by Band Back Together | Jul 7, 2011 | Encephalocele, Neural Tube Defects, NICU |
Human anatomy I’ve always found to be a strikingly tender science. Certainly, I always loved the dryness of the carbon chains and the satisfaction of growing new strains of bacterium, but seeing the human body and lovingly learning all of the nooks and crannies, all of the ways that we are all the same underneath, that is beautiful.
I always heard civilians shudder when I explained that I would be assisting with a dissection.
“Gross,” they would say. “I could NEVER do something like that.”
When pressed, I never got anything more specific from them, which meant that they’d never seen one, because the body, well, the human body is not gross. It is resplendent. It is powerful. It is amazing. It is beautiful.
All of the organ systems functioning in synchronicity so that we are able to walk upright, speak, form words, paint beautiful pictures, draw pictures with our written words, love, that is not gross. And that is what human anatomy is.
Inside, we are even more beautiful than out.
Rarely, however, do the names of the parts of the body reflect their beauty.
Often, they’re named after the anatomist who found them because scientists are about as self-serving and obnoxious as bloggers. The Islets of Langerhans, for example may bring to mind a nice set of islands found off the coast of Ireland, but no, they’re actually endocrine-producing cells of the pancreas.
Even the very word pancreas sounds more like something you’d find dead on the side of the road than something that creates the body’s most important enzymes. But to say it aloud sounds dirty, something you spit out of your mouth, a splat, an inelegant word for a very elegant organ.
The day we learned of the heart, I came across the words chordae tendineae, and I stopped for a moment. Latin words make me happy, which is probably, in part, why I am so attracted to virology. Continuing on, I read what this curious, elegant term meant.
The chordae tendineae are tendinous cords of dense tissue that connect the two atrioventricular valves to their papillary muscles in the hearts ventricles.
The chordae tendineae are the heart strings.
That is probably the most graceful and magnificent term I have ever heard and the best representation of why I find human anatomy so intoxicatingly lovely. We human beings actually have heart strings.
Whenever I am sad, I think of those tiny strings, which I have seen with my own eyes, felt with my fingers, those strings of fibrous tissue, so very much stronger than they look, and I am comforted by the heart strings that bind us all.
On my refrigerator hangs a report from Early Intervention with my daughter’s name on it. It is a discharge sheet that states that she is at or above level for everything. It was true then. It is not true any longer. I cannot bear to take it down, because to take it down would be to admit defeat.
I will not be defeated. My daughter will not be defeated.
When I called my case worker, she sounded so sad to hear from me, her voice mirroring my own. It didn’t help that the only sheet of paper I could find with the phone number on it was her discharge from the program with a jaunty, “We enjoyed working with your family!” on it.
The therapist will come several days after my 30th birthday to evaluate my daughter and to tell me what I already know: Amelia is not normal. Amelia needs help. I am a trained diagnostician and I am aware of both of these facts. I am also aware that I am doing the right things. But knowing this doesn’t make this any easier for me.
There is something between her brilliantly big brain and delicate rosebud mouth that isn’t connecting properly. It fills me with a well of sorrow I didn’t even know I had, because I want so badly to hear her words. All of her words. Stories of Saturn and the planetarium and pleas for cookies and candy and the injustice of it all when I deny her.
I want to know my daughter.
Instead, I kiss her head and rub her scar and apologize to her for what is certain to be a hard road ahead. My heart strings clench painfully and I cry bitter tears, wishing I could make it easy for her, knowing I can’t.
We’re gearing up for a battle over here and we’ll win.
Eventually. Some way, somehow, we’ll win.
by Band Back Together | Nov 24, 2010 | Encephalocele, Happiness, Love, Neural Tube Defects |
Embryonically, I had the idea for Band Back Together after my daughter, Amelia, was born and landed in the NICU with an extremely rare neural tube defect called an encephalocele. I’d run multiple-user blogs before; in fact, my first blog was a group project. But the idea of creating a space like this was daunting.
First, I had to figure out what the hell this space was supposed to be. My initial thought was to make it a place for special needs parents. Then I figured that I should add my baby loss and infertile friends into the mix. Then I realized that I was thinking too narrowly. I’ve never limited what I do on my own blog (I don’t, I want you to know, think of this as my own blog. I think of it as yours), so why should I start here?
Band Back Together is a light in the darkness.
Our darkness may not look the same, it may not feel the same, but underneath, we are all the same, and we are all so very good. This space and the community we have created proves it.
