Good morning and happy Saturday!

Olivia had a comfortable, if not blithe, Friday night. The Guerrero grandparents arrived from Hopewell to find her awake. They entertained her restlessness with stories and toys before she finally fell asleep. We’ve found Olivia progressively more alert and awake since the decision to cut her Phenobarbital level.

Speaking of Phenobarbital, her morning labs indicated a drop in direct bilirubin to 11.5. Her last reading of 12.0 was on Thursday. The decrease is considered progress. They measure her direct bilirubin levels every Tuesday, Thursday, and Saturday; so hang tight for the next update. Today they will stop Phenobarbital. The drug has a long half-life – 53 to 118 hours (mean: 79 hours) – so it will take a few days to come out of her system. On Tuesday, they will check her levels and compare it with direct bilirubin rates. In addition to determining the impact of Phenobarbital on her direct bilirubin, this stoppage should help any neuromuscular assessments from Dr. C & team next week (by reducing sedation).

Ms. Olivia gave back 10 MLs of feeds this morning. Our nurse relayed similar feeding patterns from the overnight team. We have yet to see the effect of Reglan on her motility. They will continue to administer the drug and reassess Tuesday if no is progress made.

Yesterday evening the pulmonary team stopped by and recommended a goal of ultimately stopping Dornase (started day-8). Overnight, they reduced her rate to once a day. No changes to Albuterol and her saline nebulizer. They are dropping her respiratory rate to 35 today, as they continue to wean vent settings.

Today, Mom and Dad are hoping to hold Olivia, swaddle-style. Her respiratory conditions have been improving and moving her isn’t causing the desat events we saw on days 14, 16, & 17. Aunt Lauren and Uncle Chis are here to see her today. They will stay for the evening while her Grandparents head back home.

Updates from overnight and this morning’s rounds:

• A good chest x-ray resulted in decreasing her respiratory rate to 40 (from 45), and since she’s had a couple of good days in a row they decreased one of her pressures 1. She is now at 20 over 6.
• She continued to give back mixed residuals of some milk and some mucus. If the residuals are mostly mucus the team discards them, if its mostly milk, they’ll re-feed it to her. They are keeping total volume to 1ML per hour for now, but we will start Reglan today (a medicine to help increase motility).
• Direct bilirubin came down just a tad overnight. It’s now at 12.2 from 12.8 yesterday. The team has recommended that we consider stopping Phenobarbitol completely. This is a decision they are currently leaving up to Luke and me as parents. The reason we would stop the medicine entirely is twofold:
  • (1) It would allow us to see if her direct bilirubin continues to decrease over time, even without the medicine. If this were the case, it would point more towards Olivia’s liver suffering from the initial insult at birth, rather than an inherent inability to function as desired.
  • (2) It may help us better understand Olivia’s “baseline” for alertness and activity. This is working under the assumption that the Phenobarbitol has had a sedative affect on her over the past week or so. The doctors are convinced this is the case given her low dosage, but it’s certainly a possibility and has been the observation of a number of nurses, OT, and us as parents.

Updates from the evening. And, yes, you’re back to your original recorder. Mom’s doing such a fantastic job that her fingers needed the night off. Overall, Olivia had a peaceful day.

Respiratory wise, she had a handful of minor “desat” events. Fortunately, none were as severe as prior incidents. Her ventilator settings stayed the same today, varying only O2 levels corresponding to the events.

Her feeds stayed on 2 MLs per hour, after giving back 8 MLs at noon and 10 MLs at 4 PM.  We can’t seem to get over that hump. Tomorrow will likely include an order for medications to improve “motility” (her digestive system working), since she hasn’t made progress in this area.  Today, when discussing the possible action of medication, they suggested that she may just need something to help jumpstart her digestive track.

A midday team meeting yielded a decision to cut her phenobarbital intake in half.  This was based off continued progress in the war on bilirubin and input from OT (Meg) that Olivia isn’t as alert as she was prior to starting medication. (Phenobarbital has sedative properties.) This is good news.

Otherwise, Olivia had a visit from Mike Garsin this evening. She opened her eyes for a few seconds to say a brief hello. While Mike visited Mom spent some time trying to groom Olivia’s mane, but finally succumbed to the fact that our girl has a mean mullet.

Our “meal train” tonight included a hearty lentil soup, courtesy of the Eagle family.

Updates on Olivia:

Luke and I stayed at the hospital pretty late last night, as Olivia continued to have desat events that worried us.

During a more severe event, the nurse and a respiratory tech thought it sounded like both of her lungs were “very tight” (collapsing), so they called in Dr. P who is now doing night shifts. She spent some time with Olivia, and found a new position that didn’t “cut off her trach” as much. In addition to a new position, they increased her pressure support to 7. Since the pressure support change last night, Olivia’s been doing well. Nervous mom gave the NICU a late night call to check in and was relieved to hear she had been doing well since we left, “sat-ing” near 100% and sleeping.

In this morning’s rounds an xray from 4AM showed that Olivia likes this new pressure. Both of her lungs looked open, one slightly less than the other, but still a great picture to see. Because she’s responding well to the new setting, the respiratory plan for today is to keep things where they are and give her some time.

Direct bilirubin is down to 11 from 14 yesterday. The continued decrease is good news, but we still have quite a ways to get down to the goal of 2. Despite the steady decrease, the GI team would still like to move forward with the HIDA scan, however Olivia’s primary team is not ordering it just yet. The scan requires that she be transported multiple times in a single day, and given her fragile respiratory state the team does not want to risk having any events during transport.

Feedings will continue throughout the day. If she has less and less residuals at each change today, they will increase to 3MLs an hour. If she shows high residuals, they will consider a motility medicine. Still no stool, so she’ll be getting a suppository at the 24 hour mark since her last one.

In other news:

The meal train delivery last night was amazing. Delicious pasta dinner with a spicy bolognese sauce, cheese, and a loaf of bread. Plus loads of goodies. More coffee, creamer, fruit, breakfast drinks, muffins, candy, wine… and more. Thank you to the Fox ladies!

I was extra tired this morning so I slept in a bit and Luke headed into the hospital solo at our normal hour. Olivia was wide awake and waiting! Despite my best efforts to wash and comb her hair yesterday afternoon, it looks like she’s got quite a case of bedhead today…