One Month: OT Report Card

Olivia works with an occupational therapist, Meg, to help with her contractures and other muscular issues. She is fantastic and has been working with Olivia since the beginning (day of life 2).

Today, she dropped off a 30-day report card summarizing OG’s progress. It’s impressive. Take a read (note: this is not optimized for reading on your phone).

 

1-Month Report Card

Name: __Olivia Guerrero_                                                                Age: _30 days

Developmental Stage Appropriate Age Range Current Status
Gross motor
Fetal position (flexed and midline) 0 to 2 months Legs met, arms progressing
Involuntary/reflexive muscle movements 0 to 2 months met
In prone head up only 0 to 3 months Not yet met
Kicks feet when on back 0 to 3 months met
Head steady at shoulder 1 to 4 months Not yet met
Will weight bear on legs 1 to 4 months Not yet met
In prone head up to chest 1 to 4 months Not yet met
In prone head up to forearms 2 to 5 months Not yet met
In prone head up with extended arms 3 to 6 months Not yet met
Rolling front to back 3 to 6 months Not yet met
Bounce in weight bearing 3 to 6 months Not yet met
Rolling back to front 4 to 7 months Not yet met
Sitting with support 4 to 7 months Not yet met
May rock back and forth on hands and knees 4 to 7 months Not yet met
Sitting independently 5 to 9 months Not yet met
Gross Motor Notes: Olivia is working on increasing her tolerance for play in a variety of positions. Her endurance is improving and allows her to engage in more play. She is showing increasing strength in her arms and legs and has typical movement patterns. She is trying to use her arms and legs age appropriately but sometimes gravity gets in the way
Fine Motor
Grasps finger 0 to 4 months Met
Brings hands to mouth 0 to 4 months Progressing towards
Hands intermittently open/closed 0 to 4 months Met
Plays with feet and brings feet to mouth when on back 3 to 6 months Not yet met
Holds toy actively 3 to 6 months Not yet met
Clasp and unclasp hands in finger play 3 to 6 months Progressing towards
Bats at objects 2 to 5 months Not yet met
Holds objects at midline 3 to 6 months Not yet met
Bilateral Reach 3 to 6 months Not yet met
Transfers objects 4 to 7 months Not yet met
Fine Motor Notes: Olivia is using her hands more and will grasp anything that is near her hands. Her arm movements are smooth and coordinated but weak. She is showing increasing strength in her arms. She rarely looks uncomfortable with ROM anymore; however, she is starting to resist some range of motion.
Cognitive/Emotional
Makes needs known 0 to 3 months met
Sooths when engaged with 1 to 3 months met
Social smile 2 to 3 months Not yet met
Cry when upset to seek comfort 2 to 6 months met
Responds to familiar caregivers 2 to 6 months met
Show excitement by waving arms & legs 3 to 6 months Not yet met
Likes to look at and be near people who are special and significant in their lives 3 to 6 months Not yet met
Smile at herself in the mirror 3 to 6 months Not yet met
Pay attention to her own name 3 to 6 months Not yet met
Resists end of game 4 to 6 months Not yet met
Social/Emotional Notes: Olivia is aware of the world around her. She uses her non-verbal communication to let us know what she likes and does not like. She definitely knows her mom and dad and responds differently to them than to others in the room
Language
Cooing 1 to 4 months Not yet met
Laugh 3 to 6 months Not yet met
Turns to voice 2 to 4 months Not yet met
Razzing 4 to 8 months Not yet met
Language Notes: Olivia’s language is all non-verbal at this stage. She communicates her likes and dislikes with crying, facial expressions and movement. Once she gets her voice back, she will certainly have a lot to say
Sensory
Stares vaguely at surroundings 0 to 2 months met
can follow a slowly moving target intermittently to midline 0 to 2 months met
learning how to shift their gaze from one object to another without having to move their head 1 to 4 months met
Can focus on objects up to 6′ away 2 to 4 months Not yet met
may follow vertical movements better than horizontal 1 to 3 months met
visual searching begins 2 to 4 months Progressing towards
Regards hands 2 to 5 months Not yet met
Can follow a visual target the size of a finger puppet past midline, and can track horizontally, vertically, and in a circle 3 to 5 months Not yet met
visually aware of the environment 4 to 6 months Not yet met
can shift gaze from near to far easily 4 to 6 months Not yet met
Convergence is developing 4 to 6 months Not yet met
Eye-hand coordination (reach) is achieved 4 to 6 months Not yet met
Sensory Notes: Olivia is visually responsive to her environment. She looks between people talking over her bed and watches people move around the room. She is tolerant of touch and a little hypersensitive of movement.
Feeding
Suckle pattern on bottle 8-10 sucks 0 to 1 months Not yet met
Lip closure on nipple/pacifier 0 to 2 months Met
Able to maintain suction on pacifier without external support 1-2 months Not yet met
Feedings via nipple 2 to 5 months Not yet met
Tongue orientated to midline 2 to 5 months Not yet met
Feeding Notes: Olivia’s oral skills are limited by her respiratory support and secretion management; however, she does have a more consistent gag, a consistent suck and consistent lip closure. She enjoys oral stimulation even if it causes her to have increased secretions.
Summary: Olivia is a sweet baby who is working on a variety of age appropriate skills and has shown significant improvement over the last month. Her contractures are non-existent in her upper body with her passive range of motion being within normal limits. Her contractures in her lower body are improved as well though she continues have some decreased range of motion in her knees and hips. Her upper body strength is increasing and she can now move her fingers, wrist, elbow and some shoulder movements against gravity (when she wants to). Her lower body is also gaining strength; she has normal strength for flexion of her knees and hips and is starting to show active extension. Her visual and social/emotional skills are on target and her oral and gross motor skills are limited not only by her neuromuscular condition but more by her need for a ventilator.

