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+