Miracles for Miles: Fetal Surgery Week

There were a lot of conversations the night before surgery. I was admitted the day before since the team was anxious about my Diabetes management and wanted to go over everything in detail. I met with several anesthesiologists. Some made me feel comfortable, some made me feel more anxious.

“What if my body is paralyzed but my mind stays awake and I can feel and hear everything throughout the surgery?” I asked the question mostly joking but I had some irrational fears. Expecting to be laughed at, the resident anesthesiologist responded.

“Yes that does occasionally happen where people report that they remember their entire surgery. Anyway, let’s talk about tomorrow.”

“No, I’d like to revisit what you just mentioned…”

I don’t think you can ever feel fully prepared going in to a surgery like this. One where you have been repeatedly told that the recovery is extraordinarily painful and your child may not survive, or you may not survive. One where you are only their 40^th case in the last 6 years because it’s such a rare procedure. Where you are the first insulin dependent diabetic in the world to be getting the surgery so they are going to do things differently than usual. No matter how brave I felt, I didn’t sleep the night before surgery.

My surgery was delayed a couple hours in the morning because of another neurosurgery. Bryce and my mom were with me and the room seemed quiet and tense. Bryce came over to me and I started crying. I felt like no one was encouraging me or really acknowledging me. He got the picture and painted my nails bright pink. There was a lot of laughter seeing him attempt a manicure. During my manicure, a huge group of people came in to prep me. Bryce and mom had to leave the room so my epidural could be placed. The goal is to insert the epidural catheter before surgery. Toward the end of the surgery, they inject the medicine so when you wake up you feel no pain for the next 48 hours. The doctors kept reminding me that if I feel anything at all when I wake up then there is a problem.

As the doctor was stringing the catheter into my spine, I passed out. I’ve never done that before. Thank goodness a nurse was in front of me to catch me and lay me on the bed. I kept apologizing as I woke up and they assured me it’s pretty common because people have a drop in blood pressure during procedures. It was more of an exciting start than I had hoped for. Everyone was brought back into the room and it seemed like there were 100 people in there. I was given something to relax me and my memories got foggy as I was wheeled down to the OR. I do suddenly have vivid memories of being in the OR as they asked me to move over to an operating table. I lost count of how many people were in the room at that point but I already knew that over 25 people would be there for my surgery. The doctor put a gas mask on me and said I would be asleep soon. I felt very alert. I was looking around the room at taking everything in. It seemed like a minute passed and I grabbed the doctor’s arm. She removed my mask. “Why am I still awake?” I asked. “You will be asleep soon,” she assured me. That’s the last thing I remember.

During fetal surgery, I am placed in a very very deep level of general anesthesia. Not only do they need to put the baby to sleep but my uterus needs to be completely relaxed. My surgery was about 2.5 hours and went well. Caleb’s portion of the surgery was about 25 minutes while most of the time is spent cutting me open, removing my uterus and positioning it, cutting it open to expose Caleb (first he needed to be flipped from his back to his tummy), and eventually piecing my body back together. Caleb was measuring 1 pound 11 ounces the day of the surgery. The team updated Bryce through the ordeal and also text him pictures of the surgery throughout. My blood sugar stayed perfect the entire time.

I woke up in the recovery room in excruciating pain. I don’t remember saying much other than, “Pain, pain.” I remember people running around and the anesthesiologist team coming in to redo my epidural. I have no concept of how long that took but once it was working, I was a happy woman. We weren’t sure why my epidural didn’t work initially. I was told maybe the catheter migrated. I was given high doses of magnesium sulfate to prevent labor. All fetal surgery moms talk about this drug. It makes you feel incredibly hot, nauseous and terrible. It is very similar to having the flu. We kept the room at 55 degrees and it was intolerable to everyone but me.

Here is where the story gets interesting.

Around 1 am, I woke up in a panic. I could feel my epidural rapidly wearing off and all my feeling came back instantly. I began sobbing and Bryce woke up. I can only describe the next 3 hours as a scene out of The Exorcist. Since it was the middle of the night, the fetal team was gone and they suddenly had a fetal surgery patient with no painkillers on board and no working epidural and no orders written. Bryce, my mom and my nurse spent the next few hours trying to get the on call anesthesiologist to redo my epidural but he didn’t seem to believe it wasn’t working. The nurse kept pushing Morphine in my IV which did almost nothing. I could not wish pain like that on anyone. Every single minute felt like an hour. Bryce called a fetal surgeon on his cell phone in the middle of the night which the surgeon did not like, but he asked to speak with me. The second he heard my sobbing, he was giving the anesthesiologist a piece of his mind. I remember begging and pleading, sometimes to Jesus, sometimes to the doctor. I asked them to put me under. After two attempts at redoing the epidural, I was numb again. It was the longest 3 hours of our lives. There is nothing I couldn’t endure after that. Bryce was scheduled to fly home the next morning to be with our boys.

“Please don’t leave me,” I begged him. “I already moved my flight to Friday.”

We all fell asleep and exactly 2 hours later, I woke up to my feeling coming back again. No, this can’t be happening. I called for the nurse and more anesthesiologists came in, continually bolusing my epidural. “You should be paralyzed,” they would say. “Do you need proof?” I would cry hysterically. I’ll stand up and run around this room if you need proof!”

This time, they knew something wasn’t working right and they put me on a drip of Dilauded. I had never heard of this drug before but now I kindly refer to it as “my day on heroine.” It is essentially medical grade heroine and only used in extreme situations for pain. It wasn’t ideal for Caleb, but we had no choice and of course I would accept any relief. I barely remember the next 24 hours and I was hallucinating and could not hold a conversation.

My remaining couple days in the hospital consisted of more pain as I came off the drip, starvation, vomiting, enemas, and attempting to get up for the first time on day 4. My blood pressure ran dangerously low the whole week, around 55/30. It’s from the combination of drugs being given. Trying standing up after 4 days with blood pressure that low is…eventful. I was also not allowed to eat food or drink water for 4 days since the Dialuded was making me sick. If you wanted to see a hangry person, you should have visited room 544. The second they said I could eat, I went straight to a BLT. Also not a smart idea. Broth would have been a better choice.

My amniotic fluid levels were at a 3 (normal is above 10), but this is expected after surgery. I could feel every movement that Caleb made, tenfold. I also could tell he was in pain. He thrashed around like I had never felt before. It was heartbreaking because there was nothing I could do. Doctors seemed happy with our recovery and discharged me on day 5. They don’t want you sitting in the hospital waiting for a blood clot but it did seem early to go home. As I was being wheeled away from my room I pointed out if I were to ever be in this much pain for any other reason, I would be heading TO the hospital not AWAY!