Because sometimes you just have to make your own rainbows...
February 28, 2011
February 25, 2011
Forever. Better.
I had forgotten what it sounded like, the hum of the refrigerator. It is all that fills the deafening silence that descends upon our house once Channing succumbs to his afternoon nap. The little peels of laughter and never ending chorus of 'watch this mommy' drown it out until nap time arrives. Back in September, the rubber grind of Sophie's feeding pump pushed that of the refrigerator into the background. Every three hours, for half of an hour, grumble-grumble-grumble-pause-pause, grumble-grumble-grumble-pause-pause, the plastic wheel moving my milk through the rubber tubing to fill her hungry belly.
As the months progressed and more equipment amassed, the litany of sounds grew to include a pulse oximeter with its humming fan and alarm. Its descending notes, a beep-beep-beep-be-beep, that called out when Sophie's numbers dipped too low. Occasionally, the clatter of the hospital-grade suction machine would chime in, the mucus from GI reflux too thick to be cleared on its own. Sophie's personal melody rose and fell over the din, most of the time sounding like the bleat of a newborn goat.
On sunny afternoons such as today, we'd cozy up together on the sofa. With her tiny body nestled into the crook of my arm, head tucked carefully into the curve of the side of my neck, I'd tease her about her obnoxious snoring, first telling her she put her daddy's almost theatrical racket to shame, then admitting I'm a hundred decibels louder than he is when I'm pregnant. Oh yes, she knows how, when she was gently floating in my belly, I'd snore so loud I'd wake even myself.
Closing my eyes, I can still feel the weight of her body on my chest. Oh my bitty little girl...
We will never be the same as before this loss, but we are forever better for having had something so great to lose.
Forever.
Better.
Until this pain evolves into what is anticipated to be a dull and constant ache, we will seek out the bright spots that glimmer through the grief that brings us to our knees. Chocolate ice cream covered faces. Dappled sunlight.
Thank you to our family and our friends for your continuous outpouring of love and support. We are blessed. We are truly blessed.
As the months progressed and more equipment amassed, the litany of sounds grew to include a pulse oximeter with its humming fan and alarm. Its descending notes, a beep-beep-beep-be-beep, that called out when Sophie's numbers dipped too low. Occasionally, the clatter of the hospital-grade suction machine would chime in, the mucus from GI reflux too thick to be cleared on its own. Sophie's personal melody rose and fell over the din, most of the time sounding like the bleat of a newborn goat.
On sunny afternoons such as today, we'd cozy up together on the sofa. With her tiny body nestled into the crook of my arm, head tucked carefully into the curve of the side of my neck, I'd tease her about her obnoxious snoring, first telling her she put her daddy's almost theatrical racket to shame, then admitting I'm a hundred decibels louder than he is when I'm pregnant. Oh yes, she knows how, when she was gently floating in my belly, I'd snore so loud I'd wake even myself.
Closing my eyes, I can still feel the weight of her body on my chest. Oh my bitty little girl...
We will never be the same as before this loss, but we are forever better for having had something so great to lose.
Forever.
Better.
Until this pain evolves into what is anticipated to be a dull and constant ache, we will seek out the bright spots that glimmer through the grief that brings us to our knees. Chocolate ice cream covered faces. Dappled sunlight.
Thank you to our family and our friends for your continuous outpouring of love and support. We are blessed. We are truly blessed.
February 18, 2011
Oh Peanut
Oh Peanut. This mama longs to be murmuring sweet words into the velvety soft spot where baby fine hair gives way to a sweet smelling neck. Just when the tears begin to subside, another wave comes crashing in. Every part of me aches. She's gone.
Wednesday, we held our breath, watching the monitor of the ventilator to see Sophie take hers. She didn't. Our girl. Our feisty, feisty girl picked her battle. It wasn't the one we would have chosen for her. She fought to leave this world, to be rid of the body that trapped her so.
She won.
They started coming. Slowly at first. Each time a new face entered Sophie's hospital room, a reverent hush would fall, that deep rooted and quiet respect for what was to come. In time, the mood would lighten some and laughter would occasionally ring out. Then, the door would slide open again, giving pause and time for silent reflection.
