Day 2
It’s been two months since your day 2.
Not much had changed, your breathing was still labored at times, and Daddy kept counting for so long between your breaths. The nurses gave you morphine through your tiny feeding tube when your breathing got rougher and the hospice nurse came to talk about taking you home. Using Dr. Julia’s orange baby stethoscope, we learned how to listen to your belly for a puff of air through the tube that told us it was reaching your small stomach. At home, WE would be feeding you my milk through your tube, three tiny milliliters at a time. Nurse Tracy from hospice had never had a baby on hospice go home, so this was new territory for her too, but she never wavered in her advice or reassurance that we could do this at home. She portioned out syringes of morphine to manage your pain and Atavan to combat the seizures we knew loomed large.
As I was writing this blog post, I received a call from Belcrest Cemetery.
“We placed Hallelujah’s headstone today.”
How fitting.
We are going to visit tomorrow, so I will write a separate blog about that at some point, but the call just reminded me that Hallelujah did not evaporate into nonexistence. She did not just disappear. We still get mail for her, a social security card, insurance cards, every one bearing her beautiful name. She lived only partially here on earth, but is now fully alive in Heaven. I’m so thankful that we have this hope, because my mama’s heart just wanted to save her, but Jesus had a different kind of saving in mind.
And it is so good.
God be praised.
That Sunday morning, I woke up to find you alive.
When we drew the lights down, your sweet little eyes peeked out at us. Blinking at this world so strange. We wondered at what you could hear, what you could see. As you laid on Daddy's chest, you would respond (at least) to the vibrations of his voice by opening up your eyes.
I hadn’t slept well since Thursday night –my water broke halfway through Friday night and I labored for the following 26 hours. I hadn’t slept well in a long time, and it was 9am Sunday morning and we were thinking of going home. As nurses were telling me how to administer feedings and what to watch for, my brain was gone. Both windowless hospital rooms we stayed in felt prisonlike as the sun never peeked through the blinds to remind us a new day was arriving. It was just darkness. This standstill we were in, coupled with sleep deprivation, left me in a fog. This made me infinitely thankful that we had been prepared for this, to some extent. For the past four months, we had driven up and down the Valley seeing you on ultrasounds and fetal MRIs and talking with maternal fetal medicine doctors, perinatology specialists, genetic counselors, pediatric palliative care experts and the OHSU NICU neonatology director. There were Zoom calls where our pediatric neurologist showed us slide after slide of what was going on in your brain, and what it most likely would mean for your life. They answered our questions and pressed us to finalize a plan.
Up at OHSU on February 10, I remember feeling bombarded with doctors looking at me, wanting to know exactly what measures we wanted to take and what measures we wished to withhold. I couldn’t. I couldn’t say the words out loud. I physically couldn’t utter the words “Just because you can keep her alive, doesn’t mean you should.”
Because those words are not a mother’s words. Those are a doctor’s words.
A mother’s words scream, “SAVE HER!!! SAVE HER AT ALL COSTS!”
So I sat there, unable to say what needed to be said.
I said I didn’t want to have regrets.
I said I didn’t want to give up on you.
But inside, I knew that these reasons were about me. And I knew that there was no right answer, but for us, there was a better answer.
In that moment, the palliative care doctor said, “It sounds like you want a monitored birth.”
And I knew that is what I wanted.
But this wasn’t about what was best for me.
Monitored birth meant you would probably not meet your siblings.
Monitored birth meant the possibility of a C-Section.
Monitored birth most likely meant I would not hold you for months, if ever.
Monitored birth was just the first layer of doctor involvement.
A friend who knows this situation told me, “When you see her, you are going to want to save her.”
I knew it could quickly snowball and we would very likely end up getting a bunch of information about ways to prolong your life. Ventilators, IVs, feeding tubes, bilirubin lights – we already knew that these things would be bandaids because brains don’t fix.
The doctors were right that we needed to formulate a plan, but I couldn’t say it.
Your daddy stepped in.
He said the words I couldn’t utter.
He said what needed to be said and turned to me and asked, “Is that ok?”
And I nodded yes.
It wasn’t ok, but it was the decision that needed to be made.
Ten days later, you came all on your own.
If we had decided in those meetings to save you at all costs, we would have had to agonize over whether it was safe to drive all the way to Portland when my water broke. We would have been stressing about your siblings, because we all knew they NEEDED to meet you, but would have to wait. God knew we needed to be together, in Corvallis.
So in the midst of my fog on day 2 of your life, I was thankful.
Thankful that we were close to our family, thankful that they had already spent two hours with you the day before, and thankful that your daddy was still able to focus on what the doctors were telling us about going home.
Around lunch time, we were almost packed up.
