29 Days Old: Daily Update

Good morning and happy Sunday!

Olivia had a perfect night. Her good friend, Sydney, the overnight nurse, upgraded her crib and Olivia is now in new digs. Mom thinks her bedding is a little mismatched today, but that’s nothing that can’t be fixed. The new crib makes the room feel larger, and less medical, and because the sides come fully down we can get in real close for cuddles and hand holding.

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No major updates on the medical side. Key items are:

  • She’ll reach her target of 15 MLs/hour of breastmilk today at noon. They will discontinue her TPN, the food she received via IV, tonight. Her new goal is 18 MLs/hr. A 1/2 tablespoon of Enfamil per kg will be added to her feeds to up her caloric intake, as her weight plateaued slightly over the last three measurements. No cause for concern with this action, as it’s standard protocol and a benefit of constant NICU surveillance. Changes in weight might also be attributed to change in measurement tools (they are using a different scale with the new bed), or extra breathing causing her to burn more calories.
  • Respiratory remains the same on the support side. They’re going to move her dosage of Albuterol and the saline nebulizer to every 12 hours, from Q4.

The Prior clan departed this morning for Maine, stopping by to tour the newly renovated grounds of Hotel Olivia before their departure.
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Reminder: tomorrow is Mom’s 30th birthday!

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28 Days Old: Daily Update

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Good morning. Olivia had a great night. She was dressed overnight by her nursing friend, Danielle, in a hospital onesie. While cute as could be, Mom has other plans for her attire.

Dad came in early for another father-daughter session. Olivia bemoaned the idea of weekend schoolwork, so we put the books aside and she slept peacefully in my arms. She has been fantastic these past three days with movement in and out of her bed. Previously such an action would have sent her off in a downward spiral of desat events and the like, leaving her exhausted and frustrated from the attempt. It’s a treat to get so much holding time with her.

Medically, the following updates came in today:

  • Bilirubin is down to 9.7 from 10.0. She’s single digit now, and Dad is proud.
  • Respiratory stays the same today. Her progress is great and they’re going to let her rest without making more tweaks.
  • Feeds are up to 11 ML/hr and growing 1 ML q. 8. She’s still projected to be at her goal of 15 by Sunday.

Arbiters from both sides met again this morning on Hotel Olivia construction topics. An accord was reached to monitor her temperature changes today whilst fully clothed. If all goes well, the crib should be in tomorrow. Olivia had no comment to the resolution.

The Prior clan will drop in again today to play with Olivia. Here’s a picture from their arrival yesterday.

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Yesterday a friend of Dad from Oak Hill delivered 2 cases of Olivia monogrammed golf balls. Check ’em out!

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Finally, on the administrative side, a few fans reported issues with signing up for email notifications. Dad’s has found and fixed the sign-up page, so it’s working now. If you’ve subscribed and are not getting notifications, please subscribe again or leave a comment here (or text me) and I’ll add you manually.

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27 Days Old: Daily Update

Olivia had a great night and morning. Dad came in early this morning to find her awake. With the help of nursing, we coordinated an “in Dad’s arms” study session during which we reviewed and discussed the literary elements of Dr. Seuss. Olivia giggled as Dad battled through tongue twisters. After boring of Dad’s struggles, Olivia slept soundly until Mom arrived to relieve her. Play time!

Rounds reported positive news from overnight. Today, Olivia will:

  • Go down on pressure support, after dealing well with the continuous drops in breathing support. She continues to show great respiratory progress (unless we move her around; she doesn’t like that too much).
  • Go up on feeding. They are bumping up her increases to +1 ML every 8 hours (Q8), from her prior 12-hour regiment. This is great news. She’s looking better with all of Momma’s milk. At noon, she’ll be at 9 MLs/hr.

She is excited to see Grandpa and Nana today. We haven’t yet told Olivia that her Aunt Abbey is coming too! The clan is expected to arrive from Maine around 3 PM.

In other news, Hotel Olivia construction was delayed after nursing expressed concerns about her temperature control. Mom and Dad are pushing them back to the table for negotiations, as they along with OT, suspect her temperature drops are related to her environment. In a proactive move, Mom’s put these cute little mitts on Olivia and wrapped her up snuggly. Lawyers from both sides are expected to meet later today to discuss. Neither side expressed concerns with the delay, as spokesmen from both camps cited they “want what’s in Olivia’s best interest”.

