Olivia Grace – Page 4 – Our sweet girl’s journey with congenital Spinal Muscular Atrophy (SMA)

50 & 51 Days Old: Daily Update

June 13, 2016 8 Comments

Quiet days continue in room 15.

Nana and Grandpa Prior visited yesterday before heading back to Maine, and Luke and I spent the day and evening with Olivia, per our usual routine.

Most often now a days Luke will arrive first thing in the morning – usually before 8AM and spend the early hours one on one with Olivia. This gives me some quiet time to either sleep in (which I’m quite good at), putz around the house, or run errands. When I head in to the hospital mid morning, we’ll overlap for a few hours, have lunch, and hang out with Olivia together as a family before Luke takes his turn to get outside. Depending on whether it’s the week or weekend, he’ll either go into the office, head home to take care of things like lawn work and house projects, or get outside for a round to relax. It took us over a month before we decided to try this routine, and while we don’t take shifts every day, it’s brought a little bit of balance to our lives, and provides us each some alone time.

Today Olivia has both PT and OT sessions planned, and will likely restart a sprinting regiment this afternoon.

PT and OT continue to work on range of motion and strength, with new fun activities like sitting up! Pictures below show Olivia practicing this new position with mom and dad over the weekend. She doesn’t always “actively participate” – sometimes she likes to relax and let us do all of the work – but on occasion we can feel the smallest bit of engagement from her neck muscles. Steps in the right direction.

Sprinting was discussed this morning as a possibility for this afternoon, depending on today’s weight. The team wanted to wait for today’s weight to see if Olivia was up again from her last weight. Turns out she is up 30 grams from yesterday (now 3030 grams) so we suspect the sprinting will be cleared. While small, the incremental gains day over day are appropriate signs of growth, and hopefully enough to get her back on the growth chart. She was born very small, so we’d be happy to see her back around the 3-5% mark, but ultimately the team would like to see her catch up more and land around the 20-25% range.

Stories from Mom

Quiet Days

June 12, 2016 9 Comments

On days like today, when we have so few updates to share, my initial emotional response is relief.

Relief that today may be quiet. That Olivia may sleep the day away, peacefully. Or choose to be awake, taking in and absorbing her surroundings in stride. That she may escape the pricks and prods of needles, and the stress of new trials. Just for one more day.

But my relief is often met (and challenged) by a sense of anxiety.

Keep in mind that Luke’s and my existence prior to Olivia’s birth was almost entirely centered around our sense of selves… which to date had been mostly defined by modern and perhaps superficial measures: how we had grown, how far we had come, how hard we had worked, what we were good at… what we had achieved, and why we had achieved them. Our strengths, our capabilities, our work ethic led us to our high school accomplishments, college successes, our careers.

In our professional worlds, the faster things move the better. Everything is urgent. Being “so busy” is the norm. Efficiency is a key to success. One’s goal is almost always completion… of something, anything, whatever dozen things you are currently working on at any given time.

I suppose it’s in our nature to keep going. To work harder. To figure things out and “succeed”.

So the idea that there are days here, now, in the hospital with Olivia, where we aren’t actively trying, doing, testing, changing… anything… seems in a way wrong. It feels impossible not to question. It’s this that bubbles up as anxiety, meeting and immediately challenging my sense of relief on quiet days like today.

Days when the blinds are drawn, the door is kept closed, and we hush our little girl to sleep for a day of “rest and recovery”.

Daily Rounds

49 Days Old: Daily Update

June 11, 2016 3 Comments

We expect today to be a nice, lazy day for the little miss. Thankfully she decided not to pull another all nighter, and based on this morning’s report she appears to have actually slept well overnight.

This morning in rounds we met our new attending doctor, who will serve as Olivia’s “primary” doctor for the next two weeks. We’ll refer to him from here on as Dr. D., who we’ve heard is “the big cheese”. That was Dr. M’s phrase. Officially, Dr. D. is the current division chief of the NICU, so we’re excited to have him on Olivia’s case.

