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A Note from Natalie: We’re All Doing Alright

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I can hardly believe that it has been three months since I last wrote an update. As most of you know, in August our little family of four (and our dog, Oso) said, “see ya soon” to California and made our way to Tennessee. There are several things that prompted the move, and although it was certainly the right decision for our family, it has not been easy. The move itself was relatively painless thanks to Casey, his little brother, and his dad. My dear friend Melissa was sweet enough to drive from Long Beach to Carmel Valley to San Francisco, to hop on a plane just to be an extra set of hands for the flight. She is simply the best.

We are living and helping out on a beautiful farm in a small town east of Nashville. Casey gets up most mornings to help with the morning chores and helps throughout the day with anything from cleaning eggs to moving cattle fencing. I have learned how to eviscerate chickens and ducks. With this setup Casey is able to spend time working on his music and we can spend more time together as a family. This transition has forced me to rethink my ideas around productivity. I have worked outside of the house pulling in predictable and scheduled paychecks that I’m trying to figure out what is realistic to expect of myself right now.

Between the farm work, establishing medical care for Olivia, and settling into life as a family of four, the last few months have just blown by. We deeply miss “our people” back in California that did so much to wrap us in their arms and take care of us in immeasurable ways. We were so lucky to have people around us that knew how to deeply care for us. We have been welcomed to Tennessee by some wonderful people, including the Simpsons who have been gracious enough to let us “help” on the farm. We are continuously humbled by the generosity and love that was and continues to be extended to us.

Life seems to be slowing as the weather gets cooler and Casey and I are finding that there are a lot of things that we are just now processing about the last 10 months. It often feels like the world was going by us a hundred miles an hour and it has taken awhile for us to catch up. And as Olivia’s first birthday draws near, I find myself wondering how it’s all going to feel when the day after Christmas arrives. Of course, we find ourselves in awe of her on a daily basis. In awe that she is here with us giving up belly laughs for Oscar and mimicking sounds. We are in awe that she has such a laidback temperament after the trauma that she has experienced in her short 10 months. We often say that when you look at her, you just know that her soul knows something more than any words can express. She’s already lived a remarkable life. And we know that there is just more of the sweetness to come, and for that we are incredibly lucky. But do not be fooled, the girl has an ornery streak.

Establishing medical care for a baby with a rare condition in a new state is a fulltime job  – let me tell you. I’m still trying to learn the ins and outs of the system in Tennessee. We are fortunate enough to be tapped into Vanderbilt, which has a children’s hospital that is on par with USCF. The care Olivia has received has been wonderful. What is difficult is educating and re-educating about Harlequin ichthysosis, and having to answer the same questions and review the same information over and over again. As any parent of a child with medical needs will tell you, it’s draining and exhausting to go through these appointments. At UCSF all the specialists saw Olivia while she was still in the NICU so they were learning with me. Here, they walk into the room like a deer caught in headlights. What has helped me be a little less annoyed is that Vanderbilt is a teaching hospital, as was UCSF, which means that just by Olivia going to her routine appointments future medical professionals are learning about a rare condition. If that means that another set of parents down the road doesn’t have to be told outdated information and can be given some peace of mind, than I can curb my frustration that her chart is STILL not up to date after months of appointments.

Olivia has been able to maintain some weight gain without her feeding tube, but that conversation is still my least favorite and the most frequent. We go to physical therapy and occupational therapy on a weekly basis and we average three appointments a week in Nashville (about a 40 minute drive). Cognitively Olivia is typical and hitting her marks.  Although, we know she has minor hearing loss in one ear, she is cooing and mimicking sounds. She still loves to hear Casey play guitar just like when she was in the hospital. She and Oscar find so much joy in “playing” together, which is usually Oscar whipping around the room and Olivia smiling and laughing along. Olivia sits up on her own and has been doing so for a little over a month.  Much of her physical development is delayed though – she doesn’t roll over well, or frequently, and she is just now starting to put weight on her feet and legs. We know to be patient because she will catch up. She will be getting another ear cleaning and hearing test in the next few weeks to determine her hearing in her left ear. She may need surgery on her left hand and left foot – we have an appointment next week about that. I’m hoping none of this means any more hospital stays, but that’s always a possibility. It seems as though hair is growing in well, but her scalp is definitely one of her most dry areas so damaged hair follicles are always a concern. Overall, Olivia is doing well. She is happy and curious and sociable. We are so lucky to have her in our family.

