Before beginning this post, I want to clear up one of the biggest misconceptions I have been asked about before and since surgery… “so, she’s all better, right?” People want definite answers, and I get that being someone who has always had difficulty with the grey area. Spina Bifida is not one for providing “definite.” First, the surgery does not FIX spina bifida. Her SB defect will NEVER go away. She was born with it. The surgery is simply to REPAIR her back in hopes that it will help prevent any further damage to her spine. Any damage done before (or during) surgery is done. You can’t repair spinal nerves. Although it’s extremely exciting that our baby girl has shown continuous movement, it doesn’t guarantee she’ll be walking independently because we aren’t able to tell yet what kind of sensation she has in her legs. If you’ve ever had an epidural, you may find it easier to understand. As the medication is wearing off, you begin to be able to move your lower half but that doesn’t mean it’s easy to walk. Think of it like that. So as AMAZING as this surgery has been – and we still remain hopeful that she WILL walk independently – we truly wont know the extent of her condition until she’s about two years old or at least a year when they should begin to show signs of walking.
After closing in on three weeks post-surgery, I have finally gotten my thoughts together enough to tell the story that many people are so curious about… and to also clear up a lot of misconceptions about fetal therapy. This will most likely be a long post as I will try to give as much specific detail as possible about my experience.
Tuesday, January 9th –
Around 10pm Darius and I said goodbye to his mom and drove over to the hospital. My doctors wanted me admitted the night before so they could begin what they needed to do as early as possible the next morning.
We entered the labor and delivery unit and Darius was told to wait in the waiting area while I completed registration and paperwork. I don’t know why my husband wasn’t allowed with me but that’s a tiny pebble compared to the rest of this. After paperwork, they took me back to the PACU (Post-Anesthesia Care Unit) to get myself settled. At this point, I had been under the impression the whole time that I could stay in my clothes and we were just sleeping in a room designated just for me for the night and that all medical related things wouldn’t begin until the next morning. I was wrong. I had to change into a hospital gown (but I made sure to keep my sweatpants on 😉 ) and they began an IV (which took two nurses – I have very stubborn veins). As the IV issue was happening, a resident anesthesiologist came in. I can’t remember his name but he was going over the type of anesthesia I would be receiving the next day. He told me I would be getting an epidural… and that was it… and that I would be under “twilight” but awake the whole time. Shocked, I informed him that was NOT what I was told at all. His reply – “oh, well maybe not, I won’t be in your surgery anyway.” Cool dude. Way to make me think I will be awake for the entire 5-6 hours of this.
I was beginning to get the impression that I would remain in this little curtained off room with another woman across from me all night by myself until one nurse informed me that my doctor said I needed my OWN room. Angels came down from heaven and began to sing at this point. I mean looking back, it would’t be a huge deal if I had to sleep alone, but we had planned for Darius to stay with me because we didn’t know what time anything started the next day, and I was incredibly anxious and wanted my husband with me. After moved to my own room, Darius was allowed back and we began to settle down to sleep.
Wednesday, January 10th –
At 4:30am the same anesthesiologist from the night before came in my room to administer my epidural. This part was easy for me as I had to get TWO epidurals when I was in labor with Lincoln. They started the epidural with saline to keep the line open.
At 6am they began to start the epidural a little more and at this point put in my catheter which was super uncomfortable to be able to feel. After this, my legs obviously began to go numb a bit although I could still walk. I felt like I was wasted in high heels trying to make it to the bathroom each time… which was also fun because they measured my urine each and every time I went. The purpose was to see how hydrated I was so they could determine how much fluids I needed. Magnesium was started shortly after this and I had already heard all the horrible symptoms I would be feeling. Magnesium is used to relax the uterus and stop contractions from happening. It is supposed to make you feel sick, like you have the flu or a hangover. I wasn’t allowed to eat or drink anything past midnight because they don’t want. you to have anything in your system to throw up. I actually had no initial reaction to the magnesium and didn’t feel any different… but just wait until after surgery.
