I can't believe this week marks over a month of life as a NICU mom. First, I have an AMAZING story for you about Honora's name!
My mom got an email last week from a friend named Nora. It turns out, mom never knew before, but her friend revealed that full name is also Honora. She wrote, “You may already know this but there is a St. Honorata. Her feast day is January 11. She was a nun at Pavia, Italy, kidnapped by the Germanic chieftain Odoacer of Italy. Her brother, St. Epiphanus, the bishop of Pavia, ransomed honorated and returned her to her convent.”
Did you catch that her feast day is January 11? JANUARY 11TH IS OUR HONORA’S BIRTHDAY. We’d never heard of St. Honorata before!
John and I named our daughter after my great-grandma. I’d never heard of St. Honorata before; our Google search for saint names only yielded St. Honore, the patron Saint of pastry chefs. There’s an amazing St. Honore cake you can see and make here, and you betta believe we’ll be making it probably way too many times to celebrate in the future . I just think it’s mind-blowing that Saint Honorata, who doesn’t even turn up on a Google search, found her way to us through another Honora. How neat is that?
In other Saint-stalking news, I acquired relics from 2 of Honora’s other patrons. No one’s ever given me a relic before, but 2 friends happened to have and lend me a St. Gianna and a relic touched to Blessed Carlo Acutis’s body. I prayed to both of them on our way to the hospital just before Nora’s dramatic entrance. Both relics are now in her incubator and it helps my heart when I'm away from her knowing they’re there.
Now for an update on our little NICU warrior: We celebrated one month of our amazing tiny woman’s life on Jan 11. She’s already moved mountains! Good news first: The first week of Feb was beautifully uneventful. Nora moved from an isolette (incubator) to an open crib. She was off respiratory support, which meant juggling fewer wires, cords and toggles when I picked her up. Her ileostomy is healing well after surgery and breastmilk feeds through her nasogastric tube increased to nearly an ounce at every feeding. I know that sounds like almost nothing, but that’s a huge accomplishment for a preemie who recently underwent 2 bowel perforation surgeries! Here's a picture of the open crib, featuring an adorable banner my mom made in her Craft Room of Wonders:
Before I became a mom I didn't understand how I could love each one of my children wholly and completely. But somehow, you do. Raphael, Azelie and Honora each have my whole heart. Here's a snap a sly smile (assurance that she's going to fit right in, conspiring with her siblings!)
Now the not so great news: It seems difficult medical events are our new normal. I’m trying to reset my expectations so that when they happen I don’t have a near-mental breakdown every time… More on that journey in a minute. On Sat Feb 13, Nora’s heart rate kept dropping. Her body temperature fell and she threw up several times. The doctors suspected an infection. John and I cancelled our Valentine’s date and rushed to the hospital in a snowstorm, yet again, in tears of worry. Why does a snowstorm always coincide with Nora's medical events??? We found her in an unnaturally heavy stupor, receiving another blood transfusion, back on respiratory support, completely off breastmilk feeds, and back in an isolette. It was terrifying to hear the monitor blaring and nurses rushing in from all parts of the unit to bring her back each time her heart rate dropped. Saturday night I was plum worn out. I felt all used up.
Within a day Nora's heart rate stopped dropping, her oxygen saturation looked good again, and she regained alertness. The doctors investigated whether she had an infection but the bloodwork and cultures all came back negative. I felt frustrated by yet another unsolved mystery and fearful that it was symptomatic of a deeper issue. What can I say? After five weeks of medical disasters and mysteries, I’m gun shy.
However, I actually figured this mystery out myself today with the help of a thoughtful nurse! Nora's nurse, Raquel, listened to my description of her symptoms leading up to this latest event. I’ve sat holding my kid for many hours, and I’m proud I know her well by now. I observed symptoms days before the event that the doctors didn't. Raquel pointed out everything I described sounded like anemia. In my experience, anemia in adults causes nothing more than tiredness. However, my quick google search after our conversation revealed Nora’s symptoms were textbook reactions to anemia for a newborn. Thank God; I alerted the doctor and he agreed it clearly was anemia. He was impressed Raquel and I figured it out. Now we can put it in her care plan and watch her more closely to avoid episodes like this in future. See, didn’t I tell you this is my free medical and nursing school?
On to my mental battle with this whole NICU situation… oy vey. What a mess up there.
