To Know or What Not to Know. That is the question

During these past few weeks, my husband and I discovered that we deal with mourning in two entirely different ways.  I tend to recover quickly by grasping on to the little things I do know, and then telling myself that everything else will be okay.  This helps me move on, but as I've discovered during this process is that it hasn't fully prepared me for more bad news.  My husband takes longer to feel at peace because he tends to focus more about things we do not know...the things that could be a lot worse than our doctors are/aren't telling us, and he worries and feels depressed about the unknowns. This is not to say that I don't feel sad or worried about things we don't know.  I tend to worry about when we can take her home or if we will be able to hold her after she is born.  He worries if she will be a vegetable (for lack of a more sensitive term that I'm sure exists, but I can't quite think of it.) However, because he has thought about all sort of terrible scenarios, he is much better at asking the doctors questions.  I can usually wait until the next appointment for news (and hang out in my happy optimistic place), but my husband will call up our doctors for answers he needs.

We were instructed not to turn to the internet for information about the Encephalocele.  I would recommend that advice to anyone diagnosed with any foreign ailment.  Instead of just doing a broad Google or Bing search, we were advised to go straight to the children's hospital websites for the most accurate information.  This is not something we did right away.  I was way to scared to leave my happy place and learn anything more horrible than the news we had just received.  But eventually we looked up those sites because my husband was having a tough time dealing with the lack of knowledge we had.  I'll put some links to the side so you can read up on our daughter's diagnosis.

So now here are some things we know, and also the things we won't know until she is born.

We know that we will have ultrasounds every two weeks until she is born.  Pretty soon we will know the date as the doctors want to due a planned C-section to make sure her nose does not get ruptured in the birth canal. We don't know if she will be able to breathe through her nose.  And if she can't do that, then she can't eat...this is leading to her spending her first days on earth in the NICU.

We do know that an encephalocele happens in one out of every 10,000 births, so it's not very common. They normally  happen if the parents have a family history of spina bifida or anencephaly--which we don't. As I mentioned in the previous post, I had an amniocentesis to determine if the encephalocele was chromosomal and if she had any other syndromes attached to this defect.  We finally have all of the results back, and we can very happily say that her defect is not chromosomal nor does she have any other syndrome.  This boosts her chance for a successful recovery, and it means we won't likely pass it on to her future siblings.  This is just a random defect. 

An encephalocele can either happen on the back of the head or in the sinus area, like the one our babygirl has.  The good news is that usually the ones around the nose have a higher chance of survival and successful recovery after surgery.  Babies born  with fluid-filled encephaloceles have less developmental issues than those whose tumors are filled with actual brain matter.  What we do not know is what our babygirl has.  We won't find out until our consult with the neurologist, or until she is born.

Our OB recently reminded us that previous ultrasounds have shown that her brain is symmetrical, so that leads him to think that the encephalocele is just fluid.  You can't imagine the world of good that reminder did for our spirits. My husband and I have felt so much lighter and calmer after hearing that.  I have tucked that news into my happy place.      

The doctor also put her nose defect into a better perspective for us as well.  If it hadn't been for her nose, we would have never have had an echocardiogram, and we would not know about her heart defect. 

We do know that we are surrounded by loving family and friends, and a supportive medical team.  It helps us to know that we do have people out there rooting for us and our babygirl.  I know she feels it too.  She has been so active lately, it makes me a very happy mama.