Olivia’s Final Medical Story

July 11, 2016 7 Comments

Yesterday we shared the passing of our beloved daughter. Today, we want to share a little bit more behind her story.

On Tuesday, Olivia went for a muscle biopsy. Results from our recent advanced genetic screening found a “variant of unknown significance” in her TTN gene, which is responsible for the Titin protein in our bodies. Mutations on this gene could have easily explained her condition, since the Titin protein plays such an important role in how our muscles function. However, since the science of DNA is still developing and this specific mutation was never before seen, a biopsy was supposed to provide the physical evidence needed to confirm that mutation was the cause of her condition.

Instead, what we found was Olivia suffered from a rare form of Spinal Muscular Atrophy (SMA). SMA is actually a fairly common genetic diagnosis, but Olivia had what is called the “non-5q” variety. Non-5q refers to the fact that it’s caused by mutations outside of the common SMA-causing genes (chromosome 5, section q). This variety is very rare, hence the inability to diagnose it clinically or with our previous advanced testing. However, once they got a look at her muscle tissue, the diagnosis came in quickly.

The Wikipedia page for SMA is useful, but it doesn’t describe the non-5q branch at all. Her core team gave us this paper in Neurology which provided a helpful summary (going to work on getting a complete copy for here). In short, its prognosis is fatal and the life expectancy of infant onset is even poorer than SMA type 1.

We never confirmed if the TTN gene mutation also impacted Olivia. Her tissue sample was too atrophied by SMA to be conclusive. Also, systematically speaking, nerve firing causes muscle movement, so whether her muscles were healthy or unhealthy (from a TTN mutation) without SMA, didn’t matter much for the prognosis, because SMA affects the nerves leading from the spine to muscles. Our Titin explorations were looking at issues with the proteins forming the muscles directly, but in this case, they weren’t getting the full signals from the brain due to SMA.

Despite all this, we still have one test pending. While we know she had SMA and we know it’s non-5q, we don’t yet know what gene caused it and how/if it was inherited. To help us figure this out and also help our family planning all three of us had blood drawn on Friday for a whole exome sequence. Results will take a few months to be processed. We hope this data will also help future cases of her disease be diagnosed faster too.

In the end, while devastated with her prognosis, we were relieved to have a concrete diagnosis. Her case riddled so many medical professionals and labs that we worried we might be forever stuck with unanswered questions. As Dr. P said to us, her final gift to us was to let us know what she needed. She did that and she’s still a pink zebra.

Daily Rounds

78 Days Old: Gone to Heaven

July 10, 2016 30 Comments

This afternoon we said goodbye to our sweet, sweet Olivia, as she began her next big adventure: a journey to heaven.

Her passing was peaceful, comfortable, and cozy, as she spent her last minutes cuddled in our arms. Yesterday she was held all day by family, and her final night and morning were spent playing, holding, and visiting with her favorite nurses.

We’ll have more on funeral services, photos, stories from mom and dad etc. later.

Stories from Dad

Two Months: OT Report Card

June 25, 2016 4 Comments

It’s that time again. Below is Olivia’s 2-month report card from Occupational Therapy (see here for the one month). It’s thoroughly detailed, as always with Meg.

The short version (from Dad) is that she’s doing well on the sensory side and has hit most of the age appropriate, cognitive milestones. Overall, she’s still pretty weak and doesn’t move her arms and legs against gravity (due to muscle weakness). She is showing some signs of progression, albeit slowly.

Occupational Therapy Report

Name: Olivia Guerrero Age: 60 days

Developmental Stage		Appropriate Age Range	Current Status
Gross motor
Fetal position (flexed and midline)		0 to 2 months	met
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 has increased strength in her arms and legs and has typical movement patterns. She is more consistently able to use her arms and legs age appropriately. She is tolerating sitting up with support and makes some effort to hold her head up. She brings her hands together in sidelying and is active in supine. She settles down for a nap when in prone.
Fine Motor
Grasps finger		0 to 4 months	Met
Brings hands to mouth		0 to 4 months	met
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	Progressing towards
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 bring her hands together and to her face. Her hands are more open than closed but she can make a fist. Elbow flexion is easier than extension and wrist extension is easier than flexion. Her arm movements are smooth and coordinated but weak. She rarely looks uncomfortable with ROM anymore; however, she does resist some range of motion at times.
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	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	Progressing towards
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. This now involves kicking in addition to crying. She has a variety of facial expressions that she uses to let us know how she feels. She definitely knows her mom and dad and responds differently to them than to others in the room.
Language
Cooing	1 to 4 months		Progressing towards
Laugh	3 to 6 months		Progressing towards
Turns to voice	2 to 4 months		met
Razzing	4 to 8 months		Not yet met
Language Notes: Olivia’s language is all non-verbal at this stage; however, even with the tube in place she is starting to do mouth and facial movements associated with pre-cooing.

