An OLD post from 2010. He still puts himself to bed at age 14, whenever we say we're going to bed. If we're staying up late, he wants to lay on my lap on the couch until he starts to doze off, and then will dutifully haul himself upstairs around 10.
---------------------------------------------------------------------------------------------
We have 2 dogs, our morning pet and our bedtime pet. Morning pet bounds out of bed at the crack of dawn, full of energy and ready to play or cuddle. As the day rolls on, she runs out of energy until she puts herself back to bed every night at 11:00.
Our bedtime pet draaaaags herself out of her bed in the morning, waddles outside to do her business, and then goes back to bed until noon. She picks up energy steadily throughout the day and around 9:00 or 10:00 she wants cuddles and loves.
A dear friend of mine recently blogged about how her son is having trouble getting to bed during summer break.
It made me think about my other little morning pet, Andrei.
Andrei used to have a lot of bedtime anxiety. He would beg, whine, stall, stall, whine, beg, and repeat until I would just be at my wits end. When he outgrew that, he moved into a phase where he would wake up at about 3:00 am and crawl into bed with us.
What worked for him was one time we just decided to cave and let him stay up really late. We made a deal and said that he could stay awake as long as he wanted as long as he kept lights off and stayed out of our room so we could sleep. We went to bed at 11:00. He lay there in the dark with no one to talk to until he fell asleep. He hated it. He said it was too lonely. Now he asks me every night when I'm going to bed and subtracts 2 hours and puts himself to bed. Obviously I do the tuck in thing, but all I have to say is "It's 9:15. I'm going to bed at 11:00" and he rushes through pj's, teeth, drinks, prayers, etc... no drama.
Wednesday, December 14, 2016
Tuesday, February 2, 2016
The Valley of the Shadow of Death
This is the post I can't write. But I'm going to try.
To understand death you have to see it. I've lost plenty of loved ones. I've watched tiny caskets lowered into impossibly small graves. I've held my grandmother's hand mere days before her passing, when death was so close it hung in the air like her rose petal perfume. I've stared him down a number of times, but never held his hand until 2:45 a.m. on June 15th, 2013.
It was bad. We knew it was bad. The infection had snuck up out of nowhere, and by the time we had a diagnosis it was already too late. I knew that, but we opted for emergency surgery. The candle of my first born son's life was flickering out, and I wasn't ready to let him die. But his belly was black, hard, and bloated. He only weighed 560 grams. The odds were grim.
Fight, baby. Fight! I begged him. I begged God. I begged the doctors. He was eight days old. I drugged myself into a coma with my C-Section pain meds. I couldn't stop my brain, though. My conscious mind knew what I was witnessing so I sat there, conscious, but too drugged to do anything except stare and whisper silent prayers that God would let him stay, or take me with him.
I loved him the most. I feel ashamed to admit this but I did. Oh how I love my other ducklings- so much it hurts- but this one was the one who slept for six months beneath my heart.
During our gender ultrasound they told me Baby A was a girl. My heart leapt and sang with joy- I knew her already, the little girl with ringlets and bright brown eyes that twinkled when she smiled. I'd spoken to her in my dreams for 11 years.
Baby B is a...
Please don't say boy. Please don't say boy. Please don't say boy. I know what happens to baby boys in my family.
... Boy.
My heart sank in my chest. I gulped back hot tears. I tried to be happy but the spirit confirmed what I already knew. "Henry needs a mission companion."
So for two more months I begged God to let me know him just in case my worst fears came true. Those prayers were answered. Baby B sat high on my ribs near my heart. He woke up every morning with hiccups. His sister kicked him angrily for disturbing her. He danced to Paul Simon, Neil Young, Bob Marley & the Beatles. He would kick my hand when I placed it over him and when my blood sugar dropped and he got hungry. He was so joyful I often forgot to be afraid. He was as bright as the sun. I started calling him Robert after my grandfather, the war hero.
I let them saw me in half to get him out safely. He cried when they pulled him from my womb, even though one pound babies can't cry.
In the NICU he wouldn't sleep unless I sang to him. "Don't worry about a thing- you know every little thing is gonna be alright. "
He burned up that dark hospital with the brilliance of his soul. He was light. Looking at him was like looking into the face of God. He was so impossibly tiny and absolutely perfect. "He doesn't know how small he is, " they told me. "He'll be home before his due date."
But seven days later the light began to dim. The doctors told me he was fine. They hadn't known his light like I had, and couldn't tell it was beginning to flicker.
"Oh God! No! You can't take him. No! No! I can't let you! Not yet... not ever."
I cried in the pump room. I screamed really. I tore out my hair. Beat my chest.
The doctors told me it was just a cold. I knew better.
That night he stopped breathing.
NEC. Ruptured intestines. Sepsis.
They revived him. Surgery.
That horrible night and day waiting for what I had been prepared would come, unable to tell anyone (least of all his father) that I'd been preparing for months.
They let us sleep in a NICU room. That's not a good sign. I braced myself and vowed to make it beautiful for him. I could make room for my pain later. Right now I had to help the one I loved the most not be afraid of crossing over. I wanted the last sound in his ears to be music, not tears.
At midnight I told him I was ready, and he could decide for himself what to do.
Knock. Knock. Knock.
2:45 a.m.
"It's time."
"We can prolong his life and wait until his body gives out, or unplug him and let him go now, but there's nothing else to do and his body is failing. His kidneys have stopped, his lungs are filling with fluid, and his heart is starting to go."
Unplug him. Take the tubed out, wrap him up, and let me hold him once while he's still living.
Daddy said goodbye. I told him how proud we were, and how glad we were that he was ours. I told him I'd sing his songs for the rest of my life. J
I knew he wanted to hear my heartbeat once more, so I lay his head on my chest.
"Is this love? Is this love? Is this love? Is this love that I'm feeling? I wanna know, wanna knooow..."
He died in my arms while I sang his favorite song. I died too.
Then two days later I heard his voice. In the indescribable haze of a mother's grief I had gotten out of bed, dressed myself, and had gotten in the car to go to the hospital to see Baby A, clinging desperately to life in her incubator.
I turned up the radio in order to shut off my conscious thought which had been tasked with planning a funeral for a one pound boy and there he was! Paul Simon singing to me "Goodbye Rosie, Queen of Corona, I know where I'm going but I don't know when."
As hot tears stung my eyes Paul McCartney sang
To understand death you have to see it. I've lost plenty of loved ones. I've watched tiny caskets lowered into impossibly small graves. I've held my grandmother's hand mere days before her passing, when death was so close it hung in the air like her rose petal perfume. I've stared him down a number of times, but never held his hand until 2:45 a.m. on June 15th, 2013.
It was bad. We knew it was bad. The infection had snuck up out of nowhere, and by the time we had a diagnosis it was already too late. I knew that, but we opted for emergency surgery. The candle of my first born son's life was flickering out, and I wasn't ready to let him die. But his belly was black, hard, and bloated. He only weighed 560 grams. The odds were grim.
