The Surgery and Move

When we decided to go through with the surgery, we were told over and over about the high risk I would be taking if I had the surgery, but the benefits just outweighed the risks. In 2010, CHOP did a study to prove how beneficial the in utero surgery was.  It concluded 12/07/2010 (consequently one year prior to my surgery). Of all the surgeries, none of the mothers died and only one baby didn't make it. 100% of the babies had significant improvement with the hindbrain herniation just weeks after and shunting (of the brain) of only 50% (as opposed to almost every child needing a shunt with surgery after birth).

We told our family when we got home from the testing and our friends the next day. One of the requirements for the surgery is to live no more than 25 miles from CHOP. We lived 72 miles and were told we had to relocate. That meant figuring out who would watch the house and our current children aka our puggles Kloe & Levi. Having such an invasive surgery also meant needed a constant support person in case of an emergency. Brian, of course, would not think about not being with me and basically quit his job for 4 months (his company was so supportive and told him his job would be waiting when he got back). I had to figure out what to do about my job, pack for 4 months (taking in consideration my growing belly) and we had a total of 14 days to do all this. Freaking out is an understatement at this point.

My mom and little sister agreed to move into our house for the duration to take care of the puppies. Leaving the dogs was and still is the hardest part of all of this. We were put on the list to stay at the Philadelphia Ronald McDonald House but wouldn't know until I was discharged from the hospital if we had a room. We got in touch with Hosts for Hospitals as well which is a company that places patients into rooms, apartments or houses that people donate until they can go home.

After a day of pre-op, we stayed the night at a hotel so we can be at the hospital early for the surgery. I'm not going to lie, it was a hard night. I tried to not get upset but I kept thinking about how long we had to be away from home. 4 months is a long time.

The surgery was scheduled on my dad's birthday, December 8th, 2011, and was not without its share of drama. I am NO fan of needles. The nurse placed my IV needed next to be on the bed and I was already on the verge of passing out. When that passed and the IV was in, it was time for the epidural. Again, I was extremely close to passing out but managed to stay awake. I couldn't feel the numbing or tingling I was supposed to but no one seemed worried. Finally they wheeled me into the O.R. and I passed out.

Basically, the doctor cut into my stomach and then my uterus. They flipped the baby over to expose his back and fixed the defect.  Both me and the baby were knocked out and I would be overloaded with Magnesium Sulfate after. The Mag would make me really hot, red and miserable but was the only thing to keep me from going into labor. After the surgery I was on the Mag for 24 hours with no food or water. Then I switched to another drug to prevent labor and have been on Nifedipine every 6 hours-until the baby arrives. In other words, I could literally have gone into labor the day of surgery or any day thereafter.  There is a huge risk of my uterus bursting at any moment and was put on very strict bed rest for over 3 weeks. When I got off, I was allowed to walk around the block-that's it. For the most part, I had to use a wheelchair and still do for anything too active (like going to the museum or the mall).

I don't remember much when I came out of the surgery. I was brought right back into the room and looked like a ran over tomato. Brian said I was yelling about being in pain. Apparently the epidural wasn't in correctly. After 3 more attempts after the surgery, it was finally in. I was so hot and thirsty I couldn't believe it. I, however, just wanted my pink socks on because, of course, it matched my hospital gown.

The next few days passed slowly. Eventually I was able to hold down ice chips, then water, then food. Brian slept sitting up in the chair next to me the first night. I had to convince him to sleep in the fold out bed the 2nd night because I felt so bad. He said he didn't want to be that far away in case something happened. I wasn't able to use my stomach muscles so it was pretty painful. My first trip to the bathroom was not the most fun, but I made it through. Overall, I have to say, the surgery wasn't as horrible as I thought it was. It was definitely not a picnic but I expected much worse, and I'm happy I did.

The surgery was on a Thursday and we were discharged on Monday. The RM House didn't have a room so we stayed with an older couple. Host for Hospitals set it up and we stayed in an extra room in the couple's apartment. The view was amazing. I, of course, was bedridden and saw little of it but we were happy to have a free place to stay. Wednesday we got into the RM House and have been here since. It's a $15 a day donation and sure beats staying in and paying for a hotel.