I thought I would put you in the “Little Sister” onesie that Piper wore in the hospital. Up until now, you hadn’t worn any clothes besides the wraparound preemie dress Piper had bought for you. Most of the time, we kept you simply wrapped in your yellow blanket with your tiny diapers so that we could easily see your chest rising and falling.
When I tried slipping the onesie over your head, it freaked you out a bit and your breathing became extremely erratic. I called to Daddy and told him we couldn’t go home. He sat next to me in the double bed and watched as you held your breath, arched your back, lifted your head and turned dark, dark purple. We thought this was it. It was violent and it was scary and it looked painful. We thought this was death.
We clung to you and each other and cried harder than we ever have.
And then you breathed.
It was unbelievable.
We marveled as you went back into yellow breathing again.
Then another small seizure, this time just eye rolling.
Purple, yellow, purple, yellow.
Seizure medication administered.
No more seizures, but the breathing…you kept scaring us.
By 4pm, your daddy turned on his Hallelujah playlist on Spotify and we just listened. I found a new song called “Hallelujah Even Here” that Amy had shared on Facebook and added it to the list.
When you struggled, we cried and I told you it was ok to go.
But again, you breathed.
We knew this rollercoaster would be so scary for your brother and sisters, and I felt like it was our job to protect them from it and let you finish your battle here at the hospital.
Your Aunt Carrie sent us a video of her and Cayden playing a Hallelujah duet (guitar/violin) for you.
And we waited there in the dark.
We thought you died so many times.
You would stop breathing, Daddy would count….60….61….62, and when we were sure you were gone, Daddy would stroke your hair and then your chest would spring to life and you would draw in a halting breath. It became absurd. Like you were playing a joke on us. Believe it or not, you made us laugh. In this, the darkest of moments, the holiest of spaces between life and death, your fighting spirit made us shake our heads and laugh.
Finally, you had rallied SO many times and I told your daddy that I thought we needed to share you, even if it meant your siblings jumping on this rollercoaster with us. We needed to go home.
It was 6:30pm when we called nurse Krystal in and told her we wanted to go home. Jumping into action, she said, “I will get a cart and someone to help!”
Krystal told me I would attract less attention if I just walked out of the hospital instead of being wheeled out, so we loaded up the cart, wrapped you in two blankets and headed to the elevator. We had already figured out our hospice arrangements, so we left with your needed medications, a package of micropreemie diapers, a couple extra feeding tubes and our baby girl. Walking out into the dark, rainy night, with two nurses pushing a clanging cart behind us, we speedwalked to the truck, and I clambered into the front seat with you in my arms. Earlier that morning, we had received instructions about how you couldn’t safely ride in the infant carseat we had borrowed but would need a car bed. In this rush to leave, we had no car bed, and no one cared. I locked eyes with the nurses and told them, “You didn’t see anything” and they nodded.
We didn’t know if we would make it home before you stopped breathing. I prayed hard as your daddy did his best to balance his speed with our safety. That was the longest 8-minute ride home ever.
Daddy had texted the family that we were coming home, but no one expected us so quickly. We opened the front door to a surprised group of people we love. Your four grandparents, three siblings and one auntie had all been camped out at our house for the past three days, trying to keep each other calm and distracted. We opened the door into our home and embarked on the next phase of your life…one of fragile joy and shared, tangible heartache.
Up at OHSU on February 10, I remember feeling bombarded with doctors looking at me, wanting to know exactly what measures we wanted to take and what measures we wished to withhold. I couldn’t. I couldn’t say the words out loud. I physically couldn’t utter the words “Just because you can keep her alive, doesn’t mean you should.”
Because those words are not a mother’s words. Those are a doctor’s words.
A mother’s words scream, “SAVE HER!!! SAVE HER AT ALL COSTS!”
So I sat there, unable to say what needed to be said.
I said I didn’t want to have regrets.
I said I didn’t want to give up on you.
But inside, I knew that these reasons were about me. And I knew that there was no right answer, but for us, there was a better answer.
In that moment, the palliative care doctor said, “It sounds like you want a monitored birth.”
And I knew that is what I wanted.
But this wasn’t about what was best for me.
Monitored birth meant you would probably not meet your siblings.
Monitored birth meant the possibility of a C-Section.
Monitored birth most likely meant I would not hold you for months, if ever.
Monitored birth was just the first layer of doctor involvement.
A friend who knows this situation told me, “When you see her, you are going to want to save her.”
I knew it could quickly snowball and we would very likely end up getting a bunch of information about ways to prolong your life. Ventilators, IVs, feeding tubes, bilirubin lights – we already knew that these things would be bandaids because brains don’t fix.
The doctors were right that we needed to formulate a plan, but I couldn’t say it.
Your daddy stepped in.
