Near 1:30am, Adam tells me it might not be a bad idea to come home. Trying to keep back tears, and stay away from frantic, I gather the stuff I have already scattered across the hotel room. We have only been at Callaway Gardens for the women’s retreat with our church for a few hours at this point. One roommate snores, and the other two help me gather strewn belongings, both of them offering to drive me over an hour back to Atlanta. We have only been on the road ten minutes when we get pulled over for having a headlight out. The officer appears skeptical when we insist that my son is in the hospital, perhaps he gets that story a lot.
Thursday night, Caden slept like a newborn. Awake every two hours, he complained my ear hwurts loudly and often enough that I suggested a visit to the doctor. His checkup that Friday afternoon revealed no earache or fever, but a chest rattle along with slightly lower-than-normal oxygen saturation levels. We called the cardiologist who told us to head to the ER if Caden started acting differently or things took a turn for the worse.
Meanwhile, I headed to Callaway and enjoyed lots of laughter with some neighbors and friends over cheese dip and margaritas (of course) in a tiny-by-the-roadside-sketchy Mexican restaurant on our way. After get-to-know-you games and a pajama party, we camped in our room and chatted until Adam called because Caden was freaking out. He wanted mommy, and couldn't stop coughing. Adam explained over the phone that he felt a little warm and body was shaky-upset. I told Adam that if I were there, we’d already by on our way to the ER. A neighbor came over to watch Jayci, and Adam sat in traffic headed to CHOA while Caden cried and coughed until he finally fell back asleep.
By the time they got to the hospital, the clock tipped past one in the morning, and Caden’s fever had shot up to 102.9. Between his coughing and crying, his oxygen sats were in the 70s, alarming particularly for a heart-kiddo whose normal numbers hover around 98-99. At this point, Adam asked me to come, and I’m not sure he could have kept me away anyhow.
We witnessed enough during the first month of Caden’s life to make it difficult for my mind not to flit quickly to worst-case-scenario. I am calm somehow, but also scared and anxious to be holding my baby. We small-talk and deep-talk and make our way through the darkest-dark with no street lights; until finally we approach the city, bright with neon signs and billboards and cars filling streets even as the clock nears 2:30am. I drop my friend off at her house (just a few blocks from my own), and by this time Caden is sleeping with his temperature and oxygen levels back to normal. He’s still on oxygen and I.V. antibiotics, but my own feverish cough means we are uncertain they will even let me in tonight. Instead, I relieve the neighbor and snuggle Jayci cozy under her blankets. The next morning (or rather, later that same morning), I drop her with my mom before heading to the hospital.
My body somehow recalls viscerally the things that seem in my mind only distant memories or dreams. Circling the parking garage looking for a spot, my heart rate elevates and butterflies flutter in my belly. The ding of the elevator, the smell of the hand soap I use again and again until my hands are raw and scaly but definitely clean. I don't know how, but I somehow nearly forgot the hard and holiness of this space. The big blue button behind Caden’s bed stamped CODE BLUE sends shivers, and I avert my eyes quickly. Clear oxygen tubing snakes behind his ears and under his nose, big pieces of tape hold an IV in place, and his finger glows red from the pulse-ox, while numbers fluctuate gently on the monitor behind him. We are on the oncology floor, because the cardiac unit is full. Which means isolation, and nurses who breathe through masks, and no wagon rides or any leaving the room. The three year old should be climbing the walls, but instead he sits pale and quiet on his bed, playing with the button to lower and raise his feet while he watches football with his daddy.
We realize with jolting clarity how hard Caden’s next surgery will be. He wants his mommy, he needs his daddy, and he screams bloody murder because he cannot fathom what-in-the-heavens they are doing to him. We hold him close, gingerly working around tubes and wires, singing row, row, row your boat in a round, as per his ridiculous request. I notice the tiny freckle between his shoulder blades, and run my fingers through his fine blonde bed-head. I apologize to Jesus for the past three years, and how easily I have forgotten the desperate and constant prayers of the momma with a sick baby. My knees find their way easily back to the floor, and I plead with Jesus not to punish my son for my short-memory, even though I know with stunning certainty that’s not how He works anyways.
