Today has been a long but wonderful day. My nurse got me over to Elliot's NICU bed early this morning where Byron and I could spend some quality time with him before he was transferred across the street to Children's. He is such a handsome little boy and its a great feeling that although I don't get to hold or see him often he still soothes immediately in my arms. A crew from Children's came over around 10am and moved him to the NICU at Children's for his pediatric neurosurgeons to keep an eye on him and make some decisions about his care.
He passed his neurological exam with flying colors, he is reacting to sound, tracking with his eyes, moving every limb, crying when appropriate and all his organs including, heart, lungs and kidneys appear to be functioning perfectly for a one day old baby. Byron was able to spend a lot of time today at Children's with Elliot while I worked on getting better at University hospital. Byron was even allowed to finally change one of Elliot's diapers and low and behold, Elliot peed on him...haha, now he is one prepared Papa for the next time he gets to change him. While Byron and baby were at Children's, I was finally able to shower, walk around and be a lot more active which felt so nice.
Elliot had his first MRI this afternoon to look at the possible cause of the hydrocephalus. What has been determined is that he has Aqueductal stenois, which if we understand it correctly he has too narrow of a passage between his 3rd and 4th ventricles in his brain for the cerebral spinal fluid to circulate, therefore it builds up and causes a lot of pressure on his brain. They scheduled his surgery for tomorrow morning (Thursday) at 7:30am. During this surgery they will put a Ventricular peritoneal shunt in which will drain his cerebral spinal fluid into his belly where it will be reabsorbed. This shunt will be internal at this point, but it comes with a lot of possible complications such as infections. He will have to be monitored closely for the next year to make sure his shunt is working properly. Unfortunately, at this time we still don't know anymore information about Elliot's brain development. One scenario could be that once the fluid is drained over the next couple of months his little brain (which is like a sponge) will bounce right back and he will be a typically developing kiddo. The other scenario is that this blockage occurred early in his brain development and therefore he could have quite a few cognitive deficits.
We are holding out hope for the best scenario, he has many things in his favor right now and besides his large head, every other part of him is typical for a day old baby. They most likely won't be able to tell us more for a few months. Those few months will be hard but we will just have to take one day at a time and have some faith that all will work out. After hearing this news, we were again shocked and scared and I was especially sad since I was at a different hospital and couldn't see my baby. So...my mom and Byron made a jailbreak and wheeled me over to Children's so that I could spend some time with Elliot. It was the best hour of my life. We just snuggled and loved on him. I was also able to change his diaper and he peed on me too, we will have to get used to having a little boy and learn some techniques. They even allowed us to put a little sleeper outfit on him for the night.
Tomorrow his surgery should take a couple of hours and if all goes as it should and he recovers as expected they said we may even be able to take him home this weekend...but it just all depends on how strong he is after surgery.
We never believed we would have a baby and at 2 days old who needed brain surgery, its more than we could ever imagine and its very difficult for us. Please continue to keep us in your thoughts and prayers throughout his surgery tomorrow.