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.
Sunday, July 26, 2009
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.
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.
home tomorrow
as emailed July 21
We're thrilled to announce that as long as there are no other issues today or tonight, we'll be bringing Moriah Pearl Winchell home tomorrow!
Please continue to pray with us for stable heart/oxygen levels...if she has even one episode of unusual O2 or heart rate numbers, we have to stay 5 more days automatically. Pray for a calm, peace-filled day and night for her, as we would love, love to be on our way out of the hospital tomorrow.
We're not sure how to thank you all for helping us in these last 10 days...we continue to be grateful for all you've said and done and consider ourselves some of the most blessed people in the world, to have a community of friends and family as we have. We are thanking God today for all the ways He continues to provide for Moriah, and for us.
We're thrilled to announce that as long as there are no other issues today or tonight, we'll be bringing Moriah Pearl Winchell home tomorrow!
Please continue to pray with us for stable heart/oxygen levels...if she has even one episode of unusual O2 or heart rate numbers, we have to stay 5 more days automatically. Pray for a calm, peace-filled day and night for her, as we would love, love to be on our way out of the hospital tomorrow.
We're not sure how to thank you all for helping us in these last 10 days...we continue to be grateful for all you've said and done and consider ourselves some of the most blessed people in the world, to have a community of friends and family as we have. We are thanking God today for all the ways He continues to provide for Moriah, and for us.
update on Moriah
as emailed July 21
Moriah continues to make progress; I'm waiting to meet with the doctor today, but as of yesterday, we are waiting on her bilirubin numbers to lower a bit before going home. He was hopeful we may go home later this week (tomorrow? Thursday?), UNLESS her numbers climb, in which case, she'll need a GI ultrasound of her liver. Since those are not done at Beverly, that would mean we'd be back to Boston...either as an inpatient or as an outpatient. I'm praying she's healthy enough that they'll let her be discharged, and if we need to follow-up with her GI, we can do it as an outpatient appointment later this week or next.
The doctor decided yesterday that Moriah no longer needed bottles and the little bits of formula they were adding to my bottled milk for 'calories.' They're allowing her to exclusively breastfeed now, which is a triumph for her, and for us. And the new feeding schedule and protocol takes SO much less of my time and energy. They're allowing her to feed more on demand (as long as she's demanding within 3-4 hours of the last feeding) rather than waking her every 3 hours to feed. So I'm feeling a bit freer today and a bit less like I'm force feeding the poor girl.
Moriah continues to make progress; I'm waiting to meet with the doctor today, but as of yesterday, we are waiting on her bilirubin numbers to lower a bit before going home. He was hopeful we may go home later this week (tomorrow? Thursday?), UNLESS her numbers climb, in which case, she'll need a GI ultrasound of her liver. Since those are not done at Beverly, that would mean we'd be back to Boston...either as an inpatient or as an outpatient. I'm praying she's healthy enough that they'll let her be discharged, and if we need to follow-up with her GI, we can do it as an outpatient appointment later this week or next.
The doctor decided yesterday that Moriah no longer needed bottles and the little bits of formula they were adding to my bottled milk for 'calories.' They're allowing her to exclusively breastfeed now, which is a triumph for her, and for us. And the new feeding schedule and protocol takes SO much less of my time and energy. They're allowing her to feed more on demand (as long as she's demanding within 3-4 hours of the last feeding) rather than waking her every 3 hours to feed. So I'm feeling a bit freer today and a bit less like I'm force feeding the poor girl.
Sunday's update
as emailed July 19
Moriah will definitely be in the hospital overnight again tonight, but she's getting closer to going home. She's gained so much weight they're concerned it's fluid retention and not 'real' weight (hilarious...they wake me up every 3 hours to feed her at least 2 ounces, and then are worried she's too fat!), and watching her bilirubin numbers (for jaundice and liver function). Otherwise, Moriah's doing so well...out of the woods in terms of feeding/dehydration (they don't check her glucose numbers anymore, which saves us 8 skin sticks a day) and breathing well, too. She'll still need open heart surgery in a few months, but we are so grateful for her current health and so excited that we might bring her home sometime this week. I'll be glad just to sleep in my own bed; the sofa-bed here at the hospital is not much fun. :)
Moriah will definitely be in the hospital overnight again tonight, but she's getting closer to going home. She's gained so much weight they're concerned it's fluid retention and not 'real' weight (hilarious...they wake me up every 3 hours to feed her at least 2 ounces, and then are worried she's too fat!), and watching her bilirubin numbers (for jaundice and liver function). Otherwise, Moriah's doing so well...out of the woods in terms of feeding/dehydration (they don't check her glucose numbers anymore, which saves us 8 skin sticks a day) and breathing well, too. She'll still need open heart surgery in a few months, but we are so grateful for her current health and so excited that we might bring her home sometime this week. I'll be glad just to sleep in my own bed; the sofa-bed here at the hospital is not much fun. :)
in Beverly
as emailed July 18th
Moriah and I both made it out of Boston yesterday, and were reunited at Beverly's Special Care Nursery by dinnertime last night. It was an exhausting night...we were both so tired, and made more tired by keeping up with a 3-hour feeding schedule. But there is SO much good news about Moriah, and after catching a few hours of sleep last night, I'm feeling so much more rested again.
