46 Days Old: Daily Update

Good morning. Olivia made is through the night on CPAP. She had a few touchy moments but they cleared up and she slept relatively well for most of the night.

This morning she is doing OK. Getting her comfortable is the hardest part. She agitates quickly and recovers slowly. She’s been on higher O2 (40-50%) today, as we try to find positions to settle her out. She’s still on high rate and pressure support (remember, she is on the ventilator, it’s just blowing into her nose vs directly into her lungs). We suspect her lungs aren’t fully expanded (recruited). Fixing that is going to take some time and strength.

She is managing her secretions well and appears to be swallowing. This is an area we thought she wouldn’t do well in.

The plan for today is to continue to support her by any means necessary. Her current struggles are not enough to intubate again. The next couple of days could look a lot like today – where she slowly recovers, but with a lot of support. They’ll intermittently take blood gases to test her CO2 and x-rays to assess her lung recruitment.

Her feeds returned to the pre-extubation rate of 20 MLs/hr. She was doing well with them overnight, but she had some larger residuals this AM (46 MLs).

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45 Days Old: Extubation Trial #2

This morning, the team removed Olivia’s ET tube, a process referred to as extubation.

The last time extubation was trialled, Olivia was only 5 days old and we knew so much less about her capabilities and challenges. This time, we are far more hopeful that she’ll have the strength and endurance necessary to remain unintubated, although only time will tell.

This morning’s procedure was fairly simple and only took a few minutes. Her tube was replaced with a RAM Cannula, which provides her both pressure support and rate via her nose. Since this goes into her nostrils (vs. directly into her trachea or lungs), the support is not as direct as she’s used to. Instead of all going into her lungs, now some escapes through her mouth, and some also makes its way into her stomach. She’s likely to be on higher O2 settings (30-40%) for awhile, as she gets used to this whole life without a tube thing, and her team may continue to play with her settings for pressure support. Ultimately, we’d hope to remove the RAM, however, for a few days we’re giving her all the support she needs. Dr. M has ordered that only he (or the night attending, Dr. R) can give the authority to re-intubate her. He wants to try everything possible to give her a shot at success.


  • 7:00 AM – Our nurse, arrives and turns off her feeds.
  • 8:00 AM – Mom and Dad arrive. Olivia is awake. Mom combs her hair.
  • 8:30 AM – Respiratory team & the docs begin preparations.
  • 8:35 AM – The tube is out! We can hear her trying to cry.
  • 8:38 AM – Dr. M gives the OK, the procedure is over.
  • 11:05 AM – NG tube back in.
  • 12:00 PM – Blood gas drawn
  • 12:10 PM – Support increase (rate and pressure).
  • 12:15 PM – x-ray reveals collapsed right lung.
  • 12:50 PM – Restarted feeds
  • 2:15 PM – Blood gas drawn


The pictures above are from immediately after the tube was removed. She became quite agitated and struggled for 3+ hours after extubation, but we were told this is somewhat expected, and that we should be prepared to see that type of response for a few days – she’s had the tube in for 45 days, after all.

A blood gas was drawn at 12pm (3 hours after extubation), and unfortunately it was very high (82). The team was concerned about her lungs, and an x-ray revealed a partial collapse of her right lung. Pressure support and rate were both increased significantly to help her re-recruit that lung.

Following the setting adjustments and some repositioning, Olivia settled down and slept much more comfortably for the afternoon. While we haven’t seen a follow up x-ray, a second blood gas at 2:15 pm was much better (64) and just at the upper bound of her normal range.



From here on out, we wait and see. Mom and Dad are excited but nervous. The day was rather stressful (much moreso than anticipated) and it’s likely to stay that way for awhile as we see how she responds to this major transition.

In the meantime, we look forward to when she’s awake and mad, as we can hear the faintest hints of her crying, which, for now, we love.

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44 Days Old: Daily Update

Good morning. Olivia had a peaceful night. She completed a 3.5-hour sprint this morning.

Today, the pulmonary specialist team will [re]consult on Olivia’s case for ventilation extubation. We have a full week of positive sprinting data for them to consider, so Mom and Dad are optimistic. She has a known hurdle with her capabilities to manage secretions and protect her airway. Doing these tasks requires swallowing, coughing, and using muscle groups we can’t readily assess (due to ventilation). Given her overall muscular picture, these areas are likely weakened. We’ve observed some affirmative signs strength in OT. We don’t expect a decision from Pulmonary today – but would be delighted with one. They’ll stop by today around 3:30 PM.

Medical updates:

  • Feeds. Her volume (20 MLs/HR) remains the same. She’s increasing to 2 teaspoons of pregestimil (from 1.5).
  • Respiratory. She’s going up to 4 hours today. This may change based on her pulmonary consult.
  • Labs. Results came in early, as they combined the blood draw slated for tomorrow. Direct bilirubin is down to 3.9. Other results were normal, including her blood gas.


