Olivia Grace – Page 9 – Our sweet girl’s journey with congenital Spinal Muscular Atrophy (SMA)

18 Days Old: Evening Update

May 11, 2016 No Comments

Olivia had a very quiet day. We had a new nurse during the day who was wonderfully attentive and affectionate with our little girl. She even suggested a couple of new toys to keep Olivia entertained during her awake times. The “fish tank” plays a random assortment of songs, and kept Olivia absolutely fascinated for over 30 minutes.

A child life specialist stopped by as well this afternoon, and left behind a few more toys that we’ll introduce another day. Her goal is to ensure we’re keeping some semblance of “normalcy” around Olivia amidst all of the medicine. Her toys include a mirror to position above Olivia so she can check herself out, a tactile learning tool (a blanket made of different textures to put in Olivia’s hands), and some jingly toys (but not a full mobile) to put overhead.

On the medicinal front: respiratory rate went back up to 45, no changes to feeds or medicines. We did not see Dr. C as we had hoped, so we’ll wait and see if she visits tomorrow.

Daily Rounds

18 Days Old: Morning Update

May 11, 2016 No Comments

Prior to this morning’s rounds, we had two visits.

Dr. C’s (neuromuscular) team members came in to assess Olivia. This seems to be the normal process when working with any consulting specialist: a team of residents and/or med students will visit with a patient and complete a brief clinical assessment before the specialist comes in. Unfortunately Olivia was completely conked out while the team assessed her. Hopefully she’ll be more awake this afternoon when Dr. C arrives.

Dr. F (genetics) came by to check in on Olivia and speak to us. He is waiting for Dr. C to complete her initial assessment. The two of them will then consult with one another, and confirm next steps in terms of testing. He did share that he thinks the recommendation will be to move forward with a full gene sequencing. While this type of test doesn’t guarantee a diagnosis, he said it’s the best option we have at this point.

The plan for today, from morning rounds:

Direct bilirubin level is up slightly from yesterday; it is now 12. Regardless, we plan to keep the Phenobarbital dose at 3 as mentioned yesterday to see if she begins to look and act less sedated.

Feeds didn’t go well last night. High residuals continued throughout the night, so we’ve decreased the total volume of breastmilk to 1 ML per hour.

Respiratory remains at 22 over 7 with pressure support of 10. A good gas overnight (or early this morning) allowed them to turn rate down to 40. She is handling these numbers well, and has started occasionally breathing over the vent again, so we’ll leave her where she is today.

Daily Rounds

17 Days Old: Evening Rounds

May 10, 2016 No Comments

Updates from the evening. And, yes, you’re back to your original recorder. Mom’s doing such a fantastic job that her fingers needed the night off. Overall, Olivia had a peaceful day.

Respiratory wise, she had a handful of minor “desat” events. Fortunately, none were as severe as prior incidents. Her ventilator settings stayed the same today, varying only O2 levels corresponding to the events.

Her feeds stayed on 2 MLs per hour, after giving back 8 MLs at noon and 10 MLs at 4 PM. We can’t seem to get over that hump. Tomorrow will likely include an order for medications to improve “motility” (her digestive system working), since she hasn’t made progress in this area. Today, when discussing the possible action of medication, they suggested that she may just need something to help jumpstart her digestive track.

A midday team meeting yielded a decision to cut her phenobarbital intake in half. This was based off continued progress in the war on bilirubin and input from OT (Meg) that Olivia isn’t as alert as she was prior to starting medication. (Phenobarbital has sedative properties.) This is good news.

Otherwise, Olivia had a visit from Mike Garsin this evening. She opened her eyes for a few seconds to say a brief hello. While Mike visited Mom spent some time trying to groom Olivia’s mane, but finally succumbed to the fact that our girl has a mean mullet.

Our “meal train” tonight included a hearty lentil soup, courtesy of the Eagle family.

Daily Rounds

17 Days Old: Morning Rounds

May 10, 2016 No Comments

Updates on Olivia:

Luke and I stayed at the hospital pretty late last night, as Olivia continued to have desat events that worried us.

