We have two new faces at Butterfly home at the moment, and we’d love you to take a moment to get to know them. They both arrived late last month and are settling in well.
Lydia is 5 months old. She’s been having difficulties feeding and her history shows that she’s also been getting a lot of infections. She’s a tall baby – though of course, she doesn’t stand up yet, so perhaps it’s more accurate to say she is long. Her hands have some congenital abnormalities and she may have other issues too – it’s too early to be certain right now.
We are working on building up her strength and carefully observing her developmental abilities and her physical symptoms. Its pretty clear that a brain scan and a cardiac ECHO are on our “to do” list in the future, but those things are not urgent. Her immediate need is a nasogastric tube and a high calorie diet. Nutrition and endless cuddles are today’s priorities.This little one needs to know she is loved just as she is.
Luca is two years old. He’s been living in the SWI for quite a while, and feeling a bit scared about being somewhere new. Luca has a heart condition which has caused increased pressure in his lungs. He’s already had some surgery, but the changes in his lungs make future operations more challenging. Surgeons are not sure whether it’s worth the risk. We’ll be seeking specialist advice about the best pathway for Luca – we desperately want this sweet little guy to have every chance for a healthy life.
Luca is already amazing us – he is so active and his oxygen saturation is fantastic. Sometimes we have remind ourselves that he has a severe cardiac issue. He can walk using a walker or with a friendly hand to hold. In fact, he literally flies around the place in his walker. He can understand and follow simple instructions, and is just an all around sweet little guy.
So that’s our new kids – they’ve already settled in super well, and it feels like they have been part of the family forever. Please keep them in your thoughts. As always, we cannot say how things will play out for our precious ones. We are standing at the beginning of a long labyrinth of tests, scans and specialist appointments. There’s no predicting what we will learn about their medical situations, but we already know their value as unique and precious humans. Luca and Lydia are each perfect and beloved – thank you for welcoming them into this big Butterfly family of ours!
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