Today is a big day - Amber is getting her nasal gastric feeding tube inserted to supplement her feeding. We will still be able to feed her orally but this will help give her the extra calories she needs that we have struggled to get into her or we have got into her but have later been vomited up.
This has been a major psychological hurdle for us as Amber will now look medically unwell & it will open us up to questions like "what's wrong with your baby?" which can sometimes be answered matter-of-factly & at other times cannot be spoken about without choking up.
She has done well to get to 18-months-old & still take the bottle, pureed food & I am also still nursing her which is a great source of comfort for us both. I believe this has helped keep her immune system strong & has been at times the only thing she will take when feeling unwell.
The tube also means that Amber will no longer be attending daycare where she has thrived being around other children & I will be dramatically reducing my work hours to care for her. Our decision to keep Amber in daycare has been a somewhat controversial one as the Niemann-Pick child is susceptible to picking up germs & any kind of infection can have devastating consequences with their compromised respiratory system. However we have felt that Amber has up to this point been strong enough to cope with it & the benefits she has gained from the stimulation & interaction has outweighed the risks. We know her life will not be a long one but we have done our best to make it a good one.
Words are insufficient for describing how wonderful all the staff at her daycare have been. They truly are a part of our extended family & a significant part of Amber's life. Our door remains open to all her carers at all times as they walk this journey with us. We have shared many smiles & tears together already & I don't anticipate this will end. It is my intention to keep making short visits with her to the centre at least twice a week as I know she gets unsettled being at home all the time. While her body is slowing down her big blue eyes still wander around taking everything in. The smiles are fewer but her eyes light up when she is happy & as I tell her half-brother, Luke, she is smiling on the inside.
Oh Laura, what a sweet and hard post. I am sorry that yours and Amber's world is about to change so much, there is not easy way, it just is hell and I am so sorry. I loved this post though about Amber's life and all of the love in it. I nursed Trek his entire life too and it brought us both so much joy and comfort as you mentioned it does for you and Amber. I am sending you so much love as you head down this new path with your sweet baby. much love ,Chelsea (Trek's mama)
ReplyDeleteThank you so much for caring, Chelsea, when I know you & your family have been through so much already. Although we have not had any direct contact (Dylan is the voice behind her Facebook page) I do gain strength from yourself & the others who have walked this path. It speaks volumes that so many of the families who have lost a child to this hideous disease continue to offer their support. What a horrible thing it is that draws us together. XX to your family,
ReplyDeleteLaura