4 years at home

Wednesday 22nd January 2014 was the day we had been waiting almost 10 weeks for.

We'd arrived at Great Ormond Street Hospital on Wednesday 13th November 2013, honestly believing we would be home within two weeks. How naive were we!?

It was a struggle to readjust to the outside world. I had become so institutionalized during our long hospital stay. I'd also been used to only looking after myself that suddenly I was home with a 7-year-old, a two-year-old and a 5-month-old who was tube-fed and on a cocktail of medication.

Martha fed every three hours around the clock, which meant sometimes I was up feeding her at 2am, 5am and up for the day at 7am. Each twilight feed took an hour to complete and sometimes she would bring the whole job lot back up meaning a full outfit and bedding change for her and for me.

After 10 weeks in hospital, I hated that I wasn't enjoying being at home because it was so difficult. It seemed to go on forever and I was permanently exhausted and always on edge waiting for Martha to start displaying signs of heart failure or respiratory distress.

4 years on - those dark early days seem as though they flew by. I've been able to reason that it was all worth it to get Martha Grace to where she is now. Would I do it again? Absolutely!!!

It's actually hard to believe that since we've brought her home 4 years ago, she's had two further open heart surgeries and an operation to replace her Pacemaker generator. She's going to school full time like a Heart Healthy 4-year-old.

She'll probably need further surgery soon, they say that the further you are along since your last surgery - the closer you are to your next one. That's tough for us to handle, putting her through the physical trauma that she's been through so many times already.

Did we think she'd end up having 5 major operations before she was 5 years old?


We didn't let ourselves believe she'd survive the first one - we didn't think we'd still be lucky enough to have her walking the earth with us all these years later.

For all it's ups and downs - the last four years have been (overall) amazing. The little girl who took us to hell and back is totally worth it. She has completed our family and I can't remember what life was like before she came along. I certainly don't know what it's like not to worry.

What we have right now it exactly what we wanted when we decided to have a third child. To be a family of five. A big brother and two little sister's close in age to grow up together. But without the hard road we've traveled to get here, I don't think we'd be as grateful as we are today for all that we have.

And there's not a day that passes that I don't pray for the families who didn't get to take their babies home.


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