Entwined in sleep

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I had a baby that doesn’t sleep.

That baby turned into a toddler that doesn’t sleep.

That toddler turned into a child who doesn’t sleep.

She is my fourth child. Her identical twin sister died two days after they were born.

With my first two children I used to think mothers who said their babies don’t sleep were probably exaggerating it a little bit or didn’t have a good routine. How wrong I was.

I in for a rude awakening.

I remember walking into the Special Care Nursery when she was about ten weeks old. She was actually supposed to still be growing in my belly at that point. She had been in Intensive Care and High Dependency for months and I felt Special Care was this new relaxed world where I could actually be her mother. I arrived at 6am most mornings to bath and feed her before hospital life ‘woke up’. The nurses shift changed over around 7-7.30.

This particular morning as I walked down the corridors from the NICU entrance to Special Care I could hear a baby screaming. Like she was being tortured and without a doubt I knew she was mine.

When I entered the nursery the nurse looked relieved to see me. She was bouncing my baby in her arms. It seems my darling had been screaming for hours for no apparent reason and she was thrust into my arms as the nurse escaped with relief.

I soothed her with a warm bath, a massage and a breastfeed and her eyes rolled back into sleep. Yes – this is the part of motherhood I was waiting for again.

This became a pattern. She hated to sleep. She loved to be held but hated to sleep. The Drs adjusted her reflux medication, her bowel medication. Increased her feeds, decreased her feeds. She was not happy. The neonatologist told me it’s common for identical twins who lose their twin to suffer from grief.

So I held her.

I fed her.

I patted her.

I wrapped her tighter.

I made her warmer.

I made her cooler.

I cried with her as she screamed.

I rocked her.

I walked with her.

I fed her constantly to get her to sleep.

Finally one day we got to go home and I figured a routine at home would get her sleep pattern sorted.

No – I was wrong.

For months my baby would wake somewhere around 11pm in the evening and she would scream until 6am the next day. She even sobbed through her feeds.

We took turns. My husband, my Mum, my Dad, my sister. Over and over again. Nothing helped.

At four months Tresillian took us. She slept beautifully during the day and then like clockwork at 11pm the screaming would start.

We left Tresillian in an ambulance as she had repeated apnoeas and they preferred babies to be pink not blue whilst they slept.

We came home again after a week in hospital and she was calmer and then it started again.

As she grew she was nearly always attached to me. Because she had an apnea monitor attached to her I took to sleeping in my bed with her so she had free reign of her milk. Some nights she would feed over fifteen times and I knew it was comfort. I knew I should try and break the habit but anything that got her to sleep and enabled our family to sleep was a godsend.

Every night she would go to bed in her cot and then around midnight she was hysterical and she spent the remainder of the evening entwined in Mummy in our bed.

At two and a half we tried Tresillian again. They apologised and let us go home after seven days saying they were sorry they couldn’t help us.

And so tonight I walk into my room and find my three and a half year old spread-eagled horizontally in my bed and I cry.

I cry because I cannot spend another night with her legs wedged into the small of my back.

I cry because I can’t go another night being woken repeatedly by her cries.

I cry because even four hours sleep in a row would be a pleasure.

I cry because I don’t know how to help her.

I cry because I am just so tired.

I cry because I feel awful that I’m thinking and feeling these things.

I cry because if her sister survived I know they would likely be sleeping in a double bed together. Right now. They would be giggling when I tuck them in and read them a story and finishing each others sentences. I would check them when they’re sleeping and find them perfectly entwined in each others bodies like I saw so many times in the ultrasounds. They would be sound asleep together and at peace.

I cry because that is not our life but a hope and prayer that was never fulfilled.

I cry because tonight when I look at her beautiful face I can’t resist her.

So I climb into bed with her and in moments she realises my presence and shuffles her body towards me to sleep entwined in my body.

Maybe tomorrow she will do it differently and then I’ll miss her.

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