Updated: Sep 8, 2020
At approximately 10 months old, Alice was at the top of the waiting list to have her Gastric Feeding Tube (G Tube) fitted. In the previous 7 months, since her diagnosis, it had become glaringly apparent that without some sort of long term solution we simply couldn't move towards any sort of normality. A Nasal Gastric tube (NG) up the nose is just not a permanent solution and NKH is very much a permanent problem.
Not much had changed since her diagnosis on the feeding front. Drinking milk was still non existent, a brief period of looking like she was going to eat puree had kind of started, stalled and begun again but at a negligible rate and holding and eating toast had gone no further than sucking it to mush and spitting it out. We did however have the fun new addition of relentless vomiting, multiple times a day. So anything we put into her nasal tube (milk and huge volumes of meds) almost always, came flying back out in the proceeding minutes. Not only was this a massive pain in the ass for obvious reasons but its also pretty dangerous. Firstly, she wasn't getting enough nutrition or calories, second you have the ever looming threat of aspiration pneumonia, which is one of the most common killers in NKH, but the biggest issue is her meds wern't staying in long enough to do their job. If she puked almost straight away, it was a pain but you at least knew to do the meds again. However if she emptied her stomach contents fire hydrant style, anything after about 10 to 15 minutes later, you had no way of knowing what she'd absorbed. Do you medicate again and risk giving her an over dose or not do them again and risk seizures or relapse? This was one of the many fun decisions I had to make back in those days.
With all this in mind, Alices Specialist decided that whilst she was having her G Tube fitted, he would get the surgeon to perform a "Nissens" or Nissens Fundoplication to give it its full name. For some reason the thought popped into my head that my first car was a Nissan and before I knew it Id said it out loud. Naturally he found this fact neither interesting or humorous and I felt like a twat for verbalising it. After the tumble weed had passed he broke the uncomfortable silence and explained that a Nissens would tighten up the structures inside Alices throat so she could no longer throw up. She would gag and wretch but nothing could escape her stomach, not even burps. Essentially what it involves is putting a kind of slip knot in the top part of you stomach and looping it around the oesophagus to treat severe cases of acid reflux. At the time both me and Greg were really reluctant to have this done as it would involve a longer recovery, a longer surgery, more keyhole scars and of course no parent on the planet is thrilled at the idea of an already seriously sick baby having their internals fashioned in the style of a balloon animal, so at this stage we declined this suggestion. But just 24 hours later, we'd dealt with 6 more projectile vomits so we called up the stoney faced and humourless Metabolic Specialist and told him we were on board with both a G tube and a Nissens.
The surgery itself was a weird experience and far more emotional than Id anticipated. On the one hand there were several reasons why I couldn't wait to get it done. Some that spring to mind were Alice would no longer look seriously ill (even though she still was) and Id finally have baby photos of her to look back on that wern't marred with glaring medical evidence of her condition. I could kiss her beautiful cheeks all I wanted, I could pick her up and dress her without having to navigate long tubes and of course there would be no more dramas and late night struggles reinserting tubes and having to drive to hospitals if we couldn't get it back in. But on the flip side, I had a child who had miraculously survived this long and I was actively choosing to not just have her anethetised but also cut open, scarred, her internals looped around each other, plastic valves fitted to her body and all because of something that would make life more convenient. It wasn't life saving, it wasn't essential and it could kill her so what the fuck was I thinking? These were yet more decisions you never anticipate yourself having to make when you set out on the apparently simply path of parenthood.
Anyway the surgery went ahead. Greg had to work and take care of George, while I spent three nights at Wellington General with Alice. Its worth remembering that there are only 22 months between our two kids and having emigrated to New Zealand from the UK we had no family help and almost everything in the first few years was done in split shifts. One took Alice, one took George and occasionally we met in the middle to Hi Five each other for keeping everyone alive.
I do remember feeling very very sick and very very lonely when Alice was under. I went to the cafe in a kind of daze. I had no husband to lean on or talk to, no Mum to hold my hand, no life long friends or family within anything less than 18,000 kms, all my New Zealand friends would check in now and again but they all had babies and newborns of their own and frankly, if they came to see us in hospital every time we were there in that first year, they'd never of been at home themselves.
After a lot of coffee and inner dialogue about whether the idea of taking up smoking again was a wise or foolish choice, I got the call to say she was in Recovery, she was fine and I could go and see her.
Now you'd think on presentation of my beautiful baby, alive and pink ,admittedly with a plastic pipe hanging out of her stomach, Id just be happy to hold her and grateful for the amazing work of the surgeons, but I wasn't. The feelings that hit me caught me completely off guard. But then right from Alices birth, my feelings have caught me off guard. Trauma and devastating news and moments that change our lives forever are often met with the weirdest of feelings, the least expected thoughts, emotions the opposite to what you expect and in mine and Gregs case quite often ill placed humour. So as I saw her lying in just a nappy with 5 different entry sites on her torso and a big bloodied hole on her left side with a blood filled tube hanging out my first thought was "You Wankers! What have you done? She was immaculate when I gave her to you. Sure she was fucked on the inside but her exterior was perfect. Now shes scarred and cut and how the hell will she ever wear a bikini with that shit hanging out her side"? I was genuinely angry. Firstly with the surgeons but then with myself for having such a normal thought and allowing myself to make assumptions I knew would not be true.
With a life expectancy of two, when the hell would she wear a bikini? And even if she did, as if she'd ever be aware of herself or understand being different or self conscious. She'll never walk you stupid woman, I thought to myself, let alone run down a beach in a bikini. One minute I've accepted the inevitable and the next I'm having stupid thoughts of her as a teenager on a beach in a bikini being "normal". Shes not "normal so I needed to stop being a Fuckwit and worrying about scars and tubes and stuff that doesn't matter and get back in the room.
In fact, remember baby Sam and his Mum that I mentioned in the blog post about carrying Alice on my hip? I'll never forget when I met his Mum and I rather sheepishly confessed to her that when I was told Alice would die fairly soon, my first thought was "But I have shoes that are too big for her. My friend has bought her beautiful red leather shoes and she wont fit in them for a few months. Do we have that long, because Id hate for the to go to waste". And no I'm not trying to raise a laugh, this was genuinely the first thought that popped into my head. Thankfully when I relayed this to Sams Mum, rather than looking at me like I didn't deserve to even have kids or that I was a basket case, she smiled knowingly and confessed that when they told her Sams cancer was terminal and he too wouldn't have long, her first thought was of the large boxes of bulk bought nappies she had at home that might now go to waste. Evidently it seems stupid and bizarre thoughts are fairly common in times like this. Who'd of thought it aye?
To be continued......