Maisie's story

Part Four


Wednesday 13th June

We visit Maisie early in the morning. She looks a lot better. With colour in her cheeks. It is wonderful to see her. I miss her so much. As a mum you’re used to your newborn being permanently attached to you: either feeding, cuddling, rocking or holding. So it was strange being empty-armed so often.

That afternoon we are given a place to stay in the Ronald Macdonald house: which is simply amazing. Ronald Macdonald houses are large houses close to hospitals for parents and their children to stay whilst their children are being looked after. I don’t know what we would have done without them. We’d have had to stay in hotels as we didn’t know anyone close to stay with. It would have cost hundreds of pounds. They really were a home from home, too. With big kitchens, comfortable bedrooms and en-suites.

And I try to keep busy. Making a plan. I make a pumping schedule. I’ve contacted the midwife I had with Lowen (who has become a great friend) who is a breastfeeding expert to ask for her advice. I need to pump 8-10 times a day, aiming for 750ml, and at least once during the night.

I hate pumping, it is nothing like breastfeeding, it is so ineffective, partly because it’s missing the love. The female body needs a release of endorphins or “love hormones” to let down milk. If you’re stressed or upset it’s even harder to pump milk. It’s so much easier if your baby is there with you (and they are so much better at it than a breast pump is too).

So I tried to pump as much as possible close to Maisie’s bed. It made all the difference – I was always able to pump more. I listened to music and I listened to my hypnobirthing meditation tapes (I haven’t been able to listen to them since she died). And I watch her. I watch her with Ben. I have really lovely memories of sitting pumping, listening to my music with my headphones, and watching him stroke her head, gently talking to her.


I think I could have easily stayed with Maisie all day every day, just holding her hand and stroking her head. And part of me regrets that I didn’t do that. But Ben struggled being there. He didn’t feel like there was much we could do, and I think he really didn’t like seeing her so ill – he hates hospitals for a start. So we compromised. We spent quite a lot of time in the parents room of PICU, eating rounds of white bread toast, and we’d come in and out of her bedside in small bursts.

The PICU nurses were incredible. Medical experts themselves. They worked like human machines, never stopping, working meticulously in their 12-13 hour-shifts, everything neat and perfect, everything just-so. They put you totally at ease. They had their own phone number, so we could phone in the middle of the night or early in the morning if we were worried.

We found ourselves in the strangest situation. Rather than rushed off our feet looking after a toddler and a newborn, we found ourselves wandering the streets of Bristol with no children to look after. It was like we were on the worse city break ever. We had to get out of the hospital every so often – hopefully it made us fresher for Maisie. We looked in the shops and bought her little things to brighten up her bedside: a glittery ‘M’, a card, a heart mobile, paper roses. And we went out for meals: talking about Maisie and how we were feeling as much as possible. When we could have closed up or turned on each other, we actually managed to be really open with each other. We seemed to have the same feelings, and that helped us get through those days.

I think I was the more positive one of the two of us. Whilst Ben would break down every now and then, I actually barely cried once we had got to Bristol. I totally believed she was going to be okay, it was just something we needed to get through. I used to want to run down the hill to see her for each visit, whereas Ben would usually be a little more reserved.

But we got through that first day. The doctors weren’t sure of the best way to proceed. Maisie needed heart surgery, but they also wanted her to be as strong as possible for the operation, so wanted to hold off for a few days to give her time to fight off her infection. It was possible they may do the operation tomorrow, or possibly Friday. I secretly hoped it wouldn’t be tomorrow. Tomorrow was my birthday, and I just had a really bad feeling about it. It seemed like a bad omen. We just had to wait and see.

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