Well, I’m sitting here in the parent’s retreat at the RCH, with my trusty Virgin 3G modem, doing a bit of work while I wait for Donna to finish expressing and for the boys and my folks to arrive. Their flight is due to land here at Melbourne in the next 5 minutes or so, but the flight tracker isn’t yet showing that it’s left Launceston, so I’m not sure if they’re going to be on time or not.
Alyssa seems to be doing well again today. She tried to have a little feed this morning, but they are transitioning her off the hourly feeds so she is not really very hungry right now. We hope by mid afternoon that she will be onto 3-hourly feeds, so will be hungry enough to try a feed before she has 60mls pushed down the nasogastric tube.
We spoke to Maureen, the dietitian, and she has arranged the continuous feed pump for us to take home, so we will learn how to use that in the next few days so we can feed her overnight. At this stage, it’s sounding like we will get to go home by the end of the week, which we are terrified about, yet at the same time keen to do.
We need to learn to cope with this as soon as we can outside of the safety of the hospital. The sooner we get home, the sooner we will be able to find our new “normal” – it’s not going to seem normal to many of our friends who have children, and we don’t expect that they will all necessarily understand what we are about to go through for the next 15 years of our lives, but it’s what we have to do to keep our little girl with us.