“Our journey began after our very first road trip for a family friends wedding. Throughout the entirety of the trip we had a feeling something was off so we decided before we left to go home; we would take a pregnancy test in hopes we could be expecting another baby. As we waited for the results we contemplated what life would be like with another baby and how excited we would be if in fact we were pregnant. Our suspicions were confirmed with the appearance of two faint lines and it was from that exact moment we knew our lives were about to forever change.
Like most expecting parents we went through the traditional preparations for a newborn. From the initial doctors appointment, the one in which you’re given your due date, to the gender reveal where we found out we would be having the boy we so gratefully wanted. Everything seemed right on track. On the morning of November 1s I dropped our daughter off at my mother in laws and headed to my anatomy scan at my OBGYN. I didn’t wait very long before the ultra sound technician called my name. We briefly chatted, and started with the scan. Everything looked fine to me; I was able to observe on the projector in the exam room. After the scan she gave some 4D images of Parker’s face and sent me into the room to chat with the doctor; which is pretty routine. My OB walked in, greeted me and sat in the chair; he then invited me to sit next to him to ‘talk about our little guy.’ I hopped off the exam bed and felt extremely numb, my heart had that feeling you get when you’re on a roller coaster that’s about to go down a big drop. I could feel my hands start shaking and tears fill up into my eyes but I held them back, I didn’t want to jump to conclusions but I couldn’t help it. This was the one and only doctor’s appointment I have ever been to where my husband couldn’t make it, and all I wanted was him. They sent me downstairs for blood work where I called my husband and mother, who both left work immediately to be with me. We went back upstairs to discuss the findings more, they explained it seems a sac was found on the spinal cord. They couldn’t get into how severe it was. We had so many questions, but he didn’t have all the answers. We were afraid of all things, stillborn, miscarriage, brain-dead, everything. He then explained that his medical judgment suggested worst case scenario ‘Parker’ would need a wheelchair. That was the first time anyone said his name. It made it real. He referred me to Winnie Palmer women and babies hospital, about 2 hours from home. I was able to get an appointment the following Monday. Making me already 23 weeks pregnant.
I didn’t even know what ‘sac on the spine’ was. I was clueless and nervous. I couldn’t catch my breath. I hugged my daughter and the rest of the day is a blur. The only thing I can remember is the countless hours of googling even though I was told not to. In the midst of searching for any ounce of hope I then came across myelomenigocele, a form of Spina Bifida that allows mothers to undergo open fetal surgery to prevent further damage. My sister-in-law found a group on Facebook with moms all over the world with children of the same diagnosis. It just so happens the mom who ran the entire page lives in our town; her son was a shining example of how one can’t be defined by their diagnosis.
The weekend came and went, and 5:30 AM Monday morning was here, we packed up and headed to Orlando for our specialist appointment. ‘Well this is the day’ I thought to myself ‘D day’ as the moms online called it, short for diagnosis day, the worst part of the entire journey they said. Upon arrival we signed in and waited for what seemed like hours when in reality it was only about 30 minutes. We began the day with an ultrasound that was as scary as it was beautiful. My husband beside me, I could tell he was just as nervous as me, so I closed my eyes to keep it together. After the scan the tech gave me a few profile shots and had me wait for the specialists. The nurse brought us into the office; the MFM and neurosurgeon went over Parker’s findings in great detail, never forgetting to say his name and never leaving me with an unanswered question. The neurosurgeon brought up fetal surgery and my first words were, ‘yes, that’s what I need to do. Let’s do it.’ Not knowing the extensive qualifications and testing that needed to get done before 25 weeks and 6 days of pregnancy. We were locked into our choice for fetal surgery, even with the time crunch the team proceeded. That same day we started with psychological evaluations, genetic counseling, blood work and an amniocentesis that was overnighted so we met the deadline for fetal surgery. We didn’t leave the hospital until almost 10 hours later. We got all of it done in record time and we got the approval for fetal surgery for November 13th.
With only nine days to plan a 21 day stay in Orlando and no time to think, I quickly got to planning every hour of my 3-year-olds schedule for the next 3 weeks. When I would be able to see her, where she was sleeping, who she would be with. I was busy, packing and planning, there was never really anytime to take it all in. Fortunately for me I ended up not having to do it alone as the compassion and generosity of others shined brighter than I could have ever imagined, especially at such a trying time in my life. With medical costs and going from two incomes to one a friend of ours created a Facebook fundraiser and within 24 hours our goal of $10,000 had been met. With donations from over 300 people it felt as if the support we were garnering from our community was just what we needed to help lift some of the pressure weighing us down. The outpouring of support reassured me I was making the right decisions and I could set my focus primarily on my children. Two nights before the surgery was the last night I was going to be able to snuggle and watch a movie with my daughter, just like any other evening, She fell asleep in my bed while I silently sobbed, I wasn’t ready to leave her for that long and I wasn’t ready to not give her my all. That morning I left for Pr- op with my parents while my husband got her situated with our family members.
