About the Stroke...

I think this has been the hardest obstacle to overcome for Roland and I since Dominic has been born. His heart surgeries were predetermined and his cleft lip and palate are an inconvienience right now, but both his heart and his palate will be fixed in the future. And once they are fixed they will be in perfect working order. Both will function just like anyone elses heart or palate would function.

The difficult thing about the stroke is that it isn't fixable, and it is large. No surgery can fix what has happened. This damage to his brain is permanent. The stroke damaged about 75% of the right half of his brain. The most effected areas was his movement and coordination sections, and there is a possibility his vision and personality sections were damaged as well. When I asked about cognitive learning, the neonatologist stated that cognition is pretty much everywhere, so it can be assumed that will be effected as well.

Now, that being said, not everything is set in stone or completely predictable. Being that Dominic is SO young, and the neurologist thinks that this stroke probably happened in utero, he was still building his neuro-pathways when the stroke happened. In contrast, had this size of a stroke happened to an adult, they probably wouldn't have survived. His brain will adapt where it can, and he will have lasting effects when it can't. But no one will know what those effects are until Dominic gets to a stage in development or has difficulties in some areas or whatever. We may start to notice it when he starts to reach expected milestones in his baby development. For example, lifting his head while on his tummy, or sitting up, or walking, or talking. Right now he looks and acts like a regular baby (well, a regular baby that has a cleft lip and palate and has had heart surgery), he is not yet showing any favourtism to his right side, and he is still kicking with his left foot and grasping with his right hand. He is seeing a Physiotherapist once a day and we have also been told exercises we should do with him to help keep his left side moving and working. Meeting with the neurologist specializing in strokes and talking to the neonatologist have brought us some information that may be considered comforting or at the very least giving us less to worry about. The neonatologist stated that if he was going to have seizures from this stroke, he would have had some already, so it is unlikely he will have any in the future (the potential 22q11 deletion seizures are another story), and both the specialist and neonatologist have said that having this stroke does not make him more likely to have another one. A Neurology nurse is meeting with us on Tuesday to give us some resources on how to help him in the future, but other than that we are sort of done with this stroke. We just have to accept it, understand that his future is uncertain, knowing that we will need to help him, and move on.

What is really more of a concern right now is what is going on with his heart. We are still not sure if he will need to go back in for surgery, tests are still being run to make sure that the conduit really is the problem. The bacterial infection that could be cleared out by antibiotics is still a possibility until tomorrow. If his blood cultures come back negative between now and then, then we don't need surgery and he could be on his way home.

But, as always, for now we wait...