Uneventful and peaceful day in room 15. Olivia was awake all morning, first spending a couple of hours in Dad’s lap, followed a couple more hours out of bed in Mom’s lap. When we put her back in her crib for her 12PM care routine, she tolerated it nicely (with no respiratory events) and then stayed awake for most of the afternoon.

Since she was so alert – and not agitated or angry – we took the opportunity to try out a new mobile in her crib. Olivia has responded well to all of the toys that the child life and OT teams have provided for her crib, and she especially loves the mobile we introduced a month ago. But after listening to the same tunes, and looking at the same pictures for a month straight, we figured it was about time for a change.

Within seconds of installing this mobile, the girl was hooked. Absolutely captivated. She remained fixated on the toy for quite some time, before taking a snooze. Toy time is hard work!

In medical news: the additional labs that GI ordered yesterday came back within normal range, indicating that her overall liver function is okay, despite the elevated ALT and AST. We’ll continue watching these numbers each Tuesday, but for the time being, no action.

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!