Mindful Wanderings

Home: Settling Back In

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“Monterey” by Unknown Artist

During our last trip for appointments, as Casey and I drove past the hospital to Family House, we bantered about missing our life during Olivia’s hospital stay. It’s weird to miss a place that we were itching to leave. We desperately wanted our space back. I wanted my family to all be in one room together. I wanted control over our daily schedule. I previously wrote about the beautiful gift that is community at Family House. Since leaving we have been welcomed back with warmth — thanks to Family House we always have a free place to stay when we have appointments. The last two visits have helped me realize how much part of me misses that routine we had created. When we exit the 280 there is a sense of arriving at a familiar home. It’s a mixed bag of feelings — especially for Casey who hates city-living and usually can’t wait to leave after a night or two.

But, the feeling of peace that envelopes my body as we have settled back at home is undeniable. I find myself stunned, still, after being home for two months, at how slow our little village is and how perfect the Spring and Summer lighting is in the early morning in the valley. A rush of nostalgia as the warm light comes through oak trees and wildflowers add a splash of color to the browning California hillsides. A renewed connection to the land as I kick up dirt at Garland Park, my postpartum body struggling to run the trails that I can still navigate with half of my brain while the other half is distracted by fleeting epiphanies. I have found myself in old patterns that have been healing. Patterns that help me remember my core, my self. One afternoon I mindlessly turned down Carpenter and followed the truck route and weaved through Carmel. This particular pattern startled me into the realization of how overwhelmed and sad I was feeling. Both kids asleep in their seats, my soul took me to the beach.

“The cure for anything is salt water: sweat, tears, or the sea.”

– Isak Dinesen

A rush of gratitude overcame me. This place, my home, has offered a refuge for me for most of my life. The deepest part of me is so intertwined with this place that without any conscious thought it takes care of me. I sat at the beach with my windows down listening to waves crash and tourists chatter wondering how many hurts have been healed and how many relationships strengthened and restored by the side of the massive and powerful Pacific. I used to say that going to the beach was the best thing to do when you have a problem because you are forced into humility as you look into the expanse that holds a hidden world. Little did I know what that would mean to me today.

While I was sitting there by the beach I remembered a picture I had taken in San Francisco when Olivia was still admitted. The day I took the picture, I decided to walk through a different, further entrance into the hospital. Along the hall there was an abstract painting hanging on the wall. I am not one to sit and absorb art, but this piece grabbed my attention long enough for me to translate the streaks of colors into hills, land, and water as I walked past. It struck me how much it reminded me of home. I actually took a few steps backwards to give it another look. As I scanned the painting I noticed the white tag with the word “Monterey” written on it. I did a double take, thinking surely my mind had auto-completed, but it hadn’t. There on that little white rectangle hung the name of the artist and title of the piece, “Monterey.” As I walked away I contemplated home. I questioned how I could so easily associate this painting with a place in such a brief encounter. Is it the pure talent of the artist that the essence of a place could so aptly be captured in a painting? Or does my connection to this place make it so that my body intimately recognizes it through the simple suggestions of ratios of land and sea and the balance of colors.

As I got into the elevator and hit “3,” I could feel my home in my bones. I carried that encounter that rainy morning with me throughout our stay in San Francisco. I actually started this blog post while we were still up there and had written, “It is home and will always be home no matter how long I am gone. I realize how lucky I am that I so keenly have a sense of belonging. And lucky me: I feel I belong to a place that has astonishing beauty. I look around at views that could easily be paintings hanging on walls in far away places. And so often I walk past and forget to observe and absorb it.”

Since being home I have made every effort to absorb it all. To memorize the hillsides and the shadows. To remember the nuances of our coastal seasons. To honor the power of place.

+JMJ+

 

Mindful Wanderings

Dear Nurses, Thank You #nationalnursesweek

In honor of today being both Mother’s Day and the final day of National Nurses Week, I have some things on my mind.