Fight, baby. Fight! I begged him. I begged God. I begged the doctors. He was eight days old. I drugged myself into a coma with my C-Section pain meds. I couldn't stop my brain, though. My conscious mind knew what I was witnessing so I sat there, conscious, but too drugged to do anything except stare and whisper silent prayers that God would let him stay, or take me with him.
I loved him the most. I feel ashamed to admit this but I did. Oh how I love my other ducklings- so much it hurts- but this one was the one who slept for six months beneath my heart.
During our gender ultrasound they told me Baby A was a girl. My heart leapt and sang with joy- I knew her already, the little girl with ringlets and bright brown eyes that twinkled when she smiled. I'd spoken to her in my dreams for 11 years.
Baby B is a...
Please don't say boy. Please don't say boy. Please don't say boy. I know what happens to baby boys in my family.
... Boy.
My heart sank in my chest. I gulped back hot tears. I tried to be happy but the spirit confirmed what I already knew. "Henry needs a mission companion."
So for two more months I begged God to let me know him just in case my worst fears came true. Those prayers were answered. Baby B sat high on my ribs near my heart. He woke up every morning with hiccups. His sister kicked him angrily for disturbing her. He danced to Paul Simon, Neil Young, Bob Marley & the Beatles. He would kick my hand when I placed it over him and when my blood sugar dropped and he got hungry. He was so joyful I often forgot to be afraid. He was as bright as the sun. I started calling him Robert after my grandfather, the war hero.
I let them saw me in half to get him out safely. He cried when they pulled him from my womb, even though one pound babies can't cry.
In the NICU he wouldn't sleep unless I sang to him. "Don't worry about a thing- you know every little thing is gonna be alright. "
He burned up that dark hospital with the brilliance of his soul. He was light. Looking at him was like looking into the face of God. He was so impossibly tiny and absolutely perfect. "He doesn't know how small he is, " they told me. "He'll be home before his due date."
But seven days later the light began to dim. The doctors told me he was fine. They hadn't known his light like I had, and couldn't tell it was beginning to flicker.
"Oh God! No! You can't take him. No! No! I can't let you! Not yet... not ever."
I cried in the pump room. I screamed really. I tore out my hair. Beat my chest.
The doctors told me it was just a cold. I knew better.
That night he stopped breathing.
NEC. Ruptured intestines. Sepsis.
They revived him. Surgery.
That horrible night and day waiting for what I had been prepared would come, unable to tell anyone (least of all his father) that I'd been preparing for months.
They let us sleep in a NICU room. That's not a good sign. I braced myself and vowed to make it beautiful for him. I could make room for my pain later. Right now I had to help the one I loved the most not be afraid of crossing over. I wanted the last sound in his ears to be music, not tears.
At midnight I told him I was ready, and he could decide for himself what to do.
Knock. Knock. Knock.
2:45 a.m.
"It's time."
"We can prolong his life and wait until his body gives out, or unplug him and let him go now, but there's nothing else to do and his body is failing. His kidneys have stopped, his lungs are filling with fluid, and his heart is starting to go."
Unplug him. Take the tubed out, wrap him up, and let me hold him once while he's still living.
Daddy said goodbye. I told him how proud we were, and how glad we were that he was ours. I told him I'd sing his songs for the rest of my life. J
I knew he wanted to hear my heartbeat once more, so I lay his head on my chest.
"Is this love? Is this love? Is this love? Is this love that I'm feeling? I wanna know, wanna knooow..."
He died in my arms while I sang his favorite song. I died too.
Then two days later I heard his voice. In the indescribable haze of a mother's grief I had gotten out of bed, dressed myself, and had gotten in the car to go to the hospital to see Baby A, clinging desperately to life in her incubator.
I turned up the radio in order to shut off my conscious thought which had been tasked with planning a funeral for a one pound boy and there he was! Paul Simon singing to me "Goodbye Rosie, Queen of Corona, I know where I'm going but I don't know when."
As hot tears stung my eyes Paul McCartney sang
On the day that I die, I'd like jokes to be told
And stories of old to be rolled out like carpets
That children have played on and laid on
While listening to stories of old
And stories of old to be rolled out like carpets
That children have played on and laid on
While listening to stories of old
At the end of the end
It's the start of a journey to a much better place
And a much better place would have to be special
No reason to cry
It's the start of a journey to a much better place
And a much better place would have to be special
No reason to cry
On the day that I die, I'd like bells to be rung
And songs that were sung to be hung out like blankets
That lovers have played on and laid on
While listening to songs that were sung
And songs that were sung to be hung out like blankets
That lovers have played on and laid on
While listening to songs that were sung
And the music kept coming. It still does. Whenever I start to doubt or feel afraid that I've lost him for good, I hear him singing to me and I remember how it felt to look into the gates of Heaven, and how it feels to hold the hands of Death himself.
It never stops hurting. I will never be the same. But I owe both of my babies my very best, and when I miss him too much I always seem to find him again. I am sure we'll recognize each other on the day that my work here is through and he comes to get me to take me home with him. Until then, I'll keep singing.
Wednesday, December 30, 2015
Life after the NICU Part II
It's one thirty a.m. I've been asleep since nine but it's my turn to take the late shift so up I go. I've been sleeping on a mattress on the ground in the spare room while Luis holds, plays with, and provides care for the baby, now eight months old but .measuring the size of a three month infant. We are trying to assist her in getting rid of her G Tube, a necessary yet vile device that provides her with the fluids and nourishment she cannot eat herself, scarred and traumatized as she is from her grueling NICU stay. It's a blessing but also a curse. She's growing and her health is improving daily due to the high quality milk I'm still miraculously able to provide her, but it is disgusting and tons of work. It often leaks the contents of her stomach- partially digested milk, stomach acid, and mucus- onto her bed and clothing. The tubing requires regular changes as sterilization, and I have to keep a fabric pad under the valve that connects the tube to her stomach to prevent chafing and granulation tissue which bleeds onto her cute Carter's jammies. It's a strange juxtaposition of sweet infant comfort- cotton jammies printed with lambs, bees, hearts, and monkeys, and medical tape, gauze, and a leaky valve that spills what is essentially vomit all over everything. It is made stranger by the sleep depravation and the need to change her diapers, tubing, padding, and clean the skin around the valve every three hours. Dad goes to bed. It's my turn. I warm up soapy water and milk. I check the baby. The cap on her valve popped open. She's drenched in hot, stinky, milk. I strip the bed, the baby, change the linens. It's already nearly two a.m. I check her oxygen tubing and apnea monitor, dress her in clean clothes, flush the valve with sterile water, change her dressings. She's swaddled now and ready to feed. Now comes the real work- teaching an eight month old with severe oral aversion to eat- a process that involves a lot of trial and error. She can't swallow regular milk because the scar tissue from the ventilator numbs her throat and she can't feel fluid that thin so she chokes so we thicken her bottles with purred baby banana food. She only likes one specific type of nipple which we discover after spending a fortune on every type of bottle on the market, testing which she'll accept into her traumatized little mouth. She has reflux, which requires medication, frequent burping, and feeding on her side, laying down on a pillow. The entire process has been refined one Agonizing detail, one precious mililiter at a time. It's a good night. She takes 75 mils- a full feeding. I burp her, reswaddle her and lay her down. I set up the feeding pump which will tube feed her in a few hours. The occupational therapist says she'll learn to eat faster if I bottle feed her first, but it's now 2:20 and her next meal is at four, and I have to work tomorrow. I mean later today. I put everything away and take out my breast pump. Breast is best, and despite all odds I've managed to feed her exclusively fortified breast milk since birth. It's offered her protection against illness, which could save her life if she contacts a virus- even the flu can be deadly to a baby with compromised lungs- and it offers her superior nutrition which is vital to her growth- the only thing that will "cure" her breathing problems. Pumping takes time, which I don't have tonight, but which I must find. Twenty minutes is all I'll give myself- enough to keep up production. I cue up Breaking Bad on Netflix and get to work.