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	met
may follow vertical movements better than horizontal		1 to 3 months	met
visual searching begins		2 to 4 months	met
Regards hands		2 to 5 months	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	Progressing towards
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 will turn her eyes to find a new voice or sound. She is tolerant of touch and 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. She continues to have a gag, a consistent suck and consistent lip closure. She does not always like oral stimulation but she can do it. She has found that she likes to suck/chew her fingers. She is now able to help bring secretions forward in her mouth though they still pool at times.
Summary: Olivia is a sweet baby who is working on a variety of age appropriate skills. 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 about the same she can now move her fingers, wrist, elbow and some shoulder movements against gravity (when she wants to). Her lower body has gained strength; she has increased strength for flexion and extension her of her knees and flexion of her hips. Her visual and social/emotional skills are on target. Her oral and gross motor skills are limited not only by her neuromuscular condition and by her need for a her ET tube/vent and sensitivity to tube placement.

6/24 – Daily Report

Occupational Therapy
6/24/16 Girl Guerrero was seen today for ROM, positioning, and oral stim
Current Status: no new medical changes
Birth Gestational Age: 38w2d
Corrected gestational age: 46w 6d
Age (d): 60 days
Hospital: LOS: 60 days

COGNITIVE/BEHAVIORAL RESPONSES:
Level of alertness: Alert and responsive, age appropriate interaction
State: Active alert, Quiet alert, drowsy
Able to Achieve Quiet Alert State: Yes
Responds to stimuli: Age appropriate
Signs of stress: Cry, fidget
Able to self sooth: yes

Area of body	RIGHT- AROM	RIGHT PROM	LEFT AROM	LEFT PROM
Overall UE posture	Arms at sides, elbows partially flexed, wrists extended, hands loosely fisted. Fingers active
Shoulder	1/4 extension and abduction and flexion	full range	1/4 extension and abduction and flexion	full range
elbow	Full range flexion, 3/4 range extension	full range extension and full range flexion	Full range flexion, 3/4 range extension	full range extension and full range flexion
wrist	Extension full and flexion to neutral	Full extension and near full flexion	Extension full and flexion to neutral	Full extension and near full flexion
MCP	full flexion/extension except the 5th digit	full flexion/extension except the 5th digit	full flexion/extension except the 5th digit	full flexion/extension except the 5th digit
IP	full flexion/extension except the 5th digit. 5th digit remains contracted	full flexion/extension except the 5th digit 5th digit remains contracted	full flexion/extension except the 5th digit. 5th digit remains contracted	full flexion/extension except the 5th digit 5th digit remains contracted
thumb	1/2 flexion and abduction	Full range	1/2 flexion and abduction	Full range
Overall LE posture	Hips abducted and externally rotated, knees flexed, ankles neutral or dorsiflexed, toes neutral
hips	full range flexion, 1/2 range abduction/adduction, 1/4 range extension	full range flexion, 1/2 range extension, full abduction and full adduction	full range flexion, 1/2 range abduction/adduction, 1/4 range extension	full range flexion, 1/2 range extension, full abduction and full adduction,
knees	full range flexion, 1/4 range extension	full flexion, 1/2 range extension	full range flexion, 1/4 range extension	full flexion, Near full range extension,
ankles	3/4 range	3/4 range plantar flexion	3/4 range,	3/4 range plantar flexion
toes	full range	full range	full range	full range

STRENGTH
Olivia appears to have more strength and activity in her distal muscles (fingers and wrist) compared to proximal muscles (shoulder/hip). Her right arm seems stronger than her left and her left leg seems stronger and more active than her right.

