Today was Elijah’s last day for Phenobarbital! We are incredibly happy to get him off of this drug. The most frustrating thing to me is that they told us in the hospital that Phenobarbital was a really safe drug and it’s been around for 100 years. That’s not really the full story. The truth is that Phenobarbital is a double-edged sword. While it’s great for stopping and preventing seizures, the side effects are not that great.
In fact, Andy did some research on the drug and looked into what they say about taking Phenobarbital while pregnant. Guess what? It causes all sorts of birth defects and cognitive issues…and small heads! While I know that Elijah wasn’t exposed in utero to the drug, it only seems like common sense to me that Phenobarbital might have a negative impact on an infant…he has essentially been on the drug his entire short life. Whenever Andy has brought up anything to the neurologist about Phenobarbital having an impact, he denies it…he always goes to the brain damage as the one and only factor. While we know his injury could have a lot to do with his head size, isn’t it possible that the drug is also a factor? Especially since a day before (in the womb) it would’ve been considered a risk – magically the baby is born and suddenly it’s safe? That simply doesn’t make any sense to me. We gave Elijah his last dose tonight – that is certainly a cause for celebration.
We saw a plastic surgeon and neurosurgeon for Elijah late this afternoon. They confirmed that Elijah’s head isn’t fusing early. That’s great news. There is a chance that it could still fuse early, but it sounded like that is rare. (So we’re not going to worry about it unless it happens!)
Basically, they think that his skull bones are overlapping because of his traumatic birth. They said they see heads like his sometimes when a baby has excess water on the brain – the skull pushes out to make room and then shrinks back down when they remove the excess fluid. It sounds to me that this is the same thing that happened to Elijah. He had massive head edema (swelling) when he was born – his skull obviously made room for his brain. When the swelling went down, his skull ended up overlapping. The hope at this point is that his brain will grow and push the skull out. Please pray that his head will grow and that it’ll start to round out. If his head doesn’t start rounding out, they could fit him with a helmet, which would help direct the bones where to go. While we don’t want that, it would definitely be a better option than surgery.
We’ll be going back to see these doctors in three months. Hopefully Elijah’s head will have grown and pushed out the bones by that point. They basically told us to take him home and rear him up. :) I liked these doctors a lot more than Dr. Gloom. They weren’t so gloomy.
On the way home, Andy, Elijah and I stopped at Perkins. Elijah got a lot of attention. “He’s so cute!” “How old is he?” “What’s his name?” “Is he your first?” It was nice to have people swooning over him – no one seems to notice anything about his head. He’s a beautiful boy and he is such a joy. We are so thankful for him.
If you’re traveling for Thanksgiving – be safe and have fun!