Children’s Heart Week Day 7: I am a heart mummy

I am a heart mummy.

 

From the day I discovered that my little girl’s heart had not formed quite as it should have done, I became part of a community of wonderful, supportive people. A community that I would never have wished to have become part of. And yet I have been very blessed through being part of it.

 

The dark moments we have endured on our journey, I would not wish on my worst enemy. And yet I am grateful for them. As a result of them I have my beautiful little girl with me today and I hope I have emerged a stronger person.

 

I have drawn closer to God during this journey. In those darkest moments, I know that I can do nothing except pray and trust in Him.

 

Me holding Jessica in intensive care - "Children's Heart Week Day 7 - I am a heart mummy"

 

I am a heart mummy.

 

I have sung my child to sleep sitting on a trolley in an anaesthetic room. Trying to stay calm whilst full of fear that I will not see those beautiful little eyes open again. Always managing to stay strong until the very moment I walk out of those doors, or my child disappears from sight in the arms of the anaesthetist. Then, and only then, will I break down.

 

Returning to an empty cot on the ward is always horrible. Packing up our possessions ready for the transfer down to the paediatric intensive care unit (PICU) after the surgery.

 

My next move is nearly always to head for the hospital chapel, to light a candle. I pray for the success of the surgery, for the surgeons operating on my child and for the other children on the heart ward.

 

Then the seemingly endless wait. The sick feeling in the pit of my stomach when the surgeon finally appears. The huge rush of relief on knowing that my child has come through yet another operation.

 

Me holding Jessica in intensive care

I am a heart mummy.

 

I have sat for hours and hours beside a hospital cot, at all times of the day and night. Watching my child, the beeps of the machines and monitors constantly in my ears. When I leave to grab a few hours’ sleep, those beeps almost haunt my dreams.

 

I have learned how to feed my child through a tube and how to prepare her medicines. Getting to grips with the knack of picking her up without lifting her under her arms whilst her chest wound heals.

 

Jessica in her car seat coming home from the hospital for the first time

 

I am a heart mummy.

 

I have known the joy of walking through my front door for the first time in weeks, holding a precious bundle in my arms. It was a magical moment that once I hardly dared dream of. Waking up in the night many times and checking her closely, just to make sure that she is breathing. Checking her colour, making sure she is warm. Then snuggling back down beneath the covers and thanking God again for this precious gift.

 

If you look at my daughter today, you would almost certainly see a child who appears to be completely healthy. You would notice her big beaming smile but probably not the fact that her lips are slightly purple in colour. You would notice her rosy cheeks. These rosy cheeks would perhaps lead you to comment that she is probably teething. It isn’t because she is teething. She always has rosy cheeks. These are due to her heart condition.

 

You would probably not notice the top of her scar which is often just about visible above the top she is wearing. It is so neat and has faded so beautifully that it does not attract attention. She is running around and playing just like the other children. I am probably the only person who sees that she is slightly breathless, that she is not quite able to keep up with them.

 

She is a child who lives life to the full, who exudes joy and happiness. Her godmother once described her as a “joy carrier” and that is a very apt description.

 

I am a heart mummy.

 

I try not to look ahead. The future has the potential to be dark and scary. If I think too much about what could potentially lie ahead, the fear would almost paralyse me. I live day to day, enjoying the moment, thankful for what I have now. Thankful for all the wonderful medical staff who have helped get my little girl to where she is today. Thankful for all the prayers, love and support of friends and family and everyone who has supported us on this journey.

 

Today’s charity: Friends of PICU

Today’s highlighted charity, whilst not really a ‘heart’ charity is nonetheless quite a significant one for our journey. It is one which is very close to my heart. Friends of PICU help support children on the paediatric intensive care unit in Southampton General Hospital and their families. They provide vital equipment and services which are not normally provided by the statutory authorities. They help maintain the parents’ accommodation next to the unit and fund major projects, such as buying a new retrieval ambulance and funding a psychologist to help support the children and families through what can be a very traumatic time.

2 thoughts on “Children’s Heart Week Day 7: I am a heart mummy

  1. Hi Louise, thank you so much for this blog. I am just starting my heart journey. Baby has been diagnosed with hypoplastic left heart syndrome. Southampton are beyond wonderful and I still can’t get over the time they give over, at not one point have i felt rushed or unimportant. I am
    Sorry to read below that Jessica is no longer with you but as you say she lives on in your heart. Love and well wishes to you all xxx

    1. Thank you Victoria. Southampton are a wonderful hospital and your little one will be in the safest possible hands with them. I wish you all the best on your heart journey and hope your little one will do well x

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