Moriah will be able to come home when she is off an IV, maintaining her own glucose levels from our feedings, and keeping herself warm. Overnight, she came off the IV, and so far today, is maintaining her sugar levels (yay for milk!) AND keeping herself warm, though she's bundled up like a little Eskimo. I am so, so proud of her! We're figuring out a new feeding ritual, so that she's not burning too many calories on feeding, and getting the energy she needs to sustain herself, and now that I've wrapped my head around the changes, it's working beautifully.
Moriah and I both made it out of Boston yesterday, and were reunited at Beverly's Special Care Nursery by dinnertime last night. It was an exhausting night...we were both so tired, and made more tired by keeping up with a 3-hour feeding schedule. But there is SO much good news about Moriah, and after catching a few hours of sleep last night, I'm feeling so much more rested again.
Moriah will be able to come home when she is off an IV, maintaining her own glucose levels from our feedings, and keeping herself warm. Overnight, she came off the IV, and so far today, is maintaining her sugar levels (yay for milk!) AND keeping herself warm, though she's bundled up like a little Eskimo. I am so, so proud of her! We're figuring out a new feeding ritual, so that she's not burning too many calories on feeding, and getting the energy she needs to sustain herself, and now that I've wrapped my head around the changes, it's working beautifully.
Friday, July 24, 2009
settling in Boston
(as emailed July 14th)
"Before I turn in for the night, I want you to know we had a very encouraging day with Moriah today. I was transferred to Boston via ambulance this morning, arriving here about 11 am. When the Brigham had not yet admitted me to a room after a 2-hour wait, the anxiety of sitting in a room surrounded by new moms with crying babies was more than I could bear, and I walked out of the Brigham (well, actually, Jason wheeled me out) and crossed the foot bridge to Children's Hospital to be with our daughter. She is doing well--she's off oxygen, which meant I was able to pick her up. It's very hard to explain the relief it brought to hold Moriah after 24 hours of being unable to do so. She remains in the Cardiac ICU, but is stable and we are hopeful.
Today was full of grace-surprises. A friend's brother who works as a doctor at Children's texted to say he had been with her and prayed for her before we reached her today. A lactation consultant I loved came while we were with Moriah to teach me to breastfeed, and to advocate to allow me to be the primary source of food for Moriah in the coming days. There were nurses who let me cry, and kept me from crying, and friends who've walked this road and who could offer perspective, love, and the name of a top-notch cardiologist. All of these were suprising encounters with grace, showing us again that where sadness lingers, love grows, too."
"Before I turn in for the night, I want you to know we had a very encouraging day with Moriah today. I was transferred to Boston via ambulance this morning, arriving here about 11 am. When the Brigham had not yet admitted me to a room after a 2-hour wait, the anxiety of sitting in a room surrounded by new moms with crying babies was more than I could bear, and I walked out of the Brigham (well, actually, Jason wheeled me out) and crossed the foot bridge to Children's Hospital to be with our daughter. She is doing well--she's off oxygen, which meant I was able to pick her up. It's very hard to explain the relief it brought to hold Moriah after 24 hours of being unable to do so. She remains in the Cardiac ICU, but is stable and we are hopeful.
Today was full of grace-surprises. A friend's brother who works as a doctor at Children's texted to say he had been with her and prayed for her before we reached her today. A lactation consultant I loved came while we were with Moriah to teach me to breastfeed, and to advocate to allow me to be the primary source of food for Moriah in the coming days. There were nurses who let me cry, and kept me from crying, and friends who've walked this road and who could offer perspective, love, and the name of a top-notch cardiologist. All of these were suprising encounters with grace, showing us again that where sadness lingers, love grows, too."