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31 Days Old: Feeding Update

This morning the enteral feeding system alarmed, indicating that Olivia’s ND (nasoduodenal) tube was occluded (blocked). We had seen this before, just a few days ago. At the time, the team believed the tube had moved and was up against the lining of her intestine. Moving Olivia into a new position fixed things.

Upon hearing the alarm this morning, we tried moving Olivia into mom’s arms to see if the movement and new position fixed the block. That didn’t do it. Next, the nurse switched the feeding system to a Kangaroo ePump, but that didn’t do the trick either. They tried to flush the line next, but it was backed up, and there was a minor spill of breastmilk all over Olivia’s sheets. Suspecting that it was either tube positioning or the tube itself, an x-ray was ordered to examine the position. The position was OK.

Since other options were exhausted, the team believed the occlusion must be a result of the tube itself being blocked by the feeds. Olivia was taken off  TPN yesterday so her dosage of ursodiol is now being mixed into her milk, along with multivitamins and pregestimil. This new mixture is thicker and can be a bit sticky, so it is not uncommon for it to back up feeding tubes.

The typical course of action would be to replace the tube, but Dr. P made an executive decision to use this opportunity to try feeding through her stomach again. This meant removing the blocked ND tube and inserting an NG tube. Using an NG tube had failed previously (Olivia was not digesting the feeds in her stomach), but we had planned to give it a try again shortly after she reached full feeds. We were supposed to start a trial run with the NG tube later this week, but instead, we’re now going full force. 100% of her feeds are going into her stomach via the NG tube, and 0% directly to her intestine. If it fails like last time, they will insert another ND tube and give her more time receiving feeds directly to the intestine.

We’re excited. We hope she can tolerate this. They are checking residuals at 8 PM. At 18 MLs/hr, the current feeding rate, less than a 30 MLs residual in her stomach will be considered OK to continue feeding via NG.

In other news, the PICC line was removed at 4:00 PM.

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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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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.

29daysold-newcrib

29daysold-sheets

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.
29daysold-priors

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.

27daysold-priorvisit

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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Olivia’s Updates – Making Following Easier

Mom and I are working to make things a little easier for Olivia’s fans. Our first goal is to make it less of a task to know when we’ve added new content. We’ve heard that some of you are actively “refreshing” the site to look for updates and that just can’t be fun.

You can now subscribe to Olivia’s story to receive email notifications whenever we publish a new post. You can register (and unsubscribe) by going to olivia.lukeandwhitney.com/notifications. Also, whenever you comment on a post, you’ll be given the option to subscribe as well. Both do the same thing.

We’re working on a few more improvements, too. So, feel free to suggest.

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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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