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31-Week Update

Well, I have made it to 31 weeks!  Every week (and even every day at this point) is a huge win post-fetal surgery.  Making it past 30 weeks was already a huge hurdle to overcome, as 12.8% of fetal surgery patients deliver before 30 weeks...which is obviously not what we wanted!

Every week I go in for an ultrasound, a non-stress test, and a meeting with a Maternal Fetal Medicine doctor.  Starting next week, I will go twice a week for non-stress tests.

Pretending I love these non-stress tests...



Overall, things have been looking really good with baby Cedar.  For the past several weeks, her amniotic fluid has been between 14-16cm, which is fantastic.  Unfortunately, at this last 31-week appointment, her amniotic fluid had suddenly dropped to 9cm.  We aren't sure if that is just because of her positioning or what, as I am not leaking any fluid.  They will keep an eye on this next week, and I plan on drinking a TON of water this week, just in case it helps!

There are a few other issues that we will be keeping an eye on in the coming weeks and after she is born:

1. Her ventricle size.  Even before fetal surgery, Cedar's ventricles in her brain were considered large.  They started at about 17mm each.  After fetal surgery, they have continued to grow.  At this point, they are at about 23mm and 25mm.  Ventricles over 20mm are considered to be in the "severe" category. Having large ventricles is called 'ventriculomegaly.' Her head circumference is also measuring 36 weeks already.  We had a meeting today with a pediatric neurologist who clarified that having large ventricles is not same thing as hydrocephalus.  Hydrocephalus is technically when there is excess fluid in the brain that is putting pressure on the brain.  Once Cedar is born, she will be monitored to see if hydrocephalus develops.  We will likely know because her (already large) head will begin to grow rapidly, and the soft spot on her skull will likely be bulging.  At that point, the decision will be made to either do an ETV procedure or a shunt.  So, there is not much we can do about this issue until she is born.  The GOOD news, though, is that her ventricles have not been rapidly growing the last few weeks.  Her ultrasounds have also revealed that her chiari II malformation has started to reverse, which is something we were hoping for after having fetal surgery.  The doctors are hoping that the reversal of the chiari is what is causing her ventricles to slow down their growth...which would be GREAT!



2.  Her corpus callosum.  This is the part of your brain that connects the two hemispheres and helps them talk to one another, so to speak.  It is not uncommon for kids with spina bifida to have an abnormal corpus callosum--either a partially formed one, a very stretched out one, or sometimes missing one altogether.  The corpus callosum can also be extremely difficult to see in kids with enlarged ventricles--they block the view necessary to get a good look at it.  UCSF noted in their MRI that they were able to see at least part of Cedar's corpus callosum in the front part of her brain, but not her back.  University of Utah has been unable to see any part of her corpus callosum since we got back.  Again, there is nothing we can really do about this right now, and they won't be able to get good imaging until after she is born.  There are some learning delays and motor delays that can be associated with having no corpus callosum, or part of one, but again, nothing can be done right now.  Cedar will have access to all kinds of therapies after she is born that will help her tackle these types of issues.  We have decided to not worry too much about this, and just hold on to the hope that she actually has a full corpus callosum, and it is just too difficult to see it right now!   

Next week I have a nasty three-appointment week...although let's be real, since I am on modified bedrest I have NOTHING ELSE TO DO.  Tuesday is the ultrasound/nst/mfm appointments, Wednesday will be a meeting with the pediatric neurosurgeon, and Friday will be another non-stress test.  Welcome to my life now.     

Me at 31 weeks!


     
  
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