72 Days Old: A Baptism, A Long Walk, and the 4th of July

Some days in the NICU are quiet days, and others are so full of activity and events and fun that it makes it hard to summarize in a single update to friends and family. Today was one of those days.

First, and most importantly, this morning we were joined by Father Mike from our church and Olivia was baptized. It was a short, but special ceremony, with just Luke, myself and our nurse Inna as a witness. We didn’t pick out a traditional baptism gown, but we did get Olivia ready in her best dress!

She looked like a angel. A perfect, little, sleepy angel.

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After the morning’s event, Olivia snuck in a snooze and a hold with Dad, before venturing outside for… get this… the 3rd day in a row! Late last week word began to get out that we were really itching for Olivia to see a bit of the world beyond her NICU room. The staff knew how much we wanted to take Olivia outside, and have graciously allowed us to do so every day this weekend. It takes extra equipment and extra staff, but with everyone on board it’s been such a gift.

We have some of the funniest pictures (and videos) of Olivia’s outdoor adventures, so we’ll share another post with our favorites soon. For now, here are some from today’s trip.


Olivia had even more visitors this afternoon. Mike and Jen met us outside and joined us for a stroll around the garden before a mini-meltdown made us decide to head back inside.

Jen came bearing gifts, which I’m going to keep as a surprise until the time is right to share them with you all. I’ll give you a hint: both items will help Olivia check off items from her bucket list! And by her bucket list, I mean, all of the things we want to make sure she experiences, despite being in the NICU.

Last but not least, since today is a holiday (and Aunt Bey’s birthday!), Olivia was subjected to another one of Mom’s holiday photo shoots. Per usual, she slept through the activity.

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Olivia Meets a Flower

In recent weeks, Luke and I have been having more and more conversations about Olivia’s fate. What will her life look like? How long will she be with us? Will she come home?

The possibility that she may pass away before ever leaving the NICU – no matter how unbearably sad that is for us to imagine – is real. And no matter how many times I’ve been encouraged not to get ahead of myself… not to think about outcomes yet… to stay in the here and now… I can’t. I don’t.

Ultimately, I go there. Usually multiple times a day.

I think about things like how she may never feel the fresh air, or feel the sun. I think about how she might never enter our home, never spend a night at home with Mom and Dad. She may never wear a Halloween costume, or see Santa. I think about all the friends and family members she may never meet. The places she won’t be able to visit with us.

Some things I think about are silly, like Halloween costumes and Santa. Some are sad, like meeting family members, and visiting places that are special to us.

Others are just downright innocent: the warmth of the sun, the feeling of sand beneath your toes at the beach, the way the air starts to smell differently in the fall.

And while not every innocent thing can be bottled up and brought to Olivia, some certainly can. So I’ve decided to do just that. Even if it means sneaking things in and breaking NICU rules. Dr. V – if you’re reading this, no fair telling on us!






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68 Days Old: Daily Update

We’ve had a few nice, uneventful (in the good sense), and fun days around here. We survived Dad’s first business trip since Olivia was born (although we did miss him terribly), Nana and Grampa Prior visited, and Olivia and I had lots of girl time. She’s now spending multiple hours at a time out of her crib, either in her bouncy seat or playing on her boppy lounger in our arms, she’s tolerating PT and OT sessions really well, and her alertness and overall cognitive capabilities seem to be changing daily. All of which make for good, good days. The kind that make us momentarily forget about the bad days, forget about where we are and why, and forget about what lies ahead.

Speaking of which, her muscle biopsy has been scheduled for next Tuesday, July 5th. Yesterday we had been told it was going to be mid July, but this morning we got word she’s been scheduled in for next week! This is awesome news, as we already feel like we’ve been waiting for a long time, and otherwise we would have been waiting another long and likely intolerable two weeks.

So between now and Tuesday we don’t expect many changes to her usual regiment or daily plans. Just days of hanging out, holding, playing, and hopefully long naps!

Probably pretty sick and tired of these afternoon photo shoots!
Probably pretty sick and tired of these afternoon photo shoots!
Not too sure about this mohawk business...
Not too sure about this mohawk business…
Thursday morning quiet time with Mom... getting ready for nap time.
Thursday morning quiet time with Mom… getting ready for nap time.
Who better to swing by a children's hospital window, but superman himself!
Who better to swing by a children’s hospital window, but superman himself!
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66 Days Old: Daily Update

Olivia seems a bit more like her usual self today. Full of ‘tude and facial expressions that tell us exactly what she’s thinking. Yesterday’s lab results came back normal (meaning she likely does not have an infection), but an x-ray did show quite a bit of atelectasis in the right lung. We increased her ventilator settings overnight, and as of this morning’s x-ray the lung looks to be fully recruited again. So, the couple of tough days we experienced Sunday and Monday were likely due to her lungs struggling… just because of their usual things, rather than being an indication of an infection. Good news she doesn’t have an infection, bad news that we can’t blame her lung challenges on something else other than her myopothy…

Other things: her Tuesday labs looked good. The liver enzymes that have been elevated for the past month or so finally began trending down as of this week, and her bilirubin level is basically normal, for the first time ever! Her total bilirubin was 1.2, with a direct bilirubin level of 0.9.

