A Note from Natalie: Onward and Upward

Since our last update, some very exciting things have happened! The reason that this is a little late is because I wanted to wait to post until after the meeting we had today.

First the stupid stuff: Casey’s bike got stolen and I got sick AGAIN. Womp womp. Super lame. We are recovering, but I am probably most bummed about Casey’s bike. That was his affordable healthy outlet and quick transportation around the city. We are in the process of filing a police report and a claim with our renter’s insurance.

But onward and upward!

Olivia’s room is off of contact isolation. This means no more sterile gloves, no more gowns, and no more sterile water and wipes. Although Olivia still has a feeding tube, her feeds are increasing in volume and decreasing in duration. We have had some really promising moments breastfeeding and she is taking a bottle well. Due to her high caloric needs, Olivia will likely need to have a few bottles a day to supplement what I am able to provide breastfeeding. Olivia is also able to get tub baths now, which is great because tub baths are so much more effective for exfoliating and cleaning her skin. Most of the plaques have now come off and we can really see her eyes, ears, and nose. She needs less and less outside support for her breathing. The humidity in her isolette is gradually being weaned so that she can be in a regular crib. This is new territory for the NICU team because they do not usually keep a 38-week (gestational age) baby in an isolette for this long. But Olivia loses fluids through her skin at a rate that typical babies don’t. I feel so thankful for a group of doctors and nurses that don’t want to rush through anything and really does let the baby, the person, guide the decisions. And Olivia really does show us when it is time to move to the next step.

The meeting today was about the milestones Olivia needs to hit before being discharged (no more apneas, no longer dependent on a feeding tube and tolerating all her feeds, and acclimating to life outside of the isolette) and preparing us for what life will be like when we go home. We still don’t know exactly when that will be, and it is both exciting and scary to think about being home without the hands-on support of the incredible nurses at USCF. Life will eventually go on and we will find our new normal, but I know it will take a lot of time and patience. And lots of doctor’s appointments. Realistically, we will be here through part of March.

The last weeks haven’t brought good news for just Olivia though. When we were first touring the housing facility where we have been staying, Anna, our tour guide, was saying that when they built the building they had purposefully set it up so that little “neighborhoods” were created. I kind of (internally) rolled my eyes when she said this. Would we really get to know anyone that well? I should know to never underestimate the power of community.

A few weeks back we excitedly welcomed one of two twins to the floor. His brother is still in the same unit as Olivia, but this twin gets to be snuggled with his mama and go and see the world! On Saturday night we celebrated with a family on the floor as their 16-year-old daughter was in recovery from a double lung transplant. They have been here since this fall waiting for the phone call and finally it came. Within hours of the phone call, she was being prepped for surgery. Her father was bursting with joy as he shared the news with us – a joy that I don’t think I have ever seen before. A burden had been lifted from him that you could physically see. We hugged and laughed, wiped away tears, and congratulated him.

Just days before he had seen me with a luggage cart and excitedly asked if we were leaving. See, around here, as much as you cherish these friendships you have forged in the midst of hardship, in the end you want so desperately to say goodbye to each other because that means that our babies are okay. I told him, no, we weren’t leaving yet. We were just bringing in some stuff from the car. Last night, as we were leaving the kitchen we wished 5-year-old Isaac good luck and shared our prayers with him because this morning he had open-heart surgery. Today I ran into his dad, grandma, and little sister in the hospital elevator. Isaac had his surgery and is stable this evening.

This road can be so lonely, but these little “neighborhoods” within a temporary living facility have come to be a shining light for each of us. As Dorothy Day wrote, “We have all known the long loneliness and we have learned that the only solution is love and that love comes with community.”

Blessings,
Natalie

+JMJ+

P.S. If you aren’t an organ donor, please reconsider and go sign up. Right now. Your lungs could be the second chance at life for a 16-year-old. If you haven’t donated blood in awhile, go and do it because that blood may be the transfusion a little 34-week corrected gestational baby may need to fight through the night.

You can read more about Dorothy Day and her movement based around radical hospitality and community here: http://www.catholicworker.org/dorothyday/dd-biography.html