I am truly honored to have all of your stories here. I believe in what we’re doing. I believe that each of your stories will touch somebody else who may still be in the dark. I believe that someday, someone will stumble here and find your words, and when they do, they will be moved. They will sit on the other side of the computer monitor, just as you are now, and they will feel the light breaking through the darkness. They will feel hope.
You may not think that what you do is important. You are wrong. You may feel like your story isn’t good; it isn’t enough. You are wrong.
Every word you write connects you to another.
So please, Pranksters, write hard. Help me get our words; our stories to other people. Tell your stories – all of them – and please, help me spread the word about the site. It’s time to take Band Back Together to 11.
December 31, 2009, I wrote this,
So I approach 2010 full of renewed hope for the future, because no matter how full of the darkness I feel, I can feel the light on my face and I know it’s all around me. Soon it will be within me.
I am hopeful.
I have hope.
Happy New Year.
Through you, I have found my light. I was right. It is so, so good.
Thank you for helping me find my light.
A very Happy Thanksgiving to each of you, Pranksters.
by Band Back Together | Nov 13, 2010 | Encephalocele, Fear, Neural Tube Defects, Stress, Trauma |
Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
I instinctively checked the monitors as I approached my daughter who was sprawled out, getting a sunbath underneath the warmer. Her stats were picture perfect, I noticed, breathing a little more easily, and I made my way slowly to her bedside where she was sleeping peacefully.
I slogged my soggy bottom from the wheelchair onto the rocker that had been shoved into her tiny NICU room; barely even a room, more like a broom closet. She was sandwiched in between two misbehaving (“misbehaving” means that their alarms were constantly blaring) babies who I could hear misbehaving.
Most of the NICU, I noted as I was wheeled past, was full of Feeders and Growers. That’s NICU slang for babies that were, for whatever reason, finishing their gestation outside of the womb. It”s always evoked a pleasant picture of a garden of freshly hatched babies. A Baby Garden.
Of the other babies that I could see cooking away merrily in their incubators, Amelia was the biggest, fattest, and likely the only full- term baby there.
According to her room placement, though, she was the most ill.
Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
My ass firmly planted now onto the chair (I’d had a traumatic vaginal birth mere hours before), I held Amelia’s lone sock as a talisman, hoping it would ward off the Bad News. I was preparing to nurse my daughter again, just waiting for our nurse to come and help me sort through the tangle of wires my daughter was attached to.
It was hard to believe only thirty or so minutes had passed since we’d heard “there’s something sinister on your daughter’s CT scan.”
Our–Amelia’s–nurse walked in and introduced herself to The Daver and I. I was openly weeping, holding onto Mimi’s sock and my iPhone – where the Pranksters live!- as a life preserver. The Daver was pale(r) and stalwart.
I handed off the box of kleenex that had been pressed onto my lap as we left Mother/Baby and my daughter was brought back to me, hooked up to so many wires that she looked like an electrical outlet. The nurse stood there, kindly talking to us, but not revealing anything.
We still had no idea what was wrong with our daughter. A diagnosis would take weeks. Her life, as far as we knew, hung in the balance.
I begged the nurse to have the house neonatologist visit my daughter as the pediatric neurosurgeon was busily operating on someone’s head somewhere other than the NICU. It’s probably good I didn’t know where he was or I’d have stalked him down and dragged him to my daughter for a diagnosis.
The neonatologist – the one I’d met a lifetime ago in the delivery room, the guy who was always drinking a bottle of something – he came over to Amelia’s “room” and he told us that there was a “bright spot” on Amelia’s CT Scan. He didn’t mean diamonds.
I had no fucking clue what that meant and he didn’t follow it up with much, although I did see his lips move, I couldn’t understand his words.
Guess that’s panic for you.
After the doctor left, the nurse came back in to ask if we’d wanted to see the chaplain; rather to have Amelia meet the chaplain. A thousand times yes.
She was amazing. Just. Incredible. For the next year, it was her words, her warmth and compassion that I kept coming back to. She blessed my daughter. My daughter was blessed.
And she is so, so blessed.
We sat there in the NICU; just the three of us. I couldn’t tell you how long we just sat. Time in the ICU is timeless. 4 AM and 4PM are the same.
Soon enough, I had to go upstairs to change my undergarments and ready myself to see my boys. My sister-in-law was bringing my sons to visit, and I had to put on my Poker Face. Given the raw, chapped and bleeding state of my cheeks, was going to be damn near impossible.
