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Friday, January 25, 2013

The NICU: one year ago

Brenna spent 37 days in the neonatal intensive care unit at St. John's Children's Hospital. But it could have been 10 days or 200 days for all we knew.

As a parent, the NICU is like nothing you will ever experience. Every moment is spent in the present; time seems to stand still for the duration of your stay. When you look around you after your baby is discharged (for those who are lucky enough to bring their children home), you wonder how, suddenly, things have changed - other children are older, people have moved and changed jobs and gotten pregnant - and it seems like this all happened in a day. It's like when you're young and in elementary school and life seems to stand still during school hours...and one day you leave school for a doctor's appointment and you are amazed that there are cars out driving and people out in public.

When your baby is transferred from your belly to an isolated incubator instead of into your arms, time stops. Your world stops. You live in every day, every hour, and there is very little talk about the future because it is so uncertain and the second that you start talking about the future, your baby's monitors loudly beep with alarm, throwing the reality in your face that anything can happen at any second, to these fragile babies whose tiny bodies are fighting to live and to function.

When Brenna was a few days old, I asked Evan if I should even write in her baby book. He was upset with me for even suggesting that we would have any reason not to, and so I filled in her eye color and birth details. When I came to the line for "complexion," I cried.

Every day, we awoke with worry - worry that Brenna was getting sick, worry that she was in pain, worry even that she knew we weren't there. Worry that she was going to die. We would call her NICU pod as soon as our eyes opened, asking the night nurse if everything was OK: what was her temperature? how did she eat through the night? did she cry much?

I talked to her every day, every time I visited. And I cried every time I tried to talk, and then I would get mad at myself, thinking that I didn't want her to only be hearing choked sobs from her mommy. I sang to her, softly, so that the other nurses and visiting parents wouldn't hear, but hoping that Brenna still heard, even through her thick incubator and skin-filled ears. And I read to her, again crying along with many of the words in books like On the Night You Were Born and I Love You Through and Through.

Whenever I wasn't there, I wanted to be. And whenever I was there, I wanted to be with Connor. I was torn between two worlds - my world of former normalcy, at home with Connor, and the world of the NICU.

In the world of the NICU, you can do nothing but wait. You wait for your baby to die or to live...to live and get better and go home. But when your baby is very early or very sick, home seems like a foreign concept. And so you live in the present, tensing with each monitor alarm and each incoming test result.

A friend sent me a fascinating, heart-wrenching series written by a journalist with the Tampa Bay Times after she experienced giving birth to a micro-preemie - a 23-week-old miracle who defied so many odds to survive.

Her words about the NICU experience really resonated with me:
"Another parent once called it the Zero Zone, and when I heard that, my mind flooded with context and understanding. It was a place that existed outside of time, apart from everything I used to know and from the person I used to be. It was as if I'd been jerked out of my own shoes, out of the life I recognized. Every second was an improbable gift and an agonizing eternity. Would my baby die today? Would she die before lunch? If I left for an hour, would she die while I was gone? There was no future, no past. There was only a desperate struggle to maintain."
A year ago today, we brought Brenna home from the NICU. She was five-and-a-half weeks old. When Brenna was just two days old, the neonatologists told us they estimated that, if she overcame all of the initial health challenges, it would likely be "months at minimum" until she could go home.

At four weeks old, Brenna had displayed a fighting spirit, a resilience and tenacity beyond our biggest hopes...and at four weeks, her doctor first dared to utter the words "I think we can move toward you taking her home...as early as next week."

I felt so ready and so not ready. I wanted to be home, a family of four, with no more daily hospital visits to coordinate, no more incubator standing between me and my daughter. But I felt so unprepared for the daily, hourly, care of a newborn with so many needs, so much risk for infection. I was so nervous about not having a one-on-one nurse at all hours of the day and a neonatologist to consult about every question and concern.

When they disconnected Brenna from the few machines that had been monitoring her since birth, I felt like she was going to die right then, now that we didn't know her temperature and heart rate and lung saturation at every single second. I felt almost panicked walking out into the fresh air with her - outside, something she had never experienced before. She fell asleep in the car ride home, and I sat in back with her and leaned close to make sure her chest was still moving slightly up and down.
Though it's been a whole year now since our 5.5 weeks in the NICU, I can still recall so vividly the smells, the sounds and mostly the emotions - the fear and the despair and the heartbreak and the hope. The pleas with God every day and the peace that comes with fully surrendering everything to him. The elation accompanying every new step toward living, toward going home. That's my daughter; she's a fighter.

The NICU is a world I wish parents never had to experience...but miracles happen every day there. And I thank God for those miracle workers, the doctors and nurses who dedicate their lives to doing everything possible to help those babies live and go home. Because of them, our precious daughter has now been home with us, sleeping in her own bed and giving me a lot to add to her baby book, for one whole year.

9 comments:

  1. You have captured exactly what it is like to be in the NICU zone. We were there 72 days with my now 14 yr old and your words brought me right back sitting by the incubator singing and reading to Hannah. It has been so wonderful watching Brenna grow and continue to do so well. Congrats on another 1 year Anniversary.

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  2. Tears! Thanks again for sharing! With two kids of my own it's truly an unexplainable and unrightable thing... the way we love our children! I cannot imagine the anxiety worry and HURT you felt for your daughter while she was in the NICU because of your love for her :) Look at how the Lord worked in the past year and how far your little sweet miracle girl has come!! That is a testimony!!

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  3. Congrats on your 1 year, as a NICU mom I can't wait for our 1 year. My daughter Payton was in the NICU for 256 days and those nurses and Dr's are amazing. Your daughter is beautiful.

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  4. As a former nurse who worked in a nicu your blog melts my heart.. We nurses go through all those emotions too. We love your babies like they are our own even for a moment It's not just a job it's a calling.Thanks for the kind words about your nurses.

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  5. Praise the Lord for Brenna beating all odds and coming home after just 5.5 weeks. I'm sure that seemed like enough of an eternity to you all! I imagine it is ESPECIALLY hard when you are torn between multiple children that need you. So difficult.

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  6. Look how far you've come! You're all such fighters - and you're right, miracles do happen.
    My parents were told I wasn't going to live past a few months old. I was in the Neonatal Unit at the Royal Children's Hospital - 4 hours drive from my parents' home - for the first 3 months of my life. They told me that one day, they got a call from the doctors, asking them to collect me from the hospital, because there was nothing more they could do for me there. They suggested I might be more comfortable dying at home. I can't imagine how that must be for a parent, for every minute, temperature change, breath, heartbeat counting for a chance at life.
    You're amazing Courtney. Thank you for writing - it's allowed me to 'meet' you and your family, and also get some perspective about what my parents went through when my Ichthyosis was so uncertain.

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  7. Congratulations on your first year home as a family of four Court!

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  8. Wow! What an amazing story. Our grandson spent two months and 18 days in the hospital after being born 13 week's premature. Were so very lucky that, so far he's healthy and normal. It could have been much worse and for that were thankful. Congrats to you and your family for one year and hope for many, many more. God bless you all!

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  9. I remember Brenna and your family daily in my prayers, especially for the blessing of her continued good health and amazing transition over the past year. It is a true testament to the awesome power of God's love and your family's faith. I love to follow Brenna and Connor's lives - so very happy you share their childhood with us. I am sure you have provided strength to many others.

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