Fetoscopic Surgery: The Prep (part 1)
Over the course of the last 2 months, things have been a total whirlwind. From finding out we were having a baby boy to his diagnosis and options for treatment to how to pursue those options, we were under a pile of overwhelming amounts of information.
From the day we found out about McLane's spina bifida, we went into information collecting mode. I wanted to find out everything I could (don't worry, I didn't consult Dr. Google), plus figure out every option for treatment and what those looked like for our family. I, personally, was almost robotic in my approach, leaving out emotion as much as I could so I could have a clear vision into the path that made the most sense for everyone. I can't speak for Kellen, but that's how he is in general, keeping a good perspective with everything, being very realistic in his approach, and gathering all the information he can. This is why we found each other, I am the total opposite (however, I was more like him in these initial days).
We carefully navigated several doctors appointments, consultations, and tests, leaving each conversation more confident than the last, until were invited to an evaluation at the Texas Children's Hospital, where they pioneered the fetoscopic surgery technique (there are two options, open fetal surgery and fetoscopic surgery, I will explain the differences in another post). Here is a link to the Texas Children's Hospital's explanation of the fetoscopic repair.
After stressing about the many qualifications both me and the baby needed to meet in order to be candidates for the surgery (I had preterm labor and high blood pressure with the twins, which can disqualify you), we spent two days in Houston going through several appointments with the team, which looked like this:
Ultrasound (to check on spinal opening)
Fetal MRI (to check brain ventricle measurements)
Neurosurgery consultation (we found out we qualified for the surgery during this call)
Fetal intervention consultation (learned more about the actual surgery, confirmed what we learned from the neurosurgeon, understood the risks, and knew their team would take care of us in the case of an emergency delivery during surgery)
Fetal Echo (to check in on baby's heart, make sure there aren't any issues there)
Social worker consultation (helped chat about housing and other resources available)
Genetics Counselor consultation (asked if we were willing to be a part of a study to determine what role, if any, genetics play into spina bifida birth defects)
Prenatal Neonatology consultation (chatted about NICU a bit)
Prenatal Pediatric Surgery consultation (more about what it means to have surgery on a baby in utero)
Anesthesia consultation (this one was my favorite because we got into the nitty gritty of the surgery and learned about the process more, what the actual day would look like and it made me feel more confident in my understanding of everything, plus the anesthesiologist was funny!)
Financial Counseling (let us know our insurance was able to cover the surgery as it was deemed medically necessary and asked us any concerns about relocating for something like this)
That robotic approach I had faded once we had decided on our treatment path: fetoscopic surgery.
On January 31st, as I sat in my office trying to get as much done as I could in the 7 days we had before relocating our lives halfway across the country, I had a total meltdown. I couldn't shake the negative thoughts out of my head:
"Are we making the right decision?"
"Will my baby survive this?"
"Am I playing God by interfering with 'what's meant to be'?"
"Is it worth the risk?"
My mind flooded with every single negative outcome, and as Meredith Grey would say to Christina Yang, my thoughts got pretty dark and twisty. I had never felt this level of anxiety. I had never cried this hard. I felt as though I was helpless. I didn't want to pile this on Kellen (plus, he doesn't like to see me sad so he would have just offered to try and fix it haha) so I called one of my best friends who isn't as emotional as I am and was able to get my thoughts sorted before then talking to my mom. Those calls calmed me down and allowed me to get everything off my chest, even though I can't quite articulate all of the feelings I had (and still have).
My friend had made a great point. She asked, "have you cried at all since finding this out?". The answer was no. And I hadn't felt the need. This diagnosis was a challenge, not a tragedy, and crying didn't seem necessary past the diagnosis, but when thinking of the heaviness of everything, it was truly crazy how I separated the emotion from the motions and that is very unlike me.
So after a good cry, I finally came to terms with the fact that we were having surgery on our unborn baby and will be moving to Texas for the next 3+ months. Leaving our support system and normal life as we know it.
I have to insert this sidenote here to share a bit more about me and the anxiety I have. I actually didn't know I had anxiety at all until becoming a mom, and I will eventually share more about that in another post. But I have an intense problem with superstitions and jinxes, as if I say something out loud, it might come true. So I hold on to a LOT of my feelings and fears and anxieties, for fear that if I say them out loud, they will come true.
Here are a few examples:
This surgery. I felt like if I got my hopes up, something would come up and it wouldn't happen.
Covid. Even if I was as careful as possible, I would get Covid and not be able to get the surgery.
Our rental. If I made too many plans or gave out our Texas address, it would derail the surgery.
I didn't even allow myself to think about what recovery looked like for me, because what if I never got the chance to have that recovery because of all the things that could go wrong. Everything leading up to this surgery was perfectly timed. Literally everything. From our friends having just gone through this 3 months prior and guiding us through everything, including being able to rent the same house they rented the week after them (yes, they were released from the hospital the WEEK before my surgery). They're the reason we came to Texas and pursued Fetoscopic surgery with this specific team.
Everything worked out perfectly. I was waiting for the other shoe to drop and for something to go wrong. It was hard to celebrate the little victories because the next step would enter my mind and I would immediately think of the worst. I couldn't feel hopeful because I didn't want to get my hopes up only to be crushed.
So I felt like a robot.
Even on the day of the surgery, I was having a hard time believing it was real. I didn't feel anxiety though, but I felt like everything moved very slowly. I was carefully taking in every little moment as I checked into the hospital, not believing this was really happening. Some of the stories I had read had included moms who had come in to do their surgery but the baby had moved and their placentas were in the way, or other issues or complications arose from the surgery, or, heaven forbid, the baby had to be delivered during the surgery because the stress of the surgery was too much to handle.
As I signed the paperwork giving them permission to deliver our baby if necessary, my anxiety kept trying to creep in take over. There were so many things that could still go wrong, and while most of them were in the back of my mind, for the first time, I felt peace and comfort knowing I was doing the right thing and that whatever happened in the surgery was meant to happen and we would face that obstacle when we got there. My normal mindset to pretty much everything in life. I had been missing it for a while.
When I was taken back to get prepped for anesthesia, I felt like I was having an out-of-body experience. Everything was moving so slowly and I tried to absorb as much of the experience as I could. The anesthesia team was made up of 3 doctors and they were wonderful in keeping the mood light and explaining every step to me (multiple times) and allowing me to ask questions. They were pivotal in keeping my anxiety at bay and for helping give the unknowns a bit more clarity. As they gave me an IV in each hand, an arterial line (like an IV but it goes into an artery), and epidural, they continued to talk to me and keep me informed of what they were doing and the next steps.
As we were about to head into the operating room, I was given a "cocktail" through one of my IVs to help calm to nerves. Let me just say, I am happy I did that because I was totally chill as the doors opened and they transferred me to the operating table. I may have even been making jokes but I don't remember much. Even though I was awake as they prepped the room, that's where things became a blur. Then they gave me the general anesthesia to put me under (which also is passed along to the baby through me) and the next thing you know, I am being wheeled into my hospital room and reunited with my husband, 7 hours later.
I shared more about the details of the surgery in Part 2: The Operation ( sharing what exactly they did and why we chose surgery) as well as more about the recovery in Part 3: The Recovery, but this has been a crazy ride so far. I am shocked it's flown by so quickly, and thankful for that at the same time.
Thank you to everyone who has supported us through this, from family to complete strangers and rugby teammates/fans to softball teammates/fans, we have never been so blessed in our lives to be a part of the communities that we are. There aren't even words to express our gratitude, so for now, thank you, thank you, thank you will have to suffice.