19th "Today I felt like a parent, not a visitor"

19th April 

Today was a good day. (I know we have skipped a day, and this will happen from time to time). On these days there probably wasn't any news, neither was there any change; or significant changes should I say.

So, the 19th April I went in to see Oliver and I was feeling scared as always. Given what the last few weeks had thrown at me, I was surprised to even wake up in the morning with energy. Little did I know that this day was going to be a very good day. 

As I made my way into the hospital, accustomed to the routines and very much a regular face, I said hello as always. I always made my appreciation known. 

Walking up to the side of his incubator, I was once again faced with the stark reality of how unwell my child was.

Up until now, it's always been bad news that I’ve written about in my blog posts with the exception of the time he managed 12hrs on bubble cpap. As my other post had said, this was the only progression we had seen to date. Oliver had this habit if going backwards rather than forwards, and let's face it at this point he couldn’t afford to go backwards anymore.

Today was going to be a good day though. Little did I know at this point it was time for some good news.

The nurse spoke to me at the side of his incubator, she went on and said, "it seems that the medication to help close his heart duct (pda) is working thus far”.

I was so chuffed to hear this because, as previously mentioned, had the medication not started to have some sort of positive impact it would have meant him traveling to yet another hospital for a short stay. Ideally, I didn't want him going anywhere else as things were up in the air as it was with travel etc.

Also, after his operation, they went on to also say he was going for a wee without his catheter. This was also good news as it was showing even more progress.

His oxygen levels were good and stable; % unknown, as off the top of my head I can't recall.

Additionally, his infection markers were coming down as a result of the antibiotics he was on.

I was taken back by this news and feeling shocked; I wasn't familiar with good news, but I was going to take it.

This was the news we were waiting for, finally some positivity! Again, I didn't want to get too excited, but if you can't celebrate the little things now, when can you? I mean if this was the only positive news we were ever going to receive, I wanted to appreciate it for what it was worth.

To my further surprise, I was offered something I had only done once in Medway; I got to change his nappy again.

I know this says first nappy change… technically it was the first nappy change at Brighton lol.

The reason I was surprised at this was because it was after 2 surgeries and I didn't think I was going to be able to do it. Trying to navigate a nappy change on a micro preemie was difficult, as mentioned in a previous post. But to do it on a micro-preemie post-operation, especially bowel surgery with a stoma bag to contend with, and the added iv lines (short/long line - some of you will know what I mean) was infinitely trickier.

I didn’t think I was going to get this opportunity again for a long time, but I did.

And not only this, I got to assist in mouth care and changing some of his leads. This was a seriously big deal for me; up until this point I felt just like a visitor but doing these things with the assistance of the nurses made me feel more like a parent.

This in itself completely changed my mind set; for that split second, I felt like I was actually helping my son. I can't fully describe that feeling… but it's a sense of joy and contentment, and although minor and probably the smallest jobs, it gave me the greatest feeling of gratification at that time.

He held my finger, and I put my hand on his body and comforted him. He was so calm resting his hands in mine. 

I didn't feel worried or panicked while I was there that day. I took every second for what it was and just comforted my son. It was a blissful day.

Next ... tummy time, and some set backs, again.