The triple-team of cardiologist crowds in his room, all of them in full gown and masks. Everything they say sounds slightly more disconcerting through the pale yellow held over their mouth and nose. Thankfully, they assure us that they are treating this as simply a respiratory infection with pneumonia on top, both unrelated-to, and hopefully not affecting his heart. Because of that, they decide not to do an ECHO while we’re in the hospital, but we should see our cardiologist this week to let him take a look. After all, his sats did hover really low and his last cardiologist appointment showed sharper declines in heart function than they’d like. So this reality, another hospital stay on the horizon, feels sharp and closer than we thought. We stare at the hospital walls and try to entertain Caden in a single room with declining success in direct proportion to his rising health. For which, of course, we could not be more grateful.
So I spend my weekend here beside my son and husband. Nose alternately in a book, singing songs with Caden, and watching Monsters University. We color together and play patty-cake, and quickly say even more prayers for our friends who have to do this longer than three days. I am sad to miss the retreat, I tell Adam. Ironically, the theme was Renewal - something I thought I really needed. I forget, of course, that Jesus knows us better. He knows when we need lessons and time on our knees. When we need our family and each other, and a reminder of just how breathtakingly beautiful the Body of Christ can be. How she, like me, might have more scars or stretch-marks then we’d like to notice or admit. How she can be ugly and petty and certainly competitive or focused on all of the wrong things. But beneath it all, she is also beautiful. She lifts us and carries us, she encourages and covers us with unfailing prayers and reminders of grace.
Mostly, I want to thank-you. For the ways you continue to rally and love and encourage us, even in our darkest moments. The ways that each of you make this road of ministry and parenting and heart-babies easier. Or if not easy, at least shared. I will keep you posted after our cardiologist appointment on Friday, but for now Caden is back to his normal crazy self. His naps are still slightly longer than usual, and he has slept later than 7:15am the past three days in a row (which might be a record), so we are grateful and glad. The antibiotics for his pneumonia seem to be doing their job, and we are still hoping for another year at least before his next surgery. Dont worry, we will keep you guys in the loop as far as what the cardiologist says on that front this week. Thanks again!
Meanwhile, I headed to Callaway and enjoyed lots of laughter with some neighbors and friends over cheese dip and margaritas (of course) in a tiny-by-the-roadside-sketchy Mexican restaurant on our way. After get-to-know-you games and a pajama party, we camped in our room and chatted until Adam called because Caden was freaking out. He wanted mommy, and couldn't stop coughing. Adam explained over the phone that he felt a little warm and body was shaky-upset. I told Adam that if I were there, we’d already by on our way to the ER. A neighbor came over to watch Jayci, and Adam sat in traffic headed to CHOA while Caden cried and coughed until he finally fell back asleep.
By the time they got to the hospital, the clock tipped past one in the morning, and Caden’s fever had shot up to 102.9. Between his coughing and crying, his oxygen sats were in the 70s, alarming particularly for a heart-kiddo whose normal numbers hover around 98-99. At this point, Adam asked me to come, and I’m not sure he could have kept me away anyhow.
We witnessed enough during the first month of Caden’s life to make it difficult for my mind not to flit quickly to worst-case-scenario. I am calm somehow, but also scared and anxious to be holding my baby. We small-talk and deep-talk and make our way through the darkest-dark with no street lights; until finally we approach the city, bright with neon signs and billboards and cars filling streets even as the clock nears 2:30am. I drop my friend off at her house (just a few blocks from my own), and by this time Caden is sleeping with his temperature and oxygen levels back to normal. He’s still on oxygen and I.V. antibiotics, but my own feverish cough means we are uncertain they will even let me in tonight. Instead, I relieve the neighbor and snuggle Jayci cozy under her blankets. The next morning (or rather, later that same morning), I drop her with my mom before heading to the hospital.