I tried to be good. I tried my best to share these last and fleeting moments, each visitor taking a turn at holding Sophie one last time, caressing her cheek, kissing tiny dimpled fingers until I finally threw down the mom card. I needed her back in my arms, unimaginable panic rising up in me. From time to time, I'd glance at the hands on the clock above her bed, pleading with them to stop.
Eventually, the guests began to go. Aunt Kelly was the last. The anguish and terror in my heart clearly reflected on her face as she reeled back in her chair, pushing away from us as if there were some way to escape. "No!" she sobbed. Then she too took a turn in the blue hospital rocking chair. Cradling. Loving. Already mourning.
After she left, WM and I gave Sophie one last bath. We gently rubbed and dried and applied lotion to every soft curve and chubby baby wrinkle, memorizing every last bit of her tiny being. Leaning onto her bed, whispered stories carried us well into the wee hours of the morning until exhaustion finally chased us into bed, if only for an hour or so.
We begged it not to, but time marched on.
With the light of day, our grief stricken group gathered, grandmas and grandpas, one uncle and an auntie-to-be, faces stained with tears, choking back sobs. Channing, unaware of what was going on around him, constantly asked for chapstick for 'Baby Sopie', the ever concerned big brother wary of the vent tube protruding from Sophie's mouth. He applied the chapstick and every time he did, he leaned in to kiss her bottom lip. Oh sweet boy, you may not have memories of your baby sister, but she has had a profound impact on the person we see you becoming. The love and compassion emanating from your two-year-old body is humbling to say the very least.
WM says she was kind to us. It happened quickly. The monitors were turned off. The tube was removed. I cradled her weary body in my arms as she gently slipped away. One last time she was passed from embrace to embrace until she finally returned to my arms.
I clung to her limp form, kissing her now tape-free cheeks, whispering words of love and singing loud enough for only Sophie to hear, just one last time to my sweet baby girl, an Irish lullaby.
Wednesday, we held our breath, watching the monitor of the ventilator to see Sophie take hers. She didn't. Our girl. Our feisty, feisty girl picked her battle. It wasn't the one we would have chosen for her. She fought to leave this world, to be rid of the body that trapped her so.
She won.
They started coming. Slowly at first. Each time a new face entered Sophie's hospital room, a reverent hush would fall, that deep rooted and quiet respect for what was to come. In time, the mood would lighten some and laughter would occasionally ring out. Then, the door would slide open again, giving pause and time for silent reflection.
I tried to be good. I tried my best to share these last and fleeting moments, each visitor taking a turn at holding Sophie one last time, caressing her cheek, kissing tiny dimpled fingers until I finally threw down the mom card. I needed her back in my arms, unimaginable panic rising up in me. From time to time, I'd glance at the hands on the clock above her bed, pleading with them to stop.
Eventually, the guests began to go. Aunt Kelly was the last. The anguish and terror in my heart clearly reflected on her face as she reeled back in her chair, pushing away from us as if there were some way to escape. "No!" she sobbed. Then she too took a turn in the blue hospital rocking chair. Cradling. Loving. Already mourning.
After she left, WM and I gave Sophie one last bath. We gently rubbed and dried and applied lotion to every soft curve and chubby baby wrinkle, memorizing every last bit of her tiny being. Leaning onto her bed, whispered stories carried us well into the wee hours of the morning until exhaustion finally chased us into bed, if only for an hour or so.
We begged it not to, but time marched on.
With the light of day, our grief stricken group gathered, grandmas and grandpas, one uncle and an auntie-to-be, faces stained with tears, choking back sobs. Channing, unaware of what was going on around him, constantly asked for chapstick for 'Baby Sopie', the ever concerned big brother wary of the vent tube protruding from Sophie's mouth. He applied the chapstick and every time he did, he leaned in to kiss her bottom lip. Oh sweet boy, you may not have memories of your baby sister, but she has had a profound impact on the person we see you becoming. The love and compassion emanating from your two-year-old body is humbling to say the very least.
