It’s been exactly 10 weeks since we found out we were pregnant. And in 1 more week we will finally get to meet our little miracle, Eliza James.
It’s been nothing short of a whirlwind of emotions and preparations and information and I couldn’t be happier. Today.
I have to admit, I’ve definitely had so many ups and downs that you would think I was on a constant roller coaster of emotion. Heck, I may cry at some point today, I just don’t know.
Yesterday was my birthday. I wanted to have a good day but I woke up crying. I cried because we were meeting with Eliza’s neurosurgeon that afternoon and I was worried he was going to blindside us with new and terrible information. James tells me all the time how proud he is of me for being so strong through all of this but sometimes it’s just too much.
Yesterday it was too much. For about 10 minutes. Then I put my positive (granny) panties on and got dressed, had an excellent birthday brunch, a birthday red velvet cupcake and went to my doctor’s appointment.
Good news: we really like our neurosurgeon, Dr. Shiflett. He spent over an hour answering all of our questions, explaining her back closure procedure and going over our fetal MRI results.
Eliza has a considerable amount of fluid on her brain. This is called hydrocephalus. Since she has an opening in her back there isn’t a proper flow of cerebrospinal fluid so it has built up. This can be reduced by placing a shunt (small tube that runs from her skull through her abdomen to make the fluid flow). So she will more than likely be born with a larger sized noggin but it will shrink a bit and release the pressure the fluid is putting on her brain.
Our initial diagnosis of her opening level was T10 “all the way down”. So if you remember my photo from the last post this meant her opening was from around belly button level all the way down to her bottom. Our neurosurgeon told us yesterday that’s he’s “not sold” on the lesion being that high. He said it looks to be large BUT also looks like it is just lumbar involvement, which is good news. If it only involved her lumbar region the probability of her being able to have core control is considerably higher AND the probability of mobility (walking) is higher as well. 🙂 He followed up with the fact that he won’t know anything until she is born and he can actually get a look at the opening and THEN we won’t really know anything until she decides to show us what she is capable of doing.
I think just talking to him has eased my mind. He is very personable, has good hands and made a Blazing Saddles reference while we were there. So he got some points from me with that one. 😉
He also stated that since she already has a considerable amount of fluid on her brain that she is a candidate for not only her closure surgery but he will be able to place her shunt during the same surgery. This is good news because we won’t have to watch our baby be put under more than once before she is a week old. The bad news is that her first haircut will be by a neurosurgeon BUT if it’s going to be what she needs, that’s what we do. We do what we do for her. Always.
The surgery should take a couple of hours to 3 hours and the recovery time is about 2 weeks. They like to keep them in the NICU for observation for 14 days just to make sure the closure is healing, the shunt is flowing and that there aren’t any other complications with her that they have missed.
After all that, we will be able to bring her home and give her as many hugs and kisses as we would like. For the most part, she will be a regular baby and that’s how everyone is going to treat her.
So, the game plan is this:
Monday Nov 3rd: amniocentesis to check lung development. (she has really really good breathing movement in utero now. She scored a perfect score on her biophysical profile)
Tuesday Nov 4th: the big day. She will be delivered by scheduled c section.
Thursday Nov 6th: Eliza’s back closure and shunt placement surgery
So next week is BIG!
Please continue to keep her in your prayers. They are working. We continue to get more positive news every single day. It’s amazing what is already working in her life.
We are just so so blessed for the family and friends we have and the support you have all given us during all of this. Words aren’t enough and we will never be able to express just how much this all means to us.
And yes, you can hold Eliza James. But the line may be long…she has “followers” — we love you all.
Photos: my wonderful brunch of shrimp and grits at Another Broken Egg in Madison, my birthday cupcake compliments of my wonderful Aunt Linda (current babysitter/support person), another personal pic of my wonderful man laying on my lap, feeling for kicks and talking to his daughter…