11th May: I can't be at the right incubator ?

11th May: The day was a nice day and being in the middle of May the weather was sunny; there were still days of drizzle, but not on this day.

Similar to all the days before, I left Frances waiting in the car and walked into the hospital. Scrubbing up and walking next to the incubator, I couldn't believe what I was seeing.

I thought to myself, “I must be at the wrong incubator, they must have moved my son to another place”, the baby in the incubator looked nothing like my son.

To my surprise it was my son, but he was so fat and filled out… Michelin baby came to mind.

I spoke to the nurse because I didn't know what was wrong or what was happening. A few thoughts went through mind, “could it be his infection, I thought it was gone now?”.

It turns out that he was in fact still fighting his infection, although it was minor, it still slowed his progress. He was due to come off the antibiotics in the next day or so.

The reason he looked like Michelin baby was due to major water retention. This along with his infection was a disaster for him; with these he couldn’t go and get his pda shut. Furosemide was administered to him to reduce the water and ensure his infection was under control.

The problem was that a side effect of him not having his pda sorted was water retention, but now he couldn’t go and have the surgery because of the water retention. A vicious circle was at foot.

At the end of my visit, he was doing alright in himself though. He looked rough but his stats were good, and he was just relaxing.

12th May: Oliver’s infection had cleared up and the doctors were happy with how his water retention was looking. He was still slightly puffy but looked good for the go ahead to have his pda surgery.

It was agreed for him to go on the Wednesday the 13th and have the operation on the 14th.

Just going round in circles with trying to get Oliver sorted was a mess. It was exhausting to remember dates for operations and recollect everything they said in detail. (if you're reading this and you have time, keep a diary! It’s something we didn't do and wish we did.)

14th May: So, Oliver didn't go on the 13th as planned as there was a bed shortage again. He was expected to go on the 14th, the date above.

Unfortunately, we got some bad news. Along with Oliver’s pda duct not shutting, recent scans and evaluations showed a suspected leaky heart valve and a narrow valve (aka aortic stenosis).

Reflecting on this, it just felt as though everything you had built up was just shattered (again) when you heard of more bad news.

You do really go through this nicu journey just waiting for the bad news. I know I say it a lot in these blogs, but it's something you can't shake or say any other way.

Oliver being at 30wks, but 7wks old out of the womb, already so much gone wrong, we just remained hopeful that something was going to turn around, and that we would get a break.

But this is easier said than done. Unsurprisingly, things only got more frustrating as again he couldn’t go to London for his operation.

I remember just being so confused and angry and asking, “why isn't he going? Surely he needs this to progress?”.

It became a bit of a game between London and Brighton. Brighton wanted to send him; London had no beds. It was all up and down, he is, he isn't, he is, he isn’t 🤯.

As a parent who is already at their wits end with everything else going on, to not be able to see even a small glimpse of a way out other than getting this operation, just led you to wanting to shout, “I give up”.

On the 15th of May Oliver was doing fine, his water retention was good he looked like Oliver again.

His infection had cleared up and he was doing well, no change. Again, we were given a date of the 18th for him to have his operation and for the heart surgeon to examine the leaky valve and narrow valve (aortic stenosis).

Happy with getting a date and keeping our hopes high, we left the hospital this day calm and content in the knowledge that he will be going. I mean surely they couldn’t put him off again...

The 18th May had come around, and we were sitting at the hospital beside Oliver talking to him before he left to go to London. The nurse came over to say he wouldn't be going today. I felt my heart sink, how could this be? All the while he isn't having his pda done, he is at risk of getting another infection. This could lead to the operation getting put off for another 5-10 days. Even more so, he could get water retention again and this would put it off for so many more days.

I was mad and I felt I had every right to be. I was angry for Oliver because he didn't have a voice. Because of this, I was his voice, and I politely but concisely raised my concerns.

I believe I got home later that day and I called London myself to see what was going on. My problem is I'm too impulsive sometimes, but only for the right reasons.

Anyway, he was doing well, and he was weighing 3lb4oz.

Next: Good news, I'm off to see big Ben