Wednesday, November 16, 2011

Reading between the lines...

So we're now heading for ultrasounds every two weeks. Where most people would complain about having to go so often, I'm super pumped.. I love getting to see my little guy so often! We have a ton of ultrasound pics we get like 7 every time we go. I'm going to have to start a photo album for just his ultrasound pics.

Speaking of doctors appointments, i know I briefly mentioned what our little guy is going through but I thought I'd go into detail for those of you who were like me in the beginning of this process who don't have any clue what this all means.

So little Eddie has Spina Bifida there are lots of different factors that goes into this diagnosis. Keep in mind I'm not a doctor this is just the information that I've gotten and understand.  Spina Bifida literally means opening in the spine. When the baby is in the first like 4 weeks of development a portion of the spine doesn't close. This can happen anywhere on the spine (Fortunately, this has happened very low on our baby's spine) The placement on the spine depends on the baby's level of physical issues. Basically the lower the better.  From what it sounds there are two types of openings. One where the spinal cord is in place with just an opening which can or cannot be covered by skin. One where the spinal cord is pulled out a bit and could be tethered. Our little guy's spinal cord is the latter and has no skin covering it, so there is just a very thin membrane covering the opening. Once the baby is born the surgeon will immediately preform surgery to untether the spinal cord and close the opening.
With the spinal cord being pulled down and/or tethered this affects the brain also.  Where the cerebellum and brain stem are pulled down.  This affects the spinal fluid circulation in the brain and causes the ventricles to expand (possibly needing shunt placements after the baby is born).  This is called Chiari II Malformation.  This is the part that is kind of the "unknown" for us at the moment. They can see and monitor the babies ventricle sizes through MRI's and ultrasounds. The trouble with the Chiari II is that we won't know what kind of affect it has until the baby is born. It could range from not needing shunts and maybe some learning disabilities to not being able to swallow/breathe on his own. 
Good news is that at the moment his ventricle size is about a 1.4 and a normal baby is a 1. This has increased though and could and probably will increase before and after he is born.

Are you overwhelmed yet? We were too at first, but we've learned that this is a "read between the lines" kind of situation. In between all that overwhelming info are all these positive tidbits of news for our little guy! Low opening, small ventricles, the fact that he is constantly boxing and kicking my stomach, perfect feet (clubbed feet comes with SB), so on and so on.. So as I update this blog after each appointment and if I stop reading the positive in between the overwhelming, please REMIND ME!! I've posted two pictures of our little guy, one is his spinal opening, I've circled the "defect" (<--- BTW I hate that term, my little guy isn't defective, he's not a battery operated toy that doesn't work.) I realize sometimes it's easier to see something to understand it. The other is a 3D pic of my adorable little guy. I know it probably just looks like a brown blob but we swear we can see so much of him and we think he already looks like Bella :)


  1. stay positive kristin! i know it must be hard. But when you stay positive and have positive energy around you miracles really do happen! xoxo

  2. Lol he does look like Bella! Beautiful.

  3. Hi Kristin,
    I saw your blog on the United by SB site.
    I just wanted to say Hi. My son Nick just turned 2.
    It looks like the 'lesion' - I know not much better than 'defect' is low, which is great!
    Love the pictures!