I finish up around 2:45, stash the milk in the mini fridge by my bed, and pass out, exhausted.
Wonk! Wonk! Wonk! Wonk! Wonk!
It's 3:05. The stickers that attach the apnea monitor to my daughter's chest have come loose when they were drenched by leaked milk earlier. I grab a new pair. Reattach them. Reset the monitor. Go back to sleep. 3:15
Beep beep beep beep! Beep beep beep beep! 4:30- time to start the feeding pump so baby can get her next meal. It runs quickly, simulating a bottle feed to maintain her stomach's elasticity. I doze for twenty minutes until yet another alarm- Beep boo! Beep boo! Beep boo!- alerts me it's finished my work for me. I disconnect the tubing from the stomach valve, triple check to make sure it's closed this time, flush the port with clean water, cover her up, and go back to bed. long We'll wake in three hours to start our daily routine of physical and occupational therapy, work, chores, and daddy. Every day I sterilize every hard surface in the house with Clorox wipes. She can't get sick. Even with the support of breast milk RSV could kill her.
Bringing a baby home from the NICU is just the start of an excruciatiny long journey. When I brought Rosie home, the stress of the awrsome responsibility placed on me, the never-ending medical interventions, and sleep depravation triggered severe PPD & PTSD. I would have been suicidal if I hadn't had such an unbreakable bond with my baby coupled with the sure knowledge that she would undoubtedly suffer unspeakably were I not there to safeguard her every step of the way. I was so tired and emotionally exhausted I fantasized about death daily, but felt ashamed to talk about my feelings and totally unaware how to schedule any time for myself to get professional help or even provide myself with basic self care. I stopped showering, brushing my teeth, combing my hair. Had Luis not taken over laundry I surely would have stopped wearing clean clothes. I was so scared that being away from Rosie would ensure harm to her that I kept both of us locked in my master bedroom (figuratively & often literally) all day, every day for nearly six months. I left only for work. I only went downstairs to get food. Luis took over the shopping months before, the house cleaner my mom hired did chores, I washed and folded laundry and obsessively disinfected everything, and fed Rosie every three hours according to her NICU. Schedule. I napped when the demons were at bay, and scrapbooked to keep them from devouring me the rest of the time. I prayed angry, begging prayers, demanding relief constantly. It was too hard. I was losing it.
I couldn't invite my well intentioned neighbors and friends in for fear of disease and because there were simply too many machines to run. My daughter was covered with tubes and wires connected to life saving devices until shortly after her first birthday. Whatever relationships I had outside of the internet shriveled and died. But as my personal self deteriorated, my daughter thrived. She exploded onto the growth charts, catching up with her ACTUAL age by nine months (a feat which takes most micro preemies years to do.) she started reaching developmental milestones on time, and got off of her detested feeding tube by March, only four months after having it placed. This is extraordinarily rare, as most tube fed babies rely on the device for nutrition and fluids for at least a year, and often much longer. She sat up on her own by nine months, and was working on crawling by a year old. She said her first words before her first birthday. She was shining like a diamond.
I wish I could say there was a magical solution to the agony and isolation of having a child with intensive medical needs but there was not. It was a long process of painstakingly slow baby steps, day after day, month after month, punctuated only rarely by sudden bursts of development. She didn't crawl for real or go from laying to sitting on her own until eighteen months. She didn't walk until 26 months. She couldn't stand herself up without pulling on a support until THIS WEEK.
But we are blessed, and she is truly flying now. The journey to get her (almost) "caught up" hurt in every way and taxed every literal and figurative resource both her father and I possess. But it was with it. She has always been my sweetest comfort and dearest little companion. All of those long, lonely, difficult nights brought the three of us together in a way impossible to describe.
My advice to those of you reading who have a child with special needs is simply to not give up on yourself and your kid. Keep good records of their growth and development so that when you hit a brick wall and despair kicks in (that special brand of "it'll NEVER get better!!!" despair that only we know) you can look back and realize how far you've actually come. Celebrate EVERYTHING. Give yourself a break. Don't self medicate with food- it only makes you sick- it doesn't fix your kid. Don't stop talking to your spouse because they're the only ones who really get it. Take naps. Get massages. Talk to someone if the despair gets too heavy to carry on your own. When someone offers to help, LET THEM!
If you know someone with a special needs baby, ask questions. Be emotionally present, and don't get squeamish if it's not good news. Pop in with good nutritious food whenever you can. Offer to clean whenever possible. Realize that bringing the child home from the NICU is the beginning of the hard part, not the end, and adjust accordingly. When in doubt, just send a text asking if they need help. Realize that there's often nothing you CAN do, but that just offering is often enough.
Thank you to those of you who have been there for us over the past three years. I regularly look back and see angels all around us both from heaven and here on earth. Rosie thanks you, too. I know she's happy to be here, and grateful for the chance she's been given to live a full life. At two years and seven months old she's defied all the odds, and I know that she has a bright future inn front of her. She's living proof that miracles exist.
I finish up around 2:45, stash the milk in the mini fridge by my bed, and pass out, exhausted.
Wonk! Wonk! Wonk! Wonk! Wonk!
It's 3:05. The stickers that attach the apnea monitor to my daughter's chest have come loose when they were drenched by leaked milk earlier. I grab a new pair. Reattach them. Reset the monitor. Go back to sleep. 3:15
Beep beep beep beep! Beep beep beep beep! 4:30- time to start the feeding pump so baby can get her next meal. It runs quickly, simulating a bottle feed to maintain her stomach's elasticity. I doze for twenty minutes until yet another alarm- Beep boo! Beep boo! Beep boo!- alerts me it's finished my work for me. I disconnect the tubing from the stomach valve, triple check to make sure it's closed this time, flush the port with clean water, cover her up, and go back to bed. long We'll wake in three hours to start our daily routine of physical and occupational therapy, work, chores, and daddy. Every day I sterilize every hard surface in the house with Clorox wipes. She can't get sick. Even with the support of breast milk RSV could kill her.
