60 Days Old: Daily Update

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!



Playing with new toys is exhausting!

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.


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59 Days Old: Daily Update

Another short and sweet update.

Olivia’s weight today is 3165g, up 65g from her last weight. While she’s back on track in terms of gaining, Olivia’s been pretty pukey the past couple of days. This may or may not be a lingering symptom of last week’s infection and subsequent antibiotic regiment. We’ll see if her stomach and motility issues continue in coming days.

In other news: her direct bilirubin is down to 1.3, but ALT and AST are elevated, and continue to climb week over week. The GI team came by this afternoon and although they are quite pleased with the direction of her bilirubin, they ordered 2 additional tests to evaluate overall liver function.



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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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I Love It All – Olivia’s Father’s Day Letter

Hi Daddy,

It’s me: Olly olly oxen free! Just kidding. Olly olly OLIVIA. Ooooh-LIIIV-iiiia! Isn’t saying my name so fun? I love my name. I love music, and milk, and my mobile, too! And guess what else? I love you! Duh, Daddy. I love you more than most things. Except maybe my milk. My milk is my most favorite thing. I think. Actually, maybe I love you and Mom more. I’ll think about that one and get back to you soon, okay? I’m still figuring out lots of things so I just need a little more time to think.

Happy Father’s Day, Daddy.


I think you already know this, but you’re pretty rad, Dad. See what I did there? I made a funny! I made a rhyme! I learned about rhymes from you, Dad. From when you read me books, like Dr. Seuss. And books about little trains and little blue trucks. They all rhyme and you read them really well in this special voice that makes all the words flow one after another, in a voice that sounds almost like a song, where all the words somehow rhyme! You didn’t always read them that well, but you do now. And they always rhyme. I don’t know how you do that, but you do, and it’s pretty cool. So you taught me about rhymes, Dad! How cool is that?

I know it’s only been two months, but I’ve learned a lot from you, Daddy. I’ve learned about rhymes, and literature, and fancy music like Mozart and Yanni. Yanni is my favorite. But you already know that. I’ve learned about light switches and stinky shoes and golfing and even how to cook a potato.

You taught me about hugs and kisses, too. And you taught me when they all come at me at once, lots of hugs and lots of kisses one right after another, really fast, that’s called a smother. And it’s your favorite thing to do. You taught me it’s not Mom’s favorite, kind of like the mornings, but smothers are your favorite and I think they’re becoming my favorite, too. Mostly because they come from you. Daddy smothers! Keep them coming, Dad. That can be our special thing. Smothers. But no squeezing, okay Dad? Sometimes you talk about wanting to just squeeze me so hard, but Dad! I’m so little! You can’t squeeze me, or my head might pop off! So stick to the smothers. I love your smothers.

Your hugs and your kisses and your stories and your music.

I love it all. I love everything about you and everything you do with me and all of the seconds we spend together. All of it. I love it all.


I love you, Daddy.


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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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Room 15

Luke and I have spent the large majority of every day since Olivia’s birth, in the hospital, right by her side. Not a day has passed without us both being here. 52 days worth of driving to and from the hospital. 52 days of trying to catch the doctors’ rounds, caring for Olivia with her day nurse, greeting her night nurse at shift change, eating meals in (or around) the hospital. 52 days of heartbreaking goodnights as we leave to head home.

If Olivia has had to spend 52 days here, so will we. It’s been 52 days of stress and worry, but also 52 days of love, laughing at the funny things she does, soaking in the sweetness of our little Olivia, and making her surroundings our home away from home.

And neither of us would have it anyway, honestly. For any of you who are parents, that’s probably pretty obvious. Whether Olivia is here another month, or another 6 months, I cannot imagine letting a single day go by without one (or both) of us being by her side here in room 15.

So, room 15. Since the NICU comes with plenty of rules regarding visitors, and so many of you live far away, we thought it would be fun to share pictures of Olivia’s room with you. This way you can envision her day to day a bit better, and have a real vision in your head as your read about her journey.


View from the doorway
View from the doorway. Olivia’s crib and medical equipment are to the left, Mom and Dad’s space is to the right.
Our space. A couch and table that turns into a bed, a rolling desk so Dad can work remotely, a recliner chair, and closet.
From the other side
Nurses station, computer, Olivia’s crib, and machines
Peek at sleeping beauty
Books and books
Words of encouragement
Blankets, books, and baskets from home
The shelf beneath Olivia’s crib, where we store some of her clothes from home, sheets, diapers, wipes etc.
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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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