Waking in the desert
One month has passed since I first saw you with my own eyes.
For 8 months, we had seen you in other ways.
We saw you on a plus mark on the pregnancy test.
We saw you in the midday naps I needed.
We saw you in a message from my doctor in August, after screening showed a “normal baby girl.”
We saw you later that month in the monochrome of your first ultrasound.
We saw you in the excited eyes of your siblings when we showed them those ultrasound pictures and told them you were coming.
We saw you in the next ultrasound, the one where I absentmindedly told the technician, “sometimes, this is all you get.”
But that was not all we got.
Even though, on that October day, everything in our world changed, that ultrasound was not all we got.
We got four more months of belly kisses and book readings and coffee abstentions.
We got four more months of kicks and rolls and many, many ultrasounds.
We got a lot of good.
And four months after finding out, you were not “normal,” you came three weeks early, my first baby to break my water at home. My body was not ready to give you up yet. A full 24 hours after my water broke, I was still only dilated 4 cm. I didn’t want to slow down labor any more with the epidural but I was just so tired. My amniotic fluid had been pouring out of me all day, and I barely looked pregnant anymore – you were just a little ball curled on my right side, stubbornly staying put. After finding I had barely progressed over the past 4 hours, I needed relief, so I got the epidural – twice. Turns out, you just needed me to relax, because as soon as I was numb, I was pushing. Two pushes and you were here. The doctors were amazed because you were born “en caul,” taking your first breath only after the doctor ripped open the amniotic sac you came out encased in. Even then, my body didn’t want to let you go. One in 80,000 babies are born this way. You were never meant to be normal.
That sac that had kept you safe for 8 months. Your daddy cut the cord that had brought life into your little 3 pound, 11 oz body. I suppose, we are all dying from the moment we are conceived, but it was so tangible in that moment that we were cutting off your source of life.
You were on my chest, squeaking out small cries that never filled the room. Everything about you was small, except your chest that rose in stuttered breaths that seemed to take more effort than they should. Your eyes opened, first the left and then the right. We had brought a micro preemie hat for your small head, and surprisingly, it barely fit.
Despite a pandemic that had thwarted all visitors, the night shift of nurses and doctors waved our family down the hall to see you.
Your sisters, Cayden and Piper, led your brother Judah down the long hall because they got to meet you first. They were scared and worried and had to wear masks. I was holding you in my bed when they came over to marvel at your soft toes.
You were so wrapped up in blankets and warming packets that I’m not sure they really got a good look at you, but they held your hand as the nurses put a CPAP machine over your face to force air into your lungs to open them up.
They crawled into bed with me as your grandparents and auntie came in to meet you too.
Everyone was trying so hard to be brave.
For over two hours, we passed you around, the nurses giving you CPAP and Tiffany snapping pictures.
We cuddled you, sang to you, smiled when you peeked out at us, everyone silently praying that you would keep breathing.
All too soon, it was time to say the first goodbye.
You were in my arms as your family came one by one for a last kiss. It was horrible.
Your daddy had to peel your sisters away from you and me as they left wailing down the hallways, heads buried in Carrie and grandmas. Piper just wanted to forget it all and Cayden couldn’t fathom a time she ever would.
We stopped the CPAP.
And we waited.
Nurse Katelyn stamped your footprints.
You snuggled up under my chin, tucked into my tank top.
And we waited.
Nurse Krystal washed your hair and face.
The epidural wore off and I got up to take photos of you for the first time.
We put you into the dress Piper bought for you and snuggled you close to the Douglas Cayden had embroidered with your name.
We tried feeding you drops of colostrum from a spoon. We were so excited when you sucked it down, but then it made you aspirate, so we stopped.
You would only taste me that one time.
After that, the nurses and Dr. Julia fed you milk through a tiny tube that reached all the way to your stomach.
You liked to suck on your feeding tube – we were amazed you COULD suck. You blew milk bubbles.
Daddy held you.
I held you.
And we waited.
We moved into a dark room in what they call “The Center,” away from other birthing moms. There was a shower for dad and two beds pushed together for us to spend our first night.
We changed your first of many poopy diapers – we were amazed you COULD poop.
I asked, “Are we doing the right thing? She there’s so much she CAN do.”
There was no answer, because there was no RIGHT thing, but it feels VERY wrong to sit around and wait for your baby to die.
Today, one month later, I woke up in a desert oasis. Spring Break could not have been more aptly timed, and I am so thankful that we get to get away for a bit as a family. But as I left our house on Thursday, scanning for that last thing to pack, making sure I didn't forget anything, my eyes passed your "little sister" onesie on the counter in my bedroom. You only wore it once for a very short time. I realized that I was scanning the room, feeling like I had forgotten to pack something, but what I was missing was you.
