Olivia Grace – Page 5 – Our sweet girl’s journey with congenital Spinal Muscular Atrophy (SMA)

43 Days Old: Daily Update

June 5, 2016 9 Comments

Good morning and happy Sunday!

Olivia did great last night with a new nurse, Meghan. She did a 3-hour sprint starting at 6 AM. She’s due for her next at noon.

No major medical updates or labs today. Feeds are increasing to 20 MLs/hr. Her sprinting schedule remains the same – 3x/day for 3 hours each.

Charise and Maccie will stop by today to say goodbye before hitting the road. Olivia and Meghan chose flamingos for the occasion.

Daily Rounds

42 Days Old: Daily Update

June 4, 2016 9 Comments

Good morning. Olivia had a great night with one of her favorite nurses. She awoke early for a jog from 5:30 to 7:30 AM.

Medical updates:

Bilirubin is down to 5.1. We’re loving the continuous slide here with 6.1 & 7.0 in the prior two readings. Her goal is sub-2.0. Based on Dad’s very fancy (10th grade) math skills, he’s projecting she’ll get there by June 16th.

The team continues to push her on respiratory. Her sprints are ordered to increase to 3 hours, 3x/day. She’ll start that this morning.
Feeds remain constant. Her weight is up another 50 grams.

Ms. Olivia will be entertaining guests today and asked to be dressed for the occasion. Mom helped her out with the selection. Charise and Lindsay (Maccie) arrive from Connecticut and Massachusetts, respectively, this morning. Olivia (and Mom) are very excited.

Daily Rounds

41 Days Old: Daily Update

June 3, 2016 4 Comments

Good morning! Olivia slept soundly last night. She was exhausted from a multiple hour play session with Mom yesterday.

No lab updates for today. Sprinting continues on the respiratory front. We ran for 2 hours to start the day. Feeding remains the same. We’re not starting bolus-style feeding, as mentioned yesterday, instead focusing breathing and OT progress.

Dad went with the blue whales today.

Daily Rounds

40 Days Old: Daily Update

June 2, 2016 4 Comments

Olivia had a great night and a fun morning with Dad. While sprinting we jammed out to Yanni, then wrapped up with Rumpelstiltskin and The Little Engine That Could. I put her in pink flamingos for the festivities, check ’em out below.

Medical updates:

Respiratory. Sprinting sessions are ordered to increase to 2 hours, based on stellar performance thus far. We hope to make some assessments on the ventilator next week.
Feeds. Holding steady here – 19 MLs/hr, +1.5 teaspoons of pregestimil, +6 MLs of liquid protein. Tomorrow we may trial bolus-style feeding. Right now she’s on a continuous feed where milk drips into her stomach at 19 MLs/hr. Bolus-style feeding simulates her feeding naturally, giving her 76 MLs (4-hours worth) all at once.
Billy. Direct Bilirubin continues its slide down to 6.1 from yesterday’s 7.0. This is fantabulous. Sub-2 is the goal.

Note, the hose is pulling on her face in this photo. That’s why her right eye looks a little funky.

Daily Rounds

39 Days Old: Daily Update

June 1, 2016 5 Comments

Good morning. Olivia had a quiet night and morning. When we came in this morning, she handed us a card she wrote for her aunt Lauren.

No major medical updates today. She continues sprinting and feeding. They are adding 1/2 teaspoon of protein to her feeds to keep her growing.

Playtime (stretching and sprinting) are in store for her today.

Daily Rounds

38 Days Old: Daily Update

May 31, 2016 8 Comments

Good morning. Olivia had a peaceful evening.

Medical updates:

Respiratory continues on the same trajectory – continuous workouts.
- She’s now ordered for 3-4 sprints per day. This is up from 2 sessions/day.
- She “ran” for an hour this morning in Dad’s arms. They had a transcutaneous CO2 monitor hooked up during the exercise to measure her CO2 levels (grey and purple gizmo attached to her tube in the image below). Rates consistently held in the 40s-50s, which is great for her.
- Note: overnight she had a significant desat event, however, it was deemed to be related to the tube “tenting” against the wall of her lung due to movement. They’re going to adjust its position (depth) and re-tape her today.
Feeds remain consistent at 19 MLs/hr. She had a residual of 19 overnight, well under the limit. These are now checked every 12 hours.
Direct bilirubin measured at 7.0. Last measured on Thursday at 9.7, this is fantastic! Since the number has previously jumped around on us (8.6-9.7), they await Thursday’s reading to assess any measurement error (e.g., was today’s 7.0 or the 9.7 a false reading).
Other regularly scheduled labs came in as normal (hems, etc.).