WM says she was kind to us. It happened quickly. The monitors were turned off. The tube was removed. I cradled her weary body in my arms as she gently slipped away. One last time she was passed from embrace to embrace until she finally returned to my arms.
I clung to her limp form, kissing her now tape-free cheeks, whispering words of love and singing loud enough for only Sophie to hear, just one last time to my sweet baby girl, an Irish lullaby.
Sophie Meredith Flynn
July 23, 2010 to February 17, 2011
February 14, 2011
The Battle
Our bitty girl is feisty. She has been since well before she was born. Every time she's been dealt a bad hand, she's fought her way back. Mightily.
Until now.
Sophie arrested Friday night. An ambulance and helicopter ride later and she was back in her hospital bed, machines whirring, alarms beeping, IVs infusing. How long she was deprived of oxygen and blood flow is up for debate. Saturday revealed a malfunction of her shunt. She underwent surgery for the ventricular catheter to be replaced.
The incident Friday night has added insult to injury. Little Sophie, who more often than not has come out of surgery wide-eyed is still unresponsive. Her little eyes are tightly closed. She stirs just slightly when held. On occasion, she takes a breath or two over the vent that she currently clings to.
Foolish people we are not. Our hope for Sophie's future has been peppered with realism, our goal to maximize her potential by allowing her to show us what that is and more than anything else to fill her with endless amounts of love.
Tonight our love washes over her in a near constant flow of tears. Every thread of hope we grasp on to, quickly broken by one doctor or another. One has likened Sophie's condition to that of a drowning victim, most awakening within 24 hours, others not ever. It was pointed out that the 24 hour mark has come and gone. Our pediatrician, ever watchful from both bedside and home, cheers her on by text. Her labs are good. She is tolerating her vent changes like a champ. It's obvious which camp we would like to be in.
Kendra came by. I asked her the tough questions. I have an obsessive need to know how things work. I don't like surprises. In her very nurse-like way, she explained the process of taking away life support as I cradled Sophie's fragile body in my arms. I half listened. Some of it registered. A lot of her words faded into the background as that voice in my head screamed...
Come on, feisty girl! Show 'em what you've got!!
Until now.
Sophie arrested Friday night. An ambulance and helicopter ride later and she was back in her hospital bed, machines whirring, alarms beeping, IVs infusing. How long she was deprived of oxygen and blood flow is up for debate. Saturday revealed a malfunction of her shunt. She underwent surgery for the ventricular catheter to be replaced.
The incident Friday night has added insult to injury. Little Sophie, who more often than not has come out of surgery wide-eyed is still unresponsive. Her little eyes are tightly closed. She stirs just slightly when held. On occasion, she takes a breath or two over the vent that she currently clings to.
Foolish people we are not. Our hope for Sophie's future has been peppered with realism, our goal to maximize her potential by allowing her to show us what that is and more than anything else to fill her with endless amounts of love.
Tonight our love washes over her in a near constant flow of tears. Every thread of hope we grasp on to, quickly broken by one doctor or another. One has likened Sophie's condition to that of a drowning victim, most awakening within 24 hours, others not ever. It was pointed out that the 24 hour mark has come and gone. Our pediatrician, ever watchful from both bedside and home, cheers her on by text. Her labs are good. She is tolerating her vent changes like a champ. It's obvious which camp we would like to be in.
Kendra came by. I asked her the tough questions. I have an obsessive need to know how things work. I don't like surprises. In her very nurse-like way, she explained the process of taking away life support as I cradled Sophie's fragile body in my arms. I half listened. Some of it registered. A lot of her words faded into the background as that voice in my head screamed...
Come on, feisty girl! Show 'em what you've got!!
February 10, 2011
She's Ba-ack!!
I know. I know. I'm not doing a very good job of keeping up my end of the bargain here. To say I've been lacking the motivation to post these past couple weeks is a gross understatement. The fear crept in, and allowed to stay too long, it ate away at the good and the creative and the happy. The closer we got to Sophie's surgery date, the tighter I hugged my kids, an ever present lump in my throat and tears that constantly threatened to spill over. OK. They did more than threaten. They spilled over. A lot. I was rattled. I even had my mother-in-law rattled.