During a more severe event, the nurse and a respiratory tech thought it sounded like both of her lungs were “very tight” (collapsing), so they called in Dr. P who is now doing night shifts. She spent some time with Olivia, and found a new position that didn’t “cut off her trach” as much. In addition to a new position, they increased her pressure support to 7. Since the pressure support change last night, Olivia’s been doing well. Nervous mom gave the NICU a late night call to check in and was relieved to hear she had been doing well since we left, “sat-ing” near 100% and sleeping.

In this morning’s rounds an xray from 4AM showed that Olivia likes this new pressure. Both of her lungs looked open, one slightly less than the other, but still a great picture to see. Because she’s responding well to the new setting, the respiratory plan for today is to keep things where they are and give her some time.

Direct bilirubin is down to 11 from 14 yesterday. The continued decrease is good news, but we still have quite a ways to get down to the goal of 2. Despite the steady decrease, the GI team would still like to move forward with the HIDA scan, however Olivia’s primary team is not ordering it just yet. The scan requires that she be transported multiple times in a single day, and given her fragile respiratory state the team does not want to risk having any events during transport.

Feedings will continue throughout the day. If she has less and less residuals at each change today, they will increase to 3MLs an hour. If she shows high residuals, they will consider a motility medicine. Still no stool, so she’ll be getting a suppository at the 24 hour mark since her last one.

In other news:

The meal train delivery last night was amazing. Delicious pasta dinner with a spicy bolognese sauce, cheese, and a loaf of bread. Plus loads of goodies. More coffee, creamer, fruit, breakfast drinks, muffins, candy, wine… and more. Thank you to the Fox ladies!

I was extra tired this morning so I slept in a bit and Luke headed into the hospital solo at our normal hour. Olivia was wide awake and waiting! Despite my best efforts to wash and comb her hair yesterday afternoon, it looks like she’s got quite a case of bedhead today…

Daily Rounds

16 Days Old: Evening Update

May 9, 2016 No Comments

Not a ton of updates from today.

Respiratory:

Olivia had a handful of quick desats today, similar to what we learned occurred last night. These moments are scary for mom and dad, but the nurses handle it well. On two occasions she required extra support from the green bag, but all other instances were handled with a brief increase in oxygen or a good suction.
Despite a tougher day, Olivia has been doing great since around 3PM. She had a great blood gas that resulted in her respiratory rate decreasing from 50 to 45, and she’s been resting comfortably on room air for a few hours.

Feeding:

Continuous feeds continued all day, despite small residuals and no poop since 9PM last night. The team has kept her at 2MLs per hour. We hope she tolerates the feeds well tonight, so they will increase her total volume of breastmilk tomorrow.

In other news:

Luke began transitioning back to work today. He worked from the hospital so that he was never too far away, and took calls from the lounges, lobbies, or library.
Our friends from around Pittsford started a “meal train” today. This is an incredibly kind gesture – a different family will be preparing and delivering a dinner for us each night of the week. One less thing on Luke’s and my mind, and a constant reminder that we are surrounded by wonderful family and friends. One small hiccup in today’s delivery: we forgot to turn off the house alarm, which resulted in a “burglary” status, a number of missed calls from ADT, and a visit from the local police department. Whoops!

Daily Rounds

16 Days Old: Morning Rounds

May 9, 2016 No Comments

Olivia had an okay night. She had a few “desat” episodes where her oxygen saturation levels briefly dropped into the 60s. In each case, she recovered quickly after an increase in oxygen. She also had some residuals from her feeding, but not enough to raise major concern, and feedings will continue as usual. And in good news: she pooped! The night nurse administered a suppository around 6PM yesterday, so that likely helped move things along. At this point, she’ll receive a suppository again if she does not stool on her own after 24 hours.

This morning we arrived to her numbers looking great, and her breathing room air. She looks cozy on her tummy, and has her favorite nurse looking after her for the day. Meg from OT will come by at either 12 noon or 4PM for range of motion exercises.

Other updates from morning rounds:

Her direct bilirubin came down. This is the 2nd day in a row we’ve seen slightly decreased numbers, which is great. This morning it was at 13 down from 14 yesterday. Doctors assume the decrease is a combination of her Phenobarbital and the introduction of breastmilk.
Her weight is up slightly to 5 lb 11 oz.
Feeds will remain the same today: 2 MLs every hour. If she continues to have residuals and trouble pooping on her own we may talk about additional medicines later this week.
Olivia’s primary team is going to consult with the GI team today to discuss whether we should order a HIDA scan this week.
Still planning for the pediatric neuromuscular specialist to visit and assess Olivia this week. We’re hoping that takes place Wednesday.