Bringing a baby home from the NICU is just the start of an excruciatiny long journey. When I brought Rosie home, the stress of the awrsome responsibility placed on me, the never-ending medical interventions, and sleep depravation triggered severe PPD & PTSD. I would have been suicidal if I hadn't had such an unbreakable bond with my baby coupled with the sure knowledge that she would undoubtedly suffer unspeakably were I not there to safeguard her every step of the way. I was so tired and emotionally exhausted I fantasized about death daily, but felt ashamed to talk about my feelings and totally unaware how to schedule any time for myself to get professional help or even provide myself with basic self care. I stopped showering, brushing my teeth, combing my hair. Had Luis not taken over laundry I surely would have stopped wearing clean clothes. I was so scared that being away from Rosie would ensure harm to her that I kept both of us locked in my master bedroom (figuratively & often literally) all day, every day for nearly six months. I left only for work. I only went downstairs to get food. Luis took over the shopping months before, the house cleaner my mom hired did chores, I washed and folded laundry and obsessively disinfected everything, and fed Rosie every three hours according to her NICU. Schedule. I napped when the demons were at bay, and scrapbooked to keep them from devouring me the rest of the time. I prayed angry, begging prayers, demanding relief constantly. It was too hard. I was losing it.
I couldn't invite my well intentioned neighbors and friends in for fear of disease and because there were simply too many machines to run. My daughter was covered with tubes and wires connected to life saving devices until shortly after her first birthday. Whatever relationships I had outside of the internet shriveled and died. But as my personal self deteriorated, my daughter thrived. She exploded onto the growth charts, catching up with her ACTUAL age by nine months (a feat which takes most micro preemies years to do.) she started reaching developmental milestones on time, and got off of her detested feeding tube by March, only four months after having it placed. This is extraordinarily rare, as most tube fed babies rely on the device for nutrition and fluids for at least a year, and often much longer. She sat up on her own by nine months, and was working on crawling by a year old. She said her first words before her first birthday. She was shining like a diamond.
I wish I could say there was a magical solution to the agony and isolation of having a child with intensive medical needs but there was not. It was a long process of painstakingly slow baby steps, day after day, month after month, punctuated only rarely by sudden bursts of development. She didn't crawl for real or go from laying to sitting on her own until eighteen months. She didn't walk until 26 months. She couldn't stand herself up without pulling on a support until THIS WEEK.
But we are blessed, and she is truly flying now. The journey to get her (almost) "caught up" hurt in every way and taxed every literal and figurative resource both her father and I possess. But it was with it. She has always been my sweetest comfort and dearest little companion. All of those long, lonely, difficult nights brought the three of us together in a way impossible to describe.
My advice to those of you reading who have a child with special needs is simply to not give up on yourself and your kid. Keep good records of their growth and development so that when you hit a brick wall and despair kicks in (that special brand of "it'll NEVER get better!!!" despair that only we know) you can look back and realize how far you've actually come. Celebrate EVERYTHING. Give yourself a break. Don't self medicate with food- it only makes you sick- it doesn't fix your kid. Don't stop talking to your spouse because they're the only ones who really get it. Take naps. Get massages. Talk to someone if the despair gets too heavy to carry on your own. When someone offers to help, LET THEM!
If you know someone with a special needs baby, ask questions. Be emotionally present, and don't get squeamish if it's not good news. Pop in with good nutritious food whenever you can. Offer to clean whenever possible. Realize that bringing the child home from the NICU is the beginning of the hard part, not the end, and adjust accordingly. When in doubt, just send a text asking if they need help. Realize that there's often nothing you CAN do, but that just offering is often enough.
Thank you to those of you who have been there for us over the past three years. I regularly look back and see angels all around us both from heaven and here on earth. Rosie thanks you, too. I know she's happy to be here, and grateful for the chance she's been given to live a full life. At two years and seven months old she's defied all the odds, and I know that she has a bright future inn front of her. She's living proof that miracles exist.
Monday, November 16, 2015
Life after the NICU part 1
I bring my six month old surviving twin home from the hospital on November 12th, 2013. We practically run out of the hospital doors- we walk as fast as you can pulling an oxygen tank, a feeding pump, several paper grocery bags of medical supplies, three boxes of personal items and clothing we'd accumulated over the previous months, and a car seat with a precious 7 pound baby. My heart pounding in my chest, I can't catch my breath, we can't get out of there fast enough. I am scared that we'll get everything packed, head for the door, and get called back because of some test result or technicality. I make a secret pact with Rosie that we'll make a break for it if they tried to stop us. I am exiting the doors of Utah Valley Regional Medical Center on November 12th with my baby with or without their permission.
We take one step closer to the door and farther from the torment of waiting indefinitely. Two steps closer to the door, and a step farther from the haunting pain of sitting next to the bed space where her brother died in my arms six months ago. Three steps, four steps, five steps, ten steps closer to the door and a step closer to a future without having to watch people torture my daughter to keep her alive. At home there will be no lumbar punctures, no medically induced paralysis, no heel sticks drawing blood every hour, no food supplements that made her writhe in pain and stop breathing, no surgeries puncturing her sweet perfect skin with ugly red scars, no intubation, no extubation, no needles, no CPAP helmets, no ART lines, no PICC lines, no transfusions with their accompanying day long fasts... I can't walk out of here fast enough, but they won't let me run. Tears start to well up in my eyes.
The last step and we're there. Glass doors open with a whoosh of cold, fresh air. There's no smell of hospital antiseptic and latex here. It smells like snow and asphalt and pine.
There is an impossibly bright blue, cloudless November sky. It is cold, but brilliantly sunny. The light blinds me- I haven't been outside in sun like this long enough to appreciate it in nearly a year. My tired eyes struggle to adjust to the light that they've forgotten exists. I've never been so happy and so scared in my life. The baby squints and squirms in the sunlight. She's never been outside in the sun before.
We take some quick photos. The Doctor that resuscitated her in the delivery room is there to wish us goodbye. He performed five minutes of chest compressions on a 1 pound baby to give her a fighting chance at this life. I'm glad he's there. I'm sure some day I'll want to savor this moment, but at the time all I want to do is get in my car and floor it. I want to drive away from this place and never even peek backwards in the rear view mirror. We did it. We made it, so why am I so scared? I realize long after that it's because I feel like we've cheated death, even now I'm still secretly waiting for the Grim Reaper to come collect his payment. But today is not that day.
