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.
Monday, November 16, 2015
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.
Wednesday, November 4, 2015
Ready to Talk- Infertility
I feel like I'm ready to talk about the past few years now. I'm coming up on my THREE year anniversary of my first (secret) IVF cycle, so I'm going to start there- with infertility and IVF.
In the dawn of time I was born into a family already scarred by divorce. I was the product of my mom's second marriage and my dad's third. Let that sink in a minute. I've never known a day of my life where my identity wasn't intrinsically associated with the tragedy of a broken family. I wouldn't exist if my mom's first husband hadn't stepped out on her, or if my dad's first wife had been better equipped to cope with his mental illness, or he brave enough to seek treatment. Imagine for a second what it is like to feel branded from your first dim memories of self as an outsider. I never knew my sister's other dad-the one in the desert with the swimming pool. I never knew my brother's other mother- the one with the successful career and the fancy house. I missed them all terribly when they were gone. And I never for one second stopped fantasizing that I would have another family of my own one day that I didn't have to share with someone's other parents.
In college my family life professor said something that changed me forever- he told us we get two chances in our lives to have the "ideal" family- once as a child and once as a parent. I knew in that instant that my job in life was to break the cycle and give my children what I always felt I was missing- a "real" family.
I wanted babies from the second I said, "I do." My fantasy was to have a honeymoon baby and then four more, all three years apart.
But months turned into years and life hit my husband and I hard. Like HARD. Deaths of dear grandparents, our parents on both sides began having just AWFUL problems. Chronic illness. Divorces on both sides of the family. Broken career dreams. And then after two years of non-stop heartache the ugly black label of "infertility" stamped on my forehead... No... Tattooed into my very soul. My diagnosis was PCOS, because I "look" like I have it. My blood tests never matched up. I never responded to any of the PCOS medication. No cysts were visible on ultrasounds.
I spent the next three years choking on herbal remedies, gagging on teas that tasted like hot tar, starving myself to lose the magical thirty percent of my body weight that will supposedly "cure' PCOS, then living through the hell of Clomid- the first line fertility drug that simulates menopause, makes you gain massive amounts of weight, have hot flashes, vomiting, diarrhea, and in my case, psychosis. Violent mood swings in the middle of searing, white hot, psychotic episodes that at one point sent me hurling out of a moving vehicle because I felt like the tiny space was sucking the air- the life- out of my body and I just needed to breathe- to escape.
A hundred pregnancy tests- am I? Aren't I? Could I be?
No. Always no.
No.
No.
No.
No.
Nooooooooooo!
So, so lonely. Lonely like cold on a dark winter night that steals your breath away. No home I can call home to. No-one I can ask for help. Remember? This is my Real Family, but it's not real yet.
Crying. No, sobbing. Love I have no-one to give to. Anger, fear, sadness, pain so bitter it condenses into material form that comes gushing from my eyes any time I am alone for more than a few minutes. Broken glasses smashed on the kitchen floor because I want to smash ME. It is MY fault!
All my fault. Me and my broken rubbish body.
Shards of glass laying glittering on the floor like my lonliness being laid bare for all to see. But there is no-one to see, except a small step son who never asks why Nana is crying- just lays next to me and watches cartoons as I implode day after day, trying to keep my pain inside so it won't break loose and drown him like my mother's pain had drown me. Be better. He needs better. I'm sorry baby. I just tripped. It was an accident. Everything is going to be okay.
Break the cycle.
Be strong.
Don't give up. Don't give up.
I give up.
No. Don't give up.
Acupuncture needles, more herbs. Forgive yourself. Learn to love life. Maybe travel? It'll happen when you stop trying.
Break the cycle. Stay busy. Try to find roses in the thorns. Wouldn't Rose be a pretty name? Don't think about it. Be strong for the boy. He needs you. Your kids at school need you. The kids in your Sunday school class need you. Your husband needs you, although his walls are so thick he'll never admit he needs anyone. He's hurting too, isn't he?
Eight and a half years went by like this. Try something new, failure, need a break, try again.
Finally we came to the end like Lewis and Clark looking out at the vast Pacific... stood looking into the ocean of in vitro. Our life savings. Was it worth it? Nothing else had worked. Would this? Why couldn't I just feel right about adopting? Why couldn't I just be happy staying childless? Why was I putting us all through this? What is so so wrong with me? Why am I so selfish? Why am I always apologizing for wanting a family? Why isn't being a part-time mom enough? I can't justify doing this anymore. I can't live with myself if I don't. Selfish.
They never tell you how much IVF HURTS. You have to inject yourself two to five times a day. The drugs make you sick. They make you really fat. Your hair falls out. Both sides of my bum were covered with bruises so thick I couldn't pierce them with the new needles...
Ovarian Hyperstimulation. I thought I was dying- should have gone to the emergency room. So much pain I passed out from it and woke up unable to catch my breath. Then...
A yes.
Tiny. Fragile, gone too soon. Chemical pregnancy. Miscarriage.
Breathe. Just breathe. We'll try one more time. The last time. It's been nine years and over twenty thousand dollars. This has to be the very last time.
