Mindful Wanderings

Today’s Mindful Wanderings

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Casey and Oscar came back today from a short trip home taking care of a few things. It wasn’t easy being away from Oscar for a few nights. This NICU experience actually forced my first nights away from him. He can’t come on to the floor Olivia is on until flu season is over so he hasn’t even met her yet. Until this protocol is lifted, I am forced to figure out how to split my time between my two kids. I long for the moments that I can be holding Olivia constantly like you do with any newborn, and watch Oscar play with his trucks. When I was pregnant I daydreamed about slow afternoons snuggling both of them or watching Oscar play while soaking in small fingers and toes.

I know that I still will get those moments (peppered with moments of realizing Oscar is a giant toddler that doesn’t know how to handle an infant), but these current moments of having to split my time tears my heart apart. And each day Olivia is more alert and I feel more connected to her and I can’t stand leaving her. But Oscar needs me, too. Each day brings a new schedule as I figure out this balance. Tonight I got to put Oscar to sleep after dinner and then hopped onto the shuttle back to the hospital to practice breastfeeding and to give Olivia a bath. If tonight is like last night, I will put her back in her isolette and watch her root around to which I can only offer a pacifier to soothe her, until tomorrow when I get to hold her again. This month has brought out the complexity in life and made us face it head on — the thin veil between life and death: grief, sorrow, sadness and joy, delight, and warmth all simultaneously sharing a space in our hearts.

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Today’s Mindful Wanderings

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Today is Tuesday of the Fourth Week in Ordinary Time and the Scripture readings for today’s mass hit close to home. Begging God to be close, contemplating Jesus’ miraculous healings, and remembering that this sacred scripture is full of stories and histories that deal with suffering, death, and mourning. At the end, though, there is always redemption. Right now in this turmoil and this oscillation between thanking God that our daughter is alive and wishing this wasn’t happening each day starts to feel monotonous. We have ridden this roller coaster too many times to get the thrill anymore. We get up to do it again to come back to this room that is not our home. I question if I am praying for the right things. I wonder what I will find wisdom in when I look back on these times. And I keep coming back to miracles and wondering what miracles are ahead of us.

Our baby will come home with us. Now we know that. Some parents here don’t know that. There are so many things to be thankful for in Olivia’s prognosis, but there is still so much we are mourning. And I find myself in this space of wanting a miracle and simultaneously floating through each day grasping for a normalcy that I hope will go away.

Psalm 86:1-2, 3-4, 5-6

R. (1a) Listen, Lord, and answer me.
Incline your ear, O LORD; answer me,
for I am afflicted and poor.
Keep my life, for I am devoted to you;
save your servant who trusts in you.
You are my God.
R. Listen, Lord, and answer me.
Have mercy on me, O Lord,
for to you I call all the day.
Gladden the soul of your servant,
for to you, O Lord, I lift up my soul.
R. Listen, Lord, and answer me.
For you, O Lord, are good and forgiving,
abounding in kindness to all who call upon you.
Hearken, O LORD, to my prayer
and attend to the sound of my pleading.
R. Listen, Lord, and answer me.

To all the saints in heaven, pray for us.

NICU Updates

A Note from Natalie: A Month in the NICU

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Olivia is a month old! And we have been here for a month.

Every milestone brings conflicting feelings.

That is much longer than I ever expected to be here. But I have learned to throw expectations out of the window. Thanks coyote wisdom (for more on that, click on over here). We still don’t really know how much longer we will be here and, really, I am not sure anyone would be really able to tell us that anyway so I don’t even ask.

Each day I hear from at least one person exclaiming, “wow she looks so good today!” or “I can’t believe how much better she looks than the last time that I saw her.” I find myself saying similar things and a few days ago I admitted to one of the nurses that I am not really sure why I keep saying that. Olivia amazes us with her progress in one way or another every day – sometimes more than once. I really shouldn’t be surprised anymore. We joke that all Olivia knows how to do is make big strides. That’s all she has done her whole life. We imagine her saying to herself, “Guys, I got this.” Casey and I nervously laugh in fear and excited anticipation when we think about our future with Oscar and Olivia because so far they both have bigger personalities than we could ever take credit for. It’s okay, guys, we got this.

