Today’s activity focused on three areas: (1) newborn fashion, (2) GI/feeds, and (3) cardiology.

(1) Mom doesn’t like headbands, but our nurse found this handmade piece (courtesy of the volunteer “Cuddlers”) in Olivia’s drawer and thought it matched her blanket so nicely that she’d give it a go. Mom still doesn’t like headbands, but thinks Olivia looks too cute to take it off. For now at least.

(2) The team removed Olivia’s NG tube today, as she hasn’t been tolerating feeds very well. It was replaced with an ND tube, which bypasses her stomach and delivers the feeds directly to the first part of the small intestine. She’ll continue receiving the drip of breastmilk through this tube, and we’ll see if it helps get her gut moving. The indicators as to whether or not this method is “working” better than the NG tube include: seeing more regular (and unassisted) stools, and avoiding both distention and spit up.

If the ND tube does work, the team would look to slowly increase feeds via this method, and begin to decrease her TPN. Eventually they would then try to transition more feeds through an NG tube (to reengage her stomach) and ween down the ND tube.

If the ND tube does not work (as indicated by distention, or spit up), the GI team has a number of subsequent tests to introduce that could better help us better understand if her GI track is built as expected, and where any malfunction may be occurring.

(3) We learned during this morning’s rounds that the nurses and doctors recently discovered a heart murmur. The murmur is inconsistent, but has been noticed on multiple occasions by different providers. An echocardiograph was ordered and performed this afternoon. We did have a fetal echo done around 22 weeks during pregnancy, and it looked normal, but we were reminded that it’s not always easy to see everything during fetal exams.

Other medical details (for those of you taking notes): daily Dornase has been discontinued, ventilator remains at  a rate of 35, 19 over 6 ,with a pressure support of 10, and labs will be drawn tomorrow as part of her new Tuesday, Thursday, Saturday schedule, at which point we’ll get an updated blood gas, Phenobarbitol level, and bilirubin level.

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.