The day started out just like the last few. Came in early from the hotel. Talked to the nurse to see if there were any changes/events over night. Everything was good. They continued to wean her slowly, and she was tolerating it well. She still hasn’t pooped (sure I could say bowel movement but why get technical?) since July 12th, which is important believe it or not, and is something we ask about frequently. Going to the bathroom helps with her bilirubin numbers. Dad has been giving her pep talks to see if that helps her. So far, no luck.
During morning rounds, the docs continue to express how happy they are with her continued progress. She will continue to stay on the same amount of feedings (breast milk) today, and they may consider increasing the amount tomorrow. Again, they need to take it slow to prevent any possible complications. Based on the last lab, her bilirubin has started to creep up again (from 4.5 to 7.6). The doctors expressed that this is not a big concern, as they expect her numbers to fluctuate. So you know what this means…back to sunbathing! Oh well…it was fun while it lasted. The brain ultrasound completed yesterday was not yet interpreted by the Neurologist. Finally, the doctors feel that if Riley keeps doing as well as she is on the ventilator and they’re able to wean her a little further, they may be able to extubate her tomorrow and put her back on CPAP, which is the level of respiratory support she was on during her first 24 hours of life when she was doing so well. I know Ian and I should be excited about this, and we are….kind of. We’re also scared shitless. This is a huge step…and how the heck did she get back here so fast when she was in such a critical state less than one week ago? It’s almost too good to be true.
It’s also sort of ironic that today is her one week birthday, and she almost seems to be in the same condition as she was one week ago. Almost off the ventilator, slowly being fed, and requiring a small amount of phototherapy. Happy one week birthday Riley. How bout we pretend that first week of your life never happened?
So knowing that Riley was going back under the lights, I spent a lot of time this am just watching her through her incubator, staring at her face, trying to take a mental photograph to hold onto. Of course I also took many pictures with my iPhone, just in case the memory of those mental photographs faded:)
Later got a visit from Riley’s doctor who just wanted to check in on her (and us). She informed us that the preliminary results (her interpretation) of the brain ultrasound look good, as it does not appear there have been any changes or evolving bleeds. She continues to look like she has a Grade 1, possible Grade 2 bleed. Once she talks with the Neurologist and confirms the results, she will let us know. Some sense of relief.
The day was filled with occasional distractions with visitations from primarily family members, and an occasional friend or two. Ian and I are talking about moving out of our comfort zone (hotel)and heading home tomorrow, but we aren’t ready to commit to that decision. Not yet. Let’s see how tomorrow goes.
However, after a visit from a nice gentleman this afternoon I feel even a little more comfortable going home. He was from some technological service and informed me about the “NICUview,” which is a video camera that he installed and is positioned right above Riley’s incubator, so we can see and watch her when we’re at home. How great is that?? As Ian says, “What are they going to come up with next?” 🙂
The remainder of the day – uneventful. Ian and I were able to get out again for dinner. We try to talk about other things besides the obvious, again, in an attempt to be as “normal” as possible, but Riley is constantly on our minds. She’s everything to us right now. I know when we’re both sitting there in silence we’re thinking about her…and our future with her.
It’s amazing how much love you can feel for such a tiny being…a tiny being who we’ve had such limited interactions with. And its even more amazing how much that love grows every minute, of every hour…every day.
"One Day Stronger" 