Parag, one of the Neonatologists, verbalised a couple of facts I’ve been trying to avoid realising in the hope a miracle (or a few) would occur. I asked him not to say but he did anyway. That’s ok… I’ve been unable to push thoughts of what’s coming to the back of my mind without them popping back up in the forefront for a few days now. I guess there’s no good time to hear bad news…
So the future as Parag sees it looks like this:
- Rose has a narrow oesophagus that will inhibit her ability to eat (up to about 5 years). Initially this will be a mechanical issue (as it is now) but it will develop into a behavioural issue requiring intensive therapy.
- She will not be able to breastfeed effectively.
- She will need a gastrostomy for years to ensure we can give her the nutrients she needs to grow (I wonder if they’d do a 3 for 1 deal – boys could benefit too – nope – too soon for jokes!).
- Parag also said we will need help at home in the form of a nurse which is pretty confronting and it’s not something I want but I guess we will need to feel our way there.
Still waiting on results from sleep study being done on Monday and pH study that was performed last week. Results may mean additional procedures but will cross that bridge when we come to it.
I’m putting my new theory about NICU crying into practice with a vengeance this morning. And potentially for the rest of the weekend! I’ll focus on counting Rose’s many blessings another time..