	Right Against gravity	Right Gravity eliminated	Left Against gravity	Left Gravity eliminated
Shoulder	None	Partial flexion and extension abduction and adduction	None	Partial flexion and extension abduction and adduction
Elbow	Flexing and partial extension. Stronger than left	Extending	Flexing and partial extension	Extending
Wrist	Full extension and partial flexion	Full extension and partial flexion	Full extension and some flexion	Full extension and partial flexion
Fingers	Full extension and flexion	Full extension and flexion	Full extension and flexion	Full extension and flexion
Thumb	Partial flexion and extension and adduction	More adduction and abduction	Partial flexion and extension and adduction	More adduction and abduction
Hip	Full flexion, partial abduction, partial adduction, partial extension	Full flexion, half adduction, half abduction and some extension	Full flexion, partial abduction, partial adduction, partial extension. Stronger than right	Full flexion, half adduction, half abduction and nearly full extension
Knee	Full extension and flexion	Full extension and flexion	Full extension and flexion	Full extension and flexion
Ankle	Full extension and flexion	Full extension and flexion	Full extension and flexion	Full extension and flexion
Toes	Full extension and flexion	Full extension and flexion	Full extension and flexion	Full extension and flexion

FINE MOTOR
Hands: Loosely fisted and grasp/flex is improving, wiggles fingers often. Strong wrist extension and resists flexion.
Arms: Bilateral upper extremities at sides when in supine. When in sidelying, she brings hands to mouth. Resists writer removing hands from mouth or placing them there if she does not want it.
Grasp Pattern: Able to hold a ring for ~30-90 seconds depending on positioning

SENSORY
Eyes: Open throughout the session but will close them when she is tired. They move together and are responsive to light, movement, and visual stimuli
Visual: Demonstrated focus and looking between stimuli. Briefly tracks vertical and horizontal, high contrast toy and looks between faces
Auditory: Responses to sounds in room. Looks to voices
Tactile: Responsive to ROM and repositioning.

GROSS MOTOR
Supine with Zflo support for midline play
Sat up with support. Attempted to contact neck muscles. low tolerance for sitting up (only ~5-8 minutes)

ORAL MOTOR
Secretion management: Mild pooling of secretion in mouth, no pursing lips or pushing secretions forwards when upright
Lips: Mostly closed at rest and with oral stim. Mouth active. No smile
Jaw: closed or relaxed when supine, hangs open in sitting and fasciculation
Tongue: Active in mouth, cupping of tongue with sucking,
Palate: High arch
Suck: Biting and sustained active sucking on own fingers – no brady desat with oral stim today.
Rooting: No rooting noted today – may be outgrowing reflex
Swallow: Observed intermittently during sucking
Gag: Stronger and more consistent

Intervention/treatment: PROM of LE, positional play, sensory stimuli and oral stim, parent education and support
Assessment: Infant has slowly progressing motor skills and low physical activity level for gestational age.

Plan

Frequency: 4-5 times per week
Discharge Recommendations: Early Intervention, carbed, adaptive seating options, HOB and crib adaptations for trach/vent
Multidisciplinary Communication: RN

Stories from Dad

Olivia & Dad’s Favorite Song

June 24, 2016 8 Comments

Olivia has longer fingers than most kids (which is considered to be part of her condition). This often leads nursing to call her a future pianist. When she’s awake, she entertains herself by energetically wiggling them.

Since birth, Olivia and I (this is Dad writing) have been studying the ontology of classical music in our alone time. Although the so-called “Mozart effect” has been debunked, it has been fun to jog down memory lane. My parents enriched a lot of my early life with music. We went to the New York Philharmonic frequently as kids, and I picked up the trumpet for a brief stint (sadly, putting it down for “social” reasons).

One morning, bored with Baby Mozart, I began searching for “modern classical” and came across Yanni. My family had his “Live at the Acropolis” album when I was growing up and I must have listened to it a gazillion times.

I played it for Olivia and she loved it.

Over time I’ve found our favorite song to be “Until the Last Moment” and she and I listen to it daily. It can bring about a smile or a snooze from Olivia, and often a tear from Dad. I can’t easily describe how it makes me feel other than to say it’s beautiful, like her.

Yanni himself describes the song as meaning:

Life is precious. All of life. One must try to take in as much of it as much of it as possible.

