10 Days and Counting...

Welcome to our blog! Russell and I hope that this will help our loving friends and family keep up with what's going on with us and with Emma as we approach the big day - March 16. For this first blog, I'll go ahead and explain what's going on with us and our baby, just to get it out of the way for those of you who don't know or aren't clear.

On October 9, 2009, we found out that (1) good news: we were having a baby GIRL! and (2) bad news: she has a birth defect called spina bifida. There are different types of spina bifida, and she has the most common, yet most severe form. Basically, during the first 28 days of her existence, she was a plate of cells that rolled up into a tube (the neural tube). However, at some point towards the end of that rolling process, the bottom of the plate did not finish rolling up, and her spinal cord is still flat to this day. Because it has been flat, nothing could form properly on top of it - vertebrae, tissues, skin, etc. When she is born, her spinal cord will be completely exposed. This will require neurosurgery in the first 24 hours to finish rolling up the cord and then to close everything on top of it. Nothing can be done to retroactively fix any nerve damage that has been done due to the spinal cord being exposed. She will not exactly be paralyzed, but there can be varying degrees of muscle and joint impairment. Even when she's born and the pediatric neurosurgeon has an idea of what we're dealing with, we still won't really know what we're dealing with. Every child with spina bifida is different, in dozens of ways that you don't fully know the extent of until they stop growing (which could be as long as 20 years). The other major effect of spina bifida is the pooling of spinal fluid in the brain. This is something that has been monitored throughout our pregnancy, but there's nothing you can do about it. The fluid on Emma's brain hasn't been that bad. She will still most likely have to have a shunt eventually (a tube that drains the fluid from her brain, and it's there forever). Shunt surgery sounds really scary, but it's so routine and common that it doesn't really freak us out.

Regarding spinal cord injuries, the lower the injury, the better - because only functions below the spinal cord injury are affected. The best they can tell is that her lesion is low, so that's good news. Once she's born, they can pinpoint exactly which vertebral (is this a word?) level we're talking about, and that will give us a better estimation of specific problems we may be dealing with. But still - it will just be an estimation. When adults have fluid on their brains, it's very serious because there's not a lot of room in there for swelling; not so with newborns. Their plates aren't fully formed and connected yet, so there IS room for a little extra fluid, at least for a little while. We have been told that even though there is fluid on her brain, she won't be born with an enlarged head or anything.

The doctors guess that a folic acid deficiency contributes to the development of spina bifida, but I was taking MORE than they recommend for pregnant women....so that reasoning is out. Other things working against us are (1) we're white (2) we're of Irish/that-part-of-the-world descent and (3) we live in the Southeast, specifically South Carolina. Doctors have no idea why these are common denominators in the development of spina bifida. Doctors know for a fact that it's not hereditary, but our daughter will be more likely to have a child with spina bifida, so I don't really understand how they can make the it's-not-hereditary claim, but I'm just going with it. Our neurosurgeon, the OFFICIAL on spina bifida, called it a lightning strike. If we decide to try for a second child, we do have a slightly higher risk of a second child having spina bifida, and they will try to counteract that by prescribing me a dosage of folic acid that is 1,000 times stronger (literally) than what they recommend for regular pregnant women.

We learned last week that Emma will be born on March 16 - exactly a week before her due date. We have the option of having her naturally or having a C-section. Having her naturally sounds CRAAAAZZY to me, considering a neurosurgeon, surgical team, and the NICU have to be ready for her, NOT TO MENTION that she'll be born with an organ (spinal cord) exposed!! One doctor even questioned my decision to have a C-section (and subsequently made me feel guilty)...needless to say, I have requested not to see him ever again. So now we're trying to make it to March 16, and hopefully Emma doesn't have different plans.

Russell and I have been surrounded by loving and praying friends and family that continue to amaze us. We truly couldn't have made it without all of you, and we will continue to treasure your prayers. We know that the love that has been showered on us is truly God's love poured out through all of you. No matter what happens, we will pray every single day for healing. There currently is no cure for spina bifida, but the world of stem cell research is very promising. We are banking Emma's cord blood, which contains stem cells, at Duke (the center of U.S. stem cell research) for this reason.

Phew, that was exhausting. Sorry for the deluge of information, but we have been asked every question under the sun over the past 5 months. Hopefully this first post has answered most of them! The Spina Bifida Association has a great website with more information. And finally, here's a 3-D ultrasound image of Emma at 29 weeks. She always has her hands up in front of her face, like she does in this one. Don't be alarmed that she looks kinda goopy - that's how the 3-D image comes out. Plus, all you parents understand that it's pretty goopy in there anyway. So far, we have had 10 ultrasounds.