Back in my room, I saw that I’d gotten some flowers and a basket from two of my Pranksters and it made me cry. Then again, I think the package of Saltines that had been ruthlessly thrown on the floor the night before might have made me cry. I wasn’t in a Good Place.
Alex and Ben came in a bit after I’d gotten cleaned up. I held Alex very, very close as Ben showed me some pictures he’d colored of Amelia. Ben knew his sister was sick but Alex (only 22 months old) had no idea what a “sister” was, let alone what being “sick” meant. I held them and faked normal until I got the call from the NICU. Time to nurse the baby.
Talk about being torn.
I cried as I said goodbye to my youngest son–my eldest just wanted to get home and I couldn’t find fault with that–and he cried and yowled “Mooommmmyyy” as he was led away to the elevators that would dump him back into the outside world.
By myself for the first time, I tearfully found my way back to the Secret Place, The Land of Tears. Never have I felt so sick to my stomach in my life. People stared sympathetically as I wept in the elevator, leaning against the walls for support.
I begged God to let her live, even if she was retarded and her IQ was 43 and had to live at home for the rest of her life, just please let my baby girl live. I didn’t care what was wrong with her so long as she made it out alive. I begged God to take me instead. I’d had 28 wonderful years on the planet already, and she was less than 24 hours old. Certainly, I’d give my life to save her in a moment.
Hear my prayer, hear my prayer, hear my prayer. Please God, hear my prayer.
After scrubbing the top 50 layers of skin from my arm and signing a reasonable facsimile of my name, I wobbled to her bedside. There she was, my girl. Perfect stats, thrashing about her isolette, pissed as hell and looking for something to eat.
In the brief time I’d been gone we’d gotten a new nurse.
When she came in to assess my daughter and saw me crying as I nursed my girl, for the first time in a day, someone asked me what was wrong. I explained that I didn’t know if my daughter would live or die. I told her that no one had told us what could be wrong with her, what that bump COULD be, why she was in the NICU, nothing.
She looked pretty aghast that we’d been told nothing, and for the first time, someone tried to reassure us. I remember leaving the NICU several hours later slightly less burdened.
That night, we ordered a pizza and tried to relax in my somber room. We tried to let go of some of The Fear. I didn’t feel much like celebrating anything, so no balloons, no stuffed animals, no signs that I had just given birth decorated my room. I could have been on any floor, in any room in the hospital.
The nurse brought me my Ambien and the NICU called to tell me that they would bring my daughter up to nurse every 2 hours (the NICU runs like clockwork. It’s no wonder that new parents struggle to care for their NICU graduate when they get home). I turned on the sound machine to blast white noise over The Daver’s snores, and waited, trying to fall asleep.
Unsurprisingly to no one, I couldn’t get anywhere close to sleep that night. This made the tally of nights without sleep 3.
I was about to lose it.
Somewhere around 4 AM, after someone had barged into my room to empty the wastebasket, waking me from the lightest of light sleep, I panicked. I’d sent Dave down to the NICU to sit with our daughter in the vain hope that having him at her side would set my mind free.
I was alone. The panic that had been a constant dull buzzing had morphed into something much more sinister and I knew what was about to happen.
Frantically, I paged the nurses station because I knew I needed help. I explained as carefully as I could that I was about to have a panic attack and that I needed my nurse NOW. My nurse came in, I don’t remember what she did, but she didn’t want to call my doctors because they would be rounding in a couple of hours and I could ask for something for my anxiety then.
Fucking bitch.
She told me to “relax” and then left.
I tried to “relax” which was as useful as punching myself in the face with a hammer. It didn’t work. I put a call back into the nurses station, begging; pleading with them to call my doctor. I begged for help.
My last rational thought was to quickly inventory anything in the room with any sort of calming properties. The best I could come up with was a bottle of Scope.
I didn’t end up drinking it, but I did call the NICU and beg Dave to come back up. A nurse passing by my room took pity on me and called my doctor, who prescribed me an Ativan. A swarm of people all happened to come into my room at the same time: a partner in my OB practice who looked terrified by me but discharged me anyway, a nurse with that beautiful pill, a tech to get my vitals, and my husband.
It sounds, in retelling this, that they were all there to help, but it wasn’t really like that. Dave and the nurse were trying to calm me down, but the tech, the doctor and whomever was washing the floor were doing their jobs. With spectacularly bad timing.