My doctors had their “huddle” at 8:30am and wanted to begin at 9:00am. And boy, there they were in my room at 8:50 ready to take me to the OR. I gave Darius a kiss, and cried the whole way to the room. Fear had officially set in. I was awake for the entire prepping of me in the OR. They did this because they want the baby under anesthesia for as little time as possible. They started by moving me as a group from the bed to the table, to which I informed them that if they messed this up or showed any signs of me being a giant whale I wouldn’t eat for the rest of my pregnancy (haha). I received an IV in my left hand from an amazing anesthesiologist who did it in what felt like 10 seconds. Then, in my right hand I received an IV into my artery to monitor my blood pressure. Instead of a cuff which takes several seconds to register, this would provide them with my blood pressure every time my heart beat. It wasn’t painful because they numbed the area with a needle first, but it took about 10 minutes to administer so I could tell it would have totally SUCKED without the numbing medicine. I was given oxygen through my nose, not a mask. My legs went into stirrups which just made me feel soooooooooooooo cute and dainty and they began scrubbing, aka cleaning, me from the stomach all the way down. The anesthesiologist began poking me with something sharp all over to see what I could still feel, and although I told her I could still feel it completely (but not as sharp) each time, she didn’t seem too worried so I guess it was okay that I could still feel some stuff.
The curtain went up in front of my face around 9:40am and my two amazing doctors, Dr. Miller and Dr. Baschat began pressing very hard on my hip bones to determine the best entry point. The whole time my anesthesiologists are asking me about my favorite vacation and favorite drink to where we get into a very nice conversation about margaritas. My favorite nurse Megan yells for a “time out” around 9:45am. If you haven’t been awake in surgery this is when they yell out all your information to all the doctors and nurses. My guess is they do this to reconfirm why you’re there in case anyone happens to be in the wrong surgery… could you imagine?!
“This is Rachael Cross, 29 year old, female. Blood type A-. She’s here for fetal surgery for spina bifida myelomeningocele. We believe starting on the L4. We have blood prepared for both her and the baby in case of transfusion.” So weird to hear my story being yelled out as if I’m not there.
At 9:50am I was told to lean by head back as far as I could (they would be intubating me), and a mask went over my face. Two deep breaths later, I was OUT.
An incision was made from hip bone to hip bone – about 12 inches long. My uterus was removed – but remained attached inside of me. A big misconception is people think my uterus was like taken across the room or something. No, they place it on top of my stomach. Although this surgery was laparoscopic, that portion could only be done on the uterus. They still had to open my up and remove my uterus to do the laparoscopic part of surgery. Under ultrasound guidance, two ports the size of a pencil eraser were placed on the uterus. The ports were stitched into place and these ports are where instruments would be inserted to correct the lesion. Half of the amniotic fluid was removed and very carefully measured. Then, the same amount of gas was slowly pumped into the uterus to hold the shape of the uterus. Then, surgery was performed. The lesion was opened up and the spinal nerves that were inside the sac immediately collapsed back into the spine. Then, collagen was placed on top of her back and four stitches were used to close her spine. I was told our baby girl had the largest lesion they’ve worked on so far but surprisingly, with the last baby who at that point had the largest lesion, they received the best results. She had her legs crossed and one arm tucked under her butt. She was very difficult to position and each time would roll out of that position. To fix this, they titled the bed backwards so my head was closer to the ground to help keep her in place. She received a shot in the thigh to help “paralyze” her and keep her from feeling any pain. The surgery took roughly five hours and at 3:30pm, Darius received news that I was being stitched up and would be moved to the PACU.
My amazing doctors were able to take pictures of the baby inside of me throughout surgery. We were able to see her little legs, feet, hands and most importantly the lesion that started this whole journey! They may seem a little squeamish to you, but they are amazing to us and part of her story!
In the photos, anything that is grey and “curly” looking is the umbilical cord. Anything grey and “veiny” looking is the placenta.
I do not remember the tube in my throat being pulled out, but I do remember being told to wake up. I can only imagine the nasty face I had when they woke me up. It was like I was thinking, “I am so tired, why the hell are you waking me up?!” But then I registered where I was and immediately felt pain on my left side. I was groggy and couldn’t see right and also very disoriented. I remember being asked if I wanted to see Darius. He told me we had the same conversation for about an hour. He said it went something like this.
“I love you.” “I love you too.”
“I missed you.” “I missed you too.”
“Aren’t you glad you don’t have to find a new wife?” “Yes baby I am glad.”
