53 Days Old: Daily Update

Following last week’s trial extubation, Olivia returned to her usual self (and settings) in a matter of days. However since then, she’s experienced a handful of respiratory events, beginning overnight Monday. An x-ray yesterday afternoon revealed signs of atelectasis in her right lung (again), so sprinting has been put on pause while we work to get both lungs fully recruited.

This morning in rounds, the team increased her rate on the ventilator from 15 to 20 to give her a bit more support. A follow up x-ray will be taken tomorrow to see how her lungs look.

Initially a team member suggested that the atelectasis was a result of her sprint on Tuesday, but after reminding the team (some of whom are new to her case this week) that her events started before Tuesday’s sprint, and that prior to extubation she was sprinting more hours a day than not – we all agreed that the sprint was not the culprit, but most likely didn’t help her out any. The best explanation as to why she started derecruiting again this week (after she had looked so good prior to her extubation trial) is that she’s growing, she’s getting bigger, and her “baseline settings” may no longer be sufficient.

It makes sense. The ventilator is helping provide a certain amount of volume and pressuer to her lungs. If the volume and pressure stays the same, but her body and lungs are getting bigger, that volume and pressure may no longer be enough.

So we’ll continue tweaking settings, bit by bit, to try to find the optimal support she needs.


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47 Days Old: Extubation Trial #2

I wish we had a more positive update to share this morning. Yesterday around 3:30 PM, Olivia was reintubated. Since being extubated Tuesday morning, she had a number of good stretches and it was such a thrill for us both to see more of her face, to hear faint hints of a cry, and to be able to move her more freely.  But ultimately – despite increased assistance via pressure support, rate, and oxygen levels, Olivia was unable to keep her lungs expanded and working well enough to remain without the assistance of the breathing tube. The whole 31-hour ordeal was extremely taxing on her. She experienced two collapsed lungs (first the right on Tuesday, then the left on Wednesday), it appears some alveoli may have burst, and her CO2 levels were sky high putting her back into an acidotic state. Because we, along with her team, wanted to try to give her a real shot at success, we pushed her through multiple attempts to recover on her own before making the decision that it was no longer in her best interest to remain extubated.

Before reintubation

Similar to last time, the path to recovery from this trial will likely be a few days. In the hours after being reintubated, her CO2 levels remained high. However overnight she seems to have settled down and made herself comfy again. She’s bounced back considerably at this point but has a way to go.

Sleeping after reintubation.

We were both so excited to get the ok from pulmonology for another trial extubation, that we hadn’t realized how difficult the time would be on us as parents. Every minute she was without support from the breathing tube was stressful. Seeing her heart rate high, seeing her little head and body covered in sweats, seeing her visibly struggle was heartbreaking. There were times we questioned whether we had made the wrong decision to trial extubation again. Once as I watched her cry for a moment, I even turned to Luke and asked if what we were doing was cruel. It was so hard, but in our more rational moments we knew it was the right time, and it was right to give her time to try and work it out on her own. Prior to extubation she had shown us all of the right signs that she was ready to try, while extubated she showed us all of the right signs that she was trying as hard as she could, and eventually, she showed us this just wasn’t the right time.

To make sure we end on a high note, here’s a more positive moment, taken on Tuesday afternoon while she was comfortable and enjoying her new getup! Note: the “breathing sound” is the RAM machine, not her actual breaths.

Throughout the day today we’ll work to wean her ventilator settings (pressure and rate) back to a level that’s closer to where she was on Monday. We’ll also meet with Dr. M who is her attending through the end of the week to discuss the trial, get his perspective on what we learned, and understand where we go next. But in the meantime, today and the next few days will be focused on resting and recovery. The little girl is pooped, as are mom and dad.

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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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14 Days Old: Evening Update

Olivia gave us a big scare today. After being transferred into Mom’s arms for holding, she stopped breathing and her heart rate plummeted, signaling a “Code Blue”. It was a scary minute as doctors and nurses crashed down on her room responding to the order to resuscitate. After what felt like an eternity (but was only 2 minutes) Olivia bounced back. Both Whitney and I saw her life flash before our eyes.

So, what happened? The doctors refer to what happened as “clamping down,” which means both of her lungs suddenly collapsed and blocked the end of the tube. Apparently, it is not uncommon for kids on the respirator (but they usually bounce back faster). They suspect that when shifting positions, a large amount of fluid moved in her lungs causing this reaction.

The event happened around 4:30 PM and lasted approximately two minutes. Olivia is recovered and resting now. She is on increased pressure and O2 support. We are waiting for further updates.

Otherwise, she continued on her feeds today despite no stool. Attending and fellows have decided to give her another day before trying a suppository. In the meantime, she is progressing on 2 MLs of breastmilk per hour.

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14 Days Old: Morning Rounds

An update from overnight and rounds.

It was a tougher night for Ms. Olivia. Respiratory struggled and an x-ray revealed a collapsed right lung. Increased ventilator settings and position changes alleviated. AM exams indicate she has yet to fully recruit her right lung (i.e., she’s still recovering). In rounds, they discontinued direct positioning on her sides. They encouraged movement and upright positioning, resulting in an inclined bed and more time in mom’s arms. Chest PT will be increased to every 3 hours (Q3) and they’ve ordered a “buzzy” (buzzyhelps.com) for continuous lung stimulation.

Feeds suspended from midnight to 4 AM, as her stomach returned green colored residuals. They ruled it OK and continued at 4 AM. They will redraw residuals at noon to check again. Depending on progress, they may order medication tomorrow to help her digest. A suppository is in her future if she does not stool by 4 PM.