Ativan on board now, I was trying to gulp some calming breaths and stave off the panic. They’d turned off the lights, and covered my still-swollen body with fresh sheets, cleaned off the bedside table and turned on the white noise machine.
Finally, I began to relax and beat the panic away, if only slightly. Dave held my hand and told me over and over and over again that my daughter was just fine, she was perfect, she was wonderful, she’d done great overnight, she was beautiful, she was going to be just fine. It was soothing to hear, but what would have been MORE soothing? Having her bassinet next to my bed where it belonged instead of three floors below.
Then (dun, dun, DUN), the absolute worst person to show up did.
Lactation services.
Lactation Services showed up, because they say they’ll come by every day you’re in the hospital with a new baby, and they do. It’s awesome for people who need help because breastfeeding is nowhere NEAR as easy as it looks on those weird Lamaze videos.
(also: why are people in the Lamaze videos always naked?)
But I didn’t need help. And when she showed up and saw me shaking in bed, being held by my husband while the nurse clucked around me like a mother hen, lights off, white noise blaring, she should have excused herself. This is not a debate about breast and bottle feeding, this is about decency. But no, she didn’t get the hint.
No.
She introduced herself perkily and asked me how breastfeeding was going, and through clenched teeth, I answered that it was fine. Kinder than the situation warranted.
I expected this to be enough for her, but no, she followed that up with, “Do you have any concerns about breastfeeding?” Wrong question, dipshit. Time, place, all that.
“You know what?” I snarled, “I’m MUCH MORE concerned that my baby is going to die than if I have proper latch, okay?”
Again, she could have gracefully bid be farewell. But no. She kept on keeping on.
“Well, what about your concerns with BREASTFEEDING?” She asked, just not getting it.
I responded with, “Look, if she’s dead, I’m not going to give a FUCK about colostrum, okay? Please!”
I began to sob heavily again. It was the very real truth that my daughter could die. We all knew it. Nursing her wasn’t going to help an encephalocele.
Dave told her to get the fuck out of our room.
Finally, with a DO NOT DISTURB sign on my door, I slept for a few hours.
I awoke when The Daver bounded in and announced, “the neurosurgeon ordered an MRI! And he’s really nice! And not concerned! He thinks it’s an encephalocele! It’s a piece of brain or something that’s herniated out! We can go home after the MRI! And follow up with the results next week! Oh, I wish you’d met him. He was so, so nice.”
And just like that, we went from critical to discharged in less than 36 hours.
by Band Back Together | Oct 10, 2010 | Anger, Anxiety, Birth Defects, Birth Trauma, Encephalocele, Fear, Feelings, Generalized Anxiety Disorder Resources, Hope, How To Cope With Post-Traumatic Stress Disorder, Loneliness, Medical Mystery Tour, Neural Tube Defects, NICU, PICU, Post-Traumatic Stress Disorder, Sadness, Stress, Trauma |
Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
I instinctively checked the monitors as I approached my daughter who was sprawled out, getting a sunbath underneath the warmer. Her stats were picture perfect, I noticed, breathing a little more easily, and I made my way slowly to her bedside where she was sleeping peacefully.
I slogged my soggy bottom from the wheelchair onto the rocker that had been shoved into her tiny NICU room; barely even a room, more like a broom closet. She was sandwiched in between two misbehaving (“misbehaving” means that their alarms were constantly blaring) babies who I could hear misbehaving.
Most of the NICU, I noted as I was wheeled past, was full of Feeders and Growers. That’s NICU slang for babies that were, for whatever reason, finishing their gestation outside of the womb. It”s always evoked a pleasant picture of a garden of freshly hatched babies. A Baby Garden.
Of the other babies that I could see cooking away merrily in their incubators, Amelia was the biggest, fattest, and likely the only full- term baby there.
According to her room placement, though, she was the most ill.
Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
My ass firmly planted now onto the chair (I’d had a traumatic vaginal birth mere hours before), I held Amelia’s lone sock as a talisman, hoping it would ward off the Bad News. I was preparing to nurse my daughter again, just waiting for our nurse to come and help me sort through the tangle of wires my daughter was attached to.
It was hard to believe only thirty or so minutes had passed since we’d heard “there’s something sinister on your daughter’s CT scan.”
Our–Amelia’s–nurse walked in and introduced herself to The Daver and I. I was openly weeping, holding onto Mimi’s sock and my iPhone – where the Pranksters live!- as a life preserver. The Daver was pale(r) and stalwart.
