Well day two is done. What an overwhelming day of information gathering. We met with so many people today. First the neonatologist (premature baby doctor), then the maternal fetal specialist, then the nurse practioner for a physical, then the neurosurgeon, lastly the chief surgeon of the study as well as CHOP. We also took a tour of the NICU and delivery units here at the hospital. So we didn't learn a ton of new information today but we did learn a few things. The level of the lesion actually starts at L4, which was dissappointing news for us to hear. The hydrocephalus is still considered mild to moderate at this point and we were given statistics that with Grayden's level of lesion he has about a 70-85 percent chance of needing a shunt at some point following his birth. We heard all the scary details of the surgery and all of the possible outcomes. We also heard the possible benefits. So at the end of the day, we still qualify at this point with one tiny hurdle that I need to get over. I cannot swallow pills, and in order to be a part of the clinical trial if I were selected for the prenatal surgery I would have to take an oral medication four times a day to prevent my uterus from contracting. Sooo, this was obviously devastating to me and I feel extremely guilty. Needless to say I will be practicing with placebos tomorrow morning in hopes that I can overcome this. I don't know how I will ever get over knowing we were disqualified for something so extremely stupid. Austin and I have made the decision that if we can participate we will select to be randomized tomorrow. We feel at this point that it is the best chance that we can give this little boy and the risks at this point in our opinion seem to be worth it for the possible benefits. So wish me luck tonight that I can figure out a way to trick my mind to let me overcome this little obstacle.
This has been an exhausting day for both of us, but I feel like especially for me. I am anxious about the possible upcoming surgery. I also feel horrible that we may disqualify over something that is totally within my control. I am also missing Zander like crazy. I wish so much that we were not even in this position having to make such difficult decisions. I also wish that we could be home enjoying our son and happily anticipating the arrival of his little brother. This is harder than I could have ever imagined; however we have to continue moving forward taking one day at a time. We are trying to worry about only the things that are within our control, although this is such a hard thing to do (for me more so than Austin I think, bc he says I worry about everything:))
Wish us luck for tomorrow and if anyone has any brilliant ideas for me, then please feel free to pass them along.
Boulder Ridge Zoo
1 week ago