Moriah update
(as emailed July 14th)
I'm emailing to let you know that overnight, Moriah was moved from Beverly Hospital to a pediatric cardiac floor at Children's Hospital in Boston. She has Atrioventricular Canal Defect, meaning that she has two large holes in her heart--one in the ventricular wall, and one in the atrium wall, which is allowing oxygen-rich and oxygen-poor blood to be always mixing (hence the cause of her low oxygen levels yesterday). Also, she has some 'confused' arteries around the heart that are sending blood to the wrong places. Last night we learned she will require open heart surgery to correct the defect, though the doctors hope to wait until she is bigger (at least 4 months) to perform it. Until then, the cardiologists at Chilldren's are going to help us develop a plan for helping her to eventually leave the hospital, to breathe well enough on her own, and to get enough calories for growth.
We were heartbroken to see Moriah leave last night, as you can imagine. For now, I'm sill here in Beverly, though the doctor here is trying to get me a transfer to Brigham's, so I could be closer to Moriah and see her more easily. It would be easier on our entire family if Moriah and I were in adjoining hospitals in Boston; I'm hoping I can transfer there today.
I'm emailing to let you know that overnight, Moriah was moved from Beverly Hospital to a pediatric cardiac floor at Children's Hospital in Boston. She has Atrioventricular Canal Defect, meaning that she has two large holes in her heart--one in the ventricular wall, and one in the atrium wall, which is allowing oxygen-rich and oxygen-poor blood to be always mixing (hence the cause of her low oxygen levels yesterday). Also, she has some 'confused' arteries around the heart that are sending blood to the wrong places. Last night we learned she will require open heart surgery to correct the defect, though the doctors hope to wait until she is bigger (at least 4 months) to perform it. Until then, the cardiologists at Chilldren's are going to help us develop a plan for helping her to eventually leave the hospital, to breathe well enough on her own, and to get enough calories for growth.
We were heartbroken to see Moriah leave last night, as you can imagine. For now, I'm sill here in Beverly, though the doctor here is trying to get me a transfer to Brigham's, so I could be closer to Moriah and see her more easily. It would be easier on our entire family if Moriah and I were in adjoining hospitals in Boston; I'm hoping I can transfer there today.
welcoming Moriah
(as emailed on July 13th)
Dear Family and Friends,
This morning at 8:48 we welcomed Moriah Pearl Winchell into the world and into our family (Moriah, Hebrew for 'chosen by God' and an important mountain in Jewish history, symbolizing God's provision when needed most; Pearl, after my late paternal grandmother). We're happy to report that she is adorable--a long, skinny baby at 20 inches and 6 pounds, 15 ounces. She's got a bit of my strawberry blond hair, and we fell immediately in love with her.
We were very surprised to learn soon after her birth that Moriah is also a baby with Down's Syndrome. We so appreciate your support and prayers during these next days of adjustment to this news; as I write this, Moriah has been moved to a special care nursery for low oxygen levels and is undergoing tests to determine the cause--the doctors suspect a heart defect. Please continue to pray for a healthy baby for Team Winchell!
We'd love to hear from you; as you can imagine, I'm quite tired after the C-birth this morning, but would welcome emails and posts to Facebook especially.
Thanks for your friendship and love. We love you.
Peace,
Melissa for Team Winchell"
Dear Family and Friends,
This morning at 8:48 we welcomed Moriah Pearl Winchell into the world and into our family (Moriah, Hebrew for 'chosen by God' and an important mountain in Jewish history, symbolizing God's provision when needed most; Pearl, after my late paternal grandmother). We're happy to report that she is adorable--a long, skinny baby at 20 inches and 6 pounds, 15 ounces. She's got a bit of my strawberry blond hair, and we fell immediately in love with her.
We were very surprised to learn soon after her birth that Moriah is also a baby with Down's Syndrome. We so appreciate your support and prayers during these next days of adjustment to this news; as I write this, Moriah has been moved to a special care nursery for low oxygen levels and is undergoing tests to determine the cause--the doctors suspect a heart defect. Please continue to pray for a healthy baby for Team Winchell!
We'd love to hear from you; as you can imagine, I'm quite tired after the C-birth this morning, but would welcome emails and posts to Facebook especially.
Thanks for your friendship and love. We love you.
Peace,
Melissa for Team Winchell"
Thursday, July 9, 2009
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