And at the end of that sentence I exhale a sigh as the smile fades off my face. We are tired and some mornings it musters everything in us to make the (short) trek to the hospital to do “it” all over again. I know that some of the therapeutic-trained folks around the hospital are concerned about whether or not I am really coping in a healthy way. People continue to give me permission to cry or have bad days. They keep telling me that it’s okay to show that to the hospital staff. I always kind of smile and nod at them. I know that I am not showing the emotion outwardly, but I am feeling the up and down and every curve of this rollercoaster. And I am processing it inwardly until I am ready to share. I am learning that I am a very private person and what I share with a complete stranger is far less emotion-filled than what I share with those closest to me.

This realization has made me deeply thankful for our community near and close, far and wide. Casey and I have spent the last year thinking about the true purpose of community and the gift that comes from radical hospitality. For those that have visited our blog you may have seen a quote at the top of the page by Thomas Merton: “We do not find the meaning of life by ourselves alone – we find it with another.” I have it written on the whiteboard in our room, too. Earlier this summer, around the time I found out I was pregnant with Olivia, I shared with friends a similar quote by Dorothy Day: “We have all known the long loneliness and we have learned that the only solution is love and that love comes with community.” We believe that it is within our communities that we find our identity. It is coming side-by-side with those that we are in relationship with and staying there. At this season of our life, these quotes have layers of meaning. I know the professionals are there to help me through my bad day, but I am one of the lucky ones that have a multitude of people around me that are truly committed to community and the beauty of being in relationship. What is jaw dropping is the way in which complete strangers have also stepped up to offer support. If anything, this experience just casted a wider net for what Casey and I get to call our community. I know the hospital staff is there when we need them, but so far our whole family have been taken care of in ways that we didn’t even know were possible. To that, we humbly and gratefully say thank you to each and every one of you. Thank you for your generosity, your prayers, your hope, and your willingness to be in community with us.

For those of you that follow Casey or me on our social media accounts, you may have seen a post I shared recently about music therapy. Olivia is still on pain medication and some days are better than others. We have been talking to the Music Therapy team for a few weeks and they finally came in to see how she would respond to some tunes. They were pleased with the results. When they found out Casey is a musician they suggested he play for her, too. We all agreed it’d be good. But none of us knew how good. In the first moments of Casey strumming the guitar and singing, Olivia turned her head to look at him, settled in, and her heart rate dropped and stabilized. Olivia has now been prescribed what I call “music meds” a few times a day. It’s a special time for us to share as a family as I am holding her and he’s playing for her. It’s healing for us all.

Thank YOU for your role in helping our family cope, heal, and transform.

With Love,
Natalie

+JMJ+

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NICU Updates

A Note from Natalie: Day 22 in the NICU

Yesterday marked three weeks outside of the womb (and inside the NICU) for Olivia. This makes her corrected gestational age today 35 weeks and 1 day. I really cannot believe three weeks have passed since she was born. The NICU is a time warp. I never seem to know what day it is or how many days have come and gone because nights turn into mornings so quickly and afternoons seem to drag on forever. We have made some progress in creating a routine for Oscar thanks to all of the great resources from the nonprofit providing lodging and the Child Life Specialists at UCSF. But for Olivia the last week and a half was really hard. Or at least it was for me and Casey.

A few days after my last update, one of Olivia’s nurses noticed that Olivia wasn’t acting like her usual feisty self. She wasn’t moving her little arms and legs around as much and her heart rate was elevated. As suspected, it was confirmed through blood cultures that Olivia had an infection. More consultant teams were called in, like pain management and infectious disease.

It was tough for us to go from seeing so much positive progress day-after-day from her first days in the NICU to almost a week of Olivia just “doing okay”. Her infection put a stop to a lot of the big strides that she was making and there were setbacks to her breathing and feeding. The possibility of getting her breathing tube removed (a key step in getting to hold her) was put aside until things improved. Her feeds were decreased, which affected if and how she was getting other medications. Each evening I left the hospital feeling empty.

Slowly things did start to improve and on Sunday afternoon Olivia’s breathing tube was finally removed. This was a huge milestone for Olivia. And I finally felt relief after she was successfully off the breathing tube for 24 hours. We are now able to hear Olivia cry and make those sweet newborn noises. And yesterday, three weeks after she was born, I finally got to hold my daughter for the very first time. I am grateful for each opportunity I have to hold her, but it came with its own complex range of emotions. A sense of relief and purpose came over me once she was placed in my arms. But that feeling has been shadowed by the fact that when I hold her she is still connected to machines and there are layers of blankets and mattress between us. I have to wear sterile gloves and a gown to be able to touch her.

