*Each day this week - the week leading up to Brenna's first birthday next week - I'll be posting some excerpts from the first draft of my book that recall Brenna's birth day and first week of life. Read Part 1, Part 2 and Part 3. Thank you for sharing our story this past year.
From the time I was a young child, the children’s mass at our church Christ the King has been my favorite. There is nothing more joyful and fulfilling on Christmas Eve than seeing it through the eyes of excited children.
Five days after Brenna is born, I am determined that our family will still attend that same mass as usual, and although our pre-mass family preparation is filled with a bit more fighting and stress than usual, we slide into the pew alongside my parents a few minutes before the service begins at 4:00.
The children’s choir sings a beautiful pre-mass concert every year. The song that begins as we get situated in our pew is “Who Would Imagine a King?” and tears begin streaming down my face as the lyrics are sung…
Mommies and Daddies always believe
That their little angels are precious indeed…
It was so clear when the wise men arrived
And the angels were singing your name
That the world would be different ‘cause you were alive...
I immediately think of my own little angel and how she has already made a mark on the world in just five days, bringing people from across the world to God in prayer.
During the entire mass, my mind does not leave my baby girl, lying so helplessly in her little incubator, struggling to breathe and experiencing pain each time she moves. I watch the little girls (why does there have to be girls everywhere?) sitting around us with their families, twirling their pretty dresses around and faces full of excitement and anticipation. My favorite time of year is, for the first time, burdened with the worry and anguish surrounding our precious daughter’s birth. I break down into tears several times over the next hour.
One of my friends, attending with her husband and three children, catches me at the end of mass, and as she gives me a tight hug, she whispers, “she’ll be here next year.”
I really don’t even believe that myself, but it is the most perfect thing she could say and her words bring more tears.
As our Christmas Eve celebration wraps up – our family dinner is eaten, Connor is dressed in his snowman PJs and we are half-heartedly preparing for Santa’s delivery the next morning (Santa gets a break from milk and cookies at our house this year) – Evan tells me that he feels like he needs to go say good night to Brenna and read her a story.
As I later crawl into bed, I notice that it is getting late, and I haven’t heard from Evan. It is about 9:30 when I reach him, still at the hospital.
“They ran a test earlier, and I want to wait until the results come back,” he tells me. “I’m sure it’s fine; I’ll come home soon.”
Right before my call, Evan, sitting at Brenna’s bedside, had been reading to her from her new book “The Night You Were Born” by Nancy Tillman. He was reading the beautiful line “Because there had never been anyone like you…ever in the world” when the alarm monitoring Brenna’s lung saturation began to beep, and the numbers – which should be close to 100 – were dropping into the 80s.
A nurse, Kara, came in from next room over where she was charting on the computer and seemed concerned at the numbers, so she called the neonatologist in to assess the situation.
The medical staff decided to draw a “blood gas,” which is a test that monitors oxygen levels to see how well the baby is breathing. Their worry began to grow as Brenna shows no response to the increased level of oxygen that is being supplied to her.
Twenty minutes later, the blood gas results showed that her breathing was getting worse, and it is suspected that Brenna might have an infection.
Dr. Majjiga, the neonatalogist, and Kara are sharing these results with Evan when another test result comes in, blood work that was performed at 9 a.m. that day.
Typically, blood cultures take 24 hours to show results….but Brenna’s came back positive for infection in 13 hours. An infection is quickly taking over our sweet baby’s body, and the medical staff is extremely concerned at this latest development.
Evan’s chest tightens and he is frozen in place, his mind spinning about what this information means and what he needs to do. He is reeling with emotion when he asks Kara if he should call me to come to the hospital. We have known Kara prior to Brenna's admittance to the NICU, so Evan relies on her for guidance.
“Yes, you need to get Courtney here,” she tells him gently.
I am awakened by the ringing phone just an hour after I have fallen asleep, and it takes me a moment to clear my head and realize what night it is.
“Brenna has an infection, and it’s really serious,” Evan tells me, choking up. “You need to get here right now. It doesn’t look good at all.”
Upon receiving Evan’s call, my parents leave their home so that my mom can stay with sleeping Connor and my dad can drive me to the hospital.
I feel completely void of emotion as I pack a quick hospital bag, as I have spent the last five days crying and agonizing over when and if Brenna is going to die. I can’t even decide what to bring, and finally just throw my wallet and phone in a bag before changing into sweatpants and pulling my hair back into a pontytail.
I stand in the living room then, unsure of what my next move should be. The room is dim with only a side lamp offering light, and I unplug the Christmas tree lights. Christmas decorations typically jump out from every corner of our house, but this year, we decorated lightly, anticipating a baby’s arrival soon after Christmas and knowing that we wouldn’t want to be burdened with un-decorating at that time.
