Chris Rice Cooper
*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?
You can donate by making a donation through the Eventbrite link on www.Josiahlicious.wordpress.com
or by mailing cash or check to
Brie Rainey(mom & caregiver to Josiah)
1028 Belle Valley Dr. Apt. 10
Belleville, IL, 62220