So last time I left off with that we decided we wanted to get evaluated for fetal surgery. When I made that decision things seemed to happen at warp speed. I mean there was a lot I had to get done in a short period of time to even make the evaluation happen. When your in the military there is a whole army of people that need to help you get there (pun intended).
I had to:
Get an amniocenteses done and sent away for screening, get a referral up to CHOP (Children's Hospital of Philadelphia), get approval from insurance, get all records transferred, get approval from the military and our commands (since my husband is in the military he needed all the approval from his side as well...hello double the paperwork!), and once that was all accomplished don't even get me started on the actual military process to get flights and hotels and approval and government charge cards and the list goes on.
For those of you who aren't as familiar with the military lets just say getting this done takes a lot of help and relying on others to get you there. Did I mention we had all of like 1 week to get these tasks accomplished? Remember that short window I mentioned before, time was crucial. I forgot to mention I also had to fly my mom out so there would be someone to take care little R. And yes there was more paperwork involved with that process as she needed to have access to the military base in case of emergencies while we were gone (ah military life). The logistics to even get us to Philadelphia were overwhelming and the whole time I was still trying to wrap my head around the idea of Spina Bifida.
When we finally had everything taken care of it came time to actually leave. This was the first time I had EVER left little R for more than 12 hours. You guys when I put him to bed the night before we left I bawled my eyes out. Oh and there was the whole flight debacle causing us to almost not make it at all, but I won't go in to that. Lets just say if my husband wasn't there I wouldn't have made it.
Now it was time for the actual evaluation. If you are going to be evaluated be prepared it is a LONG day. I mean like 10 hours of meeting all the departments, scans, MRI's and the works. When your like 24 weeks pregnant it really takes a toll on you. I was exhausted. The day was going along great. I had completed the MRI (which honestly was the most nerve racking part for me), an ultrasound to look at babies heart, meeting with social workers, and meeting a genetic counselor. Then came the "big" ultra sound, the one that looks at all the anatomy especially the defect. It was over 2 hrs I think. I mean they looked at every little thing possible. As fun as it was to see little baby K up close and personal for so long I was just ready to be done with it all. We had arrived just before 7am and it was getting close to 4pm by this point. So when we were finally done we got to meet with one of the doctors to go over all the results from the day.
I remember they pulled us into a room and started talking about everything. Just throwing information at us. Then he began explaining specifics with our little K and what we could expect. I mean we talked nerves and the level of involvement, complications, risks and benefits. If I didn't have some medical knowledge I would have been so lost! Then it happened the world stopped for a moment. After all the talk, everything we had been through that day the doctor said "due to the fact we found some slight agenesis of the corpus colosum you are NOT eligible for fetal surgery." Wait say what? I don't understand all day they had been telling me how great everything was looking and how good of a candidate I was because I was so healthy. It was like a room of glass shattering all over again. We talked some more but eventually there was nothing left to say it was over. The doctor left the room but said we could stay there as long as we needed to collect ourselves. I just cried, I sat in the empty room with my husband and cried. I didn't know what to think in anymore. We had held on this little bit of hope we could "fix" some of the problems. I know fetal surgery isn't a magic cure all, I am not that naïve, but when you have something you think can help reduce possible complications you hold on to it and you hold on to that hope tight. Yes I still believe in fetal surgery, but it wasn't meant for us. The next few days were tough. There was a lot of crying and just quiet moments. But returning home to little R was honestly the best feeling. I mean if I had gotten fetal surgery I would have been on bed rest in Philadelphia for almost 3 months! So if there was a bright side to it all that was it.
So we returned home and just tried to figure out what was next. I still couldn't deliver at our military hospital as they didn't have the pediatric specialists needed to care for little K. I had to drive all the way to New Orleans to meet new doctors and specialists. I had to figure out our new plan of attack and prepare for it all. Then just when I (and you) thought my fetal surgery saga was done there was one more little twist!
Until next time...to be continued!!
