Celebrating Firsts

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.

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37 Days Old: Daily Update

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.

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36 Days Old: Daily Update

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!36daysold-firstsprint
  • 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.

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35 Days Old: Daily Update

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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.
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34 Days Old: Daily Update

Olivia had a good night, and is getting some holding time with Mom and Dad this morning.

She’s on a “lab holiday” today, meaning her usual tests/exams will be put on hold until tomorrow to give her a break. She’ll be getting her work up again in the early hours tomorrow following her Tuesday, Thursday, & Saturday schedule.

Medical updates:

  • Feeds are going strong. She had small residuals most of the night (3-10), which means she’s processing all of her feeds well. We’re at 18 MLs/hr with 1.5 teaspoons of pregestimil/100 MLs. Note: I previously reported pregestimil as per kg, which is how they size other drugs; it’s actually per 100 MLs of fluid. Whoops!
  • Her supplements will be switched to vitamin D only for the weekend, as she’s been spitting up the other vitamins. They will reassess on Monday.
  • Respiratory was stable overnight. No planned changes for today.

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33 Days Old: Daily Update

Good morning. Here are today’s medical updates:

  • Feeds went up to 16 MLs/hr overnight. She had a great residual this morning, 3 MLs at 8 AM. We were in the 20s & 30s yesterday. She will increase to 17 MLs/hr today and go to 18 tonight. Olivia has lost weight in the switch from ND, so the supplements of pregestimil remain.
  • Direct Bilirubin is back up to 9.7 from 8.6 on Tuesday. No immediate concern, as the reading fits within the (slope of her) trend line.
  • Respiratory will remain the same today. Her blood gas was higher overnight and she’s had several desat events. This area started acting up towards the end of the day yesterday, despite a strong day on Tuesday.

Dr. C & team stopped by today to round. They were impressed with her OT performance. They expect results from genetics tests in mid-June.

Below are some photos from Mom’s morning holding session. We brought in a boppy today.

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32 Days Old: Daily Update

Good morning. Olivia had a great night. We found her changed into new gear overnight, after pooping all over her outfit from yesterday, so today it’s hot air balloons.

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Overnight Olivia did great with her new NG tube (see our update from yesterday on the ND->NG change). She had residuals (undigested milk in her stomach)) of 22, 17, 15, & 24 MLs, measured on the four-hour mark. She’s currently on 15 ML/hr regiment, so she’s digested over 200 MLs via her stomach already. Note: it dropped from 18 when switching to NG feeding, as 18 MLs was a lot for her little stomach to handle at once from a cold start.

In all the fun transitioning from ND->NG yesterday, she missed a bit of feeding and lost 40 grams overnight. They are increasing her pregestimil to 1 & 1/2 teaspoons per kg (up from 1/2) to give her more calories. She will remain at 15 MLs/hr rate during the day. It will increase 1 ML/hr every 12 hours starting at 1 AM EST.

Although she had one of her best blood gases this morning, there are no changes to her ventilator settings today. Her main goal is progressing on NG feeding, so no distractions necessary.

She’s been in Mom and Dad’s arms since 8 AM.

 

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31 Days Old: Daily Update

Good morning and happy 1-month, Olivia Grace! Mom will share photos from the celebration in a post later today. Olivia ordered up a cake for the royal occasion. She requested to be in the care of one of her favorite nurses today as well.

Tuesday’s medical updates:

  • Direct bilirubin number is down to 8.6. It’s great to see the continuous decline.
  • Feeds are at full force of 18 MLs/hr. Her PICC line scheduled to be removed today at around noon. This means no more IVs.
  • Breathing rate will be pushed down to 15 breaths/min, as they continue to ween her rates.
  • Hematocrit is up and red blood cells are close to normal ranges. Her Retic was up to 9.4%, so her body responded well and recovered on its own.

In hospital news, we had a Nurture Smart Mobile added to her crib yesterday. This should help with stimulation during her increased awake hours.

Mom got an early morning hold in, kicking off today’s festivities.
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30 Days Old: Daily Update

Good morning and Happy 30th Birthday to Mom!

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Olivia had a great night. This morning we walked into her awake, listening to baby Mozart, and with a present for Mom.

No major changes medically.

  • Feeds continue to increase. She’s at 17 ML/hr with a goal of 18, which we’ll hit today. TPN has stopped.
  • Respiratory remains the same. They may tweak settings tomorrow.
  • Lab results for bilirubin, hematocrit, etc. are expected tomorrow.

Some photos from the morning.

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