Thoughts - October 3rd

For me personally, today was a rough day. The last 4 days have been pretty good and stable, and this morning we walk in with news that wasn’t trending that way. It was her first really bad night. Emerson threw up a couple of times in the early morning, and then a couple of times when we were around in the morning. This was concerning. During the night, they kept bumping up Emerson’s feed for breast milk. The doctor wanted to push her. Apparently her heart couldn’t handle the extra stress with the work of the stomach, and her body just wasn’t having it. They stopped feeds during the night. Also, her x-ray from the morning came back with some fluid on the lungs. So, the doctor upped her vent settings a bit, and re-started the feeds, but at a much lower rate again (10 mL an hour...they were up to 35 mL an hour during the night). And there was no way that she could get the tube out. It just seemed like a real step back for us as parents. It was a real bummer.

On top of that, her heart rate was pretty elevated the entire day. She just wouldn’t settle down and take a good nap. They would even give her a little extra “something” and she still wanted to party party. For her dad, it made him nervous the entire day.

On a happy note, we did get some real Emerson smiles, or as best as she could with the breathing tube. She even gave some to one of our nurses as well. It just melts your heart. You see your daughter smile at you like “Hey Dad!” And you just want to hold her and snuggle her and take her back home and go back to how things are. It brings joy to my heart seeing her smiles, but also tears to my eyes that we are in this setting.

But that is not real life anymore. Real life is our current situation that we are in. And it will never be nothing but suckiness. Every day I wake up not in my own bed in my own house with a Rocky cat by my head, is a sad day.

But we fight for E. We know E needs us. We know E needs our prayers. We love E with all of our hearts, and we will do whatever we need to do to be with her.