Roll With The Punches

July 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.   

Of course this is once again a blow along this incredibly difficult journey that has been filled with trial after trial.  I want to shout why me?  I don't understand.  This is NOT fair.  We've had our share of pain and horribleness.  It seems there is just no rest from one week to another, it just continue to rain on us week after week.  Instead I actually sit there and kind of just shake my head and sort of laugh in a semi-crazed way because I can't believe it.  All we can do is hope that this is not what it appears to be.

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. 

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  1. Sarah, I just wanted to drop you a note to let you know that I continue to pray for you and your family. I look forward to each blog post, which can't be easy to write sometimes.

    From one Mom to another, hang in there, I wish I could help you more.


  2. Hang in there! Hugs and love your way.

  3. If it isn't one thing its another. I'm sorry for the latest news, but I'm glad the hygroma shrunk too, if only so you can see this latest speedbump and find out what's going on there too.

    Prayers daily friend

  4. I don't care what the doctors say, I'm praying for a miracle!! Just too many things going on and I have to believe that the Lord has a big AWESOME plan. Look to Him, trust Him, Believe in Him...He knows what He is doing!!

    Stay strong my courageous Friend!


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