He said the words I couldn’t utter.
He said what needed to be said and turned to me and asked, “Is that ok?”
And I nodded yes.
It wasn’t ok, but it was the decision that needed to be made.
Ten days later, you came all on your own.
If we had decided in those meetings to save you at all costs, we would have had to agonize over whether it was safe to drive all the way to Portland when my water broke. We would have been stressing about your siblings, because we all knew they NEEDED to meet you, but would have to wait. God knew we needed to be together, in Corvallis.
So in the midst of my fog on day 2 of your life, I was thankful.
Thankful that we were close to our family, thankful that they had already spent two hours with you the day before, and thankful that your daddy was still able to focus on what the doctors were telling us about going home.
Around lunch time, we were almost packed up.
I thought I would put you in the “Little Sister” onesie that Piper wore in the hospital. Up until now, you hadn’t worn any clothes besides the wraparound preemie dress Piper had bought for you. Most of the time, we kept you simply wrapped in your yellow blanket with your tiny diapers so that we could easily see your chest rising and falling.
When I tried slipping the onesie over your head, it freaked you out a bit and your breathing became extremely erratic. I called to Daddy and told him we couldn’t go home. He sat next to me in the double bed and watched as you held your breath, arched your back, lifted your head and turned dark, dark purple. We thought this was it. It was violent and it was scary and it looked painful. We thought this was death.
We clung to you and each other and cried harder than we ever have.
And then you breathed.
It was unbelievable.
We marveled as you went back into yellow breathing again.
Then another small seizure, this time just eye rolling.
Purple, yellow, purple, yellow.
Seizure medication administered.
No more seizures, but the breathing…you kept scaring us.
By 4pm, your daddy turned on his Hallelujah playlist on Spotify and we just listened. I found a new song called “Hallelujah Even Here” that Amy had shared on Facebook and added it to the list.
When you struggled, we cried and I told you it was ok to go.
But again, you breathed.
We knew this rollercoaster would be so scary for your brother and sisters, and I felt like it was our job to protect them from it and let you finish your battle here at the hospital.
Your Aunt Carrie sent us a video of her and Cayden playing a Hallelujah duet (guitar/violin) for you.
And we waited there in the dark.
We thought you died so many times.
You would stop breathing, Daddy would count….60….61….62, and when we were sure you were gone, Daddy would stroke your hair and then your chest would spring to life and you would draw in a halting breath. It became absurd. Like you were playing a joke on us. Believe it or not, you made us laugh. In this, the darkest of moments, the holiest of spaces between life and death, your fighting spirit made us shake our heads and laugh.
Finally, you had rallied SO many times and I told your daddy that I thought we needed to share you, even if it meant your siblings jumping on this rollercoaster with us. We needed to go home.
It was 6:30pm when we called nurse Krystal in and told her we wanted to go home. Jumping into action, she said, “I will get a cart and someone to help!”
Krystal told me I would attract less attention if I just walked out of the hospital instead of being wheeled out, so we loaded up the cart, wrapped you in two blankets and headed to the elevator. We had already figured out our hospice arrangements, so we left with your needed medications, a package of micropreemie diapers, a couple extra feeding tubes and our baby girl. Walking out into the dark, rainy night, with two nurses pushing a clanging cart behind us, we speedwalked to the truck, and I clambered into the front seat with you in my arms. Earlier that morning, we had received instructions about how you couldn’t safely ride in the infant carseat we had borrowed but would need a car bed. In this rush to leave, we had no car bed, and no one cared. I locked eyes with the nurses and told them, “You didn’t see anything” and they nodded.
We didn’t know if we would make it home before you stopped breathing. I prayed hard as your daddy did his best to balance his speed with our safety. That was the longest 8-minute ride home ever.
Daddy had texted the family that we were coming home, but no one expected us so quickly. We opened the front door to a surprised group of people we love. Your four grandparents, three siblings and one auntie had all been camped out at our house for the past three days, trying to keep each other calm and distracted. We opened the door into our home and embarked on the next phase of your life…one of fragile joy and shared, tangible heartache.
Through it all, your little heart kept fighting. You fought to get home, you fought for this moment. Or, I suppose, God fought for you. It was a miracle that we made it home. But your story had only just begun.
“We placed Hallelujah’s headstone today.”
How fitting.
We are going to visit tomorrow, so I will write a separate blog about that at some point, but the call just reminded me that Hallelujah did not evaporate into nonexistence. She did not just disappear. We still get mail for her, a social security card, insurance cards, every one bearing her beautiful name. She lived only partially here on earth, but is now fully alive in Heaven. I’m so thankful that we have this hope, because my mama’s heart just wanted to save her, but Jesus had a different kind of saving in mind.
And it is so good.
God be praised.
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