Yesterday we sat down with our team — infectious disease doctor, nurse practitioner, occupational therapist, nutritionist, and at-home care coordinator — to talk about going home.
We’ve been in the hospital for almost five months with Felix (since December 4th). We’ve been through torment, we’ve been through tedium, we’ve been through renewed hope and joy. And for the last month or so, Felix has been doing really well. We’ve become more and more hopeful for his future.
We talked about visiting nurses. We talked about his injections and IV meds. We talked about feeding and infection control and emergency protocols. We talked about the long-term plan.
We have a discharge date and time: this Monday, April 27th, at noon. We will be walking out of the hospital room that has been Felix’s home for the last four months. We will leave behind the gowns and the masks and the gloves. We will touch him with our bare (though frequently-washed) hands for the first time since he was a skinny little newborn.
We will still be living in isolation when we get home. No visitors except for the nurses and grandmas. No Lydia. But we will be close to our friends and family. Only eight minutes away from our little girl rather than two hours away.
I am SO EXCITED. I am SO SCARED.
I can hardly imagine life with Felix outside this hospital room. What does he even look like outside these four white walls? I can hardly imagine life without nurses coming in and out to check on him every couple of hours. We’re going to be in charge of his bottles and medication. We’re going to be his full-time caregivers. That’s a scary prospect with a normal baby; it’s a terrifying prospect with an immune-deficient baby.
We don’t really know how we’ll do things with Lydia. We kind of don’t even want her to know we’re going to be living at home, because how crappy would that feel, knowing your whole family was living at home without you? But how can we get around it? We hope to spend time with her outside the home — at the grandparents’ houses, at the park, at the library.
I’ve seen my house once in the last five months. I don’t even remember how my bed feels.
I’m so excited to be the master of my own kitchen again. That might be the thing I’m most excited about: cooking. Being in charge of what we eat. I can’t wait to not eat cafeteria food again. And although the food and generosity of the Ronald McDonald House will leave me eternally grateful, I’m happy if I never eat mass-produced pasta and caesar salad again in my life.
I wanted to let you know ahead of time, because I imagine we’ll be really busy for the first little while, getting settled back home. This is not a life we ever expected when we got pregnant with our second child.
We’re so grateful to be taking our precious baby home. Thanks so much for your ongoing prayers and support.