I have recent been chatting with one of our ICU neighbours from Alder Hey who are happily (and nervously) expecting a baby in 2019. Huge congratulations and happy days! Like us they didn’t have the ‘normal’ journey into parenthood. When talking about it, we came across some common feelings… it would be like being a parent for the first time. This might not seem like a fair thing to say. Of course we’re parents already and it’s disrespectful to say otherwise.
Before I really get into this I need to say, I know parents whose children haven’t survived but have been there every breath of every day for them, or as much as possible anyway. Their child has felt their love. And if love could have saved them they’d still be here. When your child is on ICU all you can do is love them and be there for them. They are parents in the ultimate sense of the word. Loving unconditionally. This isn’t necessarily about the parent I was in those early days, this is about the parent I am now, or the parent I will be in the future. So please read on with that in mind.
Secondly – This post isn’t a cry out for attention but just musings as a result of a recent conversation.
One day I may be lucky enough to give Isla a brother or sister. The thought of this terrifies me. Not because I’m scared there will be issues… I am scared of that… but I have to look at Isla’s Long QT as a freak occurrence and there is no reason why something, particularly that, should happen again (Genetically I’m all good). My fear comes from not ever feeling like a dad. I hear all the time ‘You’re an amazing dad to Isla’… I’ll be honest, it’s lovely to hear but most of the time I don’t feel it.
Let me explain. When Isla was born we weren’t passed her to hold and cuddle. She was held up, squirted blood in my direction and was whisked off. I was then allowed to see her while they intubated her. I didn’t see her again for around 12 hours. It would be about 5 weeks before I would get the chance to hold her. I saw her every day and loved her unconditionally but I didn’t have the conventional route into fatherhood.
That aside, Isla was on Critical Care for 12 weeks. For around 84 nights, nearly a quarter of a year, I was sent back to Mac House while nurses looked after my baby. I didn’t have to worry (lol) about her waking up hungry for a feed in the night. I didn’t have to worry about her randomly crying at 3am. I didn’t have to worry about what time she went to sleep at night or woke up in the morning. I had 84 nights of undisturbed sleep. Ok… so I had different worries and reasons I didn’t sleep… it was fears of a phone call telling us to run back to ICU or researching medical conditions and treatments. For a few weeks until our genetic testing came back it was worrying that I myself wouldn’t wake up in the morning as I could potentially have Long QT and die in my sleep. For a few nights at least it was lying in bed chatting to lovely women in America about Long QT and what treatment regimes their children were on (ultimately saving Isla’s life!); it was hardly a night on Tinder, but it was a lack of sleep nonetheless. The point being though, I wasn’t the one having to attend to a baby in a zombie state. Probably fortunately for Isla at that time I didn’t have to. Chances are when she was ‘crying’ for a bottle and had a wet nappy at 3am she’d have ended up with a bottle up her bum and a nappy on her face. I’ve never had to deal with this situation. Zombie Dave hasn’t had to be Daddy Dave.
I said just then, Isla ‘crying’ for a bottle. Now, that’s something else I haven’t really had to deal with. For 10 weeks Isla couldn’t cry. She was on a ventilator and couldn’t make a noise. She was able to drop her oxygen sats when she filled her nappy but she couldn’t make a noise. Diva. She’s never really been a cryer. Part of me thinks this is because she’s never had to. She’s always had a nurse at her beck and call. Some of the 1C staff will probably disagree here since they were her main overnight care for the early days on 1C, but apart from bath time, Isla rarely cried. At home she’s cried when in pain caused by Mexiletine… but oramorph fixes that now. This became an apparent gap in my parenting when my sister asked me if I had any idea how to stop her newborn crying. My suggestion was a bolus of Fentanyl? Or Ketamine? Midazolam? All worked a treat on Isla! Having a nap at my parents and being woken by the sound of a crying baby was bitter sweet. I hated being woken up by the noise, but on the flip side it was nice to have that ‘normality’. Babies cry.
Isla was basically 1 when we brought her home. I missed all the baby of her. Having a new baby would be like being a dad for the first time. I’m not taking away my dad card for the first year, but it wasn’t the typical experience. This leads me on to my real feeling of insecurity. The feeling of not being a great dad. Most of the time I feel like I’m a great doctor. I’ve become a self taught expert in Isla’s condition. I’ve learned how to do and read an ecg and calculate a qt interval. I can calculate her medicine dose and adjust it based on my interpretation of her ecg so that she’s safe. That’s not being a dad. I spend hours at night reading medical journals and papers, researching and emailing/chatting to experts across the pond about Long Qt and drug metabolism. I watch her monitors like a hawk. Watching her on her baby monitor and watching her pulse change on the PulseGuard. After all that, where I lose sleep through worrying and watching her sleep, I’m so tired in the day that I can’t be the dad I want to be. I rely so heavily on my mum, Isla’s grandma, that she probably spends more time with her than I do. Sure I keep Isla alive, but I don’t know if that makes me a great dad to her; it makes me a great doctor to her.
I beat myself up more than most, and it doesn’t matter what people say to me. It’s how I feel. To try and balance out my shitty feelings I had a good think about what makes a good parent. I don’t know if there’s a set answer here. Essentially, I think it’s being there for your child and doing what is best for them. Now granted, I 100% have Isla’s best interests at heart and everything I do is for her. From that point of view I think I do a pretty good job. I love her unconditionally. It doesn’t matter to me she’s not ‘perfect’, she’s perfect to me. One fear I have is that if I have another child in the future, they won’t come close to her in that respect. People assure me that’s not true and you love them the same… well not everyone has had the experience I’ve had with Isla. So from the love side of things, I’m happy with my performance as dad. I’ve been there for Isla for almost every seizure, held her hand through it so she knew I was there.
With all this in mind, why do I feel like a fraud when people say, ‘Dave’s a great dad’? It perhaps isn’t because I’m not a good dad, it’s probably because at this moment in time Isla needs a good doctor, so that’s kind of what I have to be.
The Long Cutie 