First there are the challenges of our everyday life:
Adelyn's development has fallen well behind norms, but she continues to make gains each week. She still cannot sit unsupported, but she is keeping her head up, is better able to hold and manipulate her toys, and is learning how to balance. She has three therapy sessions at home every week (physical therapy, occupational therapy, and speech/feeding therapy), and her PT and OT especially enjoy working with her because of her social personality and the progress we can see her making. Adelyn and I enjoy these times too. I learn how to do exercises with her that are appropriate for her ability level, and she gets a good baby massage that eases some of the tension and discomfort she experiences.
Feeding Adelyn continues to be a struggle. She began carefully controlled tastes of purees a while back, but she only eats a couple teeny tiny bites each day. (Her favorites are sweet potato and avocado. She hates zucchini.) It is a painstaking process to coax her to swallow and to keep her experiences around eating positive. Almost 100% of her calories are pumped into her stomach through her G-tube over the course of a hour, six times a day (every three hours during the daytime). We have trouble keeping that milk in her, as she throws up two to four of her meals every single day (and I do mean throw up--it arcs out of her mouth, comes out her nose, sprays the walls, bedding, floors, and soaks herself and us). We do a lot of laundry. Because Adelyn can't sit up on her own, someone is always nearby and on watch to make sure she doesn't choke on her vomit. Then she has movement restrictions to remain upright for 30 minutes following each feed as a precaution. If you're doing the math, that leaves a mere hour and a half for anything else before the whole feeding process begins again. I am still pumping and providing all of Adelyn's breastmilk, which is also very time consuming (and sleep depriving). This is just a sketch of the main points of her nutritional care. Imagine feeding colic-y triplets for a year who never grow out of the newborn stage--that's what it's like.
Adelyn enjoys a picnic.
Adelyn's development has fallen well behind norms, but she continues to make gains each week. She still cannot sit unsupported, but she is keeping her head up, is better able to hold and manipulate her toys, and is learning how to balance. She has three therapy sessions at home every week (physical therapy, occupational therapy, and speech/feeding therapy), and her PT and OT especially enjoy working with her because of her social personality and the progress we can see her making. Adelyn and I enjoy these times too. I learn how to do exercises with her that are appropriate for her ability level, and she gets a good baby massage that eases some of the tension and discomfort she experiences.
Our girl is also followed monthly by Duke's special infant care clinic, sees a slew of specialists, and has bi-weekly weight and head circumference checks at the pediatrician. The parking, check-in, visit, and return home from these doctor appointments invariably takes longer than her 1.5 hour window of not eating, so even if I have timed the trips as ideally as possible, I have to pack us up to do a mobile feed (this includes a cooler of her milk and meds, all her feeding gear, my hand pump, etc). James and I spend a ridiculous amount of time on the phone ordering her medical supplies, waiting in pharmacy lines, dealing with insurance, and slogging through disability assistance applications for her.
Adelyn stretches with her occupational therapist.
Those are some of the pieces that are most likely outside your experience of caring for a baby. But there are still all the other important things like cuddling, bathing, dressing our girl up, celebrating each new tooth, kissing her all over, changing poopy diapers (blowouts galore, ha), making her smile and laugh, reading to her, playing with her, taking her for walks, singing her to sleep, and so on. Never, not even for a second, do we take for granted that we get to do these things with her. We love and treasure each moment with our sweet girl!
Owen is amazing. He is an incredible conversationalist. He will tell you the entire tale of the Wizzard of Oz or Cinderella (which he learned through oral story telling) in compelling detail, or regale you with the facts he knows about Madagascar's biodiversity, and not fail to ask after your health. But he misses China, worries about death and separation from his family, and he craves our constant and full attention (which is of course impossible for any parent to give all the time). Preschool has been an awesome outlet, as it has given Owen peer friendships as well as allowed me to direct my focus elsewhere while he's otherwise entertained.
Meanwhile, James has been busy with figuring out what God wants from us in this season and how to support our family. Though our hearts long to return to East Asia (we in no way feel like that work is finished), Addie's medical needs are just too great. This is a huge transition for our family. Our previous overseas lifestyle and living expenses don't translate back into America well--we've (unsurprisingly) found ourselves insufficiently prepared for this drastic change. So James has been exploring stateside ministry opportunities, interviewing with various teams and organizations, as well as going to school part-time. Oh, and did I mention we're trying to remodel and furnish and move into another place with all the extra time on our hands?
James gave Adelyn a carnation for Valentine's Day.