First to my mom who is both a nurse and a mother: it’s like today was made for you! Never could any of us have anticipated a year in which both of your daughters would need you as both a nurse and a mother in such an intense way. But you showed up for both of us with a strength that only a mother could muster.

And I have a confession: Until this experience at the hospital, I really didn’t understand the fullness of what my mom did. I knew that she did a bulk of the work that shows like ER and Gray’s Anatomy would leave you to think doctors did. And now I certainly understand why people felt the need to come up to us at the grocery store to tell me how great of a nurse my mom is. I kind of thought people just said that kind of thing to me as a way to be polite. But now I understand the importance of the social-emotional side in addition to the technical side of my mom’s job. And I mostly feel like a jerk for all of the times I gave her a hard time after a long day at work.

And I can’t help but think about the nurses today that acted almost as surrogate mothers to Olivia. They offered care for her when I couldn’t. They taught me how to love and connect with her before I could see her. Before I could touch her. It is because of these nurses that I am even able to be a mother this baby in front of me today at all.

The nurses cared for her gently and passionately, learning her cues and the subtleties of her personality – much like a mother would in the first few months of any baby’s life. Simultaneously they respected and honored my role as Olivia’s mom.

Although we were trapped in the NICU for 102 days, I was hesitant to leave when the time came. Some days I even find myself kind of missing the hospital now. I joked with one of the nurses before discharge that maybe it was a subtle form of Stockholm Syndrome. In reality, I know that the reason for this is because of the support and friendship that was extended from the nursing staff at UCSF to our family. I knew that it was going to be isolating to go home (it kind of is). I also knew that it was going to be exhausting to have to re-explain Olivia’s condition to every new person we meet, professional or not (it definitely is). But, my joke about Stockholm Syndrome came more from the fact that I actually had grown to really care about the nurses. I’m not even mad about how much we failed to cluster appointments because I get excited just thinking about giving Olivia’s nurses a hug.

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Saint Agatha – Patron Saint of Nurses

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I’ve been thinking a lot about what I have learned from this season of life and my biggest piece of advice is to get to know your nurses. The nurse that discharged us was a nurse that I affectionately named “Coach” because every time I was having a hard day or trying to figure out how to convince the team that something wasn’t working, I would just troubleshoot ideas with her. Nurses know the system and can truly be your best ally.

So, hug your mom and hug a nurse because there is a good chance they would appreciate a little love to fill up their tank!

– Natalie

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Uncategorized

A Note from Natalie: We’re home!

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On April 7th, the Saturday before Divine Mercy Sunday, Olivia was discharged from the hospital. It all happened so quickly that I was certain something would stop us from leaving. Olivia had a procedure for her ears on that Thursday and recovered well. During rounds the doctors looked at me and asked, “So, do you have any reason to stick around?”

I was dumbstruck.

Of course we wanted to go home, but by responding with, “No, we have no reason to stay” I knew I was also saying, “Yes, we are ready to take this on at home.” And that was the part that felt the most overwhelmingly.

Taking on Olivia’s cares without a full time nurse has been a challenge, but we continue to find a routine that works for our family. A routine that is full of appointments and phone calls and lots and lots of coconut oil, aquaphor, feeding tubes; and a whole lot of trial and error.

After our first few appointments and the first couple weeks home, it was pretty clear that I wasn’t going to be able to go back to work full time. Since leaving the hospital Olivia has unfortunately stopped eating from a bottle, which means that we are relying on a feeding tube to keep her nourished and hydrated and it’s breaking me. She will nurse, but not often because she rarely feels hunger. Her feeding has been the biggest knot so far because there are so many variables – she had thrush, we changed her fortifier and then changed it back, she no longer latches to the bottle that she took before, and the list goes on.

We avoided talking about my job, knowing the inevitable, until Casey and I finally had a “come to Jesus” moment. We knew it was the right decision to make, but it was also scary. My paycheck has always been the constant that we could base our budget around. The line in the Our Father when we simply ask God, “Give us this day our daily bread” comes to mind regularly these days.