The parent supports group in the NICU came by every Tuesday for six months bearing gifts to lift our spirits and cheer us in our journey. One week they brought me a CD with Jenny Oaks Baker (a violinist) performing orchestral versions of Disney songs. This has been my soundtrack for the past few months, and cues up as I turn the key to race off. As we pull away from the hospital, "Baby Mine" breaks down a dam of emotion that I've been building since June to hold back my feelings and keep me sane. Stone by stone, pebble by pebble, the damn disintegrates and I'm so overtaken by feeling I can barely drive. As I pull into my neighborhood "When you Wish Upon a Star" starts playing. My house has been covered with pink balloons and a banner that says "Welcome Home Rosie" and I sit in my driveway sobbing big fat ugly crybaby tears for a long, long time.
I know that the road ahead of us will be long and difficult. My precious infant daughter, still a newborn at six months old, had a hole cut into her, a piercing through layers of skin, fat, muscle, and organ tissue that will allow us to feed her and keep her alive despite the fact that she cannot drink on her own. It's a blessing and a curse, and every bit as gross as it sounds.
She still cannot breathe on her own. For now she's breathing with the help of a nasal cannula and small, portable oxygen tank. In a few days they'll bring by a beastly machine that vibrates the entire second story of my house and sounds like a monster breathing smoke and fire.
She has a monitor to tell me when she stops breathing and when her heart rate gets dangerously low. It goes off more often than I am emotionally prepared to handle and it's as loud as death.
pshhhhhhh pssssssssssst...... pshhhhhhhhh pssssssssst.... pshhhhhh pssssssssst
Shreeeeeeeeeeeeeeiiiiiiiik!
Sobbing tears of exhaustion, relief, and joy in my driveway, I KNOW that there will be painful, frustrating, exhausting days ahead of us, but today is not that day. Today, everything is perfect.
We take one step closer to the door and farther from the torment of waiting indefinitely. Two steps closer to the door, and a step farther from the haunting pain of sitting next to the bed space where her brother died in my arms six months ago. Three steps, four steps, five steps, ten steps closer to the door and a step closer to a future without having to watch people torture my daughter to keep her alive. At home there will be no lumbar punctures, no medically induced paralysis, no heel sticks drawing blood every hour, no food supplements that made her writhe in pain and stop breathing, no surgeries puncturing her sweet perfect skin with ugly red scars, no intubation, no extubation, no needles, no CPAP helmets, no ART lines, no PICC lines, no transfusions with their accompanying day long fasts... I can't walk out of here fast enough, but they won't let me run. Tears start to well up in my eyes.
The last step and we're there. Glass doors open with a whoosh of cold, fresh air. There's no smell of hospital antiseptic and latex here. It smells like snow and asphalt and pine.
There is an impossibly bright blue, cloudless November sky. It is cold, but brilliantly sunny. The light blinds me- I haven't been outside in sun like this long enough to appreciate it in nearly a year. My tired eyes struggle to adjust to the light that they've forgotten exists. I've never been so happy and so scared in my life. The baby squints and squirms in the sunlight. She's never been outside in the sun before.
We take some quick photos. The Doctor that resuscitated her in the delivery room is there to wish us goodbye. He performed five minutes of chest compressions on a 1 pound baby to give her a fighting chance at this life. I'm glad he's there. I'm sure some day I'll want to savor this moment, but at the time all I want to do is get in my car and floor it. I want to drive away from this place and never even peek backwards in the rear view mirror. We did it. We made it, so why am I so scared? I realize long after that it's because I feel like we've cheated death, even now I'm still secretly waiting for the Grim Reaper to come collect his payment. But today is not that day.
The parent supports group in the NICU came by every Tuesday for six months bearing gifts to lift our spirits and cheer us in our journey. One week they brought me a CD with Jenny Oaks Baker (a violinist) performing orchestral versions of Disney songs. This has been my soundtrack for the past few months, and cues up as I turn the key to race off. As we pull away from the hospital, "Baby Mine" breaks down a dam of emotion that I've been building since June to hold back my feelings and keep me sane. Stone by stone, pebble by pebble, the damn disintegrates and I'm so overtaken by feeling I can barely drive. As I pull into my neighborhood "When you Wish Upon a Star" starts playing. My house has been covered with pink balloons and a banner that says "Welcome Home Rosie" and I sit in my driveway sobbing big fat ugly crybaby tears for a long, long time.
I know that the road ahead of us will be long and difficult. My precious infant daughter, still a newborn at six months old, had a hole cut into her, a piercing through layers of skin, fat, muscle, and organ tissue that will allow us to feed her and keep her alive despite the fact that she cannot drink on her own. It's a blessing and a curse, and every bit as gross as it sounds.
She still cannot breathe on her own. For now she's breathing with the help of a nasal cannula and small, portable oxygen tank. In a few days they'll bring by a beastly machine that vibrates the entire second story of my house and sounds like a monster breathing smoke and fire.
She has a monitor to tell me when she stops breathing and when her heart rate gets dangerously low. It goes off more often than I am emotionally prepared to handle and it's as loud as death.
pshhhhhhh pssssssssssst...... pshhhhhhhhh pssssssssst.... pshhhhhh pssssssssst
Shreeeeeeeeeeeeeeiiiiiiiik!
Sobbing tears of exhaustion, relief, and joy in my driveway, I KNOW that there will be painful, frustrating, exhausting days ahead of us, but today is not that day. Today, everything is perfect.
Friday, November 13, 2015
NICU
Bing! Bing! Bing! Bing! Bing!
Beep-b-b-beep! Beep-b-b-beep!
Wonk! Wonk! Wonk!
Bee-doo! Bee-doo! Bee-doo!
Pocka pocka pocka pocka pocka pocka pocka pocka pocka pocka pocka pocka pocka....
It's the rhythm here- a cacophony of sounds that assaults you, shakes you, crushes you. It stays with you in your dreams. These dreams are full of skipped heartbeats. Full of unspoken dread. Full of noise and chaos, that eventually lulls into a quiet, excruciating calm that you learn to never fully trust. You cannot separate your waking hours from your sleeping hours, and after a week it begins to blur together in to a kind of helpless act of emotional acrobatics that has you swinging from the highest highs to the lowest lows.
2 a.m. "Farias CODE 9387. How is she? How much oxygen is she on? I can't sleep."
There is no escape because you don't want to escape- because in the middle of all of the noise and pressure sits a single tiny oasis of pure joy. You have to pass through hell to get there, but once every three hours you get to open the lid of the incubator and there she is. You can breathe again.
2 a.m. "Farias CODE 9387. How is she? How much oxygen is she on? I can't sleep."
There is no escape because you don't want to escape- because in the middle of all of the noise and pressure sits a single tiny oasis of pure joy. You have to pass through hell to get there, but once every three hours you get to open the lid of the incubator and there she is. You can breathe again.