To make all this work, I take the day shift, and James takes the night shift with Addie. That means in our current little 700 foot, two-bedroom space, I sleep in Owen's room on a spare twin bed. (This has been our living arrangement since this past autumn.) James and I are like ships passing in the night. Or like two channel swimmers who have to cross an ocean with kids along for the ride--one parent towing the others in turns. There is no chance for privacy, for connection, or for healthy communication. Friends? Exercise? Ha. My housekeeping has become deplorable. James does dishes and I do laundry, and that's all there is time for! I'm lucky to get a shower (we do bathe the kids, however). There doesn't even really seem to be an end of the day. Besides all the effort and energy it takes, the worry over the minutiae of our lives is consuming. There are the imagined dangers and the very real threats of jellyfish and sharks without any way to avoid them in either instance. We're just doggedly doggy paddling.
Second, there is the wear-and-tear and the emergencies that make us feel like we are sinking:
The physical and mental pressure is pretty intense. After a couple doctor visits, I discovered that the headaches I've been experiencing, a change in vision, and a broken filling are all stress induced. You may laugh to hear me bemoan my gray hair which is falling out in tufts, but man. All the muscles in my face constantly twitch. Three nights ago (or four? five?) I chewed through a newly prescribed dental guard. Owen struggles with emotional regulation when Adelyn is throwing up, and often tries to block us from assisting her (because it's awful to watch and he hates having our attention suddenly "stolen away.") James carries the omnipresent weight of providing financially while feeling trapped in a set of circumstances he never envisioned for our family. We've attended church together as a family exactly twice since Addie was born. James and I haven't been on a date since our ten-year anniversary last November.
There are lots of gifts that have helped. After we spent our deductible last year, insurance covered the hundreds of thousands of dollars in medical bills. We also qualified for some at home skilled nursing care, which has been invaluable in allowing me to run errands twice a week and to get Owen to and from preschool. And the generosity of family and friends has helped us put food on our table, clothes on our backs, and a roof over our heads (very very literally). We have felt the grace and love of Christ in these demonstrations so tangibly.
Yet just when we feel like we might have found a sandbar where we can put our feet down to rest for a minute, a rip tide grabs us and hurls us even farther out to sea. Once upon a time I would've told myself to take a splash in the face and turn it into a lark, but everyday I am trying not to drown and any unexpected gulp of sea water just makes me choke.
Flu season hit at about the same time unusual weather blew into town. Power outages after a tornado and severe weather caused local schools to shut down, which meant that Owen was home with me, which meant I couldn't take Addie to a long-awaited doctor's appointment because Owen wasn't allowed to accompany me to the hospital and James had class. A similar situation occurred when our area got a small amount of snow. The schools closed, and the nurse who was scheduled to come care for Adelyn canceled because she had kids of her own to watch. I had to cancel a doctor's appointment of my own and was only able to make it to the grocery store that week because my sister swooped in and saved the day.
Owen catches snowflakes on his tongue
during the single snowstorm of the season.
Owen has gotten several colds that worsened quickly and has needed nebulizer treatments frequently. Two weeks ago, he ended up with pneumonia and was unable to catch his breath even after breathing treatments. He was coughing so much he kept throwing up and we struggled to keep him hydrated. Now he's suffering from allergies and the meds necessary to keep his airways open are time consuming (and hype him up). I didn't know whether to laugh or cry the other day when Addie was eating, I was pumping, and Owen was doing his breathing treatment (the humidifier and dehumidifier were running in their respective rooms too)--we had ALL the pumps going at the same time.
Owen calls the nebulizer mask his "chicken dragon," ha.
I broke the filling in a molar and had to seek emergency dental help. I didn't have a dentist, the nursing agency was struggling to cover any shifts for us that week, and Owen's preschool had a couple teacher-in-service days. Finding childcare was nearly an insurmountable challenge to getting my tooth fixed.
Two weeks ago, Adelyn was having some alarming symptoms--worse than usual nausea, elevated heart rate, lethargy, and some swelling at the base of her skull. She and I ended up at the ER, but the pediatric ward was full, and we had to remain in the waiting room for three hours. It took another seven hours to complete the imaging to ascertain it had been a false alarm (for shunt or heart failure). I didn't get to eat, pee, or put my baby down all day, but still had to pump and run all Addie's mobile feeds. James couldn't attend class because someone needed to pick up Owen from preschool and be with him for the remainder of the day. Then to top it all off, I forgot the diaper bag, but James had chosen not to grab Owen's car seat, and so we had to call in all the favors to get ourselves straightened out.
Recently Adelyn's g-tube site began to show signs of irritation, and we've since been fighting skin deterioration and infection around the area.