Life is starting to find its rhythm again. Please continue to pray for us: that we are able to figure out stable income, Olivia’s continued health as flu season started early this year, and for wisdom and protection for upcoming procedures.  And, as always, keep all the families with children in the hospital in your prayers. Lastly, please keep my cousin Tito in your prayers. He is recovering from being in a coma. I started a GoFundMe for my aunt where you can learn more about his progress: https://www.gofundme.com/TitoAlfaro.

In infinite gratitude,

Natalie

+JMJ+

 

 

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Home: Saying Goodbye (for now)

The great irony of my life is that when I proclaim something, I often end up eating my words. I had finally settled into being home and I was in the process of coming to terms with what life might look like for me in the near future taking on some small side paying jobs, starting Oscar in a preschool, and mapping out some goals with Casey for his music. I was trying to establish a routine and a schedule for us. I was finding my identity again and that was largely reflected back to me through this place that I feel in my bones: home. My last blog post was all about the healing power of this place for me and how intimately we know one another.

But, as life goes, God took me for a 180 that I could never have guessed. Again, I was reminded that “surrender” is the word of 2018. On our way to drop off an application for an apartment in Monterey, a series of events occurred that drastically changed our route. The short of it is that we will be moving to the Nashville area in August to work on a farm and dig deep into that music world. A world that we’ve carefully skirted around for years, but Casey is ready to go at it again. As much as we both wanted to fight it, we just had to say yes. It was all divinely falling into place.

We partly had to say yes out of desperation, too. The Monterey Peninsula is just too expensive. It breaks my heart to see my fellow Californians being pushed out of their hometowns because the cost of living is unattainable for most of us. We’ve all heard it over and over: my generation was told to go to college and promised you’d get a good job and you’d be better off than your parents. We all know where the rest of this goes.

I have a complicated relationship with Nashville, which made for a tearful and reluctant muttering of yes. Little did I know Casey was praying that I would have an open mind and heart about the whole thing. See, I have said countless times that we would never move back there. I would never move back there. I couldn’t help but be baffled at God’s timing of this all. After the last year that we have had now is the time that I have to surrender again? But, I couldn’t deny this tugging feeling that home was telling me to move on. And as I rolled my eyes and agreed to the move, it finally made sense why I had to say “yes” all those other times. For anyone that knows us, a move to Nashville has been discussed and reworked a dozen times. In the end, it was never right. Each time I agreed to this move before and it didn’t happen, it was like God was softening me so that this time, in His time, I was ready to do it. He knew that I wouldn’t have agreed so easily if this was the first time because this move is and will continue to be complicated with a 2.5 year old and a 6 month old with a rare skin condition and a lot of medical needs.

An adventure awaits us that we are being called to undertake. I am heartbroken to leave my precious California and to leave my family and friends. We live in literally one of the most beautiful places on earth. I can barely think of the Pacific Ocean without feeling a lump well in my throat. This place and this community has been so good to us for so long.

As you can imagine, moving across the country is expensive. Transferring all of Olivia’s medical records and history continues to be a saga of terrible hold music and a glaring verification that bureaucratic systems are made at the hands of flawed humans. But, we will make it work and it will be okay. As my very wise aunt, Gina, told me in a voicemail recently: “…it all works out in the bigger picture. You don’t know what’s in store for you.” So, off we go.

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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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+

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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!

NICU Updates

A Note from Natalie: Happy (belated) Due Date, Olivia!

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Artwork by Melissa Flower

Yesterday, February 19th was Olivia’s due date. We have been here for 8 weeks and we have experienced a fullness to life that I could never have imagined, but seems to only come in these few times that life and death are so closely intertwined. How appropriate – perfect even – that we are here during Lent, the liturgical season where we are reminded that we are all dust and to dust we shall return. This has truly been one of the most humbling and grounding experiences I have ever encountered. A constant reminder to embrace life, find joy in the simplicity, and strip away the excess. Living out of a tiny room with just a backpack I packed in a hurry two months ago helps with that, too.

Olivia is doing really well. Honestly, she is doing better than we could have ever imagined. Because of this, people at the hospital are starting to share with me their experiences from when Olivia was first admitted. Yesterday, one of the dermatologists said, “I do not in any way want to down play everything you guys have gone through because it has been a rollercoaster, but Olivia has done so much better than we could have hoped for.” A few days ago the respiratory therapist that took care of Olivia the first day she was in the hospital said when he first saw Olivia he broke down in tears. He knew he had to pull it together because we were coming in from Monterey and hadn’t really gotten to see her yet. He was so sad for us. He told me this as we stood over her open isolette looking down at her big eyes, cooing and bringing her fist to her mouth. She has done so much better than any of us even knew was possible during those first days. December 26th and the days that followed were filled with so much uncertainty. There is still uncertainty that looms, but it is an uncertainty about what life for Olivia will look like instead of an uncertainty about life without Olivia.