It feels wrong to leave our house, even the room where you died, because this is not the way it was supposed to be. You were supposed to vacation with us. You were supposed to be keeping me up at night. You were supposed to be here.
I have to take a breath and realize that in many ways you are still here on vacation with us. Piper brought along your Hallelujah stuffy, which is splayed on their bed. When I fell asleep last night, you were still on my mind. You are here with us always, but boy I wish I could go back to a month ago and hold you again.
Being in the desert, I am reminded of the Israelites, who also had to learn how to wander through dry times. I'm living in Psalm 90 right now, remembering that I am not the first to encounter a struggle over the harsh reality of death.
For 8 months, we had seen you in other ways.
We saw you on a plus mark on the pregnancy test.
We saw you in the midday naps I needed.
We saw you in a message from my doctor in August, after screening showed a “normal baby girl.”
We saw you later that month in the monochrome of your first ultrasound.
We saw you in the excited eyes of your siblings when we showed them those ultrasound pictures and told them you were coming.
We saw you in the next ultrasound, the one where I absentmindedly told the technician, “sometimes, this is all you get.”
But that was not all we got.
Even though, on that October day, everything in our world changed, that ultrasound was not all we got.
We got four more months of belly kisses and book readings and coffee abstentions.
We got four more months of kicks and rolls and many, many ultrasounds.
We got a lot of good.
And four months after finding out, you were not “normal,” you came three weeks early, my first baby to break my water at home. My body was not ready to give you up yet. A full 24 hours after my water broke, I was still only dilated 4 cm. I didn’t want to slow down labor any more with the epidural but I was just so tired. My amniotic fluid had been pouring out of me all day, and I barely looked pregnant anymore – you were just a little ball curled on my right side, stubbornly staying put. After finding I had barely progressed over the past 4 hours, I needed relief, so I got the epidural – twice. Turns out, you just needed me to relax, because as soon as I was numb, I was pushing. Two pushes and you were here. The doctors were amazed because you were born “en caul,” taking your first breath only after the doctor ripped open the amniotic sac you came out encased in. Even then, my body didn’t want to let you go. One in 80,000 babies are born this way. You were never meant to be normal.
That sac that had kept you safe for 8 months. Your daddy cut the cord that had brought life into your little 3 pound, 11 oz body. I suppose, we are all dying from the moment we are conceived, but it was so tangible in that moment that we were cutting off your source of life.
You were on my chest, squeaking out small cries that never filled the room. Everything about you was small, except your chest that rose in stuttered breaths that seemed to take more effort than they should. Your eyes opened, first the left and then the right. We had brought a micro preemie hat for your small head, and surprisingly, it barely fit.
Despite a pandemic that had thwarted all visitors, the night shift of nurses and doctors waved our family down the hall to see you.
Your sisters, Cayden and Piper, led your brother Judah down the long hall because they got to meet you first. They were scared and worried and had to wear masks. I was holding you in my bed when they came over to marvel at your soft toes.
You were so wrapped up in blankets and warming packets that I’m not sure they really got a good look at you, but they held your hand as the nurses put a CPAP machine over your face to force air into your lungs to open them up.
They crawled into bed with me as your grandparents and auntie came in to meet you too.
Everyone was trying so hard to be brave.
For over two hours, we passed you around, the nurses giving you CPAP and Tiffany snapping pictures.
We cuddled you, sang to you, smiled when you peeked out at us, everyone silently praying that you would keep breathing.
All too soon, it was time to say the first goodbye.
You were in my arms as your family came one by one for a last kiss. It was horrible.
Your daddy had to peel your sisters away from you and me as they left wailing down the hallways, heads buried in Carrie and grandmas. Piper just wanted to forget it all and Cayden couldn’t fathom a time she ever would.
We stopped the CPAP.
And we waited.
Nurse Katelyn stamped your footprints.
You snuggled up under my chin, tucked into my tank top.
And we waited.
Nurse Krystal washed your hair and face.
The epidural wore off and I got up to take photos of you for the first time.
We put you into the dress Piper bought for you and snuggled you close to the Douglas Cayden had embroidered with your name.
We tried feeding you drops of colostrum from a spoon. We were so excited when you sucked it down, but then it made you aspirate, so we stopped.
You would only taste me that one time.
After that, the nurses and Dr. Julia fed you milk through a tiny tube that reached all the way to your stomach.
You liked to suck on your feeding tube – we were amazed you COULD suck. You blew milk bubbles.
Daddy held you.
I held you.
And we waited.
We moved into a dark room in what they call “The Center,” away from other birthing moms. There was a shower for dad and two beds pushed together for us to spend our first night.
We changed your first of many poopy diapers – we were amazed you COULD poop.
I asked, “Are we doing the right thing? She there’s so much she CAN do.”
