58 Days Old: Daily Update

There’s very little to share today, aside from a few of my favorite pictures from yesterday’s Father’s Day themed bed. Obviously, Olivia needed to let Dad know that she fully supports and shares his love of golf.

Today’s plan from morning rounds was to stay the course:

  • full feeds with supplemental formula, liquid protein, and now oral antibiotics (no more IVs)
  • same ventilator settings
  • lots of chest PT and suctioning, and
  • sessions with both PT and OT for some exercise and movement

As expected, having no food for a couple of days last week did result in a slight weight loss (3100g), but she was growing steadily before she got sick so we expect her to pick back up with weight gains soon.

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Someone’s Feeling Better

Just in time for her first Father’s Day celebration, Olivia seems to be a bit more like her usual self today. She’s been on and off napping throughout the day (like all babies, right?) but when she’s awake, she’s awake! She also had a great blood gas, and low residuals, so we’ve decreased her respiratory rate and increased her feeds.

Fingers crossed that bout is behind us. Here’s our sweet girl, triple chins and all.

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56 Days Old: Daily Update

Extensive evaluations over the past 24 hours revealed the cause of Olivia’s hard week to be an E.Coli-based UTI. Exacerbated by her congenitally frail pulmonary system, the infection is presumed to have caused all that respiratory trouble and fatigue that’s been troubling her the past 5 days.

We’re excited to have this diagnosis. In our 56-day bout, we have yet to encounter a cause->effect->treatment chain of events. It’s refreshing to see our doctors know the issue and how to treat it.

They started her on a precautionary antibiotic treatment yesterday when they first suspected an infection. It will continue for the full cycle, ending tomorrow. If the regiment doesn’t do the trick, they will switch to a UTI-specific work-up.

Today, Olivia remains on elevated breathing support parameters to take the load off. Her feeds restart at noon. Her last feeding was 24 hours ago, so we suspect she’s hungry. We’re starting at 10 MLs/hr and going up by 5 MLs every 12 hours until we reach 21.

Otherwise, the Guerrero Grandparents and Aunt Lauren will visit today. All morning Olivia has been blowing big bubbles of saliva in an attempt to decorate the room for their arrival.

June-18-Morning and Awake
Dad, I’m exhausted.
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55 Days Old: Daily Update

Late one night, sometime shortly after Olivia was born, one of my oldest and dearest friends called, planning to leave me a supportive voicemail. I surprised her, by picking up the phone. We spoke for quite awhile. I shared with her more details about Olivia’s status, her condition, my emotions, than I had with anyone else. See… she’s one of my oldest friends, she’s incredibly straight forward… and she’s a nurse. Not only is she a nurse, but she’s a nurse in an intensive care unit. The words surgical and trauma are in there somewhere too. Maybe in a different state – with adults, not neonates – but regardless, she’s a STICU nurse so she sees a lot of crazy, messed up shit on the regular.

She said a lot that night, but one of the more simple, sticking points was: we have to be prepared for good days and bad days.

Maybe a lot of good days followed by a couple of bad days. Maybe some bad days followed by just one, glorious, good day. But that it was going to be a journey. An up and down, and up and down, and up and down kind of journey. We had to be prepared for a journey that may not be a simple and steady rise of good, better, best days.

This week has been a week of more bad days than good.

The respiratory events have continued each day since Monday. She’s thankfully been sleeping well (and uneventfully) each night, but each day seems to be filled with desats, bradys, bagging, and just an overall uncomfortable little girl. We’ve had a series of x-rays, adjusted ventilator settings, continued our usual tricks of rigorous chest PT, suctioning, and careful positioning, and even changed her ET tube to one with a cuff in an attempt to remove her major air leak from the list of possible culprits.

This morning’s xray looked good: no signs of atelectasis and the tube was positioned well. So next up we’re running a whole slew of labs and blood work to rule out infection. In addition, we’re going to begin giving her some fluids since we’ve paused her feeds, we may start her on antibiotics for 48 hours, and we’re reverting back to her original Reglan dosage (since that was one medical detail that had changed this week).


In other baby news: Olivia had a massive blow out all over my favorite outfit of hers, and I successfully clipped all 10 fingernails without any issues or accidents 🙂 Grandma and Grandpa Guerrero will be arriving tomorrow for a visit, and Olivia is working on some special gifts to give Dad on Sunday!

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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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52 Days Old: Daily Update

The day has come! Olivia’s direct bilirubin finally crossed the <2 threshold. Today’s labs show her direct bilirubin at 1.9. Her total is still above 2.0, but seeing her direct down this low is fantastic news. Keep in mind at one point this was 17! I’m not sure if we’re safe to cross hyperbilirubinemia off her problem list just yet, but it sure feels like we’re close.

As a result of the steady decrease, the team is discontinuing two medicines: her Ursodiol and also her Actigall vitamin. We’re excited to get rid of the Actigall, as it regularly has given Olivia an upset stomach. In its place, she’ll receive vitamin A and D on a daily basis. Discontinuing the Ursodiol is a bit of a test. We’ll keep an eye on her direct bilirubin week over week (via her Tuesday labs), and if it begins to creep up again we’ll likely start the Ursodiol again.