I handed off the box of Kleenex that had been pressed onto my lap as we left Mother/Baby and my daughter was brought back to me, hooked up to so many wires that she looked like an electrical outlet. The nurse stood there, kindly talking to us, but not revealing anything.
We still had no idea what was wrong with our daughter. A diagnosis would take weeks. Her life, as far as we knew, hung in the balance.
I begged the nurse to have the house neonatologist visit my daughter as the pediatric neurosurgeon was busily operating on someone’s head somewhere other than the NICU. It’s probably good I didn’t know where he was or I’d have stalked him down and dragged him to my daughter for a diagnosis.
The neonatologist – the one I’d met a lifetime ago in the delivery room, the guy who was always drinking a bottle of something – he came over to Amelia’s “room” and he told us that there was a “bright spot” on Amelia’s CT Scan. He didn’t mean diamonds.
I had no fucking clue what that meant and he didn’t follow it up with much, although I did see his lips move, I couldn’t understand his words.
Guess that’s panic for you.
After the doctor left, the nurse came back in to ask if we’d wanted to see the chaplain; rather to have Amelia meet the chaplain. A thousand times yes.
She was amazing. Just. Incredible. For the next year, it was her words, her warmth and compassion that I kept coming back to. She blessed my daughter. My daughter was blessed.
And she is so, so blessed.
We sat there in the NICU; just the three of us. I couldn’t tell you how long we just sat. Time in the ICU is timeless. 4 AM and 4PM are the same.
Soon enough, I had to go upstairs to change my undergarments and ready myself to see my boys. My sister-in-law was bringing my sons to visit, and I had to put on my Poker Face. Given the raw, chapped and bleeding state of my cheeks, was going to be damn near impossible.
Back in my room, I saw that I’d gotten some flowers and a basket from two of my Pranksters and it made me cry. Then again, I think the package of Saltines that had been ruthlessly thrown on the floor the night before might have made me cry. I wasn’t in a Good Place.
Alex and Ben came in a bit after I’d gotten cleaned up. I held Alex very, very close as Ben showed me some pictures he’d colored of Amelia. Ben knew his sister was sick but Alex (only 22 months old) had no idea what a “sister” was, let alone what being “sick” meant. I held them and faked normal until I got the call from the NICU. Time to nurse the baby.
Talk about being torn.
I cried as I said goodbye to my youngest son–my eldest just wanted to get home and I couldn’t find fault with that–and he cried and yowled “Mooommmmyyy” as he was led away to the elevators that would dump him back into the outside world.
By myself for the first time, I tearfully found my way back to the Secret Place, The Land of Tears. Never have I felt so sick to my stomach in my life. People stared sympathetically as I wept in the elevator, leaning against the walls for support.
I begged God to let her live, even if she was retarded and her IQ was 43 and had to live at home for the rest of her life, just please let my baby girl live. I didn’t care what was wrong with her so long as she made it out alive. I begged God to take me instead. I’d had 28 wonderful years on the planet already, and she was less than 24 hours old. Certainly, I’d give my life to save her in a moment.
Hear my prayer, hear my prayer, hear my prayer. Please God, hear my prayer.
After scrubbing the top 50 layers of skin from my arm and signing a reasonable facsimile of my name, I wobbled to her bedside. There she was, my girl. Perfect stats, thrashing about her isolette, pissed as hell and looking for something to eat.
In the brief time I’d been gone we’d gotten a new nurse.
When she came in to assess my daughter and saw me crying as I nursed my girl, for the first time in a day, someone asked me what was wrong. I explained that I didn’t know if my daughter would live or die. I told her that no one had told us what could be wrong with her, what that bump COULD be, why she was in the NICU, nothing.
She looked pretty aghast that we’d been told nothing, and for the first time, someone tried to reassure us. I remember leaving the NICU several hours later slightly less burdened.
That night, we ordered a pizza and tried to relax in my somber room. We tried to let go of some of The Fear. I didn’t feel much like celebrating anything, so no balloons, no stuffed animals, no signs that I had just given birth decorated my room. I could have been on any floor, in any room in the hospital.
The nurse brought me my Ambien and the NICU called to tell me that they would bring my daughter up to nurse every 2 hours (the NICU runs like clockwork. It’s no wonder that new parents struggle to care for their NICU graduate when they get home). I turned on the sound machine to blast white noise over The Daver’s snores, and waited, trying to fall asleep.
Unsurprisingly to no one, I couldn’t get anywhere close to sleep that night. This made the tally of nights without sleep 3.