I confessed to WM that the most recent round of surgical procedures had me Terrified. Yes, with a capital T. That sort of terrified. Fortunately, this mama's intuition was wrong for a change. Perhaps, the nagging ickiness that gripped my heart had more to do with the fact that each time Sophie conquers one condition, she trades it for another. She had her cleft repair the beginning of December, only to gear up for the mal-rotation and g-tube surgery. The plans were laid to address those issues, and she was diagnosed with reflux of the kidneys. If she continues to have break through UTIs, surgery will be required to fix that issue. You can see why I'd have cause for concern.
Sophie, this mama's sorry she doubted you, feisty girl that you are. She was in, out and done faster than any of us imagined, all procedures deemed successes. The DL/B determined that the laryngeal cleft repair was intact and no further adjustment necessary. Tubes were placed in her tiny little ears to aid in her conductive hearing loss. They work. Believe you me they work. Papa opened a can of pop in the kitchen for a mid-afternoon refresher today. Sophie, snuggled in my lap on the living room sofa, jumped about 6 inches at the sound of the snap and hiss. Her little innards have been adjusted here & there and her g-tube is in place and healing nicely. Playing Nurse Kendra for a brief moment this morning, I took out Sophie's stitches myself. The g-tube was easy-peasy to adapt to, and after just one day at home, my mom was even hooking up feedings as if it were second nature.
So, take that fear! You can just crawl back to the corner from whence you came. Stay there for a while too this time. You can have yourself a nice, long time out. Say for twenty-thirty minutes. Yes, Channing is catching onto his numbers these days. He's been an absolute riot of color and joy and all things good as of late. A vibrant and bright spot amongst all else. He deserves his own post though. He more than deserves his own post. It will come. Soon.
In the meantime we're celebrating this little girl.
Remember her? You might recognize her sweet little cheeks from these pictures taken back in August.
Well, she's ba-ack!!
I confessed to WM that the most recent round of surgical procedures had me Terrified. Yes, with a capital T. That sort of terrified. Fortunately, this mama's intuition was wrong for a change. Perhaps, the nagging ickiness that gripped my heart had more to do with the fact that each time Sophie conquers one condition, she trades it for another. She had her cleft repair the beginning of December, only to gear up for the mal-rotation and g-tube surgery. The plans were laid to address those issues, and she was diagnosed with reflux of the kidneys. If she continues to have break through UTIs, surgery will be required to fix that issue. You can see why I'd have cause for concern.
Sophie, this mama's sorry she doubted you, feisty girl that you are. She was in, out and done faster than any of us imagined, all procedures deemed successes. The DL/B determined that the laryngeal cleft repair was intact and no further adjustment necessary. Tubes were placed in her tiny little ears to aid in her conductive hearing loss. They work. Believe you me they work. Papa opened a can of pop in the kitchen for a mid-afternoon refresher today. Sophie, snuggled in my lap on the living room sofa, jumped about 6 inches at the sound of the snap and hiss. Her little innards have been adjusted here & there and her g-tube is in place and healing nicely. Playing Nurse Kendra for a brief moment this morning, I took out Sophie's stitches myself. The g-tube was easy-peasy to adapt to, and after just one day at home, my mom was even hooking up feedings as if it were second nature.
So, take that fear! You can just crawl back to the corner from whence you came. Stay there for a while too this time. You can have yourself a nice, long time out. Say for twenty-thirty minutes. Yes, Channing is catching onto his numbers these days. He's been an absolute riot of color and joy and all things good as of late. A vibrant and bright spot amongst all else. He deserves his own post though. He more than deserves his own post. It will come. Soon.
 |
| The ever present and watchful Lamby. |
In the meantime we're celebrating this little girl.
Remember her? You might recognize her sweet little cheeks from these pictures taken back in August.
 |
| There's something so irresistible about baby yawns, isn't there? |
 |
| This would be the hat that started it all. Sophie's strawberry hat from the NICU courtesy of my mom. |
Well, she's ba-ack!!
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