Stories from Mom

A Promise To Keep You Safe

May 9, 2016 No Comments

A sweet friend recently sent us a gift after learning of Olivia’s story. Inside the beautifully wrapped box was a CD, and a note sharing that JJ Heller’s music has been distributed to healing parents and children in NICUs across the country. Similar to On The Night You Were Born – it took me a couple of days before I built up the courage to listen.

Finally, one morning when Luke and I decided to drive to the hospital separately I unwrapped the CD, put it in my car, and let the songs roll. I cried. Obviously. But after a week or so of listening I can now usually make it through almost all of the songs without tearing up. Catch me on a hard day and you may still see me crying in my car.

But I love it. I love every song. I keep this CD on repeat. I even purchased the songs on my phone and played a little tune or two for Olivia one afternoon when she was awake, and I’d like to do more of that moving forward. Dad would prefer we play Mozart, Vivaldi, or the like, but Mom’s going to keep the sappy songs coming.

Here’s one of my favorites. I hope you enjoy it as much as I do.

Quiet your heart
It’s just a dream
Go back to sleep
I’ll be right here
I’ll stay awake

As long as you need me
To slay all the dragons
And keep out the monsters
I’m watching over you

My love is a light
Driving away
All of your fear
So don’t be afraid
Remember I made
A promise to keep you safe

You’ll have your own
Battles to fight
When you are older

When you find yourself frozen inside
Always remember
When you feel alone
Facing the giants
And you don’t know what to do

My love is a light
Driving away
All of your fear
So don’t be afraid
Remember I made
A promise to keep you safe

Daily Rounds

15 Days Old: Evening Update

May 8, 2016 No Comments

Update from the day. Pretty good day.

Olivia got a ton of time with mom, including 2 hours of skin-to-skin.
She had visit from the Guerrero Grandparents (they came in last night).
Feeds continued throughout the day. We had a setback in the late afternoon when she gave back 14 MLs of a mixture of milk and other fluids. It was examined and then discarded, but feeding still continued. She did receive a suppository when they continued feeds to see if that helps move things along.

No major update on other areas. Tomorrow we are both in the hospital, but dad starts the transition back to work (from the hospital library).

Daily Rounds

15 Days Old: Morning Rounds

May 8, 2016 No Comments

Good morning and happy Mother’s Day! Overnight Olivia was great.

She continued feeding, leaving no residuals.
Initial results from this morning indicate that her direct bilirubin level is down! It’s still high, at 14.2, but had been continuously increasing, a sign that it wasn’t being processed. We await rounds for further and formal interpretation.

Following up from rounds. No major updates to her plan for today.

She will stay at 2 MLs/hr today on her feeds and increase tomorrow.
As previously reported, bilirubin came down and that’s a good thing. They hope it continues to fall.
Respiratory is relatively the same. They will attempt to ween ventilator settings today, however slowly.
Momma should get some holding time today around 2 PM.

Daily Rounds

14 Days Old: Evening Update

May 7, 2016 No Comments

Olivia gave us a big scare today. After being transferred into Mom’s arms for holding, she stopped breathing and her heart rate plummeted, signaling a “Code Blue”. It was a scary minute as doctors and nurses crashed down on her room responding to the order to resuscitate. After what felt like an eternity (but was only 2 minutes) Olivia bounced back. Both Whitney and I saw her life flash before our eyes.

So, what happened? The doctors refer to what happened as “clamping down,” which means both of her lungs suddenly collapsed and blocked the end of the tube. Apparently, it is not uncommon for kids on the respirator (but they usually bounce back faster). They suspect that when shifting positions, a large amount of fluid moved in her lungs causing this reaction.

The event happened around 4:30 PM and lasted approximately two minutes. Olivia is recovered and resting now. She is on increased pressure and O2 support. We are waiting for further updates.

Otherwise, she continued on her feeds today despite no stool. Attending and fellows have decided to give her another day before trying a suppository. In the meantime, she is progressing on 2 MLs of breastmilk per hour.

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