barely seen him and I
wasn't doing any mommy things. I was just sitting in my bed alone.
When did you find out
Josiah had special needs? And what are
those special needs?
Josiah
has VACTERL which is a random occurrence and effects all body systems. He
deals with several medical complexities including vertebral anomalies and
scoliosis, previous bowel issues which have been corrected through surgery,
cardiac defects, trachea and esophagus anomolies, renal anomalies, and limb
anomalies. He has had several surgeries including a major open chest
surgery to repair his airway which has helped immensely!
Currently
he struggles most with his breathing, and with kidney and heart issues. He goes
to physical therapy once a week and is progressing wonderfully with his
prosthetic leg and walker! He was in and out of the hospital for the
first year of his life, but for the last 6 months has only required regular
follow up with all of his doctors and specialists. These are life long
issues and he will require care his entire life.
How did you and your
husband come up with the name Josiah?
And what is his full name?
His
full name is Josiah Benard Rainey. When we decided on his name I was
pregnant and we were already aware of Josiah's medical complexities. At
the time we were unsure of what his prognosis was and quite honestly if he
would even make it through the pregnancy or delivery. My husband came
home from work one day and said what do you think about the name Josiah.
We disagreed on all names leading up to that, but that name I liked
surprisingly! So I asked him what the name meant and we decided to look
it up on the internet. Josiah means God will heal you. I instantly
got goose bumps and there was no question that Josiah would be his name.
His middle name Benard is a family name on my husband's side, it is my husband’s
middle name and his father’s.
Can you describe special
moments you and Josiah have shared together?
Special
moments Josiah and I have together. I feel like every moment we spend
together is special. I have learned so many things through Josiah and one
is that children are a gift, and we have no idea how long we will get to enjoy
that gift. I made the conscience decision when I was pregnant to enjoy
every moment I had with him and I do my best to honor that everyday.
Josiah has touched so many lives already
in such a short time. He is such an inspiration to so many people!
He spreads joy and encouragement everywhere he goes and lights up any room with
his smile.
Can you describe special
moments Josiah has shared with his siblings?
Josiah's
sister is 17 months older than him and they are inseparable! They spend
their days doing everything together. She is always looking out for him
and making sure he is ok.
What is your husband’s
name and what does he do for a living?
My
husband is Craig Rainey. He works for AAFES on Scott Air Force Base as
the manager at the BX.
What is your full name
and what do you do outside of being a stay at home mom?
My
name is Brie Anne Rainey and I work at It Works Global which is a plant based
online health and wellness company. I work from home helping customers
meet and maintain their specific health goals and helping distributers achieve
financial freedom! I absolutely love it!
Can you go into detail of the fundraiser for Josiah and his medical bills which is scheduled for June 10, 2017 from 9 a.m. to 12 p.m.?
The
fundraiser will be a workout consisting of 50 lunges, 50 air squats, 50
sit-ups, 100 jumprope, and 50 pushups. This is a partner workout to split
between two people! For experienced crossfIt people, a harder version of
that is optional! Kids workout will be after the adult workout. During
event there will be a silent auction, 50/50 raffle, health vendors, and
hopefully food! This fundraiser will go towards Josiah's medical
expenses. Specifically for his prosthetic leg, wheelchair, and
walker. Anything extra past those being paid for will go towards
outstanding medical bills, co-pays, medicine, and medical equipment.
What is CROSSFIT VOYAGE?
Crossfit
voyage is a structured program of fitness training based on functional
movements utilizing the best form of gymnastics and Olympic weightlifting.
What is PARTNER FITNESS
COMPETITON?
A
partner fitness competition is with a partner you complete the number of
movements: for example between in the workout is 50 air squats, between the two
they would complete the 50 air squats.
What is 50/50 raffle?
A
50/50 raffle is where the ticket buyer who wins splits the prize money with
Josiah! Anyone can purchase tickets, even if not attending event.
You can purchase directly through me, and the winner will be contacted and
given a check!
What is the itinerary
for the fundraiser?
7:30Am
Doors open and Registration begins for those who did not pre register
9:00Am
Competition begins-competition will be in heats, depending on how many teams
register on how many heats we will have.
11:30Am
Kids workout begins
12:00
Announce Silent auction winners, raffle winner, and competition winner
Can anyone come?
Yes,
anyone and everyone can come to the event! To participate in workout must
be 12 or older. Kids workout age rage is 3-12. Must have crossfit
experience to do the rx workout.
How can someone donate?
or
by mailing cash or check to
Brie Rainey(mom &
caregiver to Josiah)
1028 Belle Valley Dr. Apt.
10
Belleville, IL, 62220