So I went to the doctor thinking he was perfect and then came home with more to worry about. I started googling. And I discovered the word "Microcephaly". Microcephaly is when the circumference of the head is more than 2 standard deviations smaller than normal for that person's age and gender. It can be genetic, where a baby will be born with a smaller than normal head or it can occur when a child is born with a normal head circumference, but it then fails to grow normally. A small head basically means a small brain, and this condition is associated with poor neurological outcomes. Having said that, it is possible to have microcephaly and still be highly functional, much like a HIE diagnosis. Nevertheless, I was worried. Could he have microcephaly? Could the injury to his brain mean that his head is not growing properly? I looked at images of children with Microcephaly. Some of them looked pretty normal (albeit with a small head) and others didn't. It is hard to imagine your precious child looking like that. What would the doctor at the hospital say about this?
We went for out first appointment with the Paediatrician at the hospital. When she greeted us she said "Do you remember me?" And I was like "umm no" and she flipped through his file and said "Oh no, I wasn't actually directly involved with Joshua when he was in the hospital, but I knew his case". So she read all the things that the GP had written in her letter and she had a look at his head. She could feel his fontanelle and said it was still open. She said the prominence of his Coronal sutures was just moulding remaining from the birth. I asked her if that was normal.... he was 7 weeks old now... isn't moulding supposed to be gone within a few days? She told me it was normal. At this time his head circumference was on the 15th percentile (after being on the 50th percentile at birth) so it was really just a case of waiting to see how it would grow. She said we had until he was about 6 months to see what it was doing and if it didn't grow then they would do further investigation then to find out why not. I felt better about it all after speaking to her. I went there thinking he had something terribly wrong with him, but she didn't seem to think that. But now my focus was on his head circumference. I would measure it myself all the time. I still do. She agreed to put him on Losec for his reflux. She said they don't like to medicate unless the child is losing weight or is in extreme pain. I wondered how much pain a baby had to endure for them to consider it worth medicating. To me, my baby being in ANY pain is too much pain. She basically said she'd give us the medication to make ME feel better rather than Joshua. I didn't care, so long as she gave it to me. Losec can take a few days to start working. 5 days after starting it, he was much improved, no longer screaming and arching his back, not waking as often during the night. It was worth it. He was only getting one dose a day and it did seem like it wore off by the time he was due his next dose because he would get symptomatic again just before I was due to give it to him. I thought maybe he needed to have it twice a day and but before I could speak to someone about changing the dose, he seemed to improve on his own and I no longer thought it was necessary.
The doctor had also asked me questions like "Have you noticed any lip smacking?" and I said No. Then later I was thinking to myself "What does lip smacking look like anyway?" So yep, I googled lip smacking. I found videos on You Tube of a little boy who was having a seizure. The lip smacking was part of his seizure. It was SO subtle. He had a seizure disorder known as 'Infantile Spasms". So then I searched for more videos of infantile spasms, and found video after video of babies having these seizures. They are barely distinguishable from normal jerky baby movements, except that they are repetitive. I freaked. I was convinced Joshua must be having seizures like this. I researched infantile spasms and found out it is a terrible form of epilepsy and although most children grow out of the seizures, they are left with severe neurological dysfunction. Sometimes the seizures are so terrible that surgery is done to remove half of the child's brain. So after that, every movement Joshua made, I was freaking out. Is he having a seizure? I would say to Rod "Look at him, look at his leg, is he having a seizure?" And Rod would say "No, he is moving his leg.."
SO much to worry about...