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The silver lining in all of this is that it’s giving us the opportunity to really focus in on Casey’s music; and me being home is giving us a lot of time as a family. We know that this is what we’ve wanted for awhile, it just didn’t show up quite the way we expected.

We have been welcomed home in such a sweet way by the familiar and I am so grateful for that. This weekend I went on a run/hike at Garland and found myself huffing up a trail looking at all of the purple around me. Suddenly it hit me that the last time I was on that trail I was only a few weeks out from Olivia’s birth, but I had no idea how soon she would come or how much our world would be turned sideways. This was the very park that I saw those first two coyotes. It was a sense of home when we were in the city not knowing when discharge would come and my mom would say to me, “when you go home we can finally take Olivia to Garland and you can run and I’ll stay back with the kids.” It felt so far off when she said that. But on Saturday I found myself zigzagging on trails that I know like the back of my hand breathing in the smell of dirt and the familiar native plants. Part of me didn’t really feel home until I got sweaty and dusty in this land again. These runs in Garland and along the Pacific are therapeutic for me and I need to remember that because I need a lot of healing and I am working on a lot of forgiveness on events that surrounded Olivia’s hospital birth.

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I try to keep these simple comforts and the joy of my kids at the forefront of mind as each day brings its own set of challenges. Luckily, two year olds give you a lot of laughter and preoccupation from adult worries throughout the day.

Current Prayer Requests: Olivia’s feeding, our family as we settle into our new normal with me at home and one income, and for the families that are still in the NICU.

Warmly,

Natalie

+JMJ+

Uncategorized

Today’s Mindful Wanderings

93 days in the NICU. Nearly 93 mornings that I have walked by this view and thought I should take a picture. The lighting is always just right and the natural earth tones starkly set against the concrete is a visual reminder of the tension between tender new life living in such a sterile and medical environment. These 93 days have brought us from Christmas to Lent and now (im)patiently awaiting Easter.

One of the (many) reasons I love the Catholic Church is the opportunity to engage with the liturgical calendar. Every season is meaningful and throughout the year there are repeated opportunities to practice patience and penance only to be rewarded with feasting and celebration. As humans we seek ways to keep track of time, often for the purpose of remembrance. Liturgical living does this on an even deeper level.

This year I am finding myself especially focused on Holy Week as we conclude Lent and look towards Easter on Sunday. Spy Wednesday (remembering when Judas betrays Jesus and reflecting on the times we have failed and have also betrayed Jesus), Maundy Thursday (when we remember the Last Supper: the institution of the priesthood, the mass, and the Eucharist – the alters are stripped, feet are washed, the Eucharist is removed, and we enter into three very intense holy days called the Paschal Triduum), Good Friday (reflecting on Jesus’ crucifixion and death), which finally brings us to Holy Saturday and the Easter Vigil. The mass starts in the darkness of Lent and by the end we are in the light of Easter. We have welcomed new Catholics through baptism and confirmation, Jesus has given us his body and blood, and Jesus has risen.

Lent is heavy, but there is light at the end of it. The darkness of winter is ushered out by the light of spring. And how much more sweet and warm is that light after enduring the last days of the darkness. I see Easter celebrations starting and I understand the temptation to hurry Lent up to celebrate. But, I pause. We must wait. The parallel of wanting Lent to end already and my impatience for discharge from the NICU is not lost on me. Now that we have a tentative timeline for discharge I just want to hurry up these last days so that day will finally come. But if we are deliberate and prepare for that Easter Feast it will be that much more sweet and deserving, won’t it? As will be the day that I trade urban cactus for the coastal oak trees of home.

