I was really nervous this morning about receiving the results of the sleep study. Seems I had good cause. Rose is having a significant number of apnoeas during sleep. She had about 13 hours of sleep over the 14 hour sleep study (see the lengths I’ve gone to to actually have a child who sleeps at night!!?).
During one sample hour she stopped breathing 37 times. Periods of not breathing were as much as 16 seconds long.
She’s still oxygenating well but left without support she would deteriorate. It doesn’t feel like it now but it’s probably really good for her that the issue has been identified early otherwise
“her learning could be affected”
[that’s the sleep study team’s language].
So she’ll be on C-PAP when she’s asleep for a couple of years. I need to stop wishing for a well baby. It’s just not going to happen. I know that’s probably really obvious to anyone following this blog but I just keep wishing and hoping that the baby I imagined I was having will materialise, given time. I just don’t feel able to let go of that yet. I do need to though and I don’t mean that I don’t accept Rose. It’s just acceptance of everything that’s happening is such a PROCESS and I’m lagging behind a bit.
I wonder if many of you read that Good Weekend article about the Australian family living in Israel with 3 kids, 2 of whom were born with a rare genetic disorder. A quote from the article resonated with me and I am trying to live by it as it’s just so true… but possibly my character won’t be strong enough.. I AM trying though.
“My dad gave me good advice,” he says. “He told me, ‘Don’t think, “Why is this happening to me?” You’re not the one suffering. Take the ego out of it. The key to life is not what happens but how you respond to it.”
Rose was started on home C-PAP on 12 July. Andrew was there to learn how to do it.
In other news: John Smythe (Neonatologist) has organised a meeting to discuss best plan for Rose with Us, ENT, Speech Pathology, General Surgeons, Sleep Team… think that’s it tho I may ask if he can throw in Endocrine for good measure. Meeting should happen on Tuesday. Would you believe one of the main points up for discussion is Fundoplication?!?!