Elodie's Progress

I set up a CaringBridge site this week, so I'm just cutting and pasting my last two updates to make it easy on myself. Enjoy!

8/20/14:

Elodie had her first ultrasound shortly after birth. That night one of her doctors came to explain to us what they found. Her ventricles were indeed filled with quite a bit of cerebrospinal fluid. Another concern mentioned prior to her birth was that the corpus callosum and septum pellucidum were not present in her prosencephalon (the front portion of her brain). That led them to believe she could have a condition called holoprosencephaly, a very scary diagnosis. However, the new ultrasound showed that both of those structures were present, just thinned from the excess fluid. So, she does not have holoprosencephaly. Such a relief! They also found a clot in the sinuses of the occipital horns (I think that's what they said), which is in the back of the brain. This is not related to the hydrocephaly, but is another issue that must be addressed. In order to treat the hydrocephaly, Elodie needed to have a shunt placed into her brain which drains into her belly. You can read more about shunts here:  http://www.healthline.com/health/ventriculoperitoneal-shunt#Overview1
The next day she had an MRI and CT scan performed to get a better look at everything. Again we got good news. Elodie actually has a great amount of "cerebral mantle" or brain tissue present in all areas of her brain. As the fluid drains out, her brain matter should "fluff up" and re-expand, although there are no guarantees as to how much. There are also no guarantees about damage that may have been done to the existing brain tissue. They determined the cause of the hydrocephalus is a condition called Aqueductal Stenosis, and of all of the conditions that could be causing it, this is one of the best of the best. Prior to her birth, they gave us the following prognosis: less than less than 1% chance of typical development, 5% chance of mild disabilities, 95% chance of moderate to severe disabilities. Now with her new diagnosis the prognosis is as high as a 40% chance of typical development. WE WILL TAKE IT!
On Monday, August 18th Elodie had her shunt placed into her brain and belly. It went flawlessly, and we can already see the changes beginning in both her head size and shape. Modern medicine is so amazing! Prior to surgery her head circumference was somewhere around 40cm, and last night (2 days post shunt) it was measuring 38.3cm! I've attached some of her MRI photos, and a before and current head shot. 

Cross section view

View from top down. The black spot in the back is a blood clot.

Pre-surgery

Post-surgery, and "caving in"

8/22/14:

Elodie continues to do pretty well. Her head continues to decrease in size each day. She started somewhere around 40cm, which is not even on the charts (beyond the 100th percentile). As of yesterday evening she was down to 37.1cm, which is now on the charts around the 90th percentile. It's amazing and a little bizarre to watch your infant's head change size and shape so drastically from day to day. Her weight is remaining pretty stable since birth, which is due in part to the amount of fluids that were pumped into her prior to her surgery.

Today the word "home" was brought up several times. As far as Elodie's hydrocephalus is concerned, that is being well controlled by her VP shunt. Another issue we're working through is a blood clot that is present in the back of her brain. On Wednesday she began IV Heparin therapy to thin her blood and prevent her clot from growing. As of tonight, she has been switched over to a different drug, Lovenox, which is being administered through subcutaneous shots. The placed a port into her right leg to administer those shots, and when she goes home Brian and I will administer them ourselves. We're not really strangers to this stuff as I have taken Heparin many a time when we were going through infertility treatments. The crummy thing about Lovenox is that it stings and bruises, and even with the port eliminating all of the needle sticks, the nurse said it probably still won't be too comfortable for her. :( Once they determine that she is getting a therapeutic level of the drug, then that situation is also fairly well controlled. So her last hurdle to going home is her feeding. Currently they want her at 36mL every three hours. The goal for discharge is 45mL. Right now we're lucky to get her to take 20, although she has taken up to 33. Her ability to nurse has been demonstrated a couple of times, but usually once she's in my arms or lap it's a quick trip to lala land. Brian is having more success with the bottle, but she is slow and they put her on a clock. Whatever she doesn't eat by mouth in 30 minutes gets put into her NG tube. I feel like this is going to be her biggest hurdle to face before coming home. Babies with hydrocephalus frequently have difficulty with feeding, so if this is the tough thing she has to go through, I will take it. We hope that she starts to get the hang of eating, because if she does, she could be home by next week! Cross your fingers with us!

My sweet little peanut