21 Days Old: Morning Update

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.

Continue Reading

20 Days Old: Field Trip Time


This morning I was able to tag along when Olivia went on a little field trip to the ground floor. My first chaperone experience! This was for the 2nd part of her HIDA scan. The transport required 4 staff, new pieces of mobile equipment, and a whole lot of preparation and caution. I now understand why they prefer to hold off on any tests requiring transport until babies are relatively stable.

Olivia spent about 20 minutes total under the camera. She was swaddled in blankets to keep her warm, and wore a hat for the first time. We now await results.

Continue Reading

20 Days Old: Morning Rounds


Rise and shine, from wide eyed Olivia.

This morning Luke arrived early at the hospital, to find a wide awake little girl. Mary Ellen (our nurse) had just given Olivia her first bed bath! The little one was pretty sweaty and stinky from 3 weeks of life, and her hair was greasier than grease due to all the baby oil we’ve slathered over her in attempts to get rid of glue and residue from equipment. Following the bed bath, Luke was able to hold her briefly while Mary Ellen changed her sheets: check out the gray elephants!

From rounds:

  • She continued to have residuals (5MLs, 8MLs, 2MLs, 5MLs) overnight and this morning, but feeding will continue. Today we’ll increase to 2MLs an hour today.
  • She’ll travel downstairs for part 2 of the HIDA this morning, and we hope to get initial results today. We’ll likely discontinue Phenobarbitol after the scan is complete.
  • Her respiratory rate is staying at 40, but we dropped her volume to 19. So she is now 19 over 6 with pressure support of 10.
Continue Reading

19 Days Old: Evening Update

Busy day in room 15.

After morning rounds, Olivia had a visit from mom’s girlfriend Heather. She brought along some special treats, include a snazzy pair of sandals for Olivia to wear one day. Heather helped Olivia gaze at a new book, and kept her engaged in some overdue girl talk.



Around 1:30PM our nurse packed up Olivia’s things and took her downstairs for the HIDA scan. She did great during transport, had no respiratory issues, and came back to her room a couple of hours later. She’ll need to go back downstairs for part 2 of this test tomorrow, and then results will be at least a few days out.

While Olivia was downstairs, the palliative care team stopped by to talk to mom. This team (consisting of an MD and NP) will be a part of Olivia’s primary team moving forward, and this was just an introductory talk.

After the HIDA scan, we had the long awaited visit from Dr. C who recently returned from a trip to China. The assessment was thorough. Olivia cooperated and woke up for the latter part of the assessment, so Dr. C and her team were able to see Olivia awake and alert. Dr. C recommended a genetics test as the next step, which we think may be ordered fairly quickly (in the next day or two). Unfortunately, this is another test that takes a few weeks to run and analyze, so we are not expecting quick results.


Respiratory wise Olivia did great all day on the same settings described this morning. Her feeds continued after the HIDA scan at 1 ML per hour. And we had a poop at noon (with a little help from a suppository).

Continue Reading

19 Days Old: Morning Rounds


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.
Continue Reading

18 Days Old: Evening Update

Olivia had a very quiet day. We had a new nurse during the day who was wonderfully attentive and affectionate with our little girl. She even suggested a couple of new toys to keep Olivia entertained during her awake times. The “fish tank” plays a random assortment of songs, and kept Olivia absolutely fascinated for over 30 minutes.

A child life specialist stopped by as well this afternoon, and left behind a few more toys that we’ll introduce another day. Her goal is to ensure we’re keeping some semblance of “normalcy” around Olivia amidst all of the medicine. Her toys include a mirror to position above Olivia so she can check herself out, a tactile learning tool (a blanket made of different textures to put in Olivia’s hands), and some jingly toys (but not a full mobile) to put overhead.

On the medicinal front: respiratory rate went back up to 45, no changes to feeds or medicines. We did not see Dr. C as we had hoped, so we’ll wait and see if she visits tomorrow.

Continue Reading

17 Days Old: Evening Rounds

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.

Continue Reading

17 Days Old: Morning Rounds

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…


Continue Reading

7 Days Old: Daily Updates


Good morning! Olivia slept well overnight and they moved her back into a flat position. They started phototherapy at 8 AM to treat her jaundice. Her bilirubin is at 18 and her light level is 17. This morning we await updates on her right lung (following an x-ray), the status of her UA line (max they can keep it in is tomorrow), and the start of feeding (projected for the today and may help bring down the bilirubin level).


Update from rounds.

  • First series of genetics test came back all normal. This rules out Turner’s Syndrome and a number of other major genetic disorders. We await the micro-array results, which will reveal more acute syndromes. That may take a few weeks.
  • The UA is slated to come out today. After it comes out, Mom will be able to hold her for the first time. Feeding starts today as well.
  • Test results show that her direct bilirubin is very high now as opposed to her indirect bilirubin. This indicates that it there could be an issue with her liver, which is more common in babies with possible birth disorders. They will do an ultrasound to assess the structure of her liver. They were examined at birth and deemed “normal” but we’ll revisit it now given the high levels. Phototherapy may stop today, since it’s used to treat rises in indirect bilirubin (not direct).
  • Her right lung continues to be problematic. Morning X-rays showed improvements, however light pressure on that side caused stress for her this morning.


Pictures coming soon but mom got to hold her for an hour today skin to skin! It took her a minute to get settled but she did great. Dad fed her some of mom’s milk (via a tube) during the process. They both took a little snooze. Olivia was comfortable and peaceful throughout the process. It was awesome.


Update from the day. The highlight was about an hour of skin-to-skin time with mom. Mom and baby had a blast. She was fed 6 MLs of breastmilk but was only able to digest 3. They attempted another 6, but it was unsuccessful. They removed 9 MLs from her stomach and will try feeding again at 9:30 PM. If that doesn’t go well they will continue to decrease the amount given. Her UA is out, so one less line. Ultrasound on her liver happened around 4 PM, we await results.

Continue Reading