Checkout my gloves!

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26 Days Old: Daily Update

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Olivia had a peaceful night.

Round updates:

  • Direct bilirubin values came down a smidge since Tuesday and are now at a flat 10.0. We’re hoping for single digits on Saturday’s read. Ursodiol starts today.
  • The low hematocrit noticed on Tuesday is up slightly to 27, which is good. Retic rate is still high at 4.9, so her marrow is producing red blood cells to counteract.
  • Feeds bumped up overnight to 6 MLs/hr and 7 at noon. Olivia is now on “protocol,” and her feeds will increase 1 ML every 12 hours until she’s at 15 MLs/hr. She should reach that level by Sunday.
  • Her vent settings are going down again to 20/bpm, as they continue to ready her to come off. If all goes well, they will make an attempt again on Monday or Tuesday.

In other news, Hotel Olivia is slated for crib upgrades. Guest feedback indicated a lack of stimulation on the grounds. Given the average age of occupants has increased to almost one month, management, at the recommendation of OT, decided to make some investments in this area. Constructed is expected to start this week.

Olivia was excited to learn that Grampa Prior and Nana will be coming to visit her tomorrow. She asked if she could go diaper shopping for the occasion. Unfortunately, nursing said, “no, not yet”. Olivia grimaced, soiled a fresh set of pampers, and promptly went back to dreaming about elephants.

Otherwise, Mom will do some errands today and get out of the hospital. Daddy-daughter time includes a few poolside books and some warm milk.

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25 Days Old: Daily Update

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Olivia had a good night and morning.

The team reduced her breathing support overnight by dropping the rate to 25/bpm. They felt comfortable with this change because she had a positive blood gas result. We suspect Dr. P, a long-time and frequent advocate of Olivia’s positive progression, was behind this decision.

Overnight Olivia’s feeds progressed to 4/MLs hour.  They increased again to 5 MLs at noon, and will increase to 6 MLs tonight, barring any issues.

Today is our first “family meeting” where we’ll meet with Olivia’s primary team, social work (Carla) and palliative care. Agenda-wise, we’re told not to expect much in the way of news, given the amount of questions we ask on a regular basis. This meeting is a common step for NICU families and provides an opportunity for us to discuss Olivia’s status and longer-term options away from the bedside. We’ll meet formally in a conference room, and Mom and Dad are bringing cookies from downstairs.

Side hospital note: they upgraded her continuous feeds equipment last night to the ABC Syringe Infusion Pump Model 4100. Apparently, the NICU is replacing her older model, the Baxter AS50, across the board. This one has a touch more prominence (annoyance?) in the room as it hangs on an IV pole which blocks a side of her bed. No medical/care significance here. Dad’s just interested.

Two minor updates I didn’t cover yesterday:

  1. First, we informed nursing leadership that it is ‘OK’ to have orientees assigned to Olivia again. Two weeks back, after a tough week, we made the request for only experienced nurses.  U of R is a teaching hospital, so it is common to get someone in training, but always along with someone experienced. It can be perceived as a benefit, as we get two people caring for her, instead of one. Mom and I enjoy the openness of a teaching environment, asking every question that crosses our minds. And, every morning in rounds we hear updates from residents and fellows, all of whom are Doctors, formally, but still in training. In rounds, it is not uncommon for us to hear them corrected by their superiors.  However, in those first fragile weeks, we couldn’t tolerate that from nursing. They provide some much direct care to Olivia that we found ourselves biting our nails every time we had a trainee or a young nurse in the room. Olivia and her parents are in a much better state now. We feel a lot more comfortable communicating our care goals to nursing, and we feel they are listening and achieving them.
  2. Second, she is now in what’s called an “open crib”. No, nothing changed in her bed. They just turned off her automatic heater. A “closed crib” (Dad made that term up) refers to a system where a wired thermometer under her armpit controls a heater that keeps her body at a constant temperature. Now, they are letting her body regulate that. #onelesswire.

