We’re preparing to finally bring our newborn daughter home
After two months in the neonatal intensive care unit, we're ready for the change
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Our daughter was born at 27 weeks, and we’ve spent the past two months in the neonatal intensive care unit (NICU). It’s been an emotional and challenging journey, but now we’re finally nearing the end. In the next few weeks, we expect to bring our little girl home. While we’re taking care of the usual preparations — washing her clothes and finishing her nursery — we also have a few extra tasks because of my Cushing’s disease.
Depending on her progress in these final weeks, my daughter may come home with a feeding tube and oxygen, or perhaps nothing at all. She’s currently being weaned off caffeine — which is used to stimulate breathing — and the doctors will observe her for about seven days to ensure she can function without that support. After that, she’ll need to go five more days without any heart rate or significant oxygen drops. If all goes well, we’ll finally get to take her home.
Balancing work, NICU life, Cushing’s disease, writing, and my relationships has been overwhelming, and my own health has often taken a back seat. My husband and I are doing everything we can to make the transition from hospital to home as smooth as possible.
Scheduling and setting expectations
Our top priority is creating a solid schedule. Because I need a block of uninterrupted sleep to manage my Cushing’s disease, we’ve divided the feedings: One of us will handle the midnight and 6 a.m. feeds, while the other takes the 3 a.m. and 9 a.m. shifts. To prepare, I’ve been pumping as much as possible, and we’re investing in a deep freezer to build up a stash for when we’re home.
We’re also adjusting our work schedules to revolve around her needs. My employers are supportive and understand everything I’ve been through, which allows me to take breaks as needed to care for my daughter. We’re planning to spend a few weeks at home to adjust together. Preventing burnout is crucial, because if I overdo it, a flare-up can leave me bedridden for days.
We’re also setting up convenient spaces both upstairs and downstairs so that everything is easily accessible. In our bedroom and guest room, we’ve put together a diaper cart and a bassinet with extra sheets, wipes, baby creams, and other essentials. This setup means I won’t have to run up and down stairs for supplies, which is especially important since I’m still getting used to stairs after being unable to manage them for so long. To make things even easier, we’re adding a mini fridge upstairs for milk and water, so both the baby and I can stay hydrated and nourished.
After everything we’ve been through, I’m simply not in a place to host, and my daughter will need a calm, low-stimulation environment once we’re home. I’m grateful that so many people want to meet her, but that’s not what’s best for her right now. We’ve been letting family and friends know that we won’t be taking visitors for a while.
What I truly want is to sit on the couch as a family, eat too much food, and take a thousand pictures. I need time to heal.
Postpartum looks different for everyone, and our journey has been a wild ride. For us, careful preparation is the best way to safely manage both a preemie baby and a chronic illness.
You can also follow my journey on TikTok and YouTube.
Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.
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