at home

The adrenaline rush of being in the hospital for nearly two weeks is subsiding, and Jason and I are finding ourselves left with a tiredness we can't shake, and a beautiful baby for whom we feel enormously responsible and protective.

We're so grateful to be home. I do miss the singularity of mind that came with hospital living (I remember feeling this way, too, when I came home with Orilus after two months of life on the transplant floor--the hardest transition is going from having one person as the singular focus of your day to returning to family and multiple schedules/needs/personalities/demands). It's been difficult to try to balance mothering a new baby with mothering two pre-teen boys; I haven't yet resolved this tension and am sure it's one I'll feel for many weeks (months? years?) to come. We've been so blessed by friends and family who have offered in the last week to take the boys out of the house for a few hours; it's given me time to feed Moriah uninterrupted by arguments and body slams :) and helped me to find pockets of time to rest on the couch. Ah, to sit on my own couch! Here, I can answer the phone AND eat AND take care of the baby, all from one place--in the NICU, I had to choose whether to be with Moriah OR answer my phone (outside the NICU) OR eat (which required leaving the unit entirely). Here, at least, I can multi-task, though I'm sure it's adding to this sense that I have lost a singularity of purpose, as I'm back to doing more than one thing at once (this morning, eating an English muffin while feeding her, for example). The challenge, then, is to regain the singularity of mind and heart even when the to-do list is much more complex and the demands on my energy are more varied.

We've visited the pediatrician for the first time, and we were so grateful for his kind words and encouragement. It's so much more helpful when those around us acknowledge Moriah's diagnosis and express their concern and sympathies, and we were so thankful for a doctor who seemed to understand this immediately, and grabbed us in huge bear hugs from the start. Being home has had its share of sad and poignant moments--the first time I went to lie Moriah in her bassinet next to our bed, I realized with an acute stab of sadness that she was not the baby I had anticipated lying there during the last weeks of pregnancy. Sometimes, this grief--between what we had expected, and what we have been given--creeps in. We cry when we need to. But mostly, we continue to laugh, to rest when we can, and to find great grace in the people around us, who call, send meals, take our boys out, and email continued encouragement. And we pray a lot.

Tomorrow Early Intervention will visit us for the first time, beginning what will be three years of at-home physical therapy for Moriah. I also have my 2-week follow-up appointment tomorrow (only two weeks since my C-section?! It truly feels like months), and I'm happy to report that I'm feeling well, am no longer taking any pain medication, and am moving about normally (though Jason keeps reminding me to sit and lie around, as he feels I never got a real "recovery" with all the running back and forth between hospitals in the last week and a half). It IS a grace to finally be resting at home, to sleep in my own bed, and to benefit from my husband's round-the-clock care.

Moriah is eating every 3 hours, and sleeping about 6 hours at night before waking for a feeding--in this way, I'm getting in at least the minimum number of feedings she needs a day, per the NICU doctors (6), and getting some sleep, too. We're in the market for a baby scale...my most important work in the next months is to help Moriah gain weight, and I'd like to be able to be sure she's doing that here at home. If you have a used one we could borrow, please let us know.

Thank you for your continued prayers, friends! We're just now beginning to read all the literature we received on Down's Syndrome and on her heart condition (atrioventricular canal defect, or ACD); we're trying still to struggle with the tension of present-mindfulness and future planning. We'd mostly appreciate your prayers for quality time with our boys this week, and a sense of bonding to permeate our entire family, as the daily routine hopefully begins to resemble a new normal this week. Pray for peace of mind and heart for the Winchell household!

We are humbled by this entire experience, especially by the ways in which so many have reached out to us. In the coming weeks, we hope to do better at keeping in touch, hosting visitors, and resuming some sort of social life. :) We are grateful to be so well-loved.

we're home

as emailed July 24

We arrived home with Moriah yesterday afternoon! We're working at getting settled...lots of appointments/interventions/doctors to contact, and we're working to get our bearings now in the non-hospital world.

Moriah is doing great. She continues to eat well, and slept most of last night. I'm mostly adjusting to having Moriah 'free' of wires/leads/cords...so much fun to hold her without having to worry about things dangling from her body. We're so happy for her to be home. Truthfully, now and then a sadness comes over us...like listening to the doctor yesterday describe the signs of heart failure we must watch for (as heart failure will begin to happen prior to her surgery), or hearing a social worker describe our daughter as having a 'disability' (the first time the word was used), or today, at the pediatrician's, when our doctor embraced us and said that we have certainly been given more than our fair share of burden to carry. These are moments when we remember that yes, we are on a long, long road, and that things are not necessarily as simple as they seem to be.

And so we do appreciate your prayers as we continue to love Moriah, and to make decisions for her. We're scheduled for further tests next week, the cardiologist's the week after...within a couple weeks, Moriah will begin to take medications for her heart (the bigger she gets, the more her heart will strain to keep up, until she'll require surgery in order to keep growing). After the cardiologist's appointment in 2 weeks, we'll know more about when her surgery will occur--most likely in September or October.