34-Week Update

With the average post-fetal surgery baby being born at 34 weeks, we are super happy to have made it this far!  According to our doctors, every day we make it past 34 weeks is an awesome bonus.  I still plan on making it all the way to our scheduled c-section at 36 weeks, 5 days--June 7.  Yes, that is exactly TWO WEEKS AWAY!!!  Our whole family is SO EXCITED!

We have been doing our best to prepare the boys for Cedar's arrival.  Recently I got this book, and I keep it on the coffee table:

We have been pointing out the scar on the baby to the boys and explaining that Cedar is also going to have a scar on her back when she is born.  Now Miles comes up to me every day with the book and says, "Cedar has an owie" and points to the book.  I just don't want them shocked when they see it for the first time!

Right now I am still undergoing twice-a-week appointments.  On Tuesdays I have an ultrasound, a non-stress test, and a maternal-fetal-medicine appointment.  On Fridays I just have another NST.  The appointments can be long and tedious, but since I am on modified bedrest and can't drive myself anywhere, it at least gives me a place to go twice a week!

My twice-weekly recliner I chill in while doing the NSTs:

Some cute pictures of Cedar sucking on her hand during her 34-week ultrasound!  It was crazy!

Last week, we had a post-fetal surgery MRI.  Dr. Bolo (our pediatric neurosurgeon) now wants it to be standard at U of U to have one about 6 weeks or so after fetal surgery so they can see what changes have taken place.  

Going in for my third MRI:

We received the following results:

1.   First, the best news.  Cedar's Chiari II Malformation, where her cerebellum in her brain was sunken down and blocking the proper flow of spinal fluid, has 100% reversed.  Chiari II malformation can cause breathing or swallowing problems in kids, so having this completely reversed before she is even born is a fantastic blessing, and an outcome we were praying for after undergoing fetal surgery.  I have MRI pics of the before and after, but my computer doesn't like the file format, so I will try to add those later.

2. They can tell that her corpus callosum is underdeveloped in at least one section (see my last blog post for more about this).  She definitely has at least some of one, but it is very stretched.  There is nothing we can really do about this.  I am worried because the neurologist said that it is almost better to have no corpus callosum at all than to have a partial one, but in general I have heard that the brain works hard to form other pathways.  We have no way of knowing how exactly this will affect her learning/development or if it will end up affecting it at all.  They will be able to do much more detailed imaging after she is born, and especially when she is 1-year old and we have better clues to the rate of her development in many areas.

3. Her ventricles are, obviously, very large.  This might be the first time in our family that someone has had a part of their body called obese. Ha.  Because of their size and the way they are pointing (down I think?), Cedar can be at risk for septo-optic dysplasia.  If you google this, it looks really scary, but once again, it carries with it a HUGE spectrum of possibilities, and of course she may not even have it.  So, as I have had to do many times in the past few weeks with each piece of "potential" bad news, I decided to just put that out of my mind for now and worry about one thing at a time when she is actually born.

4. The MRI showed that Cedar has a tethered cord.  Sometimes when a tethered cord becomes symptomatic, spina bifida kids have to have it released through surgery.  Turns out though, all post-fetal surgery babies present with a tethered cord on MRI, so really this is nothing to worry about.  We will watch for actual symptoms of this when she gets older.  Some kids have to have multiple release surgeries for this, some never do.  We will see!

As you can see, this whole thing is full of scary terms that get thrown around followed by "but she might not have that" or "she might not be symptomatic," or "there is a huge spectrum for this issue."  Spina bifida is called a snowflake disorder because every kid has their own set of specific issues, and no two kids are the same.  There is something freeing in this, as it provides hope that your kid will be on the milder side of things, but it can also be difficult because you just WANT TO KNOW THINGS NOW.  Everything is "we'll see after she is born."  This can be hard to hear because I want to feel prepared.  

For now, my doctors are encouraging me to just enjoy these last two weeks of pregnancy and to put all the scary stuff out of my mind.  I am trying.  Daniel and I are almost done with Cedar's nursery (full post on that soon!) and I have been nesting like CRAZY!  When you're stuck at home you find there is a LOT to organize. Today Cedar's bunny and I tested out some of her gear:

We are so excited to meet this little girl in two weeks!  While this whole thing has been an emotional roller coaster, we know that Cedar was meant to join our family, and we will spend our whole lives working to be the best possible parents for her.