We were visited by Dr. Pegoli today. He’s the pediatric surgeon that will do Olivia’s muscle biopsy. It was nice to see him again and have an opportunity to ask him a few questions about the procedure. His answers and demeanor once again reinforced that this is a very minor procedure (relatively speaking), and that it’s a very common procedure in his world. We still don’t have it scheduled, but hopefully we’ll get a date confirmed shortly.


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65 Days Old: Daily Update

We had a great weekend with Olivia. Friday was full of new activities, and Saturday was a nice long day with Mom and Dad. We had lots of girl time, which Mom soaked up. Sunday started off on a good note as well. We visited for a couple of hours in the early morning, before stepping out to celebrate our goddaughter’s baptism. Hi Emma!

Sunday evening Olivia started having more respiratory events, which continued throughout the day today. Last time her events started acting up like this, we later realized she had an infection… so the team was concerned that she may be getting sick again.

We ordered an x-ray, loads of blood work, and a urine sample this morning, but all initial reads look normal. Since she’s continued to struggle a bit today, Dr. P is recommending we increase her ventilator support overnight to let her rest and ensure she has fully recruited both lungs.

Not a ton to share otherwise. We’re still waiting for her biopsy to be scheduled, and in the meantime are hoping she starts to feel better soon. Watching your little one fuss and cry and struggle all day is no fun!


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Two Months Old

Guess who’s due for a celebration today? Olivia Grace is, that’s who.

Now 21″ long and just over 7lbs, today Olivia celebrates her 2 month birthday. Technically, in the medical world, she’s “on day 61 of life” but by our standards she’s 62 days old and today’s her monthly birth “day”. To celebrate, she spent the morning with Mom and Dad, dressed in her birthday best: an outfit with green animal print and glittery gold hearts.

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In the afternoon – after a snooze in Mom’s arms – we got even more crazy, first with a little play time in a “crib gym”, and later was her first time in a bouncy seat.

First up: crib gym time. The voice in the video is our occupational therapist Meg, who is helping Olivia interact with the toy by propping up her arm. This helps “remove gravity” for Olivia, which makes it easier for to move her extremities on her own.


Afterwards, when it came time for a field trip to the bouncy seat, we positioned the seat on the floor along the windows, so little miss Olivia could catch a glimpse of the great outdoors!  As I sat with her, I couldn’t help but think about how she’s 2 months old now, and never even been outside. She’s never really seen the sun or laid on the lawn or felt a rain drop. It made me think of a JJ Heller song that I’ve grown to love (lyric below) and I sure hope Olivia loved staring out the window as much as we loved giving her the opportunity to do so. Little does she know just how big the world outside room 15 really is!

“It’s a big world, baby, big enough to dream, you’re not too small to do great things”.

It’s worth noting that taking Olivia in and out of her crib is quite a production and always runs at the risk of sending her into a bit of a tizzy, so we’re very thankful for the nurses and therapists who are willing to do it for the sake of these great “normal” child development opportunities.



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61 Days Old: Genetic Test Results

First a little update, then a big one.

To start, the little lady packed on the pounds over night, and is now officially a 7 pounder. Her overnight weight was 3,230g (7.12lbs) which is just about 2 lbs up from her birth weight. She’s still way, way low on the growth chart, but any growth is good growth for us.

For the big update: earlier this week MNG Labs completed the Next-Generation sequencing that we ordered in May. We met with Olivia’s core team, along with the pediatric neuromuscular specialists on Tuesday to discuss the results.

Unfortunately, despite sequencing nearly 200 genes that are most commonly associated with known neuromuscular disorders, the panel came back “indeterminate”. In other words: the test did not provide us with an official diagnosis, and we are still unable to associate a name… a specific disorder… something well known and understood… to Olivia’s condition.

The panel did however identify mutations on two of the analyzed genes.

  1. One mutation is being disregarded as benign, as it’s on a gene that isn’t responsible for anything that fits within Olivia’s clinical picture.
  2. The other mutation is of much more interest to us and her team, because this specific gene is understood to be closely related to an important part of muscle function (Olivia’s primary issue).

This mutation is incredibly rare, in fact never seen before, so it is considered a “variant of unknown significance”. But… based on: the gene’s role in muscle function, the type of mutation (“likely pathogenic”), and Olivia’s clinical picture… it’s seemingly significant.

