Treliske at 7am
The next few hours are a bit of a blur (and I didn’t write any of the rest of Maisie’s story down – so I’m now going on last year’s memory).
I remember our consultant telling nurses and doctors to urgently get different medicines. The doctor who has been looking after Maisie comes in looking shocked: he is so surprised that a baby who is so ill could look so well.
Maisie is rushed into HDU. We come with her initially. I think it may have been me who carried her into the High Dependency Unit. And I begin holding her hand and kissing her whilst doctors and nurses start rushing around. They try her with dummies to try to calm her. And they begin calling Bristol to ask for advice. Ben encourages me to move out of the way of all of the doctors, and we end up going into the “parents room” which has a tiny sofa, and some tea and coffee making facilities.
The consultant comes to find us and tries to explain what is going on. I don’t think I really understood it at the time, but Maisie has a coarctation of the aorta. Basically, the tube running from her heart is too narrow, so blood can’t travel properly around her body. Because of this, her digestive system hasn’t been receiving enough oxygen to function effectively, so her blood has become contaminated. She explains that she is seriously ill and needs to be treated as soon as possible, but they are working to stabilise her. The HDU is filling up with different doctors and nurses, specialists from critical care and the neonatal unit.
The nurse in charge finds us to see how we’re doing. Anytime we go in to see Maisie she explains what is happening and what has changed since we last saw her. More tubes, more medicines. They spend a long long time trying to get different lines (cannulas) into her so they can get drugs into her more effectively. I hate not being with her. But I don’t want to get in the way, I want them to protect her and make her better.
At some point in the parents’ room I break down with Ben, unable to really believe this is happening. It feels like we’re swimming in some sort of dreamy-fog. Ben keeps saying that we need to prepare ourselves, that she really is very poorly. But I can’t do that. I can’t start to prepare myself that Maisie might not make it. I don’t want to think like that, so I take the positive route: she can’t not make it. A large part of me really knows that she is going to get through it, she is so strong and such a fighter.
We now have the task of letting our parents know that Maisie is seriously ill. I phone my Dad to give him the bad news. I can’t remember what I say, but I know I’m crying, and I know that I say that she is really, really ill. His voice sounds heartbroken for us – and I say we’ll keep them updated. Ben also calls his parents (who are already worried). They went to work briefly, and then felt wrong being there, so they start to make their way to hospital to help us.
The Bristol Watch team are on their way to us, but they will be some hours driving from Bristol. Someone brings us cups of tea and Ben and I spend a lot of time gazing over the rooftops from room 12, unable to take anything in. Neither of us can eat or drink.
One thing I can do though, is pump milk for her. I borrow the breast pump machine and pump milk for Maisie – to keep my supply up for when she needs it. I have to do this every few hours and it often takes almost an hour to do it. It is tiring, and I don’t like that it keeps me away from Maisie, but at least I’m able to do something slightly useful. But I wish she was able to have it instead. Breastfeeding pretty much cures all ills in babies. After each procedure it was the first thing I did for her. And you could just watch her instantly calm, the pain slowly seeping away.
Ben’s parents arrive. Ben tries to prepare them for the worst. But I remember saying that she will be okay, the alternative just isn’t possible. Ben gets upset saying that he doesn’t feel like he knows her yet. That it’s just too soon. She’s only been here for 12 days, we haven’t had time to properly get to know her, and who she is.
Eventually the Watch team arrive, and everyone seems to breathe a sigh of relief. Ourselves included. They arrive with big red back-packs, and remind me of the ghostbusters – coming to save the day. The team leader comes to talk to us and introduce all of his team. They have big smiles on their faces, looking calm and relaxed. It is okay. They’ve done this before. It will all be okay.
But it still takes hours to stabilise Maisie ready for the journey. I think my mind has mainly blocked all of this waiting out. But we decide Ben will go home with his Dad to help pack for us as we will be in Bristol for a few days, whilst Maisie is stabilised. Ben’s mum stays with me. Every so often I go into the HDU to see Maisie, and give her a kiss. She is unconscious now and they’ve given her a breathing tube. It is nice to see her more peaceful. But she looks so ill now. Puffy with all of the drugs they’ve given her. We find out later she was given triple the maximum dose of one drug (which could have stopped her breathing), but luckily she was already intubated. I think it just shows how stressed and scared the doctors were who were working on her (and how over their heads Maisie’s condition was).
9 hours later
Finally, around 5:30pm, she is ready to go. She is put in a big blue box, a special incubator, and every bit of her is being monitored. She has been sedated and also given a drug to lightly paralyse her so that she doesn’t move in transit. Poor Maisie looked absolutely tiny in that box – only her tiny face seen amongst the tubes. She hardly looked like her anymore. Ben comes back and hands me my luggage. I’ll travel in the ambulance with Maisie, and he will drive. He leaves first – terrified that Maisie won’t make the journey.
As we leave, we see our consultant. She holds my arm and says “she will be okay”. There was something about that gesture that I completely believed. I knew deep down that although we had a long way to go, that she was going to be okay.
We load up the ambulance. The Watch team (four of them) go in the back with Maisie, whilst I sit in the front with the driver. In the leaflet they gave me it says not to distract the driver, so I take it as gospel, and hardly speak throughout the four-hour journey: I’m too exhausted anyway.
The ambulance driver explains that he will use the siren to get us out of Truro to beat the traffic. I think I might find this exciting. But it’s just really upsetting: to be the mum of a critically ill baby in an ambulance. I’m amazed at how quickly each car moves out of the way, like the ocean parting for Moses. And we’re soon on to the A30, that road we know so well. The grass verges are absolutely full of huge white daisies, dancing in the wind. And my thoughts turn to funerals. Apparently it’s very normal to think about funerals in these situations. I imagine daisies all over the church. Daisies for Maisie.
I doze on the journey. It’s hard not to. I gave birth less than two week’s ago. I’ve been living with a toddler and a newborn for all that time, on little sleep as it is. And I barely slept at all last night. My eyes and face are puffy with tears.
Every now and then I’ll text Ben. When we cross the border we both comment that she’s never been out of Cornwall before. There are so many things she hasn’t yet had the chance to do.
We stop half way at a service station. As we pull in we see Ben just pull away (he’d stopped at the same services). The Watch team get coffee, whilst I have an awkward conversation with the driver. I don’t have the energy for small talk. It is so warm, a perfect June day. He suggests I try to get some sleep – I must have looked terrible.
We must have arrived in Bristol around 10pm. It is almost dark, but the city is still busy. We are heading for PICU. They unload everything, and Maisie in her box. Whilst she is being transferred, I’m shown to the PICU waiting room, where Ben and my parents are waiting. They have enough food and drink for 10 people – they just had to do something. They do very well at staying strong for us. I manage to eat a sandwich, and try to explain all that is going on. I think I was quite together by this point. She has made it to Bristol. She was in the very best place, she was strong, she was my little girl, and she was going to make it.
About an hour and a half later, we are allowed to see her. She looks so beautiful. Her tiny soft head. Her face still looks a bit puffy, but she looks peaceful. Our gorgeous girlie. And with the sedatives easing off, she opens her tired eyes. Poor darling. She tries sucking on her oxygen tube which I just find heartbreaking, as she so obviously just wants a feed.
I go to pump milk (again) and we try to work out if there is somewhere we’ll be able to sleep. Ben and I are so tired, relieved to be here now, but really needing some sleep.
We are shown eventually to the parents’ rooms on the floors above. I take a breast pump with me. I’m not sure whether I’ll be able to sleep with everything buzzing in my head, but with my alarm set for a few hours later (for more pumping) I fall asleep in the little bunk beds within seconds.