Roll With The PunchesJuly 14, 2011
Another doctor appointment today... another look at baby girl. Another set of surprises, that very vividly illustrate that I am NOT in control of any of this.
I guess I'll say there is obvious good news, and then there is what I'll call new news at this point.
In the good news department is that my vitals remain stable. My blood pressure was 115/81, and everything else with me seems normal for a 28 week pregnant woman. My doctor actually said her feet have more swelling in them than mine do! At this point forward, I will be on weekly appointments, as she wants to continue watching me closely.
The other very good news, is that the hygroma has finally shrunk! After staying exactly the same for 9 weeks, the fluid filled portions have almost entirely disappeared into just some extra skin hanging around the neck! This is great and surprising news for us and our doctor. I have prayed - and I know I'm not the only one - every single night for this to happen, and it finally has. I wish I felt more elation in this, but it is tempered by the new discovery today.
The shrinkage of the hygroma has now revealed something that was underneath it – a projection off the back of the baby’s neck that appears to be some sort of soft tissue, versus an empty space that was fluid-filled. My doctor is a little mystified as to this new discovery. This is not a normal presentation of a cystic hygroma. It is possible that this is what is called an encephalocele – which is a rare disorder in which the bones of the skull do not close completely, creating a gap through which cerebral spinal fluid, brain tissue and the membrane that covers the brain can protrude into a sac-like formation. This is a very serious condition, that often does not come with a good prognosis – both short and long term. As with everything we’ve been told before, babies with encephalocele have a high rate of inutero death - what's new, right? However, our doctor is puzzled as the baby’s brain appears very normal, and has since the beginning, and the cerebellum which is at the back of the brain right next to this protrusion is “perfectly formed” (her words not mine). Many times with an encephalocele the brain tissues would show defect or compromise. There are encephaloceles that contain only brain fluid versus both fluid and brain matter. Those do have a better prognosis. Of course it may not be an encephalocele at all, and just may be some sort of excess tissue. Right now the baby is in a position that makes it impossible to know if this is actually an encephalocele. We may get more information at our next appointment, or we may not know anything else until birth.
I guess either you roll with the punches, or the punches win and beat you up. I'd be lying if I didn't admit that the punches at this point are leaving me a little black and blue.