In order to more confidently confirm that Olivia’s myopothy is in fact a result of this gene mutation, she’ll undergo a muscle biopsy. A muscle biopsy is a relatively small procedure in the realm of pediatric surgeries, but it is still a surgery. Under a microscope, muscles affected by various myopathies have fairly distinct appearances, and depending on whether something atypical is observed in her muscle sample, Olivia’s team may be able to officially connect the dots between this mutation and how it’s impacting her muscles.

If they are able to connect the dots, Dr. C (the pediatric neuromuscular specialist we’ve been working with here at University of Rochester) will have the data points she needs to begin consulting with other specialists in the field with more of an expertise on this particular gene. One doctor in particular works out of NIH, and has dedicated his career to studying this one, specific gene!

Over the next couple of weeks as Olivia’s biopsy takes place and we learn more about what these test results mean for her, we’ll keep you all up to date. In the meantime, here’s today’s installment of: a snoozy, sprawled out baby.





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60 Days Old: Daily Update

Uneventful and peaceful day in room 15. Olivia was awake all morning, first spending a couple of hours in Dad’s lap, followed a couple more hours out of bed in Mom’s lap. When we put her back in her crib for her 12PM care routine, she tolerated it nicely (with no respiratory events) and then stayed awake for most of the afternoon.

Since she was so alert – and not agitated or angry – we took the opportunity to try out a new mobile in her crib. Olivia has responded well to all of the toys that the child life and OT teams have provided for her crib, and she especially loves the mobile we introduced a month ago. But after listening to the same tunes, and looking at the same pictures for a month straight, we figured it was about time for a change.

Within seconds of installing this mobile, the girl was hooked. Absolutely captivated. She remained fixated on the toy for quite some time, before taking a snooze. Toy time is hard work!



Playing with new toys is exhausting!

In medical news: the additional labs that GI ordered yesterday came back within normal range, indicating that her overall liver function is okay, despite the elevated ALT and AST. We’ll continue watching these numbers each Tuesday, but for the time being, no action.


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58 Days Old: Daily Update

There’s very little to share today, aside from a few of my favorite pictures from yesterday’s Father’s Day themed bed. Obviously, Olivia needed to let Dad know that she fully supports and shares his love of golf.

Today’s plan from morning rounds was to stay the course:

  • full feeds with supplemental formula, liquid protein, and now oral antibiotics (no more IVs)
  • same ventilator settings
  • lots of chest PT and suctioning, and
  • sessions with both PT and OT for some exercise and movement

As expected, having no food for a couple of days last week did result in a slight weight loss (3100g), but she was growing steadily before she got sick so we expect her to pick back up with weight gains soon.

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I Love It All – Olivia’s Father’s Day Letter

Hi Daddy,

It’s me: Olly olly oxen free! Just kidding. Olly olly OLIVIA. Ooooh-LIIIV-iiiia! Isn’t saying my name so fun? I love my name. I love music, and milk, and my mobile, too! And guess what else? I love you! Duh, Daddy. I love you more than most things. Except maybe my milk. My milk is my most favorite thing. I think. Actually, maybe I love you and Mom more. I’ll think about that one and get back to you soon, okay? I’m still figuring out lots of things so I just need a little more time to think.

Happy Father’s Day, Daddy.


I think you already know this, but you’re pretty rad, Dad. See what I did there? I made a funny! I made a rhyme! I learned about rhymes from you, Dad. From when you read me books, like Dr. Seuss. And books about little trains and little blue trucks. They all rhyme and you read them really well in this special voice that makes all the words flow one after another, in a voice that sounds almost like a song, where all the words somehow rhyme! You didn’t always read them that well, but you do now. And they always rhyme. I don’t know how you do that, but you do, and it’s pretty cool. So you taught me about rhymes, Dad! How cool is that?

I know it’s only been two months, but I’ve learned a lot from you, Daddy. I’ve learned about rhymes, and literature, and fancy music like Mozart and Yanni. Yanni is my favorite. But you already know that. I’ve learned about light switches and stinky shoes and golfing and even how to cook a potato.

You taught me about hugs and kisses, too. And you taught me when they all come at me at once, lots of hugs and lots of kisses one right after another, really fast, that’s called a smother. And it’s your favorite thing to do. You taught me it’s not Mom’s favorite, kind of like the mornings, but smothers are your favorite and I think they’re becoming my favorite, too. Mostly because they come from you. Daddy smothers! Keep them coming, Dad. That can be our special thing. Smothers. But no squeezing, okay Dad? Sometimes you talk about wanting to just squeeze me so hard, but Dad! I’m so little! You can’t squeeze me, or my head might pop off! So stick to the smothers. I love your smothers.

Your hugs and your kisses and your stories and your music.

I love it all. I love everything about you and everything you do with me and all of the seconds we spend together. All of it. I love it all.


I love you, Daddy.


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