I was about to lose it.
Somewhere around 4 AM, after someone had barged into my room to empty the wastebasket, waking me from the lightest of light sleep, I panicked. I’d sent Dave down to the NICU to sit with our daughter in the vain hope that having him at her side would set my mind free.
I was alone. The panic that had been a constant dull buzzing had morphed into something much more sinister and I knew what was about to happen.
Frantically, I paged the nurses station because I knew I needed help. I explained as carefully as I could that I was about to have a panic attack and that I needed my nurse NOW. My nurse came in, I don’t remember what she did, but she didn’t want to call my doctors because they would be rounding in a couple of hours and I could ask for something for my anxiety then.
Fucking bitch.
She told me to “relax” and then left.
I tried to “relax” which was as useful as punching myself in the face with a hammer. It didn’t work. I put a call back into the nurses station, begging; pleading with them to call my doctor. I begged for help.
My last rational thought was to quickly inventory anything in the room with any sort of calming properties. The best I could come up with was a bottle of Scope.
I didn’t end up drinking it, but I did call the NICU and beg Dave to come back up. A nurse passing by my room took pity on me and called my doctor, who prescribed me an Ativan. A swarm of people all happened to come into my room at the same time: a partner in my OB practice who looked terrified by me but discharged me anyway, a nurse with that beautiful pill, a tech to get my vitals, and my husband.
It sounds, in retelling this, that they were all there to help, but it wasn’t really like that. Dave and the nurse were trying to calm me down, but the tech, the doctor and whomever was washing the floor were doing their jobs. With spectacularly bad timing.
Ativan on board now, I was trying to gulp some calming breaths and stave off the panic. They’d turned off the lights, and covered my still-swollen body with fresh sheets, cleaned off the bedside table and turned on the white noise machine.
Finally, I began to relax and beat the panic away, if only slightly. Dave held my hand and told me over and over and over again that my daughter was just fine, she was perfect, she was wonderful, she’d done great overnight, she was beautiful, she was going to be just fine. It was soothing to hear, but what would have been MORE soothing? Having her bassinet next to my bed where it belonged instead of three floors below.
Then (dun, dun, DUN), the absolute worst person to show up did.
Lactation services.
Lactation Services showed up, because they say they’ll come by every day you’re in the hospital with a new baby, and they do. It’s awesome for people who need help because breastfeeding is nowhere NEAR as easy as it looks on those weird Lamaze videos.
(also: why are people in the Lamaze videos always naked?)
But I didn’t need help. And when she showed up and saw me shaking in bed, being held by my husband while the nurse clucked around me like a mother hen, lights off, white noise blaring, she should have excused herself. This is not a debate about breast and bottle feeding, this is about decency. But no, she didn’t get the hint.
No.
She introduced herself perkily and asked me how breastfeeding was going, and through clenched teeth, I answered that it was fine. Kinder than the situation warranted.
I expected this to be enough for her, but no, she followed that up with, “Do you have any concerns about breastfeeding?” Wrong question, dipshit. Time, place, all that.
“You know what?” I snarled, “I’m MUCH MORE concerned that my baby is going to die than if I have proper latch, okay?”
Again, she could have gracefully bid be farewell. But no. She kept on keeping on.
“Well, what about your concerns with BREASTFEEDING?” She asked, just not getting it.
I responded with, “Look, if she’s dead, I’m not going to give a FUCK about colostrum, okay? Please!”
I began to sob heavily again. It was the very real truth that my daughter could die. We all knew it. Nursing her wasn’t going to help an encephalocele.
Dave told her to get the fuck out of our room.
Finally, with a DO NOT DISTURB sign on my door, I slept for a few hours.
I awoke when The Daver bounded in and announced, “the neurosurgeon ordered an MRI! And he’s really nice! And not concerned! He thinks it’s an encephalocele! It’s a piece of brain or something that’s herniated out! We can go home after the MRI! And follow up with the results next week! Oh, I wish you’d met him. He was so, so nice.”
And just like that, we went from critical to discharged in less than 36 hours.
by Band Back Together | Oct 7, 2010 | Encephalocele, Neural Tube Defects, NICU |
Even in the NICU, she made her temper known. Her furious bleats echoed from the previously calmer walls, disturbing the other tinier occupants and their parents, and I had the good grace to feel sheepish as my daughter wailed fiercely, her gigantically fat legs and arms pounding against the sides of the isolette.
“Let me the fuck outta here!” she hollered without saying a word.
