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!
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.
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!
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.
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, 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.
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!
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.”
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.
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.
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.
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.