Change is good?

I went to visit Emma this afternoon and was pleased to see her sleeping when I arrived! (Poor Scott has the same bug I've been fighting so he stayed home to rest.)

We tried to hook up the webcam so Emma could see my sister and brother-in-law, and my adorable niece! However I couldn't connect to the internet for the first time in the hospital! I was bummed, but I moved on and chilled with Emma for a while!

Emma's NP stopped by to update me on her progress. Last night she had more episodes so they increased the air flow to 3 liters this morning. The increased humidity has made the secretions thinner.

It seems the problem is really that she just isn't swallowing like she should, so she gets choked up. That is likely a Moebius feature! They will take a closer look at her swallowing, but if she can't handle it, she made need a tracheotomy, which would allow air a constant flow into her lungs, subsidised by any breaths she takes. She will need regular suctioning of the oral secretions either way.

It seems pretty likely she will be getting a g-tube, based on the above. Both being temporary until she is able to breathe and feed orally - temporary still being more than a year! She is certainly going to be a high-maintenance infant!

So, as we wait for Emma to gain weight and take her feeds NG she doesn't really need intensive care, but needs to stay in hospital. Therefore they will likely move us to the intermediate care service before the end of the month. This is actually pretty tough to take! I've spent the past two months in the NICU, getting to know the nurses, knowing how things work, getting in to a groove. I'm not looking forward to the move, but I know it's better than staying put and then going home, suddenly alone.

In the meantime we will continue to take each day as a gift from God.