Medically there are no changes or events planned for the day. Olivia’s been weaned down to her pre-extubation ventilator settings, and feeds are continuing at 20 MLs / hour with 3 teaspons of powder and 6 MLs of liquid protein. It sounds like the main goal is to get this girl growing. That means letting her rest, encouraging deep sleep, working with OT on muscle strength, and eating like its going out of business.

And you know what comes with eating like its going out of business? Baby blowouts. As evidence, notice the outfit change from this morning:

49daysold-morning01 — Outfit number 1 for the morning

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!

Stories from Mom

Toy Time

June 9, 2016 4 Comments

After receiving an official break from occupational therapy two days in a row due to her trial extubation, Olivia was excited to hang out with her good friend Meg this afternoon.

And boy, did Meg deliver! Today Olivia got set up with a toy piano at the end of her bed, and some “bracelets” as mom will refer to them. The piano will hopefully make her more curious about voluntarily extending her legs, and meet her kicks with resistance to help build strength. The textured bracelets will encourage her to move her hands and wrists more, give her something to practice grasping, and also provide her with another textile experience.

Daily Rounds

47 Days Old: Extubation Trial #2

June 9, 2016 7 Comments

I wish we had a more positive update to share this morning. Yesterday around 3:30 PM, Olivia was reintubated. Since being extubated Tuesday morning, she had a number of good stretches and it was such a thrill for us both to see more of her face, to hear faint hints of a cry, and to be able to move her more freely. But ultimately – despite increased assistance via pressure support, rate, and oxygen levels, Olivia was unable to keep her lungs expanded and working well enough to remain without the assistance of the breathing tube. The whole 31-hour ordeal was extremely taxing on her. She experienced two collapsed lungs (first the right on Tuesday, then the left on Wednesday), it appears some alveoli may have burst, and her CO2 levels were sky high putting her back into an acidotic state. Because we, along with her team, wanted to try to give her a real shot at success, we pushed her through multiple attempts to recover on her own before making the decision that it was no longer in her best interest to remain extubated.

46daysold-01-extubated — Before reintubation

Similar to last time, the path to recovery from this trial will likely be a few days. In the hours after being reintubated, her CO2 levels remained high. However overnight she seems to have settled down and made herself comfy again. She’s bounced back considerably at this point but has a way to go.

46daysold-02-reintubated — Sleeping after reintubation.

We were both so excited to get the ok from pulmonology for another trial extubation, that we hadn’t realized how difficult the time would be on us as parents. Every minute she was without support from the breathing tube was stressful. Seeing her heart rate high, seeing her little head and body covered in sweats, seeing her visibly struggle was heartbreaking. There were times we questioned whether we had made the wrong decision to trial extubation again. Once as I watched her cry for a moment, I even turned to Luke and asked if what we were doing was cruel. It was so hard, but in our more rational moments we knew it was the right time, and it was right to give her time to try and work it out on her own. Prior to extubation she had shown us all of the right signs that she was ready to try, while extubated she showed us all of the right signs that she was trying as hard as she could, and eventually, she showed us this just wasn’t the right time.

To make sure we end on a high note, here’s a more positive moment, taken on Tuesday afternoon while she was comfortable and enjoying her new getup! Note: the “breathing sound” is the RAM machine, not her actual breaths.

Throughout the day today we’ll work to wean her ventilator settings (pressure and rate) back to a level that’s closer to where she was on Monday. We’ll also meet with Dr. M who is her attending through the end of the week to discuss the trial, get his perspective on what we learned, and understand where we go next. But in the meantime, today and the next few days will be focused on resting and recovery. The little girl is pooped, as are mom and dad.

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

Stories from Mom

Wise Men Say

June 5, 2016 11 Comments

I follow a couple of NICU parents online, and one of the dads recently created an incredibly sweet, short video clip to the tune of Can’t Help Falling In Love. Well I fell in love with their family’s video, and stole all of his creative juices. I literally created the same thing, except with clips of Olivia and scenes from our room.

I hope you enjoy watching this as much as I do, and perhaps I’ll start sharing more like it.

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