I'm sorry, I really don't want to be bitter about feeling like my life has been taken hostage by Maggie's issues. It's just that we spend so many hours in doctors' offices, and for what? Still no one can give us any clear answers.
Of course I am so grateful to the doctors here; they are all wonderful and doing so much to help Maggie. But Justin and I are seriously considering taking her to another city for further opinions about her torticollis, or whatever it is she has. We just aren't satisfied with the "treat the symptoms" approach when they don't really know what the real issue is. It seems like everyone is kind of shooting in the dark. I don't fault anyone for that - I mean, no one has ever seen a baby that lived after 15 weeks with no amniotic fluid and her neck is most likely related to that. I just want to do everything I can for her, and because her issue is so strange that might mean seeking a lot more opinions.
Maybe no one out there knows what this is or what to do about it, but we have to hope that there is a permanent solution out there. I have been doing research for a while about where to go and would appreciate prayers that God would lead us in the right direction. Also that Maggie would continue to develop normally and hit her milestones. It is so hard to watch and wait and not really know how everything is going to end up. How badly do I want her to have a normal, healthy life. I feel like we are so close, yet so far away.
As I've mentioned, Maggie is having her surgery on her "tethered cord" on February 18. Basically. the bottom of a normal spinal cord is loose and stretchy, but Maggie's is taut (could be related to not having any amniotic fluid). It has to be corrected because as she grows it will get tighter and start to affect the functioning of her spinal cord. So during the surgery the doctor goes in and "detethers" the cord. Statistically Maggie will not have any long term effects since we are having the surgery so early.
Even though the doctor assured us that this is pretty routine as far as neurosurgery goes, of course I am still very nervous about it because a) they are operating on her spinal cord; b) she doesn't do well under anesthesia; and 3) nothing is ever uncomplicated for her (think back to the g-button surgery that was supposed to help her feeding and weight gaining issues and ended up making her reflux 10 times worse).
So I humbly ask for prayers that she will do well under anesthesia, have zero complications, and that the surgeon's hands will be guided by the Lord to do just what is needed and do it seamlessly. I am also asking God that fixing her spinal cord will perhaps ease whatever pain or tightness she is feeling in her neck.
Personally, I am praying for the strength to carry on with this great responsibility that God has entrusted to me. Because right now I am feeling the weight of it so much more.
Let us then be up and doing,
With a heart for any fate;
Still achieving, still pursuing,
Learn to labor and to wait.
From "A Psalm of Life"" by Longfellow