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!