34 Days Old: Daily Update

May 27, 2016 4 Comments

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.

Daily Rounds

33 Days Old: Daily Update

May 26, 2016 6 Comments

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.

Blog Updates

Commenting – Put a Face To Your Name

May 25, 2016 6 Comments

If you’re an avid Olivia follower, you’ve probably noticed the faceless profile picture that appears next to your comments. Ever wondered how to create your own profile picture? Interested in finally putting a face to your name? Keep reading to learn how. The process is relatively easy, and while it is by no means required to comment, it will help brighten up our stories a bit!

Step 1: Create a Gravatar account

Visit the Gravatar sign up page here.
Enter your preferred email address, your desired username, and a password. Click the blue “Sign Up” button once all three fields are complete.
Check your email for an “activation email” from Gravatar. Activate your account by following the instructions in the email.
Once you activate your account, you’ll be asked to sign in. Sign in using your email (or username) and password.

Step 2: Upload a picture to your Gravatar account

Add an image to your Gravatar account by clicking one of the following blue links, visible after you sign in to Gravatar for the first time.

Step 3: Continue commenting

Next time you comment on one of Olivia’s stories, simply type in your name and email address, as you have been. Make sure you use the same email address that you used to sign up for Gravatar.
Now, when you comment, the website will automatically recognize you as a Gravatar user, and display your profile picture next to your comments.

Let us know, or comment below if you have any questions.

Daily Rounds

32 Days Old: Daily Update

May 25, 2016 5 Comments

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.

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.

Stories from Dad

One Month: OT Report Card

May 24, 2016 4 Comments

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.

Daily Rounds

31 Days Old: Feeding Update

May 24, 2016 5 Comments

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.

Stories from Mom

Protected: One Month Old

May 24, 2016 7 Comments

Daily Rounds

31 Days Old: Daily Update

May 24, 2016 6 Comments

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.

Daily Rounds

30 Days Old: Daily Update

May 23, 2016 8 Comments

Good morning and Happy 30th Birthday to Mom!

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.

Daily Rounds

29 Days Old: Daily Update

May 22, 2016 5 Comments

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.

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.

Reminder: tomorrow is Mom’s 30th birthday!