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Why I Couldn't Remember How It Felt When My Baby Was in Heart Failure

Michelle's daughter in the ICU
Michelle’s daughter.

I’ve wanted to write a post about Tilly’s open heart surgery for a while now – mainly to remind me, and those close to us, how far Tilly has come since the time she was a poorly little baby and in heart failure.

My memories of  that time are pretty vague. It was seven years ago – in fact, her “heart day” or the day of her surgery, was September 29, 2009. But even though it was the scariest period of my life, I just can’t remember how I felt during that time.

I’ve found emails I sent to my husband, or to friends in the time leading up to her going into hospital which I hoped would trigger some memories of how I felt. But even those are actually quite devoid of emotion – matter of fact and explanatory, but with the absence of the feeling of fear and dread I would have expected from a new mother whose 3-month-old baby girl was in heart failure and requiring life-saving open heart surgery.

I think I was in a bubble. Perhaps it was the hormones of being a new mum, and one who was faced with many fears from the moment her daughter was born. However, I wasn’t aware of the reality of the situation we were about to face. I always said it was because I knew she needed the surgery; without it she would die. But if I think back to how I was at that time, I don’t actually believe the prospect of us losing our daughter had registered with me.

In the main, I put on a brave face in the hospital – I was the parent who carried her into the little room for her anesthetic and watched her go to sleep before nine hours of surgery. My husband broke down on the walk to the operating theatre and couldn’t do it. I was the one who strode into ICU after her surgery, didn’t shed a tear when I saw her lying there hooked up to what felt like hundreds of machines that made different beeps every few seconds and asked the nurses a whole of questions. In fact, other than the few tears I do remember shedding when I walked away from the operating theatre, I don’t remember crying. I don’t remember how I felt.

My coping mechanism was to put up a very thick wall to protect myself from the emotions that would have been thrown at me during such a traumatic and scary time.

That wall didn’t get ripped down until a good couple of years ago.

It’s only now I can sit and look at these photos of my little girl and feel a little of how I was probably feeling, but was too scared to express to anyone, including myself.

I feel an immense amount of sadness that my daughter had such a difficult start to her life. That in those early months, she spent so much time at hospital getting test after test, and her little heart was struggling to keep her alive.

I feel desperate to hold and protect the little baby in the photos and make everything OK for her, to take the pain and suffering away.

I feel the fear of walking into that operating theatre and laying my crying baby girl on the bed. Of watching her being put to sleep by the anesthetist, knowing her heart would be stopped and her rib cage opened up so that the surgeon could get to work on a meticulous nine-hour operation to mend her broken heart.

I feel the desperation of walking aimlessly through Kelvingrove Park and Kelvingrove Museum with my husband, unable to find a distraction for the anxiety and agitation caused by the helplessness we felt during those nine hours. I feel the eerie silence of our room in the parent accommodation at Ronald McDonald House during the final hour of waiting for news that the surgery was over.

I feel the urgency of answering the phone when it rang, the anticipation of listening to the nurse give her quick update, and the immense relief on hearing the news that the surgery was successful and she was stable in ICU.

I feel the nervousness of walking into the ICU and the uneasiness and heartache of seeing all of the severely ill children in the unit, some who had been there for months and some who were not expected to leave.

I feel the shock of seeing my daughter lying there on a life support machine with cables and lines protruding from all different parts of her body. I feel thankful and incredibly lucky that such a wonderful surgeon and team of doctors and nurses saved my child.

I feel love, sadness and happiness all at the same time.

The story of Tilly’s recovery from her surgery has been told before – in short, she lived up to the meaning of her name Tilly, Mighty Battler, to be moved from ICU to high dependency after less than 48 hours and to be sent home after another week.

Her scar, a little heart defect which hopefully won’t require such major surgery in the future, and these photos, are the only remnants of that time of our lives. And, hopefully, when I try to remember how I felt, this post will tick that box.

Follow this journey on  A Different Journey

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