My body somehow recalls viscerally the things that seem in my mind only distant memories or dreams. Circling the parking garage looking for a spot, my heart rate elevates and butterflies flutter in my belly. The ding of the elevator, the smell of the hand soap I use again and again until my hands are raw and scaly but definitely clean. I don't know how, but I somehow nearly forgot the hard and holiness of this space. The big blue button behind Caden’s bed stamped CODE BLUE sends shivers, and I avert my eyes quickly. Clear oxygen tubing snakes behind his ears and under his nose, big pieces of tape hold an IV in place, and his finger glows red from the pulse-ox, while numbers fluctuate gently on the monitor behind him. We are on the oncology floor, because the cardiac unit is full. Which means isolation, and nurses who breathe through masks, and no wagon rides or any leaving the room. The three year old should be climbing the walls, but instead he sits pale and quiet on his bed, playing with the button to lower and raise his feet while he watches football with his daddy.
We realize with jolting clarity how hard Caden’s next surgery will be. He wants his mommy, he needs his daddy, and he screams bloody murder because he cannot fathom what-in-the-heavens they are doing to him. We hold him close, gingerly working around tubes and wires, singing row, row, row your boat in a round, as per his ridiculous request. I notice the tiny freckle between his shoulder blades, and run my fingers through his fine blonde bed-head. I apologize to Jesus for the past three years, and how easily I have forgotten the desperate and constant prayers of the momma with a sick baby. My knees find their way easily back to the floor, and I plead with Jesus not to punish my son for my short-memory, even though I know with stunning certainty that’s not how He works anyways.
The triple-team of cardiologist crowds in his room, all of them in full gown and masks. Everything they say sounds slightly more disconcerting through the pale yellow held over their mouth and nose. Thankfully, they assure us that they are treating this as simply a respiratory infection with pneumonia on top, both unrelated-to, and hopefully not affecting his heart. Because of that, they decide not to do an ECHO while we’re in the hospital, but we should see our cardiologist this week to let him take a look. After all, his sats did hover really low and his last cardiologist appointment showed sharper declines in heart function than they’d like. So this reality, another hospital stay on the horizon, feels sharp and closer than we thought. We stare at the hospital walls and try to entertain Caden in a single room with declining success in direct proportion to his rising health. For which, of course, we could not be more grateful.
So I spend my weekend here beside my son and husband. Nose alternately in a book, singing songs with Caden, and watching Monsters University. We color together and play patty-cake, and quickly say even more prayers for our friends who have to do this longer than three days. I am sad to miss the retreat, I tell Adam. Ironically, the theme was Renewal - something I thought I really needed. I forget, of course, that Jesus knows us better. He knows when we need lessons and time on our knees. When we need our family and each other, and a reminder of just how breathtakingly beautiful the Body of Christ can be. How she, like me, might have more scars or stretch-marks then we’d like to notice or admit. How she can be ugly and petty and certainly competitive or focused on all of the wrong things. But beneath it all, she is also beautiful. She lifts us and carries us, she encourages and covers us with unfailing prayers and reminders of grace.
Mostly, I want to thank-you. For the ways you continue to rally and love and encourage us, even in our darkest moments. The ways that each of you make this road of ministry and parenting and heart-babies easier. Or if not easy, at least shared. I will keep you posted after our cardiologist appointment on Friday, but for now Caden is back to his normal crazy self. His naps are still slightly longer than usual, and he has slept later than 7:15am the past three days in a row (which might be a record), so we are grateful and glad. The antibiotics for his pneumonia seem to be doing their job, and we are still hoping for another year at least before his next surgery. Dont worry, we will keep you guys in the loop as far as what the cardiologist says on that front this week. Thanks again!