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.
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