After many phone calls and a couple sleepless nights word finally came last Tuesday that our insurance company had approved our trip. Wednesday afternoon we headed out for a whirlwind 24 hours in Philadelphia.
We reported to the Children's hospital at 7:15am Thursday morning. After a quick overview of the day with our coordinator our first appointment was a detailed ultrasound which lasted close to 2.5 hrs. Of the two or three we had previously this was certainly the clearest images we had seen of our baby girl so that was a fun way to start the day!
After the ultrasound we met with the genetic counselor. She made a chart of our family history to help determine if there was anything in our families that would increase our risk for any particular condition (there wasn't). By this time it was about 10:45am so we were ready for a break. We had a few minutes to relax before it was time for the MRI. I had never had one before so I wasn't exactly sure what to expect. It was certainly a test of mind over matter. That tube is so tight! For the first few seconds I didn't think I was going to be able to go through with it. Then I just tried to close my eyes as much as possible to keep calm. It lasted about 45 minutes. I certainly would not want to do that again any time soon but it was manageable. I was so happy when they said it was over though!
It was now almost 1pm and we had not had any lunch. We stopped into the convenience store on the 1st floor to pick up a few snacks. Kenny had filled his coat pockets with snacks from home but our supply was dwindling! I was not allowed to eat much before the MRI for fear it would excite the baby and prolong the test....and we do NOT want to prolong the MRI. I even got Kenny in trouble with our "Mom" for the day when she caught him handing me a chocolate chip granola bar. I was just looking at it, I swear! Sorry Kenny ;o)
Next on the agenda was the ECHO. This ultrasound is a specific look at the baby's heart which lasted about 30-45 mins. You would think that just laying on the table wouldn't be too hard but after hours of testing I was getting antsy. Thankfully we are down to our last two appointments of the day! Our next meeting was definitely the most informational. We sat down with the high risk OB who went over in detail the results of all the tests we had just had. Using a diagram of the body she went from head to toe explaining what issues we know our daughter will most likely have and what issues are still a possibility. The information we were given was consistent with the preliminary testing we had done at home, just a little more in depth. I think it was beneficial to us to have it presented in a head-to-toe manner so that we could envision our daughter as a whole person, and not just the defect we had been focusing on for the last few weeks. She told us that on the Spina Bifida spectrum our daughter is consistently at the mild end. She will most likely have a few manageable issues but will certainly be capable of living a happy and fulfilling life.
Our last meeting of the day was with the Chief of Neurosurgery. One of the first things he said was "well, you're too good for surgery". Our daughter's diagnosis is mild enough that doing fetal surgery is not worth the risk. This is good news! We know that we have done everything we could up to this point. Now we can try to relax and get ready to welcome our baby girl home in a few months!
There are two key phrases I have learned go hand in hand with Spina Bifida. "Wait and see", and "but this could change". There is not a doctor on the planet that could predict with 100% certainty what our daughter will face in the years to come. We will arm ourselves with as much information as we can with the understanding that we will just have to hope for the best and take whatever comes our way!
