We’ve been skirting around the issue, trying to ignore it… hoping it’ll resolve itself with growth, over time, that it’s something else.. anything, but today we had a visit from ENT and I showed them the attached recording. Joanna had asked us to record the volume of Rose’s crying.
Rose’s current issues with breast feeding, speaking and vomiting strongly support some vocal chord paresis. So it’s likely talking, eating and breathing will be long term challenges. Joanna previously thought Rose’s cords looked good but she didn’t guarantee anything and it seems the recording of her cry was the missing piece of the puzzle.
Whenever the reality of Rose’s situation hits me (like today) I feel overwhelmingly guilty for not actively telling them to
leave her be
at the beginning but also for growing that teratoma, even for willfully bringing Rose into existence. During the first few weeks all that would come out of my mouth when I spoke to her was “I’m so sorry, you poor thing”. I think that’s probably a common thing for a NICU mum (or any mum with a sick child) to feel.
One of the NICU Fellows told me soon after Rose was born that one day she’d be a beautiful young woman with no memory of what it took for her to become so.. I sobbed in disbelief when she said it but I’m coming around to believing it as really it’s the only helpful vision for me to hold on to. It does strike me now of course that she said woman… not baby or child… I’ve only just received that part of the message now, that Rose’s struggle will be a long one.
However we got here my job is to help Rose overcome her challenges. I’m going to try very hard to focus on this as I think me aiming for a normal baby is holding her back.
She is rather lovely. She has these big long eyelashes and she speaks with her expressionful eyebrows to everyone and anyone who comes near her bed, she rarely breaks contact first and she’s an expert follower. She smiles in an open joyful way, often and she rarely cries or gets cross (attached video not at all representative.. She was in the middle of NGT and high flow replacement). She self settles easily and she reaches for things and listens to stories intently, sleeps through the night!! I reckon there’s a market for NGTs for well babies 😉
So – I’ve written myself to a place where instead of pretending it may not happen, I will be requesting a date for her Gastrostomy at rounds this morning and asking for a way forward plan. Wish me courage and Rose luck!