I need to vent out today. I’m feeling all kinds of lost and sad and I need to get it off my chest. This is the beginning of Rubeon’s life and the aftermath of his birth.
As you know, my beautiful little smush Rubeon was born back in October. It wasn’t exactly the birth I had planned or thought it would be. In fact, I blindly assumed it was going to be very much like Williams birth, so much so that having a c-section wasn’t even on the cards. Until it was. I didn’t want a c-section to be honest, until the time came for it and my opinion changed…
Moving on from the labour, (which will be its own post at some point, just not yet.) we fast forward to Rubeon arriving and being whisked off to NICU 14 hours after birth due to high resps indicating an infection of some kind. Now, I don’t know about you, but at 4am on a normal day I’m not a very highly functional person…but let’s add in a sleep deprived, exhausted, post-birth, with a body still half (temporarily) paralysed from a spinal, with hormones running races in my body to the situation. A NICU staff member came in to explain what was happening and why Rubeon was being taken onto the ward. (He was a lovely chap, but he had an accent which I really struggled to understand in my current state.) I just nodded and agreed and his words washed over me. My baby was poorly, they were going to help him with a 5 day course of antibiotics and take bloods to find out what the infection was.
Fast forward 4 hours after I managed to get some sleep, and my sister was on shift on the ward. Still in my haze and shattered state, the same NICU staff member returned and my sister was able to be my guide and retain the information I was being given (and translate it back from “doctor” to “bog standard English.”) Not only were they helping him with the infection, it had come to light that he had an unusually large head…when I say large, I mean the size of a one year olds head.
Rubeon was born with Hydrocephalus. Fluid on the brain. He was born with a head circumference of 48.5cm. (To put that into perspective, Williams head was 36cm at birth.)
Rubeons head was literally filled with too much CSF (cerebral spinal fluid) and it wasn’t draining away how it should.
At a day old, Rubeon had an EEG. At two days old, he had a CT scan, and at three days old he had an MRI scan. – during this time I was breastfeeding, but I allowed a bottle to be given for the MRI scan as he needed to be still and I figured a full tummy would do the trick! (It then turned out that even with a 70ml bottle drained, he remained awake for the whole scan!)
It was then we were officially given the diagnosis of Hydrocephalus. That day will remain with me. The doctor was unbelievably negative about it and when I asked what it meant for Rubeons quality of life and how it would affect him, the doctor replied, “don’t expect a normal life for him.”
Well that was it. I broke. My sister broke. I wanted the doctor to leave the room but he kept talking. I didn’t hear a word he said after that. I wasn’t expecting to hear those words, and being presented them so ‘matter of fact’ like and emotionless didn’t really help either. I felt like I was opening a door to the unknown, my mind just spiralled out and I was imagining so many different scenarios.
⁃ would he walk? Talk? Smile?
⁃ Would be be able to feed himself? Sit up? Run?
⁃ How would Lily and William play with him? Would they understand?
The questions just kept coming, and I didn’t know the answers to any of them.
Now we spent 10 days on the NICU ward, the care that was given was wonderful, but the communication to us was awful. Over the course of these days, Rubeons head grew another 2cm, Bringing it to 50.5cm at its largest.
We didn’t know whether we were coming or going. After the diagnosis, it was a case of “you need to go to the specialist hospital that deals with Neuro on a bigger scale.” And this seemed to be the direction we were heading in, until they couldn’t get hold of the surgeon over there. (I mean, you’d think there was more than one right??) eventually it turned out the surgeon they were after had gone on holiday, and it was now Friday. (Go figure.) we spent the weekend in limbo as to why was happening.
Then suddenly there were talks of us being discharged from our hospital and being referred to the specialist hospital as outpatients. I was getting angrier and angrier by the day, no one knew what was going on, and no one seemed to care that my sons head was getting bigger! Eventually, a godsend doctor did the morning rounds on the second Friday, and by lunch time we were told that we would be transferring anytime over the weekend!
We were finally transferred hospitals in the late hours of Saturday night, and arrived around 2am on Sunday morning. We were lucky enough to be transferred with the ANTS team! (Although we had to measure Rubeon before they came as they weren’t sure he would fit in their transport incubator!) thankfully he just fit!
On the Monday, the head Neuro consultant came round and explained everything to me, and explained that Rubeon would be having a shunt inserted into his head to drain the fluid into his abdomen. I was so relieved! Finally, someone was going to be doing something to help my baby. And what was even better, he was due for surgery on the Tuesday morning! I was worried as the side they wanted to fit the shunt in was Rubeons preferred side to sleep on, but it was a small price to pay, and he soon adapted. I remember trying to work out how and when I would/could feed him before he went into surgery, but again it somehow planned out spot on perfectly. He woke at the right times and was able to have a number of decent feeds right up until his cut off time!
As I said, the surgery was on Tuesday, and we were home by Wednesday afternoon! It was that quick! After 3 weeks of being away from my older two, I couldn’t wait to get them home! (And we were home just in time for Lily’s birthday! too!) After 2 weeks of being passed from pillar to post, we were finally home as a family of 5.
Since then, we’ve had numerous trips back and forth to both hospitals. I am both grateful and frustrated about this. I am so grateful that we have this care so readily available to us, but frustrated because the system is so backed up we’re having to wait weeks/months for appointments. And even when we get these said appointments, the doctors can’t agree! I’m just at a loss right now. I’m angry that these doctors whom we put our trust and faith into, don’t listen to what I’m saying to them. I’m angry that waiting months for a follow up appointment doesn’t bother them, but to me waiting so long for answers is slowly crushing me.
My amazing, funny, smiley boy is taking everything in his stride, and I find myself constantly worrying about what “could” be wrong. I’m wasting precious moments with him worrying, instead of just enjoying him for who he is. Don’t get me wrong, these days aren’t often, but when they come they hit hard and I can’t help but well up and let my mind wander. (And I know, there are others who have it far worse than us, and after what we’ve been through so far, I can truly feel for them.) I just want answers now, and we don’t seem to be getting them. My son deserves to have every possible opportunity given to him, but until we know what we’re dealing with, how can I give them to him?
I know we will get the answers soon, and I know some answers we won’t know until we’re there, but for now, I am loving every part and every moment of being with my baby, and I know he’s a strong little dude.
No matter what comes of him, he will always be loved and will always be Rubeon.
– Becky x