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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!

NICU Updates

A Note from Natalie: Onward and Upward

Olivia's Hand
Olivia’s Hand

Since our last update, some very exciting things have happened! The reason that this is a little late is because I wanted to wait to post until after the meeting we had today.

First the stupid stuff: Casey’s bike got stolen and I got sick AGAIN. Womp womp. Super lame. We are recovering, but I am probably most bummed about Casey’s bike. That was his affordable healthy outlet and quick transportation around the city. We are in the process of filing a police report and a claim with our renter’s insurance.

But onward and upward!

Olivia’s room is off of contact isolation. This means no more sterile gloves, no more gowns, and no more sterile water and wipes. Although Olivia still has a feeding tube, her feeds are increasing in volume and decreasing in duration. We have had some really promising moments breastfeeding and she is taking a bottle well. Due to her high caloric needs, Olivia will likely need to have a few bottles a day to supplement what I am able to provide breastfeeding. Olivia is also able to get tub baths now, which is great because tub baths are so much more effective for exfoliating and cleaning her skin. Most of the plaques have now come off and we can really see her eyes, ears, and nose. She needs less and less outside support for her breathing. The humidity in her isolette is gradually being weaned so that she can be in a regular crib. This is new territory for the NICU team because they do not usually keep a 38-week (gestational age) baby in an isolette for this long. But Olivia loses fluids through her skin at a rate that typical babies don’t. I feel so thankful for a group of doctors and nurses that don’t want to rush through anything and really does let the baby, the person, guide the decisions. And Olivia really does show us when it is time to move to the next step.

The meeting today was about the milestones Olivia needs to hit before being discharged (no more apneas, no longer dependent on a feeding tube and tolerating all her feeds, and acclimating to life outside of the isolette) and preparing us for what life will be like when we go home. We still don’t know exactly when that will be, and it is both exciting and scary to think about being home without the hands-on support of the incredible nurses at USCF. Life will eventually go on and we will find our new normal, but I know it will take a lot of time and patience. And lots of doctor’s appointments. Realistically, we will be here through part of March.

The last weeks haven’t brought good news for just Olivia though. When we were first touring the housing facility where we have been staying, Anna, our tour guide, was saying that when they built the building they had purposefully set it up so that little “neighborhoods” were created. I kind of (internally) rolled my eyes when she said this. Would we really get to know anyone that well? I should know to never underestimate the power of community.

A few weeks back we excitedly welcomed one of two twins to the floor. His brother is still in the same unit as Olivia, but this twin gets to be snuggled with his mama and go and see the world! On Saturday night we celebrated with a family on the floor as their 16-year-old daughter was in recovery from a double lung transplant. They have been here since this fall waiting for the phone call and finally it came. Within hours of the phone call, she was being prepped for surgery. Her father was bursting with joy as he shared the news with us – a joy that I don’t think I have ever seen before. A burden had been lifted from him that you could physically see. We hugged and laughed, wiped away tears, and congratulated him.

Just days before he had seen me with a luggage cart and excitedly asked if we were leaving. See, around here, as much as you cherish these friendships you have forged in the midst of hardship, in the end you want so desperately to say goodbye to each other because that means that our babies are okay. I told him, no, we weren’t leaving yet. We were just bringing in some stuff from the car. Last night, as we were leaving the kitchen we wished 5-year-old Isaac good luck and shared our prayers with him because this morning he had open-heart surgery. Today I ran into his dad, grandma, and little sister in the hospital elevator. Isaac had his surgery and is stable this evening.

This road can be so lonely, but these little “neighborhoods” within a temporary living facility have come to be a shining light for each of us. As Dorothy Day wrote, “We have all known the long loneliness and we have learned that the only solution is love and that love comes with community.”

Blessings,
Natalie

+JMJ+

P.S. If you aren’t an organ donor, please reconsider and go sign up. Right now. Your lungs could be the second chance at life for a 16-year-old. If you haven’t donated blood in awhile, go and do it because that blood may be the transfusion a little 34-week corrected gestational baby may need to fight through the night.

You can read more about Dorothy Day and her movement based around radical hospitality and community here: http://www.catholicworker.org/dorothyday/dd-biography.html