I echoed the sentiment, with my own words, of course.
My daughter, she is a fighter.
At birth, my Amelia Grace, the fighter, born with her brain hanging from her head, she disturbed the entire labor floor with her angry screams. Indeed, one of the only clear memories I have of her birth is her shrieks, so loud, so furious over the grievous sin of having been forced to be weighed.
(I, of course, feel precisely the same way every Friday when I am weighed in, but, you know, I am much more in control of my tantrums, so I can shriek QUIETLY before having to see the number on the scale)
This trait, this fighter trait, it has never left my daughter, my warrior girl, and it is with intense pride that I see her furiously beat her hands against the floor, shrieking in anger over some injustice, because it is so familiar to me. She is her mother’s daughter and she should know how to fight.
Yes! I say to her, YES, my brave, sweet girl, you FIGHT against it. You get good and god-damned mad and you take that anger and you channel it into something good and you use it for all it’s worth. That is the tiger in you, my child. And you let that tiger out and you let it ROAR and God HELP anyone who gets in your way. That fight will remind you you’re alive.
My little Amelia is a warrior.
If anyone should be born with the spirit of a warrior, passed so handily down from her mother’s DNA, I think it should be a daughter, someone born with the odds stacked so heavily against her.
Still, she doesn’t speak to me and tell me the secrets of her heart, although when I look into her deep brown eyes that mirror so closely my own, I can see them there, just below the surface. The Little Prince was right, what is essential is invisible to the eye. And when my heartstrings pull painfully in my chest, imagining the times when it will be so hard for her, I comfort myself in knowing that the warrior heart that beats within my own chest beats within hers as well.
The secret place, the land of tears, well, that will be hers alone, as it is with all all of us.
As I look at her, awestruck, often bemused by her anger, flared up by the terrible injustice of having been told, “no, no we’re not having candy for dinner,” I never forget how lucky I am to have her by my side.
Her speech therapy will begin soon. She’s operating at quite a delay, backsliding from even where she was several months ago. So now we put on our platinum battle armor, polish our diamond coated swords and get ready, because it’s time for the fight to begin.
My Miracle Mimi, my Warrior Principessa; it’s you and me against the world, kid.
So watch out, world.
by Band Back Together | Sep 13, 2010 | Baby Loss, Coping With Baby Loss, Grief, Help For Grief And Grieving, Livng Through A Miscarriage, Loss, Miscarriage, Neural Tube Defects, Pregnancy |
Our timing was so perfect. We tried casually to conceive for a couple months, then got pregnant the first month I charted my temperatures. Our baby would be born in May, a month I thought was perfect to have a baby. I’d be off all summer on maternity leave, and I’d still be thirty–a milestone that felt like a relief after our decision to start a family seemed to come not a moment too soon. I had almost made it to the end of the first trimester when I started spotting. We went in for an ultrasound and the baby measured 9 weeks, when I knew for sure I should have been closer to 10 weeks… but there was a heartbeat! We had some sweet relief for a week, in which I felt comfortable telling a few more people at work–because the chance of losing your baby after you’ve seen or heard the heartbeat goes down dramatically. But then my hormone levels seemed to be falling after another blood draw. Dr. Google told us that it was normal for HCG levels to fall later in the first trimester, so we tried not to go wild with worry over a weekend spent waiting for Monday’s ultrasound.
Our baby had grown and developed more in the week since we had last seen it, and there was still a heartbeat. The ultrasound tech spent a long time looking at the baby, doing things we didn’t really understand like examining the blood flow. She gave us a couple pictures and said “good luck with everything.” We went back into the waiting room for the midwife on call to let us know the results. They handed me the phone across the front desk and she started by telling me that yes, there was a heartbeat and that was a good sign, but… BUT. The nuchal fold looked thickened, which was a sign of a chromosomal abnormality. We would need further tests and they would help me get the screening scheduled. She was going to come in to talk to us more. I looked across the room at Jed in utter terror. He rushed over to me and I couldn’t believe I was getting this news over the phone in the middle of the waiting room. I started crying instantly and they ushered us into an empty exam room.
We held each other, crying and afraid, until the midwife came in to expand on the bad news. What the tech saw in the ultrasound didn’t look good–the thick nuchal fold and an omphalocele, I would probably miscarry. In the meantime we would go to a big nearby hospital for a better ultrasound. Either way, we would probably “have some decisions to make.”
