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Baby Olivia's Medical Support

$34,488 of $40,000 goal

Raised by 334 people in 9 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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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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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!
Olivia's first walk "off monitor"
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Raised by 334 people in 9 months
Created December 29, 2017
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