Little Hearts, Big Love - Finding gratitude amongst the grief of life without our heart angel
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Tag Archives: Children’s Heart Week

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

18/05/201417/07/2017
Me holding Jessica in intensive care

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… Read More

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Children’s Heart Week Day 6: Welcome to Holland

17/05/201417/07/2017
Windmills in Holland

I have seen this essay shared many times by other heart parents, and parents of children with additional medical needs. It is a beautifully written piece and one which helps describe how I felt when we were first told about our daughter’s heart, and our feelings in the weeks and months following the diagnosis.  … Read More

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Children’s Heart Week Day 5: Feeding

16/05/201417/07/2017

Feeding is something that can be a big cause of concern for parents of children with CHD. They often require more calories than heart-healthy children but can get quite tired and struggle to take in enough calories. Whilst Jessica was breastfed as a baby, she was not able to get enough calories from my milk… Read More

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Children’s Heart Week Day 4: Hospitals

15/05/201417/07/2017
Jessica at a few weeks old asleep in a cot at John Radcliffe hospital

We’ve spent quite a lot of time in hospital over the last three years. Jessica has been under the care of six different hospitals since she was born for various reasons. She was born at Princess Anne Hospital in Southampton. Shortly after birth she was transferred to Southampton General Hospital. This is where her heart… Read More

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Children’s Heart Week Day 3: Jessica’s HLHS journey so far

14/05/201413/03/2018
Jessica on PICU after her Glenn procedure

Like many other children with CHD, Jessica has needed several operations. Her heart can never be fixed – surgery can only help improve her heart function. The usual surgical pathway for children with hypoplastic left heart syndrome (HLHS) involves three procedures. These are the Norwood procedure, Glenn procedure and the Fontan completion. The aim of… Read More

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Children’s Heart Week Day 2: The 20 week scan

13/05/201413/03/2018
Jessica at the 20 week scan

It’s three years today since we were told that Jessica was unlikely to be suitable for surgery and that she would be offered comfort care after she was born. However, a throwaway comment about in-utero surgery at that appointment led us to the first step in Jessica’s journey.  This pioneering procedure at 28 weeks’ gestation… Read More

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Children’s Heart Week Day 1: Some facts about CHD

12/05/201413/03/2018
Jessica in intensive care after her Norwood procedure

This week (12-18 May) is Children’s Heart Week. I have two beautiful daughters, one of whom has a severe and complex congenital heart defect (CHD) called hypoplastic left heart syndrome (HLHS). This means that the left side of her heart is severely underdeveloped. We first discovered that Jessica’s heart had not developed correctly at our… Read More

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I'm Louise, mummy of three - Jessica, forever six, who was born with half a heart and lives on in mine; and heart-healthy Sophie (born 2013) and Thomas (born 2018). I blog about living with grief after child loss, crafts, days out and the little moments of family life.

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A square cartoon showing the Little Hearts, BIg Love logo with four interconnecting hearts (3 red, 1 blue), cartoon drawings of a woman, a toddler boy, a little girl, a little girl with angel wings and a man and text above "finding gratitude amongst the grief of life without our heart angel"

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