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Baby Olivia's Medical Support

$36,888 of $40,000 goal

Raised by 339 people in 10 months
Created December 29, 2017
Natalie, Casey, and Oscar unexpectedly welcomed Baby Olivia Mercedes into the world on December 26, 2017 at 32 weeks. Despite a normal pregnancy, Natalie went into pre-term labor. With the great care of her midwifery team, Natalie had a quick and normal delivery of Olivia at Community Hospital of Monterey Peninsula (CHOMP). Upon delivery, however, it was clear that Baby Olivia has a rare skin disorder. We are still learning about her condition. Quickly after birth she was air transported to the NICU at UCSF where she is currently undergoing intensive care with multiple teams of doctors. Although she has the best teams of doctors and nurses, her health status is changing hour-by-hour. Olivia is currently intubated in the NICU and is in an isolette in strict isolation.

Already expenses are mounting for this family of four as they navigate insurance, housing/lodging, food, traveling/parking in an expensive city far away from home. 

Natalie and Casey are working with social workers to figure out housing while Olivia is undergoing treatment at UCSF. As of right now, it is anticipated that she will be needing intensive care for several months. 

Oscar is excited to meet his little sister and Casey and Natalie are eagerly awaiting the day that they can hold their baby girl!

I am happy to help coordinate any communication with Natalie and Casey at this time. As you can expect, they are taking in a lot of information hour-by-hour and are grateful for your support.
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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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We haven’t updated you all in awhile, largely because things have been pretty uneventful around here in terms of Olivia’s health (praise God!). She continues to grow (sometimes a lot, but most of the time in small increments). Her feeding continues to be a point of frustration for everyone but her considering that she will eat pretty much anything offered to her as long as it’s not in a bottle... She is becoming and more and more social every day. She’s cooing which is an indication that her hearing has not been as affected as we originally thought. And she gives up huge belly laughs for Casey and giggles for everybody else. Her big blue eyes always catch the attention of strangers much like Oscar’s do. She has a spirit to her that draws people in. Olivia is certainly an even-tempered baby and it makes you baffle at how a little being can go through so much pain and suffering and still be so joyful and easygoing. Her skincare routine has gotten easier as we have continued to find what works, but we are definitely thrown for a loop when there is a drastic change in weather or if she gets sick at all.

Two big things that we really wanted to share with you all since this has been such a huge piece of support for our family is that 1) we got to go to the ichthyosis conference hosted by the Foundation for Ichthyosis and Related Skin Types (FIRST) in Nashville at the end of June/beginning of July and 2) we will be moving to Nashville in August.

Thanks to your generosity (and the generosity of our parents!!) we were able to swing last minute airfare and registration to the conference. I am so glad that we did. Although the informational sessions were educational and helpful, the most invaluable part of the conference was the opportunity to connect with other families that are affected by ichthyosis. Olivia and I got to meet other people affected by Harlequin ichthyosis and other babies around Olivia’s age that are affected by other types of ichthyosis. There are a lot of different kinds of ichthyosis and there is still very little we know about these skin conditions. This year there were 7 attending with Harlequin ichthyosis, 2 under a year of age - this means there are strides happening in the world of ichthyosis BUT a lot of the moms that I talked to were still told that their babies would probably not survive, so we have still have a long way to go in terms of information and advocacy to the medical world. The conference takes places every two years and we look forward to attending in 2020!

Around the time of the conference we were offered an opportunity to move to Nashville, closer to Casey’s parents. I share more about the move to Nashville in my blog at www.coyotesandsaints.com if you want to know more about how we came to that decision. Now we are in full packing and moving mode (including moving Olivia’s medical records to new healthcare practitioners) and figuring out how exactly we are going to afford this move. But, it’s happening and we have a lot of feelings about it.

Thank you again and again and AGAIN for the outpouring of support. We truly, truly would not be able to consider going to the conference or making this move unless we knew we had the support of our loved ones and this far reaching web of community.
Olivia with her grandpa!
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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.

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.

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+
Olivia lovin' baths at home!
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Natalie posted some thoughts and additional pictures of Olivia over on the blog at www.coyotesandsaints.com! Thank you again for the outpouring of love and support. The emotional rollercoaster is being felt even more strongly as the discharge date is coming - excitement to finally be home and to find a new "normal," but also some anxiety as work schedules, medical appointment logistics, and financial hardships continue to need attention. The reality is that as the journey in the NICU comes to an end, a new journey will begin that will probably be even more unpredictable. Please keep Olivia and her family in your prayers as they patiently await discharge and start preparing for the transition back home.
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$36,888 of $40,000 goal

Raised by 339 people in 10 months
Created December 29, 2017
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