So, the doctors believed Maisie had an infection, but they also needed to rule out heart problems (which was highly unlikely). As parents your mind always wanders to worse case scenarios – but you never really believe the worst could ever happen, that just happens to other people, right?
The plan that night was to insert a cannula into Maisie, take some bloods for testing, start on antibiotics straight away and do a chest x-ray.
In the meantime, I was finally introduced to Maisie’s nurse who had a room with a crib for her and a bed for me. I was so relieved as I was so tired, but there wasn’t going to be any time for sleeping.
The first thing they did was try to get a cannula into Maisie. We were taken into the bright lights of the treatment room, and I lay her carefully on the big bed. They gave her ‘sweeteze’ to try to calm her – a type of sugar water in little bottles. Sadly, the numbing cream they use on toddlers and adults don’t work on babies, so sugar water is the only thing that can be used to try to relax them. Another issue was that Maisie is incredibly difficult to cannulise: her veins are tiny and they also weren’t in very good condition because of her sickness. Poor Maisie hated being held down and still as they tried to stick needles into her. They tried three times (the maximum they are allowed before it is deemed to stressful on patients) and gave up. They did manage to get a blood sample from her to test the markers for infection, and had to give her antibiotics with an injection instead. It took over an hour of distress, which is heart breaking for a parent to watch. I know it was vital medical tests, but it is one of my regrets that I was unable to protect her from that pain. For such a short little life, she had a huge amount of joy and happiness – but she also undertook more scary and painful tests than any adult I’ve ever known, and I wish she didn’t have to go through that.
By this point it is the early hours of the morning, and both Maisie and I are really tired. Maisie sleeps as much as she can, and I relax her with lots of cuddles and breast feeds (thank God she took to feeding easily!) The first bloods are back almost immediately and the markers suggest she does have an infection, but they’re not sure what yet. It will take a day to grow the cultures, but we’re told that Maisie and I will be in hospital for the next 48 hours for antibiotics.
They still want to do an x-ray, so I walk her to the x-ray department, wrapped in her yellow knitted blanket and a purple hospital one. Its 3am and the hospital is eerily quiet with hardly anyone in the corridors. I’m in a long blue woollen cardigan and a grey dress that I’ve been wearing all day. Maisie is fast asleep in my arms and it is finally cold after all that sunshine.
There is no-one in the x-ray waiting room, so I take a seat and wait. You can see into the A&E department from there, so I watched people go by and be wheeled in and out. Someone asks what I’m waiting for as they weren’t expecting anyone – but eventually, we’re shown into the x-ray room. I wear a lead suit to protect me, and we lie Maisie carefully on the cold slab. She is still sound asleep and doesn’t move a muscle. They take the x-ray and we head back up to the paediatric ward.
Once we get back, we meet the doctor who says the x-ray is back already. I follow him into the office, he looks at me with a confused look on his face (I wasn’t meant to be looking at them) – but he says it’s okay for me to look too.
Even I can tell it doesn’t look right. Maisie’s heart looks far too big in her tiny rib cage. The doctor explains that they can’t made decisions from an x-ray. Although the heart looks big it is only a 2D image, it needs to be seen with a 3D echo machine to make a diagnosis, so they will scan in the morning.
In hindsight, they should have called someone in to do the scan then and there. Maisie’s heart was a ticking time bomb – but that was the decision that was made.
I carried Maisie into our room (room 12) whilst I try to process this information. I can’t quite believe that there might be a heart problem. Never in my wildest dreams did I really thing this could be the reality. It all seemed like a bad dream, a mistake. When I first arrived I felt like a time waster, she doesn’t even seem that sick to me even now. But Maisie was incredibly good at covering up the truth. I don’t know whether to tell Ben yet. I start googling “congenital heart defect” – but don’t get very far, I don’t want to feel worse. I just think about how this could affect my family and Lowen in the future – could this be the start of endless hospital visits? I’m not sure if they idea that she wouldn’t make it even crossed my mind.
Eventually, I text Ben to say there could be a heart problem, but that more tests are needed. He quickly replies (he must have been listening for texts) to say there is lots doctors can do and that she is really strong. She is the strongest!
The next few hours are a little blurry. There is an hour at one point where Maisie sleeps on my chest, and I snooze too. I’m so happy that I spent that time with you, holding and cuddling you. I barely left your side. Every couple of hours the nurses come in to check your OBS: generally they all seem great, oxygen levels at 100 percent, good heart rate and blood pressure. But slowly Maisie’s oxygen levels begin to dip. Although the nurses aren’t sure whether the machines are getting the readings right.
Once again they try to put a cannula in, and finally, the doctor is successful. Again, it’s painful to watch. But if I helped you by being there with you for a second – it was worth it. Maisie was exhausted, and so was I.
By 6:30am, some of the blood tests come back and there are signs of a blood infection – we find out days later that it is sepsis. Maisie needs to be in hiopital for the next 5 days on IV antibiotics. The doctors seem to be leaning on the symptoms being an infection rather than a heart problem (as they believe it would be highly unlikely to have both and to present so well). So I’m starting to feel so much more positive. In the meantime, they plan an echo (a type of ultrasound) of the heart and a lumber puncture to rule out meningitis.
As the oxygen levels in Maisie’s blood start to dip again, the doctor puts an oxygen mask on her face. Later the nurse moves it to by her face as it is far to big for her.
At home, Lowen has woken up and is watching tractors on TV with Granny and Grandad. He is fine and easily distracted, but asking after Mummy and Baby. Ben drops him at nursery and Granny and Grandad head to work (although very worried) – they don’t stay long and make a u-turn to the hospital later. Ben arrives at hospital with more clothes for me around 8am and gives Maisie a big kiss and a cuddle. He is relieved that she looks okay.
Around 8:30am we meet Maisie’s consultant to do the echo. And then everything goes crazy. Maisie detests the echo – being held down again with the instrument pressed on her chest. I give my finger for her to suck on which calms her down a little and stroke her tiny head telling her it’s okay. Her chest strains to breathe and the crib she is in rocks with effort. It’s although she is suddenly giving in to it all – now that she knows it is safe to do so.
The Dr can tell that something is very wrong. She looks serious and silent. Ben asks if she can see something. And she says yes, there is something very wrong and she will need urgent surgery in Bristol today. Tears start rolling down my face as I continue to try to calm you and keep you still. It all seems completely unreal…