Finally, we’re moving medical-related updates to once a day. On big days, we’ll do more. Don’t be shy about using the comments area to ask questions.  You’ll likely see more editorial content from us (yes, I know, Stories from Mom are better).  Dad might make a few functional improvements to make it easier to see updates and questions.

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24 Days Old: Evening Update

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Olivia had a busy day. She got visits from GI (our friend, Megan), cardiovascular (Dr. Porter and his fellow), OT (Meg), and neuromuscular (Dr. C).

Dr C. and team came by to let us know we’ve been approved for the specific genetic testing she ordered. We signed off on the paperwork and they’ll draw the blood tonight. They’re using MNG Labs. She’s going to call the lab at the end of the week for a timeline.

The cardiovascular team came by to explain her VSD. We learned that it’s in the muscular region of her lower chambers. This means she could out grow it as muscle in her heart forms. The team was extremely thorough in their presentation to us. Apparently, Mom and Dad have a reputation for asking a lot of tough questions.

Mom got some swaddle time in with Ms. Olivia to wrap up the day.

Finally, in other news, Dad is back on vacation from BN. I’ll probably write a little more on this later, but, in short, I want to spend time with Mom and Olivia while we figure things out. Work was extremely accommodating.

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23 Days Old: Daily Update

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Today’s activity focused on three areas: (1) newborn fashion, (2) GI/feeds, and (3) cardiology.

(1) Mom doesn’t like headbands, but our nurse found this handmade piece (courtesy of the volunteer “Cuddlers”) in Olivia’s drawer and thought it matched her blanket so nicely that she’d give it a go. Mom still doesn’t like headbands, but thinks Olivia looks too cute to take it off. For now at least.

(2) The team removed Olivia’s NG tube today, as she hasn’t been tolerating feeds very well. It was replaced with an ND tube, which bypasses her stomach and delivers the feeds directly to the first part of the small intestine. She’ll continue receiving the drip of breastmilk through this tube, and we’ll see if it helps get her gut moving. The indicators as to whether or not this method is “working” better than the NG tube include: seeing more regular (and unassisted) stools, and avoiding both distention and spit up.

If the ND tube does work, the team would look to slowly increase feeds via this method, and begin to decrease her TPN. Eventually they would then try to transition more feeds through an NG tube (to reengage her stomach) and ween down the ND tube.

If the ND tube does not work (as indicated by distention, or spit up), the GI team has a number of subsequent tests to introduce that could better help us better understand if her GI track is built as expected, and where any malfunction may be occurring.

(3) We learned during this morning’s rounds that the nurses and doctors recently discovered a heart murmur. The murmur is inconsistent, but has been noticed on multiple occasions by different providers. An echocardiograph was ordered and performed this afternoon. We did have a fetal echo done around 22 weeks during pregnancy, and it looked normal, but we were reminded that it’s not always easy to see everything during fetal exams.

Other medical details (for those of you taking notes): daily Dornase has been discontinued, ventilator remains at  a rate of 35, 19 over 6 ,with a pressure support of 10, and labs will be drawn tomorrow as part of her new Tuesday, Thursday, Saturday schedule, at which point we’ll get an updated blood gas, Phenobarbitol level, and bilirubin level.

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22 Days Old: Morning Update

Good morning and happy three weeks, Olivia!

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She had a quiet night in the care of one her loving night nurses. No major updates to her plan today.

Ms. Olivia remains on her 2 ML/hr regiment for feeds. She had ongoing and variable sized residuals last night. The core team is sticking to yesterday‘s recommendation: observe any effects of Reglan until Tuesday and then consider alternatives.  She did stool on her own (sort of) last night, something Mom is excited about.

No changes to respiratory and other systems today.

Mom and Dad plan to hold this afternoon. Aunt Lauren and Uncle Chris will stop by today before heading back home.

 

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21 Days Old: Evening Update

Olivia had a great Saturday.

She had visits from her Guerrero grandparents, Aunt Lauren and Uncle Chris. She did wonderfully after adjusting to her lower ventilator settings. And the highlight of the day came in the afternoon when she spent a couple of hours in the arms of mom and dad. Today we held her bundled up instead of skin to skin, which let us get much more face time!

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Feeds continued at 2MLs an hour (despite ongoing residuals), we had one stool (with the help of a suppository), and today was the first day of receiving only one dose of Dornase.

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