Olivia had a great night and morning. Dad came in early this morning to find her awake. With the help of nursing, we coordinated an “in Dad’s arms” study session during which we reviewed and discussed the literary elements of Dr. Seuss. Olivia giggled as Dad battled through tongue twisters. After boring of Dad’s struggles, Olivia slept soundly until Mom arrived to relieve her. Play time!

Rounds reported positive news from overnight. Today, Olivia will:

• Go down on pressure support, after dealing well with the continuous drops in breathing support. She continues to show great respiratory progress (unless we move her around; she doesn’t like that too much).
• Go up on feeding. They are bumping up her increases to +1 ML every 8 hours (Q8), from her prior 12-hour regiment. This is great news. She’s looking better with all of Momma’s milk. At noon, she’ll be at 9 MLs/hr.

She is excited to see Grandpa and Nana today. We haven’t yet told Olivia that her Aunt Abbey is coming too! The clan is expected to arrive from Maine around 3 PM.

In other news, Hotel Olivia construction was delayed after nursing expressed concerns about her temperature control. Mom and Dad are pushing them back to the table for negotiations, as they along with OT, suspect her temperature drops are related to her environment. In a proactive move, Mom’s put these cute little mitts on Olivia and wrapped her up snuggly. Lawyers from both sides are expected to meet later today to discuss. Neither side expressed concerns with the delay, as spokesmen from both camps cited they “want what’s in Olivia’s best interest”.

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.

Skin to skin time is great for parents and babies, but Luke and I have a new found appreciation for holding Olivia swaddled. We actually get to see her face. And look at her. And we can move!

Good morning and happy three weeks, Olivia!

She had a quiet night in the care of one her loving night nurses. No major updates to her plan today.

Ms. Olivia remains on her 2 ML/hr regiment for feeds. She had ongoing and variable sized residuals last night. The core team is sticking to yesterday‘s recommendation: observe any effects of Reglan until Tuesday and then consider alternatives.  She did stool on her own (sort of) last night, something Mom is excited about.

No changes to respiratory and other systems today.

Mom and Dad plan to hold this afternoon. Aunt Lauren and Uncle Chris will stop by today before heading back home.

Olivia had a great Saturday.

She had visits from her Guerrero grandparents, Aunt Lauren and Uncle Chris. She did wonderfully after adjusting to her lower ventilator settings. And the highlight of the day came in the afternoon when she spent a couple of hours in the arms of mom and dad. Today we held her bundled up instead of skin to skin, which let us get much more face time!

Feeds continued at 2MLs an hour (despite ongoing residuals), we had one stool (with the help of a suppository), and today was the first day of receiving only one dose of Dornase.