Mindful Wanderings, NICU Updates

Today’s Mindful Wanderings

Olivia has been out of the womb for 11 weeks and 2 days, but she was 8 weeks early so her corrected age today is 3 weeks and 2 days or 43 weeks and 2 days. 🙃 She looks like an entirely different being, but her soul – her spirit – that has been a constant. My dear @melissalflower came for a visit this past weekend and reminded me of one my absolute favorite Shel Silverstein poems:

Listen to the MUSTN’TS, child,
Listen to the DON’TS
Listen to the SHOULDN’TS

The IMPOSSIBLES, the WONT’S
Listen to the NEVER HAVES
Then listen close to me –
Anything can happen, child,

ANYTHING can be

(I’m not crying. I just have watery eyes from the dry air in the hospital. Why? Are you crying?)

I think we all need to hear this piece of wisdom for the times that we doubt ourselves, our intuition, our calling, our vocation ordained by God. This time, I needed to hear it for Olivia. Because what’s weird about moms and babies is that even though she is no longer in my womb, we are still so intimately connected. That will continue past this postpartum stage. But right now it is as if I can translate and transfer this wisdom and encouragement to her simply by my knowing it in the same way I was able to pump blood and nutrients to her.
I’m coming off of a few heavy weeks of negativity and frustration. Yesterday, after a family meeting with Olivia’s primary teams I left the hospital feeling defeated again. Right when I thought I was out of my funk. On my walk back (to our temporary) home I remembered the Shel Silverstein poem. For Olivia we have heard our fair share of shouldn’ts, impossibles, won’ts, and nevers. We have heard them. And Olivia has shown us anything can happen, anything can be.

Mindful Wanderings

Today’s Mindful Wanderings

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Friday was this guy’s 29th birthday. I’ve been mulling around and crafting words for this post since Thursday. Warning: this is a long one! We met when we were 17 and never could either one of us ever have imagined what was in store for us. I know, what a cliche, right? But how do you express the loyalty and growth that started as two teenagers and developed into a marriage, and a family of four, that has asked each of us to simultaneously grow out of and into ourselves. The growth can be gentle and slow, but mostly the growth busts through the walls we each carefully built. What I admire about Casey, though, is that when that growth decides to crash into his life he looks at the pieces and continues to move forward. What has resulted is a person that takes being a father and a husband and a Catholic very seriously. All things that ask you to surrender who you thought you were supposed to be. Surrendering to the unknown is something Casey and I both have continually done along this path we have forged together muttering, “I don’t know. We will figure it out.” A set of phrases we have had to become very, very comfortable with – especially in the last 2.5 months – but a concept that comes much easier to Casey than to me. This mentality, has shaped Casey to become a person that I am incredibly proud to call my husband and my friend. Olivia and Oscar are very lucky to have him. I am lucky to have him. I am so glad that we are doing life and family together because he isn’t afraid to have the tough conversations and to put in the hard work. The best part though, is that even in the midst of what has been the most stressful and trying time in our life thus far, I still find myself in tears from laughter – even in the NICU surrounded by monitors and sick babies and sterile rooms. Happy birthday, Casey. Here’s to many more years of figuring it out!

NICU Updates

A Note from Natalie: Patient progression

Olivia's First Walk
Olivia’s First Walk!

My apologies for the radio silence – we have had a rough go of it. It took me coming out of this fog that I was in to realize how rough the last two weeks have been. I shared previously that Casey’s bike was stolen a month ago. Luckily, we have renters insurance and a lot of receipts are digital nowadays so we were able to get some money back to replace his bike with a pretty quick turnaround. For those of you that know Casey, this experience has been pulling at every one of his triggers. Having a bike eased a little of the monotony and helped make him feel less trapped. Shortly after, Casey’s brand new bike was damaged and his wallet and glasses were stolen. This added even more to the daily stressors of the NICU life and the beginning of the medical bills rolling in.