Meanwhile come the Covid-19 shut downs. We've felt the virus creeping up on us since January as we watched friends and our business partner go through quarantine in East Asia during the initial outbreak there. Our old business has had to switch to online classes in a context poorly equipped for that, and we sympathized with all the challenges our friends were experiencing in the disruption of their lives. Now that the virus has reached us, we are feeling the impact to our own family in acute ways.
In addition to the closing of Owen's preschool and James' classes being canceled, the help we've depended upon for Adelyn has been interrupted. Her weekly therapies have been discontinued indefinitely, a favorite nurse is no longer able to provide care because of exposure, and all of Adelyn's appointments have been moved to after May. I can't even verbalize how disheartening all that is. James had planned to travel back to East Asia during spring break to close up our apartment and retrieve the remainder of our personal belongings. (Due to a sad miscommunication, my spring/summer wardrobe is still overseas. Most of my warm weather clothing here is maternity wear!) But with quarantines on both ends and likely travel bans extending through the spring from both countries, that trip is a near impossibility. Our rental lease ends soon, and we don't yet have a solution to this problem. Worst of all, Owen (with his asthma) and Adelyn with her pre-existing medical complications place our kiddos in a vulnerable category. If we can escape this season without another ER run or hospitalization it will be a miracle.
But third, there is the promise that Christ is in it all:
When I read back over what I've written so far, I fear that I've already shared too much, but feel like I've only scratched the surface of what we're experiencing. I want to see our 11-month-old Adelyn healthy--eating a banana by herself, in a high chair, that is pulled up to a dining table the whole family can fit around. I crave a bowl of liang fen jelly noodles from my favorite hole-in-the-wall restaurant on the other side of the world, and I miss talking about Jesus with my EA friends. I want Owen to have the books, puzzles and toys I made James cart overseas in ridiculously overweight baggage. I want to have purpose beyond keeping my family members alive, and I long for a home and community that feels like my own. I'd prefer to be the one serving others rather than making desperate pleas for help. Instead of doggy paddling, I want to be taking long, powerful, go-the-distance strokes in the water. And I don't want to be so angry that I can't have any of those things right now.
For what is it that I'm promised? That this life would be easy? That the current would never pull me under? That I wouldn't drown? No. I am not promised any of that. Instead I am promised that the One who walked on water is with me. And that is enough.
So maybe we will get through this. Perhaps those who have shown us such love will continue to throw us lifelines. Maybe we'll soon reach that sandy shore. But maybe the storm will worsen and some or all of our family will be lost to the sea. It feels that real to me. Well, then, let me be at peace knowing I doggy paddled til there was nothing left, and if I sink, that I sank calling out to Christ whom I trust with my family, my life, and my death.
Prayer Requests
Please continue to pray for Adelyn Gray and our family:
1. One happy result of Adelyn's most recent ER run was that the imaging showed her brain has rebounded dramatically. Her ventricles have shrunken significantly, and her brain has more than quadrupled in size since birth. This is really, really, really great news, and made both James and I cry to see it represented visually. Praise God! Please pray that her brain continues to grow and develop healthily!
2. Pray for Adelyn's strength and development. The suspension of Adelyn's therapies is a huge blow to her comfort, growth, and maturation. While some of Adelyn's therapists may have the ability to video call in advice, that is no substitute for the care they have provided Adelyn. As I do my best to fill in the gap, ask for grace and wisdom and supernatural intuition. Ask that the therapists are able to safely return to making home visits soon.
3. Pray that Adelyn will suddenly and miraculously start eating by mouth! It was our intention to begin treatment at UNC's feeding clinic after our many dead ends in this aspect of her growth. Her continued vomiting has made eating just an awful daily experience that consumes much of her (and our) time. Alas, the hospitals, clinics, therapists and doctor offices have canceled or rescheduled all appointments until after May. I can hardly believe we will have to wait at least 60-90 days before we can even begin to address Adelyn's feeding issues again. Please ask that God will work miracles while the medical field is semi-closed to us.
4. Please ask that Adelyn will continue to qualify for the programs, therapies, equipment, and nursing she needs to thrive at home, pray that the health system is able to catch up so that her therapies especially will be able to resume, and that these services will be covered by insurance. Specifically ask that the shut downs do not negatively impact the processing of her CAP/C application, which is due in April, has been a year in the making, and is nearly completed.
