Fetal Surgery- It’s Only A Day Away

Dinner with Mom at Cyclone Ayana

It’s my last day of true freedom. It’s all hitting me. I started dry heaving as I walked around Houston with my mom today. It’s funny what nerves will do to you.

Here’s the plan friends. I spent three days last week in the hospital at Memorial Hermann Children’s for my steroid shots. No one was with me so I was bored and basically just ate too much gross hospital food and had heart to hearts with the nurses and doctors. The highlight was I got to meet the mom who had fetal surgery for Spina Bifida on her daughter last Tuesday. We had been speaking online and her room was right down the hall from me. I went to see her every day and she tried to smile and grit through some serious pain for my sake. I’m seeing so much bravery in the women that go through this. It was fascinating to see someone experiencing this just one week ahead of me. Please pray for Christina and her daughter, Haven. She has been a big support to me.

My mom flew into Houston yesterday night so we got to have a girl’s day. We grabbed some Tex Mex for dinner and have relaxed in the comfort of our hotel room. I called one of the surgeons on his cell phone today with a few more questions because as we draw near to the surgery, more fears are arising. There are a few things they are doing differently with me because of my Diabetes and it always makes me nervous to have to go outside the box. For instance, they want to do quick blood draws on me to test my blood sugar during surgery so they are doing an Arterial IV line. They said these are painful and if someone accidentally puts IV drugs into an A Line, there is tissue damage and can even lead to amputation. Please don’t make that mistake medical staff! I’m putting so much trust into strangers.

Bryce flies into town tomorrow morning and I am getting admitted to the hospital around 11 am tomorrow. There are still more meetings and conferences to have with the doctors. The team has still not agreed on whether to cut my incision horizontally or vertically. There is some big debate on this. They are also deciding if they want to learn how to use my insulin pump during surgery or to move me to an IV drip of dextrose and insulin. Everyone is very nervous about my Diabetes control during the surgery and days to follow, including me.

Tuesday morning, I will be prepped and heading for surgery by 7 am. My mom or Bryce will keep you all updated on the status. The surgery is generally 3 hours but Caleb’s defect is more involved so they said it could be longer. I’m really hoping to wake up to good news. All I want to hear is, “Everything went to plan.” Words like that have become music to my ears the last couple years. The following few days after surgery will be very difficult.

I talk to moms all the time that have experienced this surgery and there is one common theme they discuss: pain. There is no denying this is one of the most painful things to go through. Unless someone has done a lot of research on fetal surgery, they have no idea the magnitude of it. Most doctors don’t fully understand. What makes it unique, is they do such an invasive procedure, cut your uterus in a very unsafe spot, and once sewn back up, your baby is in a rapid stage of growth. Most women deliver between 30-34 weeks because something emergent happens in their pregnancy. The luckiest ones make it to 37 weeks. My C-Section is scheduled for December 18.

I told the doctors that people keep comparing this to the pain of their C-Section or hysterectomy. They all look at each other and laugh and say they would compare this to going through open heart surgery, though probably more painful. Not to mention the intent of the surgery. My baby is having neurosurgery and he has to heal in my womb. They told me a C-Section will be the easiest thing I go through after fetal surgery. Ok I get it guys…this will hurt!

There are 25-30 doctors in the room to perform the surgery so in that sense I feel incredibly taken care of. With that many smart people in a room to keep Caleb and me alive, I know they will do a great job. Once surgery is over, there is a long road ahead. The goal from then on out is to stay pregnant as long as possible. Mothers say each day they get closer to their due date they feel so relieved. Most start celebrating when they make it 30 weeks! I will spend about a week in the hospital and then I’m moving into an apartment next to the medical center. I’m hoping after a few weeks there I can return to Phoenix, but it all depends on my recovery. My mom and mother in law will trade off caring for me. Bryce is going home the day after surgery to be with our boys and return to work. I wish he could stay with me longer.

Fetal surgery is so rare that it’s hard for most people to relate to. I’m so grateful to the moms I have met that have had it and the candid advice they have given me. It makes me feel less alone is this crazy experience. The love and support we received during my pregnancy with Miles ran wide. But I would say the support for Caleb has run deep. Friends, family and total strangers have invested their whole hearts into this experience. There must have been dozens of people involved in arranging care for my boys while I’m gone. This has undoubtedly been a community effort. Oh Caleb, how you have been loved before anyone could ever meet you!

If you are interested in learning about fetal surgery, there is a PBS documentary on Netflix called, “Twice Born- Stories From The Special Delivery Unit.” It has several parts and follows a few stories, so to save time I would recommend following the mother, Shelley. Her daughter is having fetal surgery for Spina Bifida.