This meaning really hits home for me. Back in May, when attempting to return back to work, I described my reasoning as to why I was coming back to work to a good friend and a close mentor of mine. I said “we don’t know how long she can make it, and if she doesn’t, it’s going to be really hard on us and I’ll want to be there”. Thankfully, my friend pointed out the flaw in that logic – spending time with her while she’s with us is more important than mourning her after. He shared the following passage:

And the Lord struck the child that Uriah’s wife bore to David, and it became ill.David therefore pleaded with God for the child, and David fasted and went in and lay all night on the ground.So the elders of his house arose and went to him, to raise him up from the ground. But he would not, nor did he eat food with them. Then on the seventh day it came to pass that the child died. And the servants of David were afraid to tell him that the child was dead. For they said, “Indeed, while the child was alive, we spoke to him, and he would not heed our voice. How can we tell him that the child is dead? He may do some harm!”

When David saw that his servants were whispering, David perceived that the child was dead. Therefore David said to his servants, “Is the child dead?”

And they said, “He is dead.”

So David arose from the ground, washed and anointed himself, and changed his clothes; and he went into the house of the Lord and worshiped. Then he went to his own house; and when he requested, they set food before him, and he ate. Then his servants said to him, “What is this that you have done? You fasted and wept for the child while he was alive, but when the child died, you arose and ate food.”

And he said, “While the child was alive, I fasted and wept; for I said, ‘Who can tell whether the Lord will be gracious to me, that the child may live?’

Samuel 12:15-22

That frame of mind has dominated my thinking ever since, I’ve focused more on spending time with her here and now, and we’ve really enjoyed our time together.

So join us and have a listen, if you so please. When we listen, we follow along to the piano part (which Yanni plays himself). Olivia will sometimes mimic the pianos dynamics (make sure to have your volume up parts gentle) with her little hands. It’s the cutest.

Daily Rounds

56 Days Old: Daily Update

June 18, 2016 4 Comments

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.*

Daily Rounds

48 Days Old: Daily Update

June 10, 2016 3 Comments

If it wasn’t obvious enough to us before, it’s official: we have a night owl on our hands.

Throughout Olivia’s first month or so, we realized her “witching hours” coincided nicely with the nurses’ shift change, between 6-9PM. She’d regularly be fussy and hard to settle, and require a lot of attention during these hours, only to then be wide awake throughout the late evening hours. But last night was impressive. Olivia pulled her first all nighter! Most people don’t experience their first all nighter until you know, maybe a middle school sleep over, or finals week in college. But Olivia walks to her own beat (or whatever that expression is) and decided 1.5 months old was the right time to test the waters. Her night nurse reported that she was wide awake and playful from 8PM – 6AM! Playful in Olivia terms usually means content, wide eyed, looking around, and wiggling her fingers like crazy, as if she’s either concocting something mischievous or rehearsing a complex Yanni piece.

Olivia woke up this morning for her 8AM change and chest PT session, and to say hi to Dad, but it’s no surprise that she is now sound asleep.

Medical updates:

Nutrition – gaining weight and building muscle is a huge goal for Olivia right now. Her latest weight was slightly down from her previous weight, and while she did gain week over week this week, it’s not as much as her team would like to see. We’re increasing her “protein powder” to 3 teaspoons today.
Respiratory – we are continuing to decrease her ventilator settings with her pre-extubation settings as the goal. These are what we now consider her “baseline” settings, as we know she can tolerate them quite well. Overnight she was weaned to 18/6 for pressure, 25 for rate, and 21 for O2, and after rounds this morning we’re decreasing her rate further to 15. The team also decided to discontinue her regular blood gases. Instead, we’ll relay on the end tidal machine to monitor her CO2 levels, and wean her ventilator settings based on those readings. The end tidal is less invasive, and means less pricks and labs for Olivia.

Dad is spending a few hours in the office today, so Mom’s on duty at the hospital for now, and Grandpa Prior and Nana arrive this afternoon for a visit!

Daily Rounds

46 Days Old: Daily Update

June 8, 2016 5 Comments

Good morning. Olivia made is through the night on CPAP. She had a few touchy moments but they cleared up and she slept relatively well for most of the night.

This morning she is doing OK. Getting her comfortable is the hardest part. She agitates quickly and recovers slowly. She’s been on higher O2 (40-50%) today, as we try to find positions to settle her out. She’s still on high rate and pressure support (remember, she is on the ventilator, it’s just blowing into her nose vs directly into her lungs). We suspect her lungs aren’t fully expanded (recruited). Fixing that is going to take some time and strength.

She is managing her secretions well and appears to be swallowing. This is an area we thought she wouldn’t do well in.