You didn't even realize you were holding your breath. You didn't know how starved for air you were, but when you see that tiny bundle lying there you can feel your heart beating again, feel your lungs filling with sweet, fresh air.
She's so small. So, impossibly small. How can anyone that tiny survive? She's so small that doll clothes would drown her. Small enough to hold in your outstretched hands. She's so, so small. And she's sick. They tell you they can make no promises, but you already know that. You said goodbye to her brother a few days ago. And you've already said your goodbyes to her- thanked her for the honor of being her mother and told her how badly you'd miss her. It was that night when they both got so sick- that night when her saturation plummeted and they couldn't get her sats over 70 even with her oxygen turned all the way up to 100%. It was when she turned that horrid shade of grey, when they pushed the "Code" button and a dozen medical personnel appeared out of nowhere. You cupped her in your hands and whispered those words to her. "Goodbye. I love you forever. You're the most beautiful thing I've ever seen."
They pushed you off to the side, and stabilized her.
This scene you'll see repeated a dozen times over the next six months- you'll lose track of all the times she's in single digits- but you've learned your lesson. They stop sugar-coating things for you because they know it doesn't matter. You'll never say goodbye to her again no matter how grim of a prognosis they give you, because she's the one who decided to fight.
They pushed you off to the side, and stabilized her.
This scene you'll see repeated a dozen times over the next six months- you'll lose track of all the times she's in single digits- but you've learned your lesson. They stop sugar-coating things for you because they know it doesn't matter. You'll never say goodbye to her again no matter how grim of a prognosis they give you, because she's the one who decided to fight.
The earth rotates around it's axis at about 1,000 miles per hour. We don't feel it because we're on it, but we're sitting out in space just zipping right along. That's the way things work in the NICU. Everything is careening through space and time at a thousand miles per hour, but you don't feel it because you're in it. Every second of time that ticks by, something is changing. It all moves remarkably fast. Sats go up, sats go down, diapers get changed, med lines get swapped, alarms constantly go off everywhere, and everything is constantly changing, but it feels like you're frozen in a single instant. You can't leave. Most days it feels like you'll never leave, so you sit. You pray. You wait. You take up crochet because counting the stitches is easier than watching the numbers on the monitor go up and down. One, two, three, four, five, six, seven... beep! beep! beep! beep!
"She needs to be turned down. She's been at 99% for twenty minutes!"
eight, nine, ten, eleven, twelve... and turn.
Week 10, you get to hold her for the first time. Week 12, she gets off of artificial respiration (life support). Week 16, it's her due date, and she's already had more trauma that most adults, but it's been a few weeks since she was in critical condition so you dare give her a kiss on the top of her head for the first time. Week 18, she takes her first bottle and starts wearing clothes...
The NICU is great equalizer. Parents from all walks of life come together there and forge an unspoken, unbreakable bond. You learn a secret language full of vocabulary that you alone understand- ROP, PDA, FIO2, Jet, NIPPV, CPAP, A's & B's. You hold each other, pray for each other, wait for each other, and catch each other when the unthinkable happens. Rich, poor, old, young, conservative, liberal, Christian, Jew, Hindu, Muslim, Atheist- it doesn't matter. Tattooed twenty-something Hipsters next to middle-aged Good ol' Boys. You get together on Tuesday nights to eat cheap pizza and show off your battle scars for the week. Everybody carrying the same load and sharing it the best they can. You are all veterans of the same war.
And that's what the NICU is. It's noise, terror, blood, sweat, tears, and the ticking of a clock, the counting of a breath that promises you one more day, one more hour, one more second of hope.
One. Just hold on.
Two. Just hold on.
Three. Just hold on.
One way or another everyone leaves eventually.
-------------------------------------------------------------
Post script:
During our time in the NICU people reached out constantly. Many asked what they could do to help. Here are my suggestions if you know someone in the NICU
1. Gift cards to restaurants, laundry services, gas, or any other convenience item. NICU parents put their lives on hold, including basic necessities such as feeding themselves and keeping the house clean in order to be near their child. If they have to drive more than fifteen minutes each way to their child's NICU those trips to the pump add up fast!
2. Collect NICU- appropriate comfort items for baby. The number one need is for thin swaddling blankets from muslin or thin cotton. Other items include cloth diapers, Dr. Browns bottles, cards & pictures for baby's bed space, and WubbaNub pacifiers.
3. Don't ever ask "When." There are too many variables and the insecurity of not knowing how long you'll have to bear the burden is excruciating. It's by far the hardest part of having a kid in the NICU. Most parents don't know when major milestones will occur until they day they occur. We were personally given 24 hr notice the day we brought Rosie home, after 159 days of saying "we don't know when..."
4. Do ask "How" and "What" and don't be squeamish if the answer is grim. Not feeling allowed to talk about the hard stuff is the second hardest part.
5. Don't disappear. The initial outpouring of love and support for us was tremendous, but petered off dramatically after about two weeks. That's normal, but realize that day 100 might be just as scary as day one, and that bringing a sick baby home is just the beginning. Even if it's just a text, to say hey it helps.
6. If you can do more, be a volunteer- bring groceries, cut lawns, walk dogs, babysit whenever you can. No gesture is too small, and could mean the difference between having a rough day and being in full blown crisis mode. There were some real angels present in our lives during those 160 days, including the elders from our church who took over all the yard-work, neighbors and work friends who helped us take care of our puppies and kept an eye on Andrei for us, and my parents who were just constantly there one step ahead of me, providing comfort and help. My mom hired us a cleaning service. It was the best thing in the world and I never thank her enough for it but it made all of the difference.
7. Be aware that taking the baby home from the hospital is a very important milestone, but it is by no means the end of the drama or a walk in the park. I was slammed with SEVERE PTSD & PPD after I brought Rosie home and spent the next four or five months as a walking zombie. Taking care of a critically ill child is so very hard, and the need for hands on deck to assist with basic needs is even greater when mommy hasn't slept for a month, can't leave the Master Bedroom because the oxygen tube isn't long enough to reach down the stairs, and no longer has a medical team to rely on for help and reassurance.
"She needs to be turned down. She's been at 99% for twenty minutes!"
eight, nine, ten, eleven, twelve... and turn.
Week 10, you get to hold her for the first time. Week 12, she gets off of artificial respiration (life support). Week 16, it's her due date, and she's already had more trauma that most adults, but it's been a few weeks since she was in critical condition so you dare give her a kiss on the top of her head for the first time. Week 18, she takes her first bottle and starts wearing clothes...
The NICU is great equalizer. Parents from all walks of life come together there and forge an unspoken, unbreakable bond. You learn a secret language full of vocabulary that you alone understand- ROP, PDA, FIO2, Jet, NIPPV, CPAP, A's & B's. You hold each other, pray for each other, wait for each other, and catch each other when the unthinkable happens. Rich, poor, old, young, conservative, liberal, Christian, Jew, Hindu, Muslim, Atheist- it doesn't matter. Tattooed twenty-something Hipsters next to middle-aged Good ol' Boys. You get together on Tuesday nights to eat cheap pizza and show off your battle scars for the week. Everybody carrying the same load and sharing it the best they can. You are all veterans of the same war.