Santa Claus has already made his stop at our house, and a pile of gifts is stacked around the 6-foot tree. A bright red tricycle sits ready and waiting to be ridden by Connor, who has been excitedly pointing out bikes for the last two months.
My chest is so tight and I force myself to slow my breaths, inhaling deeply and forcing out any anger that is rising in me. This is not supposed to happen on Christmas.
I have no idea how long I’ve been sitting on the couch – minutes at the most - when I hear a knock. I stand up, grab my bag and open the door, falling into my mother’s arms, allowing the tears to come then.
“It’s too soon,” I whisper more than once, before pulling away and stepping into the harsh winter air to join my dad, waiting anxiously in his car.
My dad and I barely speak, save for me reprimanding him for running every single red light that we encounter. I’m afraid that we’ll get pulled over, only delaying our arrival to the hospital. But there are very little cars on the road at 11:00 p.m. on Christmas Eve, including police cars.
The rest of the ride I spend the entire car ride wiping tears slowly falling and pleading with God: “Please don’t take my baby girl on Christmas. Please.”
I understood that our time with Brenna might be short, but I had prayed that at least we would get through Christmas – a time of year that conjures up nothing but happiness, peace and love in my life, a time of year that I will with all my heart will not become synonymous with the death of my child.
The entrance of the hospital is virtually empty, except for a night guard who doesn’t even try to stop me. My footsteps echo through the lobby as I pass by brightly lit trees and a nativity scene that still doesn’t have a baby Jesus present in its manger yet, since it is still more than a half hour before Jesus’ birthday.
Each step feels so heavy and I finally step onto the elevator, quickly pressing the number 4. Waiting to rise just two floors, I feel so aware of being alone.
“Please God. Not on Christmas. Please don’t take my baby today.”
Evan and I immediately embrace when I enter Brenna’s small isolation room, and I feel a momentary relief at now being physically present with my daughter.
I can sense Evan’s relief at my arrival too, and he practically whispers, “It’s OK now; she’s as stable as she can be.”
At that moment, Kara enters the room, and I give her my immediate attention.
“So it’s pretty bad?” I blurt out, bluntly, just wanting someone to tell me what is going to happen, though I know that is impossible.
She nods slowly, her usually bright eyes replaced with sorrow and sympathy.
“It’s very aggressive.”
My dad joins us in Brenna’s NICU pod, and we crowd around her incubator, watching her little chest rise and fall in short, rapid breaths. Her face is hard to make out as it is covered by a large hood that is providing oxygen to her, aiding her as she fights to stay alive.
We learn that Brenna had some blood cultures taken from her body via her central line through her belly button earlier that day. Brenna’s heart rate and breathing rate were increased, and her temperature had been high, alerting hospital staff to the possibility of an infection. And just 13 hours later, the blood cultures came back as positive.
Kara and Dr. Majjiga ask Evan and I to join them in the family suite on the NICU floor to discuss Brenna’s deteriorating condition and any decisions that we should be prepared to make.
We are led down the long central hallway of the unit and through another pod where at least eight tiny babies are sleeping comfortably in open cribs. Little Santa hats sit on the ledges by some of the beds and candy canes and homemade ornaments hang off the ends of others.
A turn down another hallway, past the freezer that houses the small amounts of breastmilk that I have been pumping religiously for Brenna, and we enter the family suite, which contains a bathroom and three pieces of furniture that pull out into beds. Dr. Majjiga slides out chairs for our group of four from a small square table, on which sits only a box of tissues.
My eyes are wet, red and slightly swollen from crying for five straight days, and my shoulders slump with emotional drain as we sit across from each other.
Brenna’s breathing rate is the major concern, they tell us. If her breathing dips down even just a little more, we will be faced with the decision of whether to intubate her, which means inserting a breathing tube down the throat into the lungs.
“Small babies can be difficult to intubate,” Dr. Majjiga says, and the other, much bigger problem is her skin condition.
Attempting an intubation will likely cause Brenna pain, and in the small chance that it is successful, once intubated, they will have to figure out how to adhere the tube to her. Usually tape is used on the baby’s face to secure the tube, but this would be impossible with Brenna’s severe skin, so thick and tight on her face and covered with Aquaphor ointment at all times.
The impending hopelessness of the situation slowly sinks in.
And then we ask the question. The one that we already suspect the answer to. The one that brings about more heartache than I have ever experienced and that I pray other parents never have to experience.
We ask what will happen if we decide that we don’t want our sweet baby girl to have to endure the immense pain that attempting to intubate her will cause.
And the answer causes us to clutch each other’s arms, shaking with heartbroken sobs.
Kara’s eyes are sad for us, but she is unwavering in her professionalism as our nurse: “We will make her as comfortable as possible while she passes.”
To be continued…