8th July: (pvl) hole in the brain

8th July: where to begin, this was just a shit day to be honest, and another hurdle in the way.

Let's start with a nice picture though.

As you can see mum got to hold him again, if my memory serves me correctly this is only the 3rd time in his life to be held, by mum that is.

God knows we needed these days, as parents not being able to hold your own flesh and blood is unbearable, but I have already gone into this on previous posts.

Lets get on with the news of the day, so July the 8th.

As usual the surgeons had come about and done their daily walk about. This was always a scary, but hopfull moment. You didn't know what news you was going to get. For us it was always not so good, but we always held on for hope. 

It was handed over that there was reduced leakage from his bowel, this was good news, but it didn't mean we was out of the woods, the looming thought of surgery wasn't very far from my mind.

So it seemed that the bowel had attached itself to the stomach lining, thus creating it's own kind of stoma bag. Don't ask me how this happend as there was a lot of technical words being used, but it didn't seem to be a bad thing in there eyes. Also the hole that they was concerned about appeared to only be a small hole to everyones delight, and a scan showed this to be healing.

That's the good news done!

Oliver went onto have another scan on his lungs, I was already concerned about his lungs, as there wasn't really any progress with him progressing through the ventilation.

The scan showed that his lungs were still under developed, this meant he would be on ventilation for some time, most probably a long time.

Scared because I knew this was going to probably give him life long issues, but also worried that even if the rest of him heals, we won't be leaving hospital all the while he is on ventilation, weather that be conventional or so on.

Oliver also had another heart scan to check for the aortic stenosis, again this was sent of so we didn't get the result strait away.

That's the bad news!

Now comes the news that shook me, one because I wasn't expecting it, and two because I wasn't ready.

The nurses and brain examiners had been round and had completed a brain scan on Oliver.

After all the things that have happend with Oliver, and after all the things he had over come, and Given the things he was still fighting.

This seemed like it was just the straw that broke the camel's back.

The scan had shown, Oliver had a hole in his brain, yup you read that correctly, a hole in his brain.

So aside from all the bowel surgery's, and the infections and worry, stress and general crap that had come our way, we now had this !.

It's known as (Pvl), this is a little information on it.

About 75% of premature babies diagnosed with PVL will go on to have some form of disability. Very mild cases of PVL may have no lasting disability at all. In general, PVL leads to motor disorders, the most common of which is cerebral palsy (CP).

There is no treatment to cure PVL. Babies at risk for PVL may need special care after discharge from the hospital. Follow-up may include physical therapy, occupational therapy, and speech therapy.

Given this news, it was devastating to say the least. 

The hole in his brain was in the back right, some sort of lobe with a technical name, (optical lobe) but it was the part of the brain that effected his visual function.

This opend up the question, will he be able to see, up until now his eye tests had been fine, but they still wouldn't know if olivers eyesight would be functioning correctly or if it wouldn't.

This was just another thing my boy had to fight through, exhausted for him, i just had to fight on for him. 

To look at him here you wouldn't think anything could be wrong with his eyes, but we just couldn't tell.

Also it was always at the back of my mind that he would have some sort of difficulty, maybe a slight disability as he gradually got older. To hear the news of a hole in his brain, this just kick-started the anxiety of that being a real, but worse possibility than anticipated.

I then started to doubt myself as a father, something I have never done. 

What if I couldn't cope with a disabled child, as horrible as this may sound, it's a thought I'm guessing some of you may have had, even if it's not something you could admit. I'm not saying I would ever walk away, and I know I would cope and do my best, but with the stress and anxiety, I had this thought.

I know I would never give up, but then when all this was going on, I did doubt myself.

I already knew my life had changed from the moment Oliver was brought into this world, but having all this news and complications, I didn't know by how much.

Still, I love the little bugger all the same.

Next, more eye tests and some physio sessions.