Fast-forward to the morning of fetal surgery and that is when I can honestly say everything became a reality. All of the emotions I had suppressed made their way to the forefront the second I was wheeled away from my loved ones but it was also at this exact time my doctor became the shoulder I so desperately needed to cry on. Anesthesia took over and before I knew it I was back in my hospital room as if nothing had happened when in reality, a lot had. The surgery itself was extensive and consisted of a team of more than 13 doctors and nurses. Together our surgeons made about a 10-inch incision into my abdomen, which is then followed by a 5-inch incision into the uterus. Mock amniotic fluids are infused constantly into the uterus to keep the fluid levels safe for Parker and I. A sneak peek of parkers bottom and back are exposed and then repaired while still in the womb, after the repair the uterus is then closed again. To say I was overwhelmed upon being awake would be an understatement yet at the same time after all the emotional turmoil I had gone through up until this point it made the psychical pain a cakewalk. Personally after having gotten to this point I had told myself there wasn’t anything I wouldn’t do for my kids and if I had to do it again I would. The funny part about that is I would indeed be doing it all over again because the same incision they used for the fetal surgery would then become the one being used when Parker would be delivered via C-section.
After a successful fetal surgery I was given strict instructions on what needed to be done moving forward in order for Parker to hopefully make it to 37 weeks into my pregnancy. I was then sent over to the Ronald McDonald house for 2 weeks so that I was close enough to the hospital for ongoing evaluations. The mental toll this took on me was something I wouldn’t wish on my worst enemy. Not only are you in a fragile state but you’re also away from everything you know, in a room under 24/7 supervision without the capability of really doing anything for yourself. The time you do have for yourself is spent going over all the what ifs; wondering whether or not everything I had just gone through would be worth it. The time came for me to finally go home but that didn’t mean it was smooth sailing from here on out. I still had a daughter and husband waiting for me at home, responsibilities I felt I couldn’t ignore. How was I to be the best mother and wife I could be when I had such strict rules about bedrest? The answer just so happened to be, my husband and daughter. Everything I couldn’t do, they helped with. When I was down and at my lowest point it was the two of them who were there to pick me up and ensure me, together we could get through anything and everything. I was more than ready for my little Parker to be the first patient to make it to the scheduled due date. We were elated when we made it official with a date of February 6, 2019; 37 weeks exactly.
I ended up being admitted a week earlier after a quick scare because parker hadn’t gained weight since his last scan but that didn’t change the fact at the end of the week I would finally be able to have my son in my arms. The morning of February 6th started very early. In order to prepare for surgery number 2, I had to mentally check myself in just like I had done the first go around. I guess you would think after just having gone through almost the same thing two months earlier I would be a pro but to be honest I was more afraid than ever. This time the emotions got the better of me and I was unable to hide behind the mask of being a tough mama. With my husband by my side it was time to be rolled into the OR. Once there I found myself surrounded by several faces that were like family at this point in our journey, one nurse asked my favorite artist and we started singing Breathin’ by Ariana Grande to lighten my mood. This was while in the middle of the operating room. If that doesn’t tell you the type of amazing people who have taken care of me for the last 85 days, I don’t know what will. As my MFM proceeded with the C-section, I felt every single human emotion possible. Crying was the only thing I could do while my husband held one hand, my anesthesiologist with the other, and my coordinating nurse at my head; she became like a second mama to me.
I was so thankful all these people in the room invested their time and knowledge into my son, in helping give my son the best possible outcome in life. I heard my doctor’s voice over everyone say, ‘Ok Jessica, you’re going to feel a lot of pressure, Parker is here.’ At that exact moment they pulled back the curtain and laid him on my chest. I couldn’t believe my baby was here and he was everything I could have asked for and then some. 5 pounds, 5oz and looking exactly like his big sister; Spina Bifida became an afterthought and all I could think about was this little baby staring up at me, such a beautiful soul who I will become a forever advocate for. He was perfect to me and I could care less about any diagnosis he was given. After the initial excitement of Parker’s arrival we were given an exciting statement from his doctor. Of the 80 or so fetal surgeries he has performed for Spina Bifida in other locations, he would rank my son in the top 5%. The positive statistics didn’t just stop there. Within the 70 years that Winnie Palmer hospital has had a NICU, Parker was the first and only Spina Bifida patient that did not need to spend even one second there. Hearing such things after everything I had been put through made it all worth it. I did it, we did it and I am so thankful that I did. Two days after the C-section we were headed home as a family of four; ready to start the next path of this journey.
That brings me to today where Parker is a month old and continues to thrive despite the stigmas associated with special needs.
He is just like any other newborn baby, loves to eat, sleep and poo.
From the outside looking in you would never be able to tell anything was different about him. I only hope the older he gets I can continue to make him feel as though he isn’t different and if he ever does feel that way I want him to remember what it is we went through together.
It is an opportunity to share our story in the hope it can benefit just one person. Take the time to read between the lines and find comfort in knowing it is love that matters most.”
Do you know someone who can find strength or support from this story? SHARE this story on Facebook or Twitter.