No. We don't know why you're bleeding.
No, you're not having another miscarriage.
You're
Having
Twins.
In the dawn of time I was born into a family already scarred by divorce. I was the product of my mom's second marriage and my dad's third. Let that sink in a minute. I've never known a day of my life where my identity wasn't intrinsically associated with the tragedy of a broken family. I wouldn't exist if my mom's first husband hadn't stepped out on her, or if my dad's first wife had been better equipped to cope with his mental illness, or he brave enough to seek treatment. Imagine for a second what it is like to feel branded from your first dim memories of self as an outsider. I never knew my sister's other dad-the one in the desert with the swimming pool. I never knew my brother's other mother- the one with the successful career and the fancy house. I missed them all terribly when they were gone. And I never for one second stopped fantasizing that I would have another family of my own one day that I didn't have to share with someone's other parents.
In college my family life professor said something that changed me forever- he told us we get two chances in our lives to have the "ideal" family- once as a child and once as a parent. I knew in that instant that my job in life was to break the cycle and give my children what I always felt I was missing- a "real" family.
I wanted babies from the second I said, "I do." My fantasy was to have a honeymoon baby and then four more, all three years apart.
But months turned into years and life hit my husband and I hard. Like HARD. Deaths of dear grandparents, our parents on both sides began having just AWFUL problems. Chronic illness. Divorces on both sides of the family. Broken career dreams. And then after two years of non-stop heartache the ugly black label of "infertility" stamped on my forehead... No... Tattooed into my very soul. My diagnosis was PCOS, because I "look" like I have it. My blood tests never matched up. I never responded to any of the PCOS medication. No cysts were visible on ultrasounds.
I spent the next three years choking on herbal remedies, gagging on teas that tasted like hot tar, starving myself to lose the magical thirty percent of my body weight that will supposedly "cure' PCOS, then living through the hell of Clomid- the first line fertility drug that simulates menopause, makes you gain massive amounts of weight, have hot flashes, vomiting, diarrhea, and in my case, psychosis. Violent mood swings in the middle of searing, white hot, psychotic episodes that at one point sent me hurling out of a moving vehicle because I felt like the tiny space was sucking the air- the life- out of my body and I just needed to breathe- to escape.
A hundred pregnancy tests- am I? Aren't I? Could I be?
No. Always no.
No.
No.
No.
No.
Nooooooooooo!
So, so lonely. Lonely like cold on a dark winter night that steals your breath away. No home I can call home to. No-one I can ask for help. Remember? This is my Real Family, but it's not real yet.
Crying. No, sobbing. Love I have no-one to give to. Anger, fear, sadness, pain so bitter it condenses into material form that comes gushing from my eyes any time I am alone for more than a few minutes. Broken glasses smashed on the kitchen floor because I want to smash ME. It is MY fault!
All my fault. Me and my broken rubbish body.
Shards of glass laying glittering on the floor like my lonliness being laid bare for all to see. But there is no-one to see, except a small step son who never asks why Nana is crying- just lays next to me and watches cartoons as I implode day after day, trying to keep my pain inside so it won't break loose and drown him like my mother's pain had drown me. Be better. He needs better. I'm sorry baby. I just tripped. It was an accident. Everything is going to be okay.
Break the cycle.
Be strong.
Don't give up. Don't give up.
I give up.
No. Don't give up.
Acupuncture needles, more herbs. Forgive yourself. Learn to love life. Maybe travel? It'll happen when you stop trying.
Break the cycle. Stay busy. Try to find roses in the thorns. Wouldn't Rose be a pretty name? Don't think about it. Be strong for the boy. He needs you. Your kids at school need you. The kids in your Sunday school class need you. Your husband needs you, although his walls are so thick he'll never admit he needs anyone. He's hurting too, isn't he?
Eight and a half years went by like this. Try something new, failure, need a break, try again.
Finally we came to the end like Lewis and Clark looking out at the vast Pacific... stood looking into the ocean of in vitro. Our life savings. Was it worth it? Nothing else had worked. Would this? Why couldn't I just feel right about adopting? Why couldn't I just be happy staying childless? Why was I putting us all through this? What is so so wrong with me? Why am I so selfish? Why am I always apologizing for wanting a family? Why isn't being a part-time mom enough? I can't justify doing this anymore. I can't live with myself if I don't. Selfish.
They never tell you how much IVF HURTS. You have to inject yourself two to five times a day. The drugs make you sick. They make you really fat. Your hair falls out. Both sides of my bum were covered with bruises so thick I couldn't pierce them with the new needles...
Ovarian Hyperstimulation. I thought I was dying- should have gone to the emergency room. So much pain I passed out from it and woke up unable to catch my breath. Then...
A yes.
Tiny. Fragile, gone too soon. Chemical pregnancy. Miscarriage.
Breathe. Just breathe. We'll try one more time. The last time. It's been nine years and over twenty thousand dollars. This has to be the very last time.
No. We don't know why you're bleeding.
No, you're not having another miscarriage.
You're
Having
Twins.
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