The plan for today is to continue to support her by any means necessary. Her current struggles are not enough to intubate again. The next couple of days could look a lot like today – where she slowly recovers, but with a lot of support. They’ll intermittently take blood gases to test her CO2 and x-rays to assess her lung recruitment.

Her feeds returned to the pre-extubation rate of 20 MLs/hr. She was doing well with them overnight, but she had some larger residuals this AM (46 MLs).

Daily Rounds

45 Days Old: Extubation Trial #2

June 7, 2016 10 Comments

This morning, the team removed Olivia’s ET tube, a process referred to as extubation.

The last time extubation was trialled, Olivia was only 5 days old and we knew so much less about her capabilities and challenges. This time, we are far more hopeful that she’ll have the strength and endurance necessary to remain unintubated, although only time will tell.

This morning’s procedure was fairly simple and only took a few minutes. Her tube was replaced with a RAM Cannula, which provides her both pressure support and rate via her nose. Since this goes into her nostrils (vs. directly into her trachea or lungs), the support is not as direct as she’s used to. Instead of all going into her lungs, now some escapes through her mouth, and some also makes its way into her stomach. She’s likely to be on higher O2 settings (30-40%) for awhile, as she gets used to this whole life without a tube thing, and her team may continue to play with her settings for pressure support. Ultimately, we’d hope to remove the RAM, however, for a few days we’re giving her all the support she needs. Dr. M has ordered that only he (or the night attending, Dr. R) can give the authority to re-intubate her. He wants to try everything possible to give her a shot at success.

Timeline:

7:00 AM – Our nurse, arrives and turns off her feeds.
8:00 AM – Mom and Dad arrive. Olivia is awake. Mom combs her hair.
8:30 AM – Respiratory team & the docs begin preparations.
8:35 AM – The tube is out! We can hear her trying to cry.
8:38 AM – Dr. M gives the OK, the procedure is over.
11:05 AM – NG tube back in.
12:00 PM – Blood gas drawn
12:10 PM – Support increase (rate and pressure).
12:15 PM – x-ray reveals collapsed right lung.
12:50 PM – Restarted feeds
2:15 PM – Blood gas drawn

The pictures above are from immediately after the tube was removed. She became quite agitated and struggled for 3+ hours after extubation, but we were told this is somewhat expected, and that we should be prepared to see that type of response for a few days – she’s had the tube in for 45 days, after all.

A blood gas was drawn at 12pm (3 hours after extubation), and unfortunately it was very high (82). The team was concerned about her lungs, and an x-ray revealed a partial collapse of her right lung. Pressure support and rate were both increased significantly to help her re-recruit that lung.

Following the setting adjustments and some repositioning, Olivia settled down and slept much more comfortably for the afternoon. While we haven’t seen a follow up x-ray, a second blood gas at 2:15 pm was much better (64) and just at the upper bound of her normal range.

From here on out, we wait and see. Mom and Dad are excited but nervous. The day was rather stressful (much moreso than anticipated) and it’s likely to stay that way for awhile as we see how she responds to this major transition.

In the meantime, we look forward to when she’s awake and mad, as we can hear the faintest hints of her crying, which, for now, we love.

Daily Rounds

44 Days Old: Daily Update

June 6, 2016 7 Comments

Good morning. Olivia had a peaceful night. She completed a 3.5-hour sprint this morning.

Today, the pulmonary specialist team will [re]consult on Olivia’s case for ventilation extubation. We have a full week of positive sprinting data for them to consider, so Mom and Dad are optimistic. She has a known hurdle with her capabilities to manage secretions and protect her airway. Doing these tasks requires swallowing, coughing, and using muscle groups we can’t readily assess (due to ventilation). Given her overall muscular picture, these areas are likely weakened. We’ve observed some affirmative signs strength in OT. We don’t expect a decision from Pulmonary today – but would be delighted with one. They’ll stop by today around 3:30 PM.

Medical updates:

Feeds. Her volume (20 MLs/HR) remains the same. She’s increasing to 2 teaspoons of pregestimil (from 1.5).
Respiratory. She’s going up to 4 hours today. This may change based on her pulmonary consult.
Labs. Results came in early, as they combined the blood draw slated for tomorrow. Direct bilirubin is down to 3.9. Other results were normal, including her blood gas.

Post-Yogging Snooze

Daily Rounds

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.

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