To Sleep or Not?

imageWhen I became a Mum and attended my first mothers group, I used to stay very quiet when the topic of sleep came up …. And it ALWAYS came up. For those who know me, it’s unusual for me to keep quiet about anything.

I would watch these poor mothers rocking and cooing to their babies willing them to sleep and I was rejoicing inside that I didn’t have to worry about that.

My beautiful firstborn, Orlando, although born five weeks early slept! When he was six weeks old he started screaming for two days and wouldn’t stop. I knew something was wrong. Reflux was diagnosed, so bad his oesophagus was ulcerated. After two days of medication he was my content little man once again.

At six weeks old he slept six hours straight, at eight weeks old eight hours straight, at ten weeks old ten hours straight and you guessed it at twelve weeks old he slept twelve hours straight. He was a dream baby.

Fast forward four years and our gorgeous little girl arrived, Indiana. An amazing feeder and equally an amazing sleeper. We were building a house when she arrived and lived between my parents and my in-laws, one hour away from each other. This kid slept anywhere. I would wrap her after a feed, put her on the floor, in the pram, on the grass, in her cot and she would sleep.

Then Lucia entered our lives. Sure she has had an awful start to life, born at twenty seven weeks, lost her identical twin sister in her first week of life, nearly lost her own life on at least four separate occasions, had to learn to breathe, had to learn to breathe, suck and swallow, had to learn to breathe without assistance, meanwhile she was trying to grow and learn about her surroundings …. A hospital filled with equally sick babies and anxious parents and beeping machines that never stop.

She learnt to breathe and learnt to sleep. She slept in intensive care, she slept in Hugh dependency and then she arrived in special care. She stopped sleeping. She screamed. Unless she was safe in my arms she screamed. I walked in to Special Care one day and the nurse thrust my crying sweetheart in my arms telling me they’d tried everything.

I did the instinctual thing – pulled out my breast and fed her. She gulped it down and settled to sleep in my arms. I loved to hold her for as long as I could because I felt so blessed that she survived. The moment I tried to place her in her cot the eyes flung open and she howled.

She was medicated for reflux so it couldn’t be that. The medical staff ruled out everything. They believed that my gorgeous girl was grieving her sister and needed to be touched. If you think about it, from the moment the twins were conceived they had each other. Someone to hold onto whenever you were scared. Now she didn’t.

After three months in hospital our blessed miracle came home. She loved the daytime because there was always a child or a loving adult to cuddle her. She would only sleep being held or being held. There was no other option.

At night she was usually so exhausted from not much sleep that she would sleep for a few hours. It was nearly on cue every night, between 10pm and midnight she would wake, hysterical screaming and she would continue screaming until 2pm the following day.

I’m not sure why it was 2pm but probably when she couldn’t scream anymore.

We went to Tresillian and left in an ambulance after she repeatedly stopped breathing. When she was well again, seven days in hospital we went home again and she continued to scream. Not as much but still enough not to cope.

My husband, parents, sister and friends all came to stay to take turns to hold our screaming child.

The months went on and we just did whatever we could to survive. Most nights she slept with me (against SIDS-but she was attached to a hospital apnea monitor), I’d have my top off and gave her free access to the breast. She would wake up screaming and find the breast and Calm herself to sleep again. This could occur ten times, fifteen times, most nights I lost count.

I had become those mothers from mothers group – all I did was ask health professionals about how to get her to sleep. I looked like an exhausted crazy woman. Everything they suggested we tried and nothing worked. At one point I suggested a larger dose of reflux medication to which they told me it was already double the suggested dosage. At 2.5 she is still reflux medicated. Miss a day and it’s a nightmare.

One fine day my gorgeous girl turned two and with tears in my eyes I nearly shook our GP for help. He suggested Melatonin. The natural hormone produced in our bodies to induce sleep.

After two nights she was sleeping – we couldn’t believe it. I relished the fact. My face no longer looked so scary from deep black marks that had resided around my eyes for two years, I felt human and looked human. She started talking and walking, all these things that her brain clearly didn’t have the energy to teach her.

We had a month of bliss and then her body decided it preferred lack of sleep. I cried.

Since Lucia was born I have cried over many things; the loss of our beautiful daughter, the terrible journey of a premature baby through the NICU and beyond, the time I didn’t spend with my other children, the time I didn’t spend with my husband, family, friends, exhaustion. I cried over exhaustion so many times. I cried when she refused the breast at eighteen months, my lifeline was gone.

I cry a lot for Lucia. Although my darling girl can not get to sleep with out the help of Melatonin she only stays asleep for about four hours. After that she wakes distressed, she needs comfort, some nights she cries constantly until the early hours of the morning until she can cry no longer. At those times I prop up my pillows and hold her and cry most of the night with her.

Most of our nights she wakes, my husbands brings her into our bed, he leaves and closes the door. The entire night she sleeps with her body entwined in mine. Sometimes she insists on her face on top of my face. The entire night she wakes approximately every ten minutes and whimpers and after soothing I get her asleep again. She never sleeps soundly, she never sleeps still, her little body is restless and forever moving.

When daylight comes her little body often wakes tired and unhappy. She eventually smiles at me and my heart breaks. I don’t know what else I can do to help her.

Today I watched her at the park with her siblings, she wandered around alone chatting to herself. She is a tough, confident little girl. A twin less twin who should have her best friend beside her.

When I try and get through my day at work, tired and sometimes totally exhausted, I am always excited to get home and see my cherubs and I realise that although it’s hard I can survive without too much sleep and so can she. What gets me through is hope.

Hope has been the only thing that has got me through Lucia’s life.

Today I hope that one day she will sleep soundly send blissfully.

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