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.

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.

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!

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:

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!