Wednesday, September 23, 2015

An angel in comfortable shoes

Karen on the far left, with 2 other favorite nurses
The cooler weather, falling leaves, and sweaters of autumn always take me back to the NICU. On this day 19 years ago, Chris was one month old, still on the ventilator and battling for his life...still weighing less than 2 pounds.

In the midst of our family's crisis, we had many angels. An incredibly calm and competent nurse named Karen kept us grounded. She somehow found a way to get assigned to Chris whenever she was working, a true godsend for these worried parents.

In the beginning of Chris' NICU stay, he was in Level 3...initially with one nurse assigned to him, 1:1, around the clock. As he got a little older and more stable, his nurses took care of two babies instead of one. When your son is fighting for his life, knowing that he's in the hands of a highly skilled nurse can make an enormous difference in your sanity! Each time we would check in at the door of the NICU and hear that Karen or one of our other favorites had Chris, we would breathe huge sighs of relief.

Karen did so many special things for us, beyond just being a reassuring presence and taking extraordinarily good care of Chris. She gave him a heart-shaped rock to start his rock collection (any gifts to him in those early days gave us such hope). On my birthday in early October she made a card with Chris' footprints and signed it from him. She lent us a book written by a grandfather of a 24-weeker, Dear Zoe, when Chris was the only 24-weeker...and the sickest, smallest baby...on the unit. In 1996, it was the only book in publication that mentioned 24-weekers and gave us any hope for his survival. Exactly what we needed.

And most memorable was the horrific few days when Chris nearly died, after he had lived for a month and we thought we had already faced the worst. After a surgery to insert a catheter, a perfect storm series of things went wrong. When the neonatologist called us, concerned, one morning, we rushed to the hospital. Mike wrote this in our journal:
"We hurried to the unit where, to our surprise, we found Christopher to be stable. Karen—kind, calm Karen—was the nurse. Her calmness entered into us and made us believe that everything would be okay. We even inked the soles of Christopher’s feet and pressed them onto the pages of the journal we were writing. We’d seen other babies having their handprints done but, what with all the surgeries, hadn’t gotten around to doing Christopher’s. At the time, I didn’t worry about it being a bad omen, and insurance along the lines of  'if something goes badly wrong…if we lose him…at least we’ll have something to remember him by.' I didn’t suspect a crisis until the crisis was upon us."
That evening when we returned to the NICU, we knew something was wrong. All of the medical staff swirling around Chris' bedside could not stabilize his blood pressure. They tried a drug called Captopril, but he had a bad reaction to it, which sent a blood clot to his kidney. The doctor ordered a paralyzing drug to keep him still overnight.

The next morning when we called early to check in, the nurse practitioner told us we should come in right away. “Christopher’s had a rough night,” she said. “I think you should come in. Things aren’t good.” It seemed clear: he was going to die. When we walked into the unit, nurses seemed to be avoiding eye contact or scurrying away at our approach.
"The small group around Christopher’s bed greeted us tensely. The nurse practitioner, her face strained, explained that Christopher’s blood gases had been horrible. He was on the highest ventilator settings and still highly acidotic. They were doing all they could, but Christopher wasn’t responding.
What were we going to do? What was the outlook? No one could guide us. I called Father Matt and told him. Today the church was installing our new Lutheran pastor. Obviously we couldn’t attend the ceremony. I asked him to let people know and to ask them to pray. I wondered if I should also ask him to come and baptize Christopher. I mentioned it to Marie but her response was an unequivocal no. 'That would be giving up hope,' she said."

When the night shift ended, the unit closed for report and we sat in the viewing room while the day shift was briefed.
"To our great relief, Christopher’s nurse was Karen. Her calming presence was exactly what we needed. She dealt efficiently with the vent, the ever-beeping monitor, the continued horrible blood gases—and the only sign of crisis was that she was even more focused than usual."
Under Karen's practiced care, Chris seemed to stabilize that day, but in the evening, his oxygen levels were still low. But by Monday, once more grave faces greeted us in the unit. He was too quiet, not responding to lights in his eyes...neurological concerns. Karen told us that a head ultrasound had been ordered.

In the late afternoon, the results of the ultrasound were in. The head neonatologist, Dr. Lewallen, called us into a conference room with my parents and physician sister. Karen found another nurse to cover for her so she could join us. Dr. Lewallen told us that Chris had experienced something catastrophic...cerebral edema (brain swelling) and low flow to the brain...and that we should discuss how we felt about sustaining life artificially. "At this point, it appears that he has suffered massive brain damage and will not recover neurological capabilities.” He had ordered a neurological consult to confirm his diagnosis.

We were all stunned, and Karen looked like she was holding back tears. Mike held onto hope, but this was my greatest fear, and I lost it.

But when the neurologist stopped by later, he clearly saw the spark in Chris. His examination showed doll's head reflexes, a good sign, and he thought he was having a pharmacological reaction. “Call me a crusty old neurologist, but I don’t put too much faith in ultrasounds. I’d say wait a few hours and see how he reacts. He’s a tough little kid. A fighter.”

Over the next few days, as Chris eventually stabilized and rose back to his fighting self, we had a few nurses that really challenged my patience. One of them, clearly a heavy smoker who had a rough touch, even told me she was concerned he was going to become addicted to morphine! Another seemed barely out of nursing school and very nervous. I was not fond of every nurse!

I still remember my great relief when we returned to the hospital a few days later, relieved to find that Karen was back again. We knew she had been requesting to have Chris, because she was his nurse every single day that she was working. "As we would soon find out, Christopher responded in what would be his typical way: to surprise us out of our gloom."
"Karen appeared by the bedside later in the morning clutching a little white sheet of paper. She turned it around so we could both read it together. It said 'NORMAL HEAD GETTEL.' It was the ultrasound report, and it showed that Christopher’s brain was completely normal. We could not believe it, and had to restrain ourselves from whooping in the unit." 
Those few up-and-down days were not the last crisis Chris would face...but reading back over our journal entries, I'm reminded by the fact that Karen was with us during our most somber moments as well as our most happy ones.

We haven't seen Karen for years, and sadly she had to step down from NICU nursing after a head injury. Such a loss to parents and babies everywhere! The photo above is from Chris' baptism, which several of his nurses attended, and we had Karen do a reading at the baptism.

We will always be grateful for how tremendously well she took care of our very, very sick baby...and his very, very worried and highly engaged parents. Happy birthday, Karen! Thank you!

7 comments:

  1. Marie,

    Your writing is so beautiful, your story so moving. Thank you for sharing so openly with us all.

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  2. Hard to read without tears. And now, Normal Head Gettel is a freshman in college.

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    1. Normal Head Gettel is a Normal College Student! :)

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  3. Dear Marie & Michael,
    I never knew the details of Chris's early days, but I knew that my Mom was praying intensely for him and your family. Thanks for sharing. Annette

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    1. Thanks Annette! Yes, we were so grateful for Mary's prayers!!

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  4. Marie - I'm not quite sure how to respond to this but I know that I need to tell you that I have reread it and each time it brings me to tears. I am so thankful for the opportunity to have cared for all of you and that Chris is thriving. I know that a lot of that has to do with the incredible family that he was born into. Thank you for continuing to share your journey. I look forward to news about you and your family. And thank you for Precious Beginnings and the blessing you have been to so many other families. One of the most difficult things about the head injury has been not returning to work that I loved so much. with love and appreciation, Karen

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