25 Days Old: Daily Update

25daysold-ndtube02

Olivia had a good night and morning.

The team reduced her breathing support overnight by dropping the rate to 25/bpm. They felt comfortable with this change because she had a positive blood gas result. We suspect Dr. P, a long-time and frequent advocate of Olivia’s positive progression, was behind this decision.

Overnight Olivia’s feeds progressed to 4/MLs hour.  They increased again to 5 MLs at noon, and will increase to 6 MLs tonight, barring any issues.

Today is our first “family meeting” where we’ll meet with Olivia’s primary team, social work (Carla) and palliative care. Agenda-wise, we’re told not to expect much in the way of news, given the amount of questions we ask on a regular basis. This meeting is a common step for NICU families and provides an opportunity for us to discuss Olivia’s status and longer-term options away from the bedside. We’ll meet formally in a conference room, and Mom and Dad are bringing cookies from downstairs.

Side hospital note: they upgraded her continuous feeds equipment last night to the ABC Syringe Infusion Pump Model 4100. Apparently, the NICU is replacing her older model, the Baxter AS50, across the board. This one has a touch more prominence (annoyance?) in the room as it hangs on an IV pole which blocks a side of her bed. No medical/care significance here. Dad’s just interested.

Two minor updates I didn’t cover yesterday:

  1. First, we informed nursing leadership that it is ‘OK’ to have orientees assigned to Olivia again. Two weeks back, after a tough week, we made the request for only experienced nurses.  U of R is a teaching hospital, so it is common to get someone in training, but always along with someone experienced. It can be perceived as a benefit, as we get two people caring for her, instead of one. Mom and I enjoy the openness of a teaching environment, asking every question that crosses our minds. And, every morning in rounds we hear updates from residents and fellows, all of whom are Doctors, formally, but still in training. In rounds, it is not uncommon for us to hear them corrected by their superiors.  However, in those first fragile weeks, we couldn’t tolerate that from nursing. They provide some much direct care to Olivia that we found ourselves biting our nails every time we had a trainee or a young nurse in the room. Olivia and her parents are in a much better state now. We feel a lot more comfortable communicating our care goals to nursing, and we feel they are listening and achieving them.
  2. Second, she is now in what’s called an “open crib”. No, nothing changed in her bed. They just turned off her automatic heater. A “closed crib” (Dad made that term up) refers to a system where a wired thermometer under her armpit controls a heater that keeps her body at a constant temperature. Now, they are letting her body regulate that. #onelesswire.

Finally, we’re moving medical-related updates to once a day. On big days, we’ll do more. Don’t be shy about using the comments area to ask questions.  You’ll likely see more editorial content from us (yes, I know, Stories from Mom are better).  Dad might make a few functional improvements to make it easier to see updates and questions.

8 Comments

  1. We love your updates just as much, Lukey, and if anyone can make this site even more spiffy than it already is its the two of you ☺️

    Awesome to hear about the feeds! And you two are absolutely, positively amazing ❤️

  2. I can’t get enough pictures. You two are amazing with your well thought out updates, so well written. I love you three so much 👨‍👩‍👧

  3. My little Olivia every day you just keep on going forward!!
    Your will and strength are unmatchable!!!
    Love you little sweet Olivia

  4. Loving these beautiful pictures with each update! 💞 You’re both wonderful writers and amazing, loving parents. Sending hugs and prayers each day to you all 🤗

  5. Our thoughts & prayers are with all of you. Thank you for sharing these updates. It sounds like Olivia has a great team of doctors. ❤️

Leave a Reply

Your email address will not be published. Required fields are marked *