Although Olivia is now officially weaned off of pain medication, which is a huge relief, other things in the hospital aren’t progressing as quickly as before. She is still breathing on her own and she hasn’t shown any signs of infection. She is even able to go “off monitor” and go on walks around the unit. In the big picture she is doing great. She’s even wearing clothes now! But. And there is always a “but.” But, in order to be discharged without a feeding tube Olivia needs to take all of her feeds by breast or bottle. She is making slow progress, which is putting a lot of pressure on me to breastfeed and pump and a lot of pressure on Olivia to perform and prove that she can take milk from me and from a bottle. We have literally tried almost 10 different bottles in the last few days. The shape of her mouth and a high palette, which is a result of her skin condition, has made eating by the bottle difficult. Each feed is being monitored, measured, weighed. The success of taking a bottle is key to discharge because she will not be able to reach her caloric needs by breast milk alone. Her jaw is still very tight so she has to work hard to be efficient, which burns calories. And, on top of it all, she is getting A LOT of volume to keep up with her caloric needs so she is often gassy and uncomfortable. Needless to say, this has felt like an infinite loop of going nowhere. We continue to adjust and plan and trial and adjust again. It’s absolutely exhausting. It’s especially exhausting when you’re sweet 2-year-old champ isn’t sleeping well and is fighting bedtime with every ounce of his being.

It was a rough, rough few weeks.

Here we are on the other side of this fog and I can barely believe I held it together. That may be the iced coffee I had around 5 PM talking, but things are looking a little clearer now. Casey has his repaired bike back. I have settled into the patience of taking Olivia’s feeds day-by-day and suggesting small changes as we go. Oscar is getting much better sleep. Each day, I (admittedly often begrudgingly) remind myself that tomorrow we can start again. Truly, this has been the most sacrificial Lent I have ever, ever experienced.

On my walk back from the hospital tonight I was reflecting on why things feel so hard right now and thinking about what helped me get through the last two weeks without a major meltdown. In this hospital stay, the times that things have felt the hardest for me are the times that we are so close to achieving a big milestone: when Olivia was on the cusp of being extubated, when we were waiting for the last plaque to come off, when the humidity in her isolette was being weaned, when she was being moved into an open air crib, and now to get the darn feeding tube out. We can see the milestones coming long before they are accomplished. Each time I wanted more than anything for the waiting to end. I desperately wanted to be at the finish line so we could start working towards the next goal. The conservative moves only exacerbated my impatience. Each accomplishment means that we are that much closer to going home. I just want to hurry it all up here so we can go home and slow it all down to bask in some of that postpartum-maternity-leave bliss that I may never get. That’s why these few weeks have been hard. The last achievement before discharge is the one that is taking the absolute longest and requires my proactive involvement.

I just want to go home. And yet I find myself feeling sad about the day that we leave. Some may call it Stockholm syndrome, but really it is just that I have found some really special people. What I am going to say next should be no surprise to a) anyone that has spent a significant amount of time in the hospital and/or b) anyone that knows my mom: What has helped me avoid a total and complete meltdown are the nurses. P.S. my mom is a nurse so I may have a tiny bias because my mom is the best. The kindness and compassion from the staff at the hospital and the staff at the family housing, especially the nurses, is the antidote. Being able to slump into Olivia’s room or drag my feet through the door at the family housing and be greeted by people that simply understand the struggle that every day brings is refreshing. It is freeing to be able to converse honestly about our situation with no judgment and no offering of solutions or pity. Just open ears. I am still learning how to be of support to families in circumstances like mine, but I have to say I have some astounding role models. Reading through this article Being Supportive: What to Say and Not to Say to Families of Ill Children helped a lot, too.

Olivia’s most recent feeding trends are increasingly positive and we really are close to going home. The progress that has been made in the last two (!!!) months is staggering. Olivia could not have done it without the love and support from the community of people that are so anxiously waiting to meet her. Thank you for the continued love and support as we patiently prepare for our return home as a family of four.

Warmly,

Natalie

+JMJ+

P.S. The featured picture on this post is of Olivia’s first walk around the NICU with some of her primary nurses. The one in the maroon would be especially proud of my accidental punny title.

Special Prayer Intentions: Olivia’s feeding, my patience, all families of babies in the NICU, and the continued wisdom of the nurses! Our Lady of Mercy, pray for us!