After her morning sprints, Olivia requested to start the literary classics curriculum. Dad read her Cinderella, Jack and the Beanstalk, the Tortoise and the Hare, and a few others.

Stories from Mom

Celebrating Firsts

May 30, 2016 8 Comments

Spending the first portion of Olivia’s life in the NICU is certainly not what Luke and I had envisioned for our family, but it is what it is and here we are: #NICUlife. There are countless things that cross my mind while being in the NICU, many of which include the laundry list of ‘typical’ memories we are missing – or hopefully simply delaying. Our first night at home, walks around the neighborhood, car rides, errands around town, visits with friends, afternoons at the park, evenings on the deck. Not to mention summer vacations, trips we had planned, and places we wanted to take our sweet girl.

Also on the list of events that are unfolding unexpectedly are holidays.

We spent our first mother’s day in the NICU, not at home how I had hoped. I turned 30 while hanging out with our sassy gal in the NICU. And today marks the beginning of summer holidays: Memorial Day. Olivia’s first Memorial Day! Instead of spending the day with outdoors, introducing Olivia to our friends at a picnic, we’re still here.

Celebrating these firsts… experiencing our family’s early memories in the NICU… is sad. My heart is often flooded with sorrow, sometimes jealousy, and even resentment. But at the same time, my heart is full. While sad, unexpected, and not exactly typical, this is our situation, our life right now. And so despite our environment, despite where Olivia spends her days or where she sleep, despite her condition and the string of unanswered questions, we carry on. We spend every day with our little girl, just as we would have under ‘typical’ circumstances. And we celebrate all sorts of firsts, as any other new parents would… just with slightly different surroundings.

So today, on Olivia’s first Memorial Day, we celebrate the start of summer and remember those who gave the ultimate sacrifice while serving our country, NICU style: with a decorated bed and festive clothing.

Daily Rounds

37 Days Old: Daily Update

May 30, 2016 6 Comments

Good morning and happy Memorial Day. Olivia had a peaceful night.

Medical updates:

Feeds are going up to 19 MLs/hr to add calories and keep her growing.
Respiratory rates and settings remain the same. She is scheduled for two sprints today, with one going on at the time of writing. So far, she’s doing well with these exercises. They are expected to continue throughout the week.

Mom will post more pics of Olivia this afternoon.

Daily Rounds

36 Days Old: Daily Update

May 29, 2016 9 Comments

Good morning.

Medical updates

Respiratory. Today we’re starting a “sprinting” regiment. Her rate support will be completely shutoff for 30 minutes so that she has to breathe completely on her own. She’ll still get pressure support as she’s breathing through a little air tube. She’ll do this 2x a day to gain strength and demonstrate whether she can be off the vent. Here’s a picture of her sprinting!
Feeds. Olivia continues to leave large residuals that flirt with the limit (36 MLs). We’re adjusting her Reglan dosage up slightly, corresponding to her weight increases.

Olivia will get to see her Guerrero Grandparents and Aunt today before they head back home. She dressed in her bees for the occasions.

Daily Rounds

35 Days Old: Daily Update

May 28, 2016 7 Comments

Olivia had a quiet night, and snoozed the night away cuddling with her lovie from cousin Wyatt. Today she’ll get a visit from the Guerrero clan: Grandma and Grandpa G and Aunt Lauren!

Medical updates:

Slightly rougher morning on the respiratory front. Nothing critical, but Olivia has been fussy for a few hours, harder to settle, and doesn’t seem to like any position she’s been put into. In addition, there were more desats (minor ones) and our nurse was getting a lot more secretions from her tube than normal. The team has ordered an x-ray to see if there’s any signs of collapse or atelectasis. That will most likely be taken within an hour or so.
Feeds remain the same, at 18MLs per hour, for at least another day. Residuals are still within bounds, but have been slightly higher (two checks were in the 20s), so we’ll give her a bit more time at this amount to ensure she continues to digest appropriate amounts.