For some time, it had been my secret wish that Norah would be discharged to home by her second birthday. It doesn't look like that is going to happen. Try as we might to not get our hopes up, it's nearly impossible not to. There was a light at the end of the tunnel, but we were only seeing a lamp, not the exit.
Norah is a slow grower. We know that she grows at about half the rate of other kids her age. She is doing amazingly well on the home vent (now on it 16 hours per day), but we are still waiting for her to get big enough to meet the FDA minimum weight to take her home. However, we have a medical equipment company likely willing to let her go home when she's at the flexible end of that weight goal. So we may be able to take her home at 8kg (17.6lbs) instead of 10kg (22lbs). This is a huge deal. It means that while we won't be home by her second birthday, we will likely be home sometime this year. It's the homestretch. There is that light at the end of the tunnel.
I don't want to get my hopes up, but it is unavoidable. I don't like telling people this because things tend to not go as planned. I'm only blogging about it because I'm so often asked about a potential discharge date, and I have a hard time not being honest. So for now, we will continue on our path. We will continue to play and laugh together while at the hospital. We'll continue to long for her when we are an incomplete family at home. We will continue to make the best of things, and continue to hope... Because I suppose that getting our hopes up is all part of the roller coaster that we're on.
Norah is a slow grower. We know that she grows at about half the rate of other kids her age. She is doing amazingly well on the home vent (now on it 16 hours per day), but we are still waiting for her to get big enough to meet the FDA minimum weight to take her home. However, we have a medical equipment company likely willing to let her go home when she's at the flexible end of that weight goal. So we may be able to take her home at 8kg (17.6lbs) instead of 10kg (22lbs). This is a huge deal. It means that while we won't be home by her second birthday, we will likely be home sometime this year. It's the homestretch. There is that light at the end of the tunnel.
I don't want to get my hopes up, but it is unavoidable. I don't like telling people this because things tend to not go as planned. I'm only blogging about it because I'm so often asked about a potential discharge date, and I have a hard time not being honest. So for now, we will continue on our path. We will continue to play and laugh together while at the hospital. We'll continue to long for her when we are an incomplete family at home. We will continue to make the best of things, and continue to hope... Because I suppose that getting our hopes up is all part of the roller coaster that we're on.
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