It’s hard to believe it’s already been six weeks. Emmett has really grown a lot since then. He was up another 16 grams tonight, bringing him to 3 lbs 10 oz. They bumped his feeds up one more ML, so he’s now on 31 ML feeds. Until we know more about how the CLD is affecting him, growth is still our biggest priority.
We had a pretty good day today, with much fewer events than the last week. I didn’t think the prednisolone was supposed to start working for a couple more days – but whether it’s the medication or just him having a good day, I’ll take it.
Not a lot else to report today, which is good. Boring days are always good days. Tomorrow I head back to work, which is surreal. Really hoping this provides a welcome distraction and makes the time go by faster until we can bring Emmett home. Feeling excited, scared, nervous and a whole bunch of other emotions.
Tomorrow Emmett is six weeks old. And on Thursday I return to work after taking my six weeks of short-term disability. The decision to return now was difficult, but I wanted to save the rest of my leave for when E comes home and I can have a somewhat normal maternity leave. I have mixed feelings about going back. On the one hand, it will be nice to feel like I’m using my brain for something other than medical terminology. On the other hand, it will be surreal to go back, knowing E is still in the hospital. Thankfully my employer has been very accommodating of our situation and is allowing me to work remotely from the hospital part of the time. Even if I can’t do anything for Emmett here, just being here makes me feel better, and studies have shown that NICU babies thrive more simply by having their parents present. D’s work has been very flexible as well, so on the days I go into the office, he will work from the hospital.
Today was a relatively uneventful day. E is still having a fair number of episodes, but fewer than he was just a few days ago. It will take a few more days for the prednisolone to have any effect on his lungs, if it will help at all. I’m still processing the CLD diagnosis. This could be something he overcomes with little to no lingering issues (children’s lungs can actually regenerate themselves), or this may cause him issues for the rest of his life. We just don’t know, and we won’t know for quite some time. For a planner like me, the unknown is one of the hardest parts about this whole situation.
Our little troublemaker is still pulling out his feeding tube every opportunity he gets. The nurses keep taping it down in different ways, hoping to secure it from his grabby fingers, but their efforts have been largely unsuccessful and have mostly just resulted in layers upon layers of tape on his face. His nurse this afternoon decided to take all the tape off and start over. So far so good, and bonus – I got a chance to snap a photo of his face without his cannula or feeding tube and only a little bit of tape. I so rarely get to see his naked face! He’s got his big brother’s “stink eye” look down pat. And our little chunk even has a double chin now. He’s up to 3 lbs 9 oz.