And that's what the NICU is. It's noise, terror, blood, sweat, tears, and the ticking of a clock, the counting of a breath that promises you one more day, one more hour, one more second of hope.
One. Just hold on.
Two. Just hold on.
Three. Just hold on.
One way or another everyone leaves eventually.
-------------------------------------------------------------
Post script:
During our time in the NICU people reached out constantly. Many asked what they could do to help. Here are my suggestions if you know someone in the NICU
1. Gift cards to restaurants, laundry services, gas, or any other convenience item. NICU parents put their lives on hold, including basic necessities such as feeding themselves and keeping the house clean in order to be near their child. If they have to drive more than fifteen minutes each way to their child's NICU those trips to the pump add up fast!
2. Collect NICU- appropriate comfort items for baby. The number one need is for thin swaddling blankets from muslin or thin cotton. Other items include cloth diapers, Dr. Browns bottles, cards & pictures for baby's bed space, and WubbaNub pacifiers.
3. Don't ever ask "When." There are too many variables and the insecurity of not knowing how long you'll have to bear the burden is excruciating. It's by far the hardest part of having a kid in the NICU. Most parents don't know when major milestones will occur until they day they occur. We were personally given 24 hr notice the day we brought Rosie home, after 159 days of saying "we don't know when..."
4. Do ask "How" and "What" and don't be squeamish if the answer is grim. Not feeling allowed to talk about the hard stuff is the second hardest part.
5. Don't disappear. The initial outpouring of love and support for us was tremendous, but petered off dramatically after about two weeks. That's normal, but realize that day 100 might be just as scary as day one, and that bringing a sick baby home is just the beginning. Even if it's just a text, to say hey it helps.
6. If you can do more, be a volunteer- bring groceries, cut lawns, walk dogs, babysit whenever you can. No gesture is too small, and could mean the difference between having a rough day and being in full blown crisis mode. There were some real angels present in our lives during those 160 days, including the elders from our church who took over all the yard-work, neighbors and work friends who helped us take care of our puppies and kept an eye on Andrei for us, and my parents who were just constantly there one step ahead of me, providing comfort and help. My mom hired us a cleaning service. It was the best thing in the world and I never thank her enough for it but it made all of the difference.
7. Be aware that taking the baby home from the hospital is a very important milestone, but it is by no means the end of the drama or a walk in the park. I was slammed with SEVERE PTSD & PPD after I brought Rosie home and spent the next four or five months as a walking zombie. Taking care of a critically ill child is so very hard, and the need for hands on deck to assist with basic needs is even greater when mommy hasn't slept for a month, can't leave the Master Bedroom because the oxygen tube isn't long enough to reach down the stairs, and no longer has a medical team to rely on for help and reassurance.
Thursday, November 5, 2015
High Risk Pregnancy
This is a hard post to write. To be completely honest, the most realistic way to write this post would be to not write it at all. It would be a page full of punctuation and blank, lifeless, empty, white space.
Something like that. Only infinite.
As I hinted in my post about infertility, I knew 3 things very early on in my pregnancy:
1. There were some serious problems
2. There were not one, but two babies I had to fight for, and
3. I wanted both of them So. Very. Desperately.
Desperate doesn't really begin to scratch the surface of my feelings for those babies. Often, throughout the ensuing months and years, when trying to verbalize my feelings the only thing that comes to mind is a picture of molten steel being poured into a mold and then hammered out, still glowing red, by a smith into a broad sword.
Heat. Intense, fiery, all-consuming heat combined with absolute, irony strength and eventually a honed blade. My love for my children cuts through everything.
In that very first blobby, grainy ultrasound I died and was reborn. I walked in that morning to confirm my miscarriage, ready to accept my fate as a childless, barren woman. No baby could have survived what I'd experienced the night before. I walked out of that clinic a mother of twins. I don't think my love for my children is anything extraordinary. All mothers experience that transformative, breathtaking love that comes with childbearing. The iron determination in me to fight for them might be a little bit more than some mothers experience, however. After all, I had built up to this experience for 31 years and it was my last chance to live out my dreams of having MY OWN family. You fight for something like that. You don't let it go easily.
Not during day after day of hemorrhaging (a persistent subchorionic hematoma that produced apricot sized clots). Not during the nausea, vomiting, heartburn, and migraines typical of any pregnancy. Not during trip, after trip, after trip to the urgent care and ER because something was wrong. Sitting up hurts to much. Can't walk. Too much pressure. Not during months of blood testing (both arms blown up with angry black and blue bruises- hormones aren't right. Not enough Progesterone. "Threatened miscarriage"). Not during my cerclage surgery (your body doesn't want to hold on to these babies- we have to sew them in, stitch you up tight). Not during more injections- hormones to prevent pre term labor that make your mouth taste of metal and your nose fill with the aroma of burnt rubber.
You don't even give up that dream when you're put on bed rest at weeks five, nine, ten, twelve, fourteen. Week 16, just stay in bed this time. This is for the long term. I promise my babies that I will be the last one to lose hope- the last one to quit. I feel like they need to hear it. I'm in if they're in. We make a pact.
Imagine staring at a screen with nothing but black & white static, no sound but white noise, knowing that staring into that abyss is the only thing keeping you from falling apart- keeping your dearest dream alive. That's what bed rest feels like. Don't blink. Don't take your eyes off the screen. Don't move a muscle. Don't go to the bathroom. Don't get up. For Heaven's sake, don't get up. Just wiggle around to get as comfy as you can, and try to think about happy things.
Oh yeah. I'm pregnant. I have Pinterest board called "Maybe Baby." I made it during the long appointments at the RE's office during my IVF procedure. It's full of pictures of chubby newborn photography, round-bellied pregnant ladies smiling during yoga and swim classes, recipes for lactation cookies, bright nurseries, baby shower themes (Thing 1 & Thing 2... With a cotton candy machine!... Squee!).
I can't look at these now. It hurts too much, yet I can't bring myself to delete it. My pregnancy is nothing like this. I'm four and a half, five, six months pregnant with twins and I don't even own maternity clothes. I can't gain enough weight to fit them and I don't leave my bed anyway. I don't need cute belly bands, I need a new bath robe. This one is getting nasty since I can only shower maybe two or three times a week.
Speaking of showers, I don't ask anyone to throw me one. I couldn't go anyway, and there's no point in buying anything for my little girl or little boy until I'm sure they're going to survive. My babies don't need diaper bags, they need a friggin miracle.
This isn't the joyful season it's meant to be. It feels like serving time on death row, waiting for the Governor's pardon or for my appeal to go through. Prayers all day, every day whispered, just a single word over and over...
