15 Days Old: Evening Update

Update from the day. Pretty good day.

  • Olivia got a ton of time with mom, including 2 hours of skin-to-skin.
  • She had visit from the Guerrero Grandparents (they came in last night).
  • Feeds continued throughout the day. We had a setback in the late afternoon when she gave back 14 MLs of a mixture of milk and other fluids. It was examined and then discarded, but feeding still continued. She did receive a suppository when they continued feeds to see if that helps move things along.

No major update on other areas. Tomorrow we are both in the hospital, but dad starts the transition back to work (from the hospital library).

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15 Days Old: Morning Rounds

Good morning and happy Mother’s Day! Overnight Olivia was great.

  • She continued feeding, leaving no residuals.
  • Initial results from this morning indicate that her direct bilirubin level is down! It’s still high, at 14.2, but had been continuously increasing, a sign that it wasn’t being processed. We await rounds for further and formal interpretation.

Following up from rounds. No major updates to her plan for today.

  • She will stay at 2 MLs/hr today on her feeds and increase tomorrow.
  • As previously reported, bilirubin came down and that’s a good thing. They hope it continues to fall.
  • Respiratory is relatively the same. They will attempt to ween ventilator settings today, however slowly.
  • Momma should get some holding time today around 2 PM.
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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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13 Days Old: Evening Update

Update from the day.

  • Feeding paused after a mid-day check showed she was not digesting the volume being given. They refed her residuals so it will remain in her stomach, and they’ll check again at 8:00 PM to see if she has digested more. If she digests what was fed back, they’ll restart feeds accordingly.
  • Neuro informed us they are waiting on a pediatric neuromuscular specialist to assess Olivia, since she is a non-standard case. The specialist returns on Wednesday. We are holding until then.
  • The GI team updated their testing plan to include a HIDA scan. This is an assessment of the flow and functioning of her liver. This testing uses radioactive traces that act like bilirubin to map the flow of digestion. Since it’s a complex test and requires transporting Olivia multiple times, the core team may recommend holding this until after neuro weighs in.
  • Respiratory remained the same.
  • Olivia had some holding time with momma. She otherwise was asleep most of the day.

No other major progress or declines today. This weekend will likely continue to focus on feeding.

Finally, her NICU core team is switching under the care of attending. Dr. S’s rotation ends tonight. The transition started today. Dr. P rotated off as well, replaced by fellow Dr. M, however, she is covering nights this coming week and will continue to monitor Olivia.

Update: the 8 PM review found she had processed 5 MLs of breastmilk (and returned only 3). They are restarting now, and adjusting for the difference. That’s good news!

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13 Days Old: Morning Rounds

Updates from the morning & rounds.

  • Olivia continued to progress with feeds: giving back a net 2 MLs in a check last night and nothing this morning. They will increase her to 2 MLs per hour. She also had a stool last night, which means she’s digesting. At her current age and weight the goal is to get her to 15 MLs an hour. Getting from 2 to 15 MLs an hour will take time but they’re continuing to closely to monitor her tolerance for feeds and will increase volume when appropriate.
  • Overnight her CO2 levels increased slightly and they adjusted her pressure support accordingly. They continue to look for opportunities to ween back on this. Her X-rays do look better but they need to wait for the next round of blood analysis before adjusting the ventilator.
  • Bilirubin increased slightly overnight. The rate of increase is lowering, which is positive, however we are hoping for a decrease in total amounts, especially direct bilirubin.
  • A bunch of tests came back normal so they continue to rule various conditions, helping us to focus our search for a diagnosis.

Some good and some bad updates today, but mom and dad are really excited for the feeding progress. We hope it continues.

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12 Days Old: Evening Update

Updates from today. Good day.

  • Olivia started her feeds today. She received 4 MLs and gave back 4 MLs, however this is being viewed has okay since she usually gives back a 3-6 MLs of stomach secretions. She is continuing feeds throughout the evening.
  • Respiratory was good today and the amount being suctioned is decreasing.
  • She got about 1.5 hours of skin-to-skin time with mom today.
  • She also had a visit from her Grandparents.
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12 Days Old: Morning Rounds

Good morning. Updates from rounds.

  • Primary goals are improving respiratory. No changes in ventilator settings, but continuous PT and repositioning. We may expect another attempt coming off the ventilator in the coming days, based on performance.
  • She will start a small, but continuous amount of mamma’s milk today.
  • They are going up on total fluids to 120/kg/day from 110 based on her improved kidney performance. They are slightly decrease her sodium intake (as positive sign).
  • They will discontinue (DC) the catheter (as we thought they may do yesterday).
  • They also slowed the rate of several tests and DC’d others. These are positive events as they reduce the amount of blood drawn, equipment attached, and other tests.
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11 Days Old: Evening Update

  • Olivia was excited to have a special visit today from her Grandparents (the Priors)!
  • No major updates on her condition.
  • They have closed out her kidney issues as they believe it’s back to normal. They will be removing her catheter later tonight as regular urine samples are no longer needed.
  • She had a large blood draw around 4 PM for a bunch of tests ordered from the core and GI teams.
  • Holding time with mom was cancelled today as she got a little fussy post blood draw.
  • Dr. P presented her case today to the hospital department heads in a scheduled monthly meeting. We have some new ideas flowing for tests and areas to investigate from that meeting.
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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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