The progress of her skin has been remarkable. As we shared previously, Olivia has a rare genetic skin disorder that resulted in her being born with thick plaques all over her body. This is because her body creates too much skin too quickly and she can’t naturally shed it like the rest of us. A major focus has been gentle exfoliation and daily baths to remove the plaques—a routine that will continue after we leave the hospital to avoid skin build up again. Olivia is slowly emerging from under the plaques and every day she shows us a little more of herself. We are back on track to finding little wins every day and I will cherish each as this trend lasts. Good news is followed by bad news that is followed by good news. And sometimes news is just news. The thing with the NICU is that you truly have to take life moment-by-moment. So that’s what we will continue to do.

With Love,
Natalie

+JMJ+

NICU Updates

A Note from Natalie: Olivia’s First Update

I have been struggling to provide an update about our Olivia Mercedes because I am trying to strike a balance between two things: sharing enough information so that people feel “updated” and not over-sharing in protection for the dignity of our daughter. Mix into all of that the fact that everyday we receive mountains of information from various teams of doctors and specialists. Granted, a majority of this information lately has been positive and hopeful, but there are still pieces that are unknown and no one has the “right” answer.

There are teams of specialists that come in on a daily basis, including orthopedic surgeons, respiratory therapists, dermatologists, plastic surgeons, neonatologists, geneticists, pain management units, physical therapists. And those are just ones that I remember off of the top of my head.

We have yet to hold Olivia and this might be the most emotional piece of this journey for me. Upon delivery I made the split second decision to have the neonatologist at CHOMP take Olivia away from me and attempt to “make her stable.” At the time, I honestly didn’t really know what that meant.

I barely even got to really look at her before she was whisked away into another room. Not until January 2nd, when she was seven days old, did any of the doctors or specialists or nurses really address giving me the opportunity to hold my daughter. Just hearing someone else talk about it was enough for me to cry in front of strangers, which is probably one of my least favorite things to do in the whole world. I actually don’t really like crying in front of anyone, but especially not respectable and intelligent strangers.

 

Today Olivia is 9 days old, with a corrected gestational age of 33 weeks and 2 days. In all honesty, when Casey and I were packing to come to UCSF I thought we would be home within 4-5 days maximum. We had prepared ourselves for saying goodbye to Olivia and then coming home. We had gotten her baptized before she left CHOMP and I was finding peace in that. In the back of my head I was thinking about the logistics of funeral arrangements for an infant.

 

So, the update you are probably looking for is this: for a preemie, Olivia is doing well. Her breathing is strong and she may be able to have her breathing tube taken out soon. She is currently getting an MRI done to help figure out when this might be—which also means we are one step closer to holding her! Her feedings are also through a tube and they are increasing every other day or so. She is getting my breast milk, which is being fortified with extra nutrients. The complications that require the attention of these specialists are around her skin. Olivia was born with thick panels of plaque all over her body that constrict her movement and have caused some problems around circulation, especially as she has been growing. She is highly susceptible to infection and she has a hard time retaining fluids and regulating temperature. For this she is kept in a humidity-controlled isolette. The plaque has also made putting in lines to put in and take out fluids, meds, and blood incredibly difficult. Underneath the plaque, however, she has “normal” skin—the severity of the condition will reveal itself as the plaque comes off (which is a whole ordeal in and of itself, but it requires more Aquaphor than I knew existed in the world).

 

We are currently in housing a few blocks away from Olivia provided by a partnership between UCSF and a local non-profit. Casey and I are trying our best to make a routine for Oscar and find a rhythm in the hustle and bustle of the city—a bit of shock after being in Carmel Valley for so long.

 

Realistically, we will be temporarily re-located to San Francisco for 3-4 months. This will likely be followed by frequent visits to the city for doctor’s appointments and specialist care.

 

We are so grateful for the generosity and support we are receiving from our communities. The music community, the people of the Monterey Peninsula, our families and extended families, and friends-that-are-basically-family from near and far, and even complete strangers that have contributed to the GoFundMe.

 

It has been suggested to us to increase the goal on the GoFundMe now that we know that we will be in San Francisco for much longer than expected. We appreciate prayers for our little girl as she continues to make progress every day.

 

Specific prayer requests for our family at this time: Olivia’s fingers and toes and Oscar’s transition to being a city mouse after only knowing the life of a country mouse.