Please.
Please.
Please, God. Please.
And I feel ashamed to be anything other than thrilled, so I lie, and save my real feelings for later, because I'm afraid if I think those real thoughts the babies will feel them and give up on me.
I can't let them know that mommy is scared, angry, and sad, because they might never know me on the outside so I have to turn in toward them and love them from the inside out. So if that's all they ever know of this world, it'll be love.
The little boy likes music and dances for me when I put my iPad on my belly. I try to let him dance as much as he can now in case there is no later. I don't want his only life experiences to be marked with pervading dread. I lie to them. The little girl kicks her brother when he gets the hiccups. They both seem to like fruit salad and quesadillas. I have nightmares of giving birth to chipmunk sized babies in my bath tub alone. The babies in those dreams are covered in blood and they talk to me. They tell me they are happy. In my dreams I'm often looking for twin B. He's always lost.
We hold our collective breaths and wait. Each hour is a victory, a race against time, a chance for them to get stronger. I am so much weaker, but my love for them burns so bright.
Iron has to be melted before it can be forged into steel. The hotter the fire, the harder the steel.
Instead of growing round & soft, I am growing hard. Instead of glowing, I burn.
It's good that I am hard because one morning I wake up and something is wrong. It is two in the morning. I go check. I'm scared my water has broken. It hasn't, I don't think. But there's an awful lot of blood. I am 23 weeks & 5 days pregnant- the very limit of fetal viability. And I know it's going to happen
soon.
I leave for the doctor as soon as the clinic opens. I don't come home for six months.
In many ways, I never come home.
Something like that. Only infinite.
As I hinted in my post about infertility, I knew 3 things very early on in my pregnancy:
1. There were some serious problems
2. There were not one, but two babies I had to fight for, and
3. I wanted both of them So. Very. Desperately.
Desperate doesn't really begin to scratch the surface of my feelings for those babies. Often, throughout the ensuing months and years, when trying to verbalize my feelings the only thing that comes to mind is a picture of molten steel being poured into a mold and then hammered out, still glowing red, by a smith into a broad sword.
Heat. Intense, fiery, all-consuming heat combined with absolute, irony strength and eventually a honed blade. My love for my children cuts through everything.
In that very first blobby, grainy ultrasound I died and was reborn. I walked in that morning to confirm my miscarriage, ready to accept my fate as a childless, barren woman. No baby could have survived what I'd experienced the night before. I walked out of that clinic a mother of twins. I don't think my love for my children is anything extraordinary. All mothers experience that transformative, breathtaking love that comes with childbearing. The iron determination in me to fight for them might be a little bit more than some mothers experience, however. After all, I had built up to this experience for 31 years and it was my last chance to live out my dreams of having MY OWN family. You fight for something like that. You don't let it go easily.
Not during day after day of hemorrhaging (a persistent subchorionic hematoma that produced apricot sized clots). Not during the nausea, vomiting, heartburn, and migraines typical of any pregnancy. Not during trip, after trip, after trip to the urgent care and ER because something was wrong. Sitting up hurts to much. Can't walk. Too much pressure. Not during months of blood testing (both arms blown up with angry black and blue bruises- hormones aren't right. Not enough Progesterone. "Threatened miscarriage"). Not during my cerclage surgery (your body doesn't want to hold on to these babies- we have to sew them in, stitch you up tight). Not during more injections- hormones to prevent pre term labor that make your mouth taste of metal and your nose fill with the aroma of burnt rubber.
You don't even give up that dream when you're put on bed rest at weeks five, nine, ten, twelve, fourteen. Week 16, just stay in bed this time. This is for the long term. I promise my babies that I will be the last one to lose hope- the last one to quit. I feel like they need to hear it. I'm in if they're in. We make a pact.
Imagine staring at a screen with nothing but black & white static, no sound but white noise, knowing that staring into that abyss is the only thing keeping you from falling apart- keeping your dearest dream alive. That's what bed rest feels like. Don't blink. Don't take your eyes off the screen. Don't move a muscle. Don't go to the bathroom. Don't get up. For Heaven's sake, don't get up. Just wiggle around to get as comfy as you can, and try to think about happy things.
Oh yeah. I'm pregnant. I have Pinterest board called "Maybe Baby." I made it during the long appointments at the RE's office during my IVF procedure. It's full of pictures of chubby newborn photography, round-bellied pregnant ladies smiling during yoga and swim classes, recipes for lactation cookies, bright nurseries, baby shower themes (Thing 1 & Thing 2... With a cotton candy machine!... Squee!).
I can't look at these now. It hurts too much, yet I can't bring myself to delete it. My pregnancy is nothing like this. I'm four and a half, five, six months pregnant with twins and I don't even own maternity clothes. I can't gain enough weight to fit them and I don't leave my bed anyway. I don't need cute belly bands, I need a new bath robe. This one is getting nasty since I can only shower maybe two or three times a week.
Speaking of showers, I don't ask anyone to throw me one. I couldn't go anyway, and there's no point in buying anything for my little girl or little boy until I'm sure they're going to survive. My babies don't need diaper bags, they need a friggin miracle.
This isn't the joyful season it's meant to be. It feels like serving time on death row, waiting for the Governor's pardon or for my appeal to go through. Prayers all day, every day whispered, just a single word over and over...
Please.
Please.
Please, God. Please.
And I feel ashamed to be anything other than thrilled, so I lie, and save my real feelings for later, because I'm afraid if I think those real thoughts the babies will feel them and give up on me.
I can't let them know that mommy is scared, angry, and sad, because they might never know me on the outside so I have to turn in toward them and love them from the inside out. So if that's all they ever know of this world, it'll be love.
The little boy likes music and dances for me when I put my iPad on my belly. I try to let him dance as much as he can now in case there is no later. I don't want his only life experiences to be marked with pervading dread. I lie to them. The little girl kicks her brother when he gets the hiccups. They both seem to like fruit salad and quesadillas. I have nightmares of giving birth to chipmunk sized babies in my bath tub alone. The babies in those dreams are covered in blood and they talk to me. They tell me they are happy. In my dreams I'm often looking for twin B. He's always lost.
We hold our collective breaths and wait. Each hour is a victory, a race against time, a chance for them to get stronger. I am so much weaker, but my love for them burns so bright.
Iron has to be melted before it can be forged into steel. The hotter the fire, the harder the steel.
Instead of growing round & soft, I am growing hard. Instead of glowing, I burn.
It's good that I am hard because one morning I wake up and something is wrong. It is two in the morning. I go check. I'm scared my water has broken. It hasn't, I don't think. But there's an awful lot of blood. I am 23 weeks & 5 days pregnant- the very limit of fetal viability. And I know it's going to happen
soon.
I leave for the doctor as soon as the clinic opens. I don't come home for six months.
In many ways, I never come home.
Subscribe to:
Posts (Atom)