Life limiting disorder



So, where are we so far?

Baby Maisie is currently 15 weeks and five days old: 110 days. 110 days she has been here with us. For 110 days, Lowen has been a big brother, we have been parents to two children, Auntie Jenny and Auntie Abby have a niece and Ally, Derek, Jan and Graham have a granddaughter.

Such a tiny being weighing less than 11 pounds has certainly made an impact on us and has been through such a lot in such a short amount of time.

  • One open heart surgery
  • Two 24hr ECGs
  • Three ambulance trips (one with blues and twos)
  • Five x-rays
  • 20 nights in hospital
  • Numerous attempts to put cannulas and lines into her tiny veins…

After surviving heart surgery at only 18 days old, amazing Maisie was diagnosed as having moderate to severe deafness in both ears. We thought all her bad luck was behind her, but after a routine follow up, her heart was still too big – and she was rushed to Bristol Children’s Hospital once more. Here she was given multiple tests: ECGs, a 24hr ECG, various echos, an ultra sound of her tummy and brain, numerous emotional blood tests, tricky urine tests, prods and pocks.

And now, we wait.

We could be waiting for 3 months for test results.

Test results which could prove inconclusive. Test results which could tell us Maisie only has months to live. Results which could tell us she has a rare, life-limiting disorder that stunts her growth and mental abilities. Results that tell us what she has is incurable, untreatable, with no hope. We don’t even know if there is any chance of a positive outcome.

I’m not entirely sure how we are getting through the days. Whether we are in denial? Or simply too busy with our new family. Or whether we are just taking solace in this short waiting period – where she is stable, happy and healthy on the outside, and there is hope that everything is going to be okay. We are spending our days at home happily with our family, and we have no idea how long this is going to last for – so we’re making the most of it. Spending time with family and friends, giving Maisie new experiences, making memories with our new family of four, and trying our best to be happy (and forget about these tests and constant hospital appointments hanging over us).

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