There was no answer, because there was no RIGHT thing, but it feels VERY wrong to sit around and wait for your baby to die.
We had decided not to take drastic measures (ventilators and surgeries), but to see what you could do on your own. The ultrasounds and MRIs on your brain told us that your brain had stopped developing correctly a long time ago and there were many parts missing that would be necessary for you to even think and reason. We didn’t want your life to be lived in a hospital. We didn’t want your life to be full of pain and struggle. We wanted so badly to “fix” you, but the brain just can’t be fixed.
While we were witnessing your brain do some of the basic functions needed for life, we also recognized that you didn’t ever cry because you needed something – your brain wasn’t making the connection. We had to give you food on a schedule, because you didn’t cry when you were hungry. We had to check your diaper because you didn’t cry when you were poopy. And when your body needed more oxygen, your brain couldn’t tell your body to breathe regularly. When you were breathing relatively well, we called it "yellow breathing" because your coloring would match your favorite cream-colored blanket Marsha got for us that we always wrapped you in. When your breathing was intermittent, sometimes with daddy counting to 60 before you breathed, you would turn grayish purple and we called that your "purple breathing."
"Yellow breathing"
"Purple breathing"
Your daddy and I took turns holding you on our chests that first night, not knowing if, when we handed you off, we would wake up to you alive. It was the first of four restless nights. We had no windows in that dark room, but I imagine that the next morning, a little light broke through the clouds and the sun shone, if not just for a moment.
While we were witnessing your brain do some of the basic functions needed for life, we also recognized that you didn’t ever cry because you needed something – your brain wasn’t making the connection. We had to give you food on a schedule, because you didn’t cry when you were hungry. We had to check your diaper because you didn’t cry when you were poopy. And when your body needed more oxygen, your brain couldn’t tell your body to breathe regularly. When you were breathing relatively well, we called it "yellow breathing" because your coloring would match your favorite cream-colored blanket Marsha got for us that we always wrapped you in. When your breathing was intermittent, sometimes with daddy counting to 60 before you breathed, you would turn grayish purple and we called that your "purple breathing."
"Yellow breathing"
"Purple breathing"
Your daddy and I took turns holding you on our chests that first night, not knowing if, when we handed you off, we would wake up to you alive. It was the first of four restless nights. We had no windows in that dark room, but I imagine that the next morning, a little light broke through the clouds and the sun shone, if not just for a moment.
We woke to you still breathing.
And we waited.
It feels wrong to leave our house, even the room where you died, because this is not the way it was supposed to be. You were supposed to vacation with us. You were supposed to be keeping me up at night. You were supposed to be here.
I have to take a breath and realize that in many ways you are still here on vacation with us. Piper brought along your Hallelujah stuffy, which is splayed on their bed. When I fell asleep last night, you were still on my mind. You are here with us always, but boy I wish I could go back to a month ago and hold you again.
Being in the desert, I am reminded of the Israelites, who also had to learn how to wander through dry times. I'm living in Psalm 90 right now, remembering that I am not the first to encounter a struggle over the harsh reality of death.
Lord, You have been our [b]dwelling place in all generations.
2 Before the mountains were born
[c]Or You gave birth to the earth and the world,
Even from everlasting to everlasting, You are God.
3 You turn mortals back into dust
And say, “Return, you sons of mankind.”
4 For a thousand years in Your sight
Are like yesterday when it passes by,
[d]Or like a watch in the night.
5 You have [e]swept them away like a flood, they [f]fall asleep;
In the morning they are like grass that [g]sprouts anew.
6 In the morning it flourishes and [h]sprouts anew;
Toward evening it wilts and withers away.
7 For we have been consumed by Your anger,
And we have been terrified by Your wrath.
8 You have placed our guilty deeds before You,
Our hidden sins in the light of Your presence.
9 For all our days have dwindled away in Your fury;
We have finished our years like a [i]sigh.
10 As for the days of our [j]life, [k]they contain seventy years,
Or if due to strength, eighty years,
Yet their pride is only trouble and tragedy;
For it quickly passes, and we disappear.
11 Who [l]understands the power of Your anger
And Your fury, according to the fear [m]that is due You?
12 So teach us to number our days,
That we may [n]present to You a heart of wisdom.
13 Do return, Lord; how long will it be?
And [o]be sorry for Your servants.
14 Satisfy us in the morning with Your graciousness,
That we may sing for joy and rejoice all our days.
15 Make us glad [p]according to the days You have afflicted us,
And the years we have seen [q]evil.
16 Let Your work appear to Your servants
And Your majesty [r]to their children.
17 May the kindness of the Lord our God be upon us;
And [s]confirm for us the work of our hands;
Yes, [t]confirm the work of our hands.
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