5. We are moving this weekend. What terrible timing. It has not been easy or convenient to repair, furnish, and outfit our new place from scratch in this season of our lives. Add store closings, empty grocery shelves, and social distancing to the mix and we are really in a pickle. No couch, no mattresses, no TV, no food storage, no pantry staples, no toilet paper, no time... We are really looking forward to being in a larger space, and how grateful we are for the chance to make ourselves a home, but please pray that the stress of trying to improve our circumstances is not our undoing. Also ask for blessings to be heaped upon our landlord and his family as we say goodbye to "the duplex," for they have been the epitome of generosity and hospitality.
6. Please pray for God's protection and for His provision in all the Rosenbergs' needs!
Help
1. Thank you to all who have given a gift of diapers and/or wipes! Your generosity is overwhelming. Adelyn has more than enough for the next two years! (Updated April 8, 2020)
2. Check in on those vulnerable to or most affected by Covid-19: the elderly, the chronically ill, the hourly wage folks whose jobs are threatened, and the medical professionals who are bearing the weight of this pandemic. Be generous when you see a need. And even if you aren't someone at risk, follow your government's and the CDC's recommendations, because that's how you help keep folks (like the kiddos in our family) safe!
3. Please, at this time, do not send me an idea for another craft, or website, or book, or song... Or do! But please don't oversimplify the difficulty of this season of our lives by thinking that sharing those things is the fix I need. My parenting is not suffering from a lack of inspiration or resources, it is suffering from a shortage of hours in the day, an inability to clone myself or be two places at once, and no way to resolve either of those challenges. That is all. ;)
Please continue to pray for Adelyn Gray and our family:
1. One happy result of Adelyn's most recent ER run was that the imaging showed her brain has rebounded dramatically. Her ventricles have shrunken significantly, and her brain has more than quadrupled in size since birth. This is really, really, really great news, and made both James and I cry to see it represented visually. Praise God! Please pray that her brain continues to grow and develop healthily!
This before (R) and after (L) comparison shows that
Adelyn's brain has been recovering as well as could be hoped!
2. Pray for Adelyn's strength and development. The suspension of Adelyn's therapies is a huge blow to her comfort, growth, and maturation. While some of Adelyn's therapists may have the ability to video call in advice, that is no substitute for the care they have provided Adelyn. As I do my best to fill in the gap, ask for grace and wisdom and supernatural intuition. Ask that the therapists are able to safely return to making home visits soon.
3. Pray that Adelyn will suddenly and miraculously start eating by mouth! It was our intention to begin treatment at UNC's feeding clinic after our many dead ends in this aspect of her growth. Her continued vomiting has made eating just an awful daily experience that consumes much of her (and our) time. Alas, the hospitals, clinics, therapists and doctor offices have canceled or rescheduled all appointments until after May. I can hardly believe we will have to wait at least 60-90 days before we can even begin to address Adelyn's feeding issues again. Please ask that God will work miracles while the medical field is semi-closed to us.
4. Please ask that Adelyn will continue to qualify for the programs, therapies, equipment, and nursing she needs to thrive at home, pray that the health system is able to catch up so that her therapies especially will be able to resume, and that these services will be covered by insurance. Specifically ask that the shut downs do not negatively impact the processing of her CAP/C application, which is due in April, has been a year in the making, and is nearly completed.
5. We are moving this weekend. What terrible timing. It has not been easy or convenient to repair, furnish, and outfit our new place from scratch in this season of our lives. Add store closings, empty grocery shelves, and social distancing to the mix and we are really in a pickle. No couch, no mattresses, no TV, no food storage, no pantry staples, no toilet paper, no time... We are really looking forward to being in a larger space, and how grateful we are for the chance to make ourselves a home, but please pray that the stress of trying to improve our circumstances is not our undoing. Also ask for blessings to be heaped upon our landlord and his family as we say goodbye to "the duplex," for they have been the epitome of generosity and hospitality.
6. Please pray for God's protection and for His provision in all the Rosenbergs' needs!
Help
1. Thank you to all who have given a gift of diapers and/or wipes! Your generosity is overwhelming. Adelyn has more than enough for the next two years! (Updated April 8, 2020)
2. Check in on those vulnerable to or most affected by Covid-19: the elderly, the chronically ill, the hourly wage folks whose jobs are threatened, and the medical professionals who are bearing the weight of this pandemic. Be generous when you see a need. And even if you aren't someone at risk, follow your government's and the CDC's recommendations, because that's how you help keep folks (like the kiddos in our family) safe!
3. Please, at this time, do not send me an idea for another craft, or website, or book, or song... Or do! But please don't oversimplify the difficulty of this season of our lives by thinking that sharing those things is the fix I need. My parenting is not suffering from a lack of inspiration or resources, it is suffering from a shortage of hours in the day, an inability to clone myself or be two places at once, and no way to resolve either of those challenges. That is all. ;)