That was a Monday. The next ultrasound was on Friday. Neither of us went to work that week. We stayed in, crying, devastated. I needed help getting out of bed every morning because the sadness was paralyzing. We distracted ourselves by painting the kitchen and baking zucchini bread. Our 4th anniversary was on Thursday. I was 11 weeks pregnant with a dying baby.
Friday arrived and we trekked through the hospital to Maternal and Fetal Medicine and one of the top ultrasound doctors in the country. The room had a second ultrasound screen on the wall facing the exam chair, so the mamas can have good views of their babies. I couldn’t decide how much I wanted to look. My husband wanted to punch the resident who hovered around, looking at the screen with barely veiled repulsion. I didn’t notice; I was busy trying to survive. After a really long exam, we sat in a meeting room with the doctor and a couple nurses, where the doctor explained that our baby had edema–cystic hygroma–all over its body, to a level that indicated a chromosomal abnormality so severe the baby wouldn’t survive. There was no way to predict how long I would stay pregnant. I could miscarry that day, or I could go to term and deliver a baby with a certain death sentence.
Termination for medical reasons was suddenly an option they would help me look into.
We went home in shock. It was impossible to comprehend the gravity of this most horrible thing that had ever happened to us. We made the heartbreaking choice to terminate our much-wanted pregnancy and scheduled the appointment. There were only a couple places in our area where I could get an elective termination, despite it being for a pregnancy with no chance of a positive outcome. My midwife wanted to help me but there was nothing they could do in their office.
While we waited for that awful date to arrive we both went back to work. I was like a ghost. People were sad for me and each hug made me cry. I also kept catching myself in “preparing for parenthood” mode—bookmarking an article about librarianship and parenthood, making note of the book about treating common childhood illnesses at home, realizing my new shirt would also make a good maternity shirt. Telling a coworker about how we thought we might dress up our 5-month-old as an acorn for Halloween next year. Falling silent and trying not to start sobbing. I realized my life wasn’t in that place anymore, but my heart hadn’t caught up. I hadn’t yet fallen out of the habit of preparing for baby.
Late that week I felt like my symptoms were diminishing–my nausea was suddenly totally gone. I made a last-minute appointment with the midwife to check for a heartbeat. If there wasn’t a heartbeat, I wouldn’t have to go for the termination and I could stay in the care of my midwife for whatever happened next. The ultrasound tech–who I now reflexively hated–told me I didn’t have to look at the screen while she checked for, and found, the heartbeat. It felt so cruelly wrong that I had almost been hoping for the opposite. I wanted the suffering to be over, for us and my poor sick baby. The midwife understood my emotional state and emphasized that when abnormalities this severe are found this early, there is no chance of survival.
That weekend we went to have dinner at my parents’ house. We’re close with our families, and in a terrible piece of timing, my parents had been in France this whole time and dealing with our news on their vacation. This also meant seeing my sister-in-law who was also pregnant, with the same due date as mine. You read that right. She’s not the most empathetic person, and this was the first day of the next seven months she spent avoiding us.
The next day we arrived at the family planning clinic at a different big hospital in the area, first thing in the morning. The only other people in the waiting room were a small cluster of people centered on a very sad woman. They were obviously there for the same reasons we were–the pain bubbles around all of us were huge. We got in to see the doctor and asked if we had any options as far as anesthesia, because we had been told that today we’d decide with the doctor whether I’d be put to sleep. This seemed like news to the doctor, who kept talking about how it was less expensive to do it the way they usually did–local anesthesia only, awake the whole time. That was pretty much the last of our concerns, not to mention the fact that amazingly my insurance was going to cover it either way and we ended up paying $47. But we just numbly moved forward. It was happening. She flipped on the ultrasound and we saw our baby for the last time, laying peacefully in my womb, no heartbeat. I suppose we could have walked out right then, but it was over for our baby, and we wanted it all to be over so we could move on with our grief. Three hours later, the baby was no longer a part of me and we were on our way home, empty. The D&C was painful and traumatic. It couldn’t have taken long, but it felt like forever. The physical pain was a distraction, but so inconsequential to this pain I was positive was going to be lifelong.
Our terrible limbo was over, but this was only the beginning of our suffering. I write this now almost a year out from the nightmare, with a baby girl who appears to be healthy kicking in my belly, but the intervening months–and subsequent bonus chemical pregnancy just to show how very cruel life can be–have changed me forever. I will never have the innocence of getting pregnant and assuming I’m going to have a baby. I can still place myself right back in the pain and terror of the slog of grief.