Repeat 15 minutes later.
I was put on a NST (non-stress test) to monitor the baby’s heart rate for about two hours. She was doing so, so well. They were also monitoring my contractions. Anytime you mess with the uterus, it will begin to contract. I had about 7 total contractions while still on the magnesium. I remember my entire mouth being so dry. Between being intubated and the anesthesia and magnesium, my lips were literally sticking to my teeth. I couldn’t talk right and my voice was hoarse. I felt like my entire mouth was coated in sand. A nurse let me have some ice chips and it was probably the greatest gift I had ever been given. I can’t even begin to explain how awesome ice chips were in that moment. Shortly after, I was allowed to start taking sips of water which was the next best thing that’s ever happened to me.
I had to remain in the PACU until I had feeling in both legs again and I could move them, but my right leg was super stubborn and not responding. Thankfully, I had one nurse who, after four hours of being in there, finally allowed me to be moved to my own room with Darius.
Shortly after arriving to my new room, I told Darius an my nurse that I wasn’t feeling very well. I told them I felt like I may throw up. Keep in mind, I was totally still sedated and numb. I could barely talk let alone move my body. Those two began moving at the speed of sloth because right after I said that… here it was…. vomit, all over myself. I couldn’t move! So four times in a row just vomiting all over myself. It was HORRIBLE. And then, they had to rotate me to help clean me off! I was no help and I physically couldn’t be! I could hardly feel anything let alone sit up or help take off my hospital gown. I still feel bad about that but I’m hoping at some point in my marriage that when I tell Darius I think I will throw up that he really knows that means, I AM going to throw up NOW.
Thursday, January 11th –
Thursday was a bit of a blur. I was lucky to remain out of pain thanks to my epidural and my oxycodon. A lot of people ask if it was safe for the baby for me to be taking oxycodon. Well, ideally, no. But I was given this medication by my VERY knowledgeable doctors and surgeons. It’s not a drug you’d want to be taking for no reason at all, but under circumstances like mine, it was perfectly fine. I remained on oxycodon for about a week until only being on Tylenol.
We had our first ultrasound that day to check on the baby and it was so amazing. It was amazing to see that she was fine, it was like nothing had happened. But then, the obvious showed up. Her lesion on her back was GONE and it was like she never had it to begin with. She was also still moving her toes which was so exciting for us.
Friday, January 12th –
MY FIRST DAY WALKING! This was the BEST day! I had the best nurse who insisted I get the F out of bed and I couldn’t wait! My mom went down to get some lunch and when she came back I was sitting in a chair! I felt so proud of myself and being able to get up and stretch is something I will NEVER take for granted.
We had another ultrasound and everything remained awesome and. the same… and at this point in the game, the same is how we like things.
I will continue to have weekly ultrasounds until she is born. They are hoping over time to see two things:
- That her hips, legs, ankles and. toes continue to move.
- That her cerebellum changes from what they call a “banana” shape to a “figure 8.” This will show that the cerebellum is returning to its normal position. This will happen, if it does, way later in pregnancy. It will be a slow process. But watching the cerebellum is one of the big things that will help determine her need for a shunt after birth (the big thing we are trying to avoid).
Monday, January 15th
DISCHARGE DAY! I was sent home on Monday and it was the BEST feeling in the world. I can never thank enough the amazing nurses and doctors and surgeons at Johns Hopkins but there is no better feeling than your own bed… and being at home with your sweet baby.
I was placed on two weeks moderate bedrest after surgery. They wanted me up and walking here and there, but mostly laying down and resting throughout the day. Now going into my third week of recovery, I had permission to begin driving and trying to live a normal life again… including picking up Lincoln. Yesterday was Darius’s first day back to work and being alone with Lincoln was much more difficult than I had imagined. My organs are literally moving back to place and healing and that has recently taken the biggest toll on me. The pain is excruciating and sitting up is very painful because that pushes everything together. I am SO thankful for Darius and his people at work for being so understanding during this time and giving him the time off so he can help me heal and take care of Lincoln without disrupting his routine. I am hoping that within the next two weeks I will be back to my old self… except with a much larger belly!
Thank you to EVERYONE – family, friends, strangers near and far that have reached out or helped myself and my family during this time. You will never know how much we appreciated every single gesture.