Post-Yogging Snooze

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43 Days Old: Daily Update

Good morning and happy Sunday!

Olivia did great last night with a new nurse, Meghan. She did a 3-hour sprint starting at 6 AM. She’s due for her next at noon.

No major medical updates or labs today. Feeds are increasing to 20 MLs/hr. Her sprinting schedule remains the same – 3x/day for 3 hours each.

Charise and Maccie will stop by today to say goodbye before hitting the road. Olivia and Meghan chose flamingos for the occasion.


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42 Days Old: Daily Update

Good morning. Olivia had a great night with one of her favorite nurses. She awoke early for a jog from 5:30 to 7:30 AM.

Medical updates:

  • Bilirubin is down to 5.1. We’re loving the continuous slide here with 6.1 & 7.0 in the prior two readings. Her goal is sub-2.0. Based on Dad’s very fancy (10th grade) math skills, he’s projecting she’ll get there by June 16th.
Direct Bili Guess
Dad’s Guess
  • The team continues to push her on respiratory. Her sprints are ordered to increase to 3 hours, 3x/day. She’ll start that this morning.
  • Feeds remain constant. Her weight is up another 50 grams.

Ms. Olivia will be entertaining guests today and asked to be dressed for the occasion. Mom helped her out with the selection. Charise and Lindsay (Maccie) arrive from Connecticut and Massachusetts, respectively, this morning. Olivia (and Mom) are very excited.

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41 Days Old: Daily Update

Good morning! Olivia slept soundly last night. She was exhausted from a multiple hour play session with Mom yesterday.

No lab updates for today. Sprinting continues on the respiratory front. We ran for 2 hours to start the day. Feeding remains the same. We’re not starting bolus-style feeding, as mentioned yesterday, instead focusing breathing and OT progress.

Dad went with the blue whales today.

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40 Days Old: Daily Update

Olivia had a great night and a fun morning with Dad. While sprinting we jammed out to Yanni, then wrapped up with Rumpelstiltskin and The Little Engine That Could. I put her in pink flamingos for the festivities, check ’em out below.

Medical updates:

  • Respiratory. Sprinting sessions are ordered to increase to 2 hours, based on stellar performance thus far. We hope to make some assessments on the ventilator next week.
  • Feeds. Holding steady here – 19 MLs/hr, +1.5 teaspoons of pregestimil, +6 MLs of liquid protein. Tomorrow we may trial bolus-style feeding. Right now she’s on a continuous feed where milk drips into her stomach at 19 MLs/hr. Bolus-style feeding simulates her feeding naturally, giving her 76 MLs (4-hours worth) all at once.
  • Billy. Direct Bilirubin continues its slide down to 6.1 from yesterday’s 7.0. This is fantabulous. Sub-2 is the goal.



Note, the hose is pulling on her face in this photo. That’s why her right eye looks a little funky.

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39 Days Old: Daily Update

Good morning. Olivia had a quiet night and morning. When we came in this morning, she handed us a card she wrote for her aunt Lauren.image

No major medical updates today. She continues sprinting and feeding. They are adding 1/2 teaspoon of protein to her feeds to keep her growing.

Playtime (stretching and sprinting) are in store for her today.

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38 Days Old: Daily Update

Good morning. Olivia had a peaceful evening.

Medical updates:

  • Respiratory continues on the same trajectory – continuous workouts.
    • She’s now ordered for 3-4 sprints per day. This is up from 2 sessions/day.
    • She “ran” for an hour this morning in Dad’s arms. They had a transcutaneous CO2 monitor hooked up during the exercise to measure her CO2 levels (grey and purple gizmo attached to her tube in the image below). Rates consistently held in the 40s-50s, which is great for her.
    • Note: overnight she had a significant desat event, however, it was deemed to be related to the tube “tenting” against the wall of her lung due to movement. They’re going to adjust its position (depth) and re-tape her today.
  • Feeds remain consistent at 19 MLs/hr. She had a residual of 19 overnight, well under the limit. These are now checked every 12 hours.
  • Direct bilirubin measured at 7.0. Last measured on Thursday at 9.7, this is fantastic! Since the number has previously jumped around on us (8.6-9.7), they await Thursday’s reading to assess any measurement error (e.g., was today’s 7.0 or the 9.7 a false reading).
  • Other regularly scheduled labs came in as normal (hems, etc.).

After her morning sprints, Olivia requested to start the literary classics curriculum. Dad read her Cinderella, Jack and the Beanstalk, the Tortoise and the Hare, and a few others.


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37 Days Old: Daily Update

Good morning and happy Memorial Day. Olivia had a peaceful night.

Medical updates:

  • Feeds are going up to 19 MLs/hr to add calories and keep her growing.
  • Respiratory rates and settings remain the same. She is scheduled for two sprints today, with one going on at the time of writing. So far, she’s doing well with these exercises. They are expected to continue throughout the week.

Mom will post more pics of Olivia this afternoon.


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