A More Comfortable Ignorance

For a while I've been wanting to post the 3D ultrasound pictures of our little girl, but after our meeting at Seattle Children's I am not sure the pictures show an accurate picture of what our little girl has.  Maybe I'll change my mind later, but for right now you all get to be completely unaware as the husband and I.

First of all, let me express how wonderful Seattle Children's hospital is.  And I am not just giving high praise because we didn't have to wait in the lobby for more than three minutes. Nor did we have to pay for parking.  Everything about the experience gave us more peace--despite the fact that there are still so many unknowns about our daughter' condition.

Our appointment was with one of the cranio-facial surgeons at the hospital.  She was upbeat, positive, yet deeply concerned about our worries.  We told her about the information we had received, and we showed her the 3D images we had.  She reciprocated by showing us the images taken at the MRI.  All we had from the MRI was the radiologist's prognosis that the bump was an encephalocele, and the root of our biggest concerns.  As if looking down on her head, the surgeon showed us her brain in layers.  The varying layers confirmed what I stated in the last blog: that babygirl's brain appears to be intact with all the important parts where they should be.  This is important, because it shows that nothing important is being pushed into the mass on her nose.  If there is any sort of brain matter in there, it wouldn't be anything essential.

Additionally, the MRI pointed out that the mass was not protruding from the center of her nose; it is actually forming on the right side of her nose.  The 3D ultrasound images are confusing in that respect, because they make it seem that the bump is directly on top of her nose.  Most face-formed encephaloceles are directly in the middle of the face/nose area--like what we see in the 3D images.  The MRI is a little bit more accurate, and the bump is definitely coming from the side.  Fortunately, it doesn't seem to have affected her eye position, and hopefully her vision will not be drastically impaired because of it.  

So, we almost have a new prognosis.  I say "almost" because nothing can be confirmed until this little baby makes her appearance.  But we do know that we need not settle on the encephalocele diagnosis.  The surgeon stated that it could still be a number of things, and that--once again--we won't really know anything until she is born.  This means I may have to come up with a new blog...

I know that my husband and I would like to know officially what we are dealing with.  It is easier to plan things when one knows what to do.  Fortunately, the surgeons in the cranio-facial department at Seattle Children's do have a plan.  The doctor we spoke to is not the only one who knows about our daughter's condition.  The other cranio-facial surgeon, plastic surgeons, neurologists, and ENT surgeons ALL know about her case and have a plan.   The first issue will be her breathing.  If she can't breathe then the ENT will be first on the scene.  If she can breathe fine, then the plastic surgeons will take the lead followed by the cranio-facial, and then neurologists...  Anyway, needless to say, we have a large handful of very capable individuals prepared to help us.

There is something very comforting knowing that so many doctors know our baby and are already making plans for her before she even comes out.  It has brought so much peace to our minds.  Add to that the "knowledge" that her condition may not be as bad as we had been previously told.  While we may not have been overjoyed to the point of doing cartwheels, neither my husband nor I shed any tears of grief during our appointment.  We even felt comfortable enough to walk around the hospital for a bit afterwards.

And we are both able to once again feel the joy that comes with anticipating our own baby, but also the babies so many friend's and relatives are expecting.  Slowly but surely, we are healing.