A lab update informed us that microarray genetics results came back negative. Dr. F has not stopped by yet to describe the results (they came in overnight). The results reconfirm mom’s prenatal tests, and rule out commonly known chromosomal issues. Doctors previously intimated that any genetic condition of Olivia’s could be of the very rare type. Additional genetic tests are pending.

Glucose levels rose slightly overnight but recovered on their own.  Her TPN will be adjusted down for glucose as a precaution. They continue to reduce her sodium levels as her kidney performance looks good.

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11 Days Old: Morning Rounds

Good morning. Updates from rounds.

  • She was stable over the evening.
  • The roving atelectasis continued, with her right lung showing partial collapse in an overnight X-rays. Shifting her position appears to help. They continue her two lung medications.
  • Her feeds (mom’s milk) are delayed to let her continue to show signs of progress. She is back on TPN and lipids and her total fluids are increasing tonight (good).
  • The renal issue appears stable and they will continue to monitor (good).
  • We await liver tests. Her direct bilirubin continues to rise. They are starting phenobarbital as a treatment.
  • Official results from the MRI showed that she had bleeding inside the skull from birth trauma (previously suspected only between skin and skull). This is recoverable and not causing any harm. She showed signs of a stroke during birth, which is also expected to be recoverable.
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9 Days Old: Morning Rounds

Good morning. No major updates to report this morning before rounds. Olivia slept well through the night and was really excited to see mom this morning. Her ventilator is on 36% o2. We’ll see what the plan holds for today. If she remains stable, we should have some more time skin-to-skin with mommy. More updates after rounds.

Updates following rounds:

  • The team is now looking into her kidneys, as test showed a drastic (and sudden) decrease in sodium. A pediatric renal specialist, Dr. R, will now be working with Olivia today. They suspect SI ADH (potentially an acute case resulting from the lung collapses, or a more severe scenario from her brain) or renal wasting (a kidney disfunction). Testing is ongoing and we expect updates today.
  • Her liver ultrasound was normal. They did not see blockage, but did see some sludge in her  gallbladder. Tests continue around the liver concerns as well.
  • Updates about both her liver and kidney symptoms have been sent on to the geneticist, Dr. F. We may expect a visit from him today or tomorrow – but likely not results.
  • Her left lung was completely collapsed in yesterday’s X-rays. A positioning change seems to have opened it up. They are calling this “roving atelectasis”, which means her lungs struggle based on “mechanical” things like position and mucus plugging. They may decide to do a full suction on her lungs depending on progress in coming days, but that has not yet been ordered. In the meantime, nurses continue to suction her tube as needed. Her next x-ray is scheduled at 4 PM.
  • The MRI is postponed, due to all these events.
  • The continued issues are concerning but may get us closer to understanding her underlying condition(s). Mom and dad are still positive. She continues to receive top tier care and attention.
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8 Days Old: Morning Rounds

  • Dr. S. is in today.
  • She’s trying out a new position this morning, lying on her stomach.
  • She had a very active night and early morning. Her left lung was looking collapsed from overnight X-rays. They started her on Albuterol, which should help open her lungs. They also started Dornase to help with the secretions, which were high yesterday. This morning X-rays showed improvements, but pulmonary is still the primary concern for today. The team also noticed yellow secretions from the lungs, which is a possible sign of infection. They ordered blood tests – complete blood count (CBC) – that let’s us look for signs of infection via white blood cells. Those came back negative. They also ordered a C Reactive Protein (CRP), which was high (8) but not enough for concern. Her oxygen saturation levels are low – due to all the mucus plugs – so she is up to 46% O2. They are going to move her breathing tube up a little. They may due a few more techniques to attempt to clear her lungs.
  • Feeding has stopped, as they want to treat pulmonary first.
  • TBD on the results from the liver ultrasound. Other tests of her liver were OK.
  • She is off the phototherapy. Her indirect bilirubin count has come down, however her direct levels continue to rise which is concerning.
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6 Days Old: Daily Updates


Good morning. No major morning updates. They gave her a diuretic yesterday to help with all the extra fluids she got from the transfusion – it worked and she came down 180 grams. Bilirubin is high, which is expected given the birth trauma, and she may undergo UV treatment tomorrow. Otherwise, all looks well. She looked liked she had a good night’s sleep.

10:18 AM

Morning update! She’s going to try coming off the ventilator today. This should happen this morning. Feeding from mom could start this evening if it goes well. MRI will be Sunday at the earliest, as they want to see how her respiratory changes go first. Her arterial line may come out tonight, also depending on respiratory progress. We continue to monitor bilirubin levels, but there is no treatment planned yet (intentionally). Dr. S and P will be in this Saturday to check on her. Everything else looks good.


An update: removing the respirator was unsuccessful and Olivia is back on the ventilator. They tried a few different methods, but ultimately she was exerting too much energy to maintain the necessary lung expansion. The good thing is she knew to breathe. She was off for about an hour total. We heard the faintest hint of her voice in the process. She is now sedated and sleeping. They will try again next week (date TBD). In lieu of today’s respiratory “failure” the team will focus on feeding as her next goal. Olivia got a visit today from Troy Lichten, who stopped by to say hi on his birthday.


Good evening. No major updates to report tonight. She awoke from sedation and was alert for a little before going back to sleep. She did make an effort to pee on mom. X-rays still showed her right lung as partially collapsed (something noted before). She is propped on her left to alleviate pressure on the right lung tonight. OT didn’t happen today due to the difficulties she had with the respirator. Feeding is on the docket for tomorrow, along with a visit from the Guerrero clan.

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