Tag: updates

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+

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.