Forgive me in delaying Sloane’s story. I’ve realized so much of this is still so raw along with the fear and anxiety because of what we walked through with her and continue to walk through. Let me be VERY clear we are the lucky ones because there are many others that aren’t here to write a story as beautiful as ours. I tell the story because it’s painful, raw, full of fear, full of emotions, and in truth it’s real life. As I’ve gotten older I’ve realized everyone has a story worth hearing, but many of us don’t bother in finding out. Instead we are so wrapped up in our own lives we don’t even notice the person next to us who is struggling with addiction, who’s child is sick, or their spouse lost a job that they desperately needed. Instead we focus on our own problems never seeking out how to help a friend in need. I’ve also learned that sometime lending an ear, hand, or shoulder, makes our very own pain or struggle seem so much less painful. Why is that, maybe because we allow the focus not to be on us for once. Through Sloane’s story I’m pulling back the VERY layers that left me crippled in fear for years. Without facing them, walking through it, or understanding that purpose comes through our pain I wouldn’t be writing these words. So without further ado and I do hope I am much better this month in continuing our medically complex journey but if life gets in the way and I find myself enjoying the moments I’m going to do that to. Enjoy the moments because life is fleeting and when I’m hopefully old and grey I can look back and remember all the smiles, despite the anxiety, remember the laughter that filled my house despite the worry of the next scan, and say I pushed past all of that and I enjoyed the everyday moments that make up a lifetime of memories.
Waking up the day after our initial scan was a blur. I remember thinking everything that happened the pervious day was a terrible nightmare. A nightmare that I realized I couldn’t escape. Looking back it was like living in someone else’s reality. As much as I wanted to stay in bed and process what happened, life keeps moving. Graham needed to get to school, we both had work because we had bills to pay, and we had NO idea what was next so we needed to work while we could. I was working from home a little bit by that point and knew going into an office wasn’t going to work in fear of having an emotional breakdown while on a conference call. I also couldn’t be alone in my house with my thoughts, so I went to my parents. They lived 10 minutes away at the time and I knew I needed to be with someone.
So I packed Graham up for school, my work bag, and headed over to my parents to work. I seriously worked like nothing was happening, in between calls/meetings I would sob to my parents trying to understand what was happening. I think we were all in shock. We left the doctors office without knowing much. Of course we started googling and we honestly didn’t know what we wanted her diagnose to be. At first I was hopeful it was just a mis-diagnosis but as I started to replay the words and search on the internet what it could possible be - we were still at a loss. We knew we were waiting to hear from the MFM doctor when my MRI would be in hopes that it would tell us more. We also went in to to see my doctor and started to talk through what this could be.
There were sooo many conversations that led up to us leaving Charlotte but the jist of it was - no doctor in Charlotte knew what they were dealing with. After looking at the scans, my doctors said we would try and do a c-section and meet with a brain surgeon here. He made one comment that stuck with us and probably helped direct our path. In the midst of our googling, we found children hospitals all over, Philly, Cincinnati, Boston, and Duke. He said don’t bother with the small ones if you’re going to leave - you either “GO BIG OR GO HOME”. That was it. As much as we wanted to stay in Charlotte to be close to our home, we left it up to God to decide our path and this is what’s crazy. He confirmed everything that we were thinking in one phone call. In between the googling, trying to decide what to do next, scheduling a c-section in Charlotte, meeting with a brain surgeon here in hopes they knew what they were doing. We started to read about Exit Procedures, we mentioned it to my doctor and he never heard of it. There were 3-4 hospitals that did this and it was known to save the unborn’s baby’s lives. I won’t go into the details but here’s a link about the procedure. https://www.chop.edu/treatments/ex-utero-intrapartum-treatment-exit-procedure
In between all the talks with my doctor, our parents, and now waiting on the MRI results we decided that if we needed to go elsewhere we would. As terrible as it would be to leave Graham we felt we needed to give Sloane every opportunity to survive. That was the first part. I had my MRI on a Monday and on Tuesday morning at 8 am the MFM doctor called me with an update. I can’t remember if she confirmed the mass on Sloane’s head was a teratoma but she said I’m sending your scans to the Children’s Hospital of Philadelphia to see if they can help because no one in Charlotte has dealt successfully with what we are seeing. I hung up the phone and figured ok, let’s see what happens. I’m not joking, at 8:17 am (17 minutes later) the Fetal Center for Medicine from Philadelphia called my cell phone and said “We just received your scans and you need to get on a plane to Philly today, we can help”. First I was in shock I received a call so fast, second I wasn’t in the mindset to leave so I pushed back and asked for a later appointment saying we have a two year old who needs to be taken care of and the women on the other end was insistent……She said you are in risk of going into labor and if you go into labor your child won’t survive. I hung up the phone, called Jay and told him we had to go, called my mom and told her what happened and while we were on the phone she booked us two flights to Philly that afternoon. We coordinated everything we could in the shortest amount of time and headed to the airport around 3 pm. All we knew was that we had 8 hours of appointments the next day. In between the crying, packing a bag for three days, calling my boss, saying goodbye to Graham and the worry I think I was going through the motions. I just kept praying for whatever was on her head to be gone by the time we showed up. That whatever it was it would be ok. I literally ran to the doctors to get a note that I could fly and he asked me, why were we leaving since it was such a drastic change from trying to make it work in Charlotte. I said at this point when CHOP gave us hope, we had no choice but to hear them out. We owed it to Sloane, to our future family, and to our sanity to at least go somewhere that could tell us something more than, “we will try”. I had no idea when I boarded that plane I wouldn’t return to Charlotte for almost three months.
