High Risk Specialist Appt: Update

Today we had an update appointment with our High Risk Specialist... that I felt was completely pointless.

One of the hardest parts about having a baby diagnosed with SB is that after you've figured out about how severe the defect is (even though nothing is for sure) there is really nothing else they can tell you.

Noah doesn't have clubbed feet yet, or a lemon shaped head. His fluid in his brain and spine is stable too. These are things that right now we are feeling extremely blessed about, but they could still change and happen. Even though it's a happy thing for right now, nothing is set in stone. Even after he is born his function level could change many times.

I'm not very familiar with Down Syndrome (even though I had an Uncle who had it) but from my understanding.. once you get the diagnosis... you can find out pretty much what to expect for sure. As far as what your child will act and look like. I know when you have a birth defect anything could happen...there can always be other symptoms that occur.

But it seems like nobody really knows about Spina Bifida. It's kind of a gray unknown defect. I'm so thankful for all of the technology that we have to help babies born with these defects. But doctors don't know for sure what causes it, and they can't predict the outcome for children specifically because every case is different.

Therefor, these appointments are starting to sound like a broken record. My specialist's theory as a doctor is to give the patient "realistic expectations". While I respect this, and prefer it to being filled with false hope..my biggest challenge is to keep my realistic expectations and not let it mess with my anxiety. Finding the perfect line between realistic, yet hopeful without getting depressed or becoming overly confident in something you have NO idea the outcome is very hard.

But things emotionally for me have been much better lately. It's just starting to feel like it's a part of our lives now and we'll take it. Feeling Noah tumble and roll makes every challenge we'll all face together worth it. Maybe it's a good thing that nothing is for sure, leaves room for some hope. And even though I know I shouldn't get my hopes up too high, it's still nice.