Seventeen-month-old Nora spent 10 weeks in Neonatal Intensive Care and is now under the care of eight different teams for a number of challenges linked to her Primordial Dwarfism.
A baby who was born nine weeks early at Glasgow Children's Hospital, weighing just one pound and two ounces, with a rare condition has 'never stopped smiling' despite the challenges she faces.
Nora’s parents, Amy Mcanish, 36, and Ruaraidh Mackay, 33, wanted to share their story to highlight the support that they have received for Nora’s medical care and one major part of their journey, her feeding tube.READ MORE: Glasgow M8 delivery rider 'terrified' after cycling wrong way onto busy motorway“We got to feed our daughter before we held her.
When the family got home Nora was still being fed expressed milk every three hours. She also suffered from bad reflux and needed be kept upright an hour after she was fed. Amy and Ruaraidh would do shifts of who was feeding her and staying awake with her through the night. “The milk from the tube goes directly into her small intestines, and we now have a pump which has changed our lives for the better," Amy said. "Having the pump means we don’t need to get up through the night as it feeds her automatically, so we have discovered she’s quite a good sleeper.
Next steps for Nora involve looking at a PEG-J. Amy anticipates this will involve some lengthy discussion with her medical team who will help guide them through all options and scenarios because Nora is so petite.She said: “Nora is a complex wee thing but is such a happy wee girl. For any parents just starting their feeding tube journey, it’s not as bad as you think. At the time you think ‘this is just life now’ but you just need to find your routine and life gets easier.
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