It was uncomfortable to hear from doctors that we had a diagnosis, but the condition is so rare that the basic science behind the disease isn’t understood. Each baby with this condition has a different set of variations in the DNA since it’s a double recessive genetic disorder. The recessive variant I gave her and the recessive variant Casey gave her are different (because we aren’t related – whew!) so the resulting combination is one of the reasons for all of the unknowns. We don’t know why plaques build up in utero. We don’t know what her skin will look like or to what extent it will improve as she gets better, if it will get better at all. We don’t know if developmental milestones like crawling and walking will be delayed because of damage done by the plaques. And because babies with this condition used to die within the first days to first month of life, there simply are not enough known cases to even make educated guesses. The doctors did a great job at focusing on what is known about her condition and being honest enough to admit that there was a lot no one knows.

Late in the night of December 26th, after Olivia had already made it to UCSF, Oscar was finally asleep at home, and we were still too shocked by the day’s events to go to sleep we sat in our living room and talked. There was a peace we had because we knew that Olivia had a spirit that was going to teach someone something. Our conversation kept coming back to the fact that even if Olivia didn’t make it, her short life would not have been a waste. Two months later, we know that Olivia has touched more lives than we could ever have imagined and she still has a lot of life ahead of her! Our hope is that from her fantastic and innovative care at UCSF, plans of best practices can be shared with other hospitals to treat similar cases so that other children can blow nurses and respiratory therapists and doctors away the same way Olivia has. Olivia’s spirit, her soul, has always been palpable from the moment she was born. That spirit has attracted fierce advocates and loyal champions. She is one popular lady in the NICU! Olivia is so deeply loved and for that we are grateful.

This week we are focusing on breastfeeding. The goal is for her to get all meds and food through her mouth before we go home. We still do not have a discharge date and we will likely not have one for a couple of weeks. But we are talking about weeks now, not months. That is a relief for me because as Olivia has stabilized and developed more and more into just being a newborn, I am getting increasingly annoyed at having to live by the schedule of a hospital. My days are dictated by feeds that are given every three hours, and rounds that happen in a two-hour window in the morning, and hurrying up to wait around to just be getting ready to leave and running into doctors and nurses in the halls that I need to talk to. This schedule is hard enough on its own, but adding in the complexity of splitting time between Oscar and Olivia is starting to really weigh on me. Oscar still hasn’t met Olivia due to the visiting restrictions during flu season. This is just not how I envisioned our first months as a family of four. I know we will eventually get that time of soaking in the sweetness and slowing down, but I know that on the other side of the NICU is getting back to work and adjusting to life with a newborn that has complex care regimens.

This Lent I am learning how to let go and focus on the tangible things around me. I am trying to remind myself that I will eventually have some control back about how we spend our days or what is applied to Olivia’s skin and her food won’t be automated through a tube. Eventually I will be able to have both of my kids in one room. My hope is that in the moments when I am feeling overwhelmed by the noise or frustrated that I haven’t been able to go on a run in weeks, I will be able to slow down and be reminded that in these long days in the NICU all I wanted was to have my family in one room. A reminder that we are all dust and to dust we shall return.

Blessings,

Natalie

+JMJ+

 

P.S. Please join us in praying the Our Lady of Mercy Novena. We started yesterday, on Olivia’s due date, but it’s not too late to join us! It’s easy – just pray this prayer once a day for nine days:

• Our Lady of Mercy Novena •

Our Lady of Mercy, Immaculate Mother of God, hear our prayer. You responded in love to the captives who cried out to you from their  oppression, breaking the chains of their bondage. Be with us as we seek to be heralds of God’s love and freedom. The Word of God became flesh through your fervent and pure love. We ask you, dear Mother, break the chains of our slavery (mention in silence any need or difficulty) for free of them, we are able to imitate your Son, Jesus Christ.

Amen.

 

Special Prayer Intentions: Olivia’s continued growth and success, all families of babies in the NICU, our patience as a family as we are displaced a few more weeks, and for Oscar’s sleep!