In respiratory news: Olivia sprinted for 2 hours last night, and will continue more exercise today. She’s due for a 2 hour sprint this afternoon, and a second sprint this evening around 8PM. In addition to monitoring her CO2 via an end tidal during these sprints, we’re going to advocate for an x-ray at the end of each sprint to see if she shows any signs of atelectasis. Because she had her first lung collapse so earlier in her extubation trial last week (after just a couple of hours), we’re curious to see if she show signs of atelectasis during sprinting as well.

Favorite position to snooze
Hanging out, not ready for a nap
Afternoon nap with mom on Monday
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50 & 51 Days Old: Daily Update

Quiet days continue in room 15.

Nana and Grandpa Prior visited yesterday before heading back to Maine, and Luke and I spent the day and evening with Olivia, per our usual routine.

Most often now a days Luke will arrive first thing in the morning – usually before 8AM and spend the early hours one on one with Olivia. This gives me some quiet time to either sleep in (which I’m quite good at), putz around the house, or run errands. When I head in to the hospital mid morning, we’ll overlap for a few hours, have lunch, and hang out with Olivia together as a family before Luke takes his turn to get outside. Depending on whether it’s the week or weekend, he’ll either go into the office, head home to take care of things like lawn work and house projects, or get outside for a round to relax. It took us over a month before we decided to try this routine, and while we don’t take shifts every day, it’s brought a little bit of balance to our lives, and provides us each some alone time.

Today Olivia has both PT and OT sessions planned, and will likely restart a sprinting regiment this afternoon.

PT and OT continue to work on range of motion and strength, with new fun activities like sitting up! Pictures below show Olivia practicing this new position with mom and dad over the weekend. She doesn’t always “actively participate” – sometimes she likes to relax and let us do all of the work – but on occasion we can feel the smallest bit of engagement from her neck muscles. Steps in the right direction.

Sprinting was discussed this morning as a possibility for this afternoon, depending on today’s weight. The team wanted to wait for today’s weight to see if Olivia was up again from her last weight. Turns out she is up 30 grams from yesterday (now 3030 grams) so we suspect the sprinting will be cleared. While small, the incremental gains day over day are appropriate signs of growth, and hopefully enough to get her back on the growth chart. She was born very small, so we’d be happy to see her back around the 3-5% mark, but ultimately the team would like to see her catch up more and land around the 20-25% range.



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49 Days Old: Daily Update

We expect today to be a nice, lazy day for the little miss. Thankfully she decided not to pull another all nighter, and based on this morning’s report she appears to have actually slept well overnight.

This morning in rounds we met our new attending doctor, who will serve as Olivia’s “primary” doctor for the next two weeks. We’ll refer to him from here on as Dr. D., who we’ve heard is “the big cheese”. That was Dr. M’s phrase. Officially, Dr. D. is the current division chief of the NICU, so we’re excited to have him on Olivia’s case.

Medically there are no changes or events planned for the day. Olivia’s been weaned down to her pre-extubation ventilator settings, and feeds are continuing at 20 MLs / hour with 3 teaspons of powder and 6 MLs of liquid protein. It sounds like the main goal is to get this girl growing. That means letting her rest, encouraging deep sleep, working with OT on muscle strength, and eating like its going out of business.

And you know what comes with eating like its going out of business? Baby blowouts. As evidence, notice the outfit change from this morning:

Outfit number 1 for the morning
Outfit number 2 for the morning



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48 Days Old: Daily Update

If it wasn’t obvious enough to us before, it’s official: we have a night owl on our hands.

Throughout Olivia’s first month or so, we realized her “witching hours” coincided nicely with the nurses’ shift change, between 6-9PM. She’d regularly be fussy and hard to settle, and require a lot of attention during these hours, only to then be wide awake throughout the late evening hours. But last night was impressive. Olivia pulled her first all nighter! Most people don’t experience their first all nighter until you know, maybe a middle school sleep over, or finals week in college. But Olivia walks to her own beat (or whatever that expression is) and decided 1.5 months old was the right time to test the waters. Her night nurse reported that she was wide awake and playful from 8PM – 6AM! Playful in Olivia terms usually means content, wide eyed, looking around, and wiggling her fingers like crazy, as if she’s either concocting something mischievous or rehearsing a complex Yanni piece.

Olivia woke up this morning for her 8AM change and chest PT session, and to say hi to Dad, but it’s no surprise that she is now sound asleep.



Medical updates:

  • Nutrition – gaining weight and building muscle is a huge goal for Olivia right now. Her latest weight was slightly down from her previous weight, and while she did gain week over week this week, it’s not as much as her team would like to see. We’re increasing her “protein powder” to 3 teaspoons today.
  • Respiratory – we are continuing to decrease her ventilator settings with her pre-extubation settings as the goal. These are what we now consider her “baseline” settings, as we know she can tolerate them quite well. Overnight she was weaned to 18/6 for pressure, 25 for rate, and 21 for O2, and after rounds this morning we’re decreasing her rate further to 15. The team also decided to discontinue her regular blood gases. Instead, we’ll relay on the end tidal machine to monitor her CO2 levels, and wean her ventilator settings based on those readings. The end tidal is less invasive, and means less pricks and labs for Olivia.

Dad is spending a few hours in the office today, so Mom’s on duty at the hospital for now, and Grandpa Prior and Nana arrive this afternoon for a visit!

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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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