One of the hardest parts of being a mom is that you don't get to pretend for a second like you don't care. You don't leave your work at work like a normal job, because your work is your heart. Never have I ever felt more sympathy for the Blessed Mother watching her son be crucified. Handing your child over to someone else to be poked with needles and throat suctioned is... awful. Yet I also know I have to find some way to continue to be steady in my own right. My mood, demeanor, and thoughts have to be ruled by the bigger picture, not Honora's daily ups and downs...it's not fair to Raffy, Zelie and John, and the stress is going to kill me eventually.
I finally got space to reflect and gather myself a little as my in-laws happily “kidnapped” the toddlers yesterday and today. I can’t get off this rollercoaster, so I’ve been grappling with how to keep my head above water. I’ve never dealt with an extended health crisis myself, and now I’m trying to guess what’s going on with a preemie who can’t talk and has multiple areas of concern and trauma. One of the family support staff members pointed out it’s very normal to feel opposite co-existing emotions. I’m glad she said that, because I can hardly believe I feel simultaneously grateful, sad, outraged, celebratory, and frustrated I feel. And often I feel nothing at all and want to do nothing except watch Netflix and sleep.
Living in fear isn’t my usual, and I despise it. Today I made a few changes I think will really help. First, I recognized that I have to hope like it’s my job. Raffy, Zelie, Honora and John need me to hope. While it’s true that Honora’s short life has been riddled with complications and trauma, it’s also true that her survival and progress are miraculous. I’m so emotionally involved that I feel her pain as if it were my own, but sometimes that constricts my view and blocks out all else. While the pain is true, so is the hope. I need to choose the hope more.
For me, that starts with mentally cataloguing the victories of each day, not just her setbacks and my insufficiencies and worries. I also need to intentionally celebrate each new victory, no matter how small. While it’s not helpful to ignore the hardships (of which there are many,) I also need to keep a mental picture at the forefront of my mind: the picture of walking into our house with Nora and finally, finally introducing her to her siblings. The other day I happened to leave the NICU just behind a family who’d just been discharged. I walked behind them all the way to the parking garage, tears spilling out of my eyes as I watched those parents getting to live my dream. I can think of little else I want more than to bring my baby home. I have to remind myself it’s GOING to happen, and perhaps sooner than I think.
Second, I worked out today for the first time since my c-section. I took it slow, but I pushed myself in the capacity that’s safe right now. I didn’t realize the repercussions of my traumatic emergency c-section until today. While I’ve been recovering well physically, I’ve been extremely wary of any activity that would cause further pain to the incision site. I’ve been trying to protect myself rather than being proactive, both physically and mentally. Working out began a deeper healing of feeling at home in my own body. As I felt the nice endorphin boost and warm, shaky muscles, I was reminded that I am an agent in my own life. Even though an awful thing happened to me, I get to choose whether I live under its shadow or not. That's super empowering.
Third, I’ve begun seeking out resources to help me prepare for Honora’s diagnosis of cerebral palsy. I didn’t have any family members with disabilities previously, so this is a completely new frontier. A fellow Catholic podcaster friend Travis Davis hosts a show called “Off the Crutch” about disability issues. I’ve begun bingeing, and it’s great. One thing I appreciate about Travis and his guests is that they don’t see themselves as victims. As I listened, I identified that one of my fears for Honora’s future is that she'll feel limited by her diagnosis and struggle with self-worth. Through hearing perspectives of Travis and his guests, I’ve been able to both identify my fear and empowered to trust that Honora will love her life. Throughout the Bible, God delights in using the ill, the infirm, the disabled, the sick, and the disadvantaged to manifest his glory. When I remember that, I feel happiness that my Honora has special purpose, and that no diagnosis can limit God. I know this'll be an ongoing struggle, but sweet hope makes alllllll the difference.
In closing, I’ve been thinking a lot about Psalm 13. I love the psalms. They’re evocative, emotional, and they don’t shy away from the dark places in the human heart. This one gets me:
“How long, O Lord? Will you forget me forever? How long will you hide your face from me? How long must I take counsel in my soul and have sorrow in my heart all the day? How long shall my enemy be exalted over me?”
Consider and answer me, O Lord my God; light up my eyes, lest I sleep the sleep of death, lest my enemy say, “I have prevailed over him,” lest my foes rejoice because I am shaken.
But I have trusted in your steadfast love; my heart shall rejoice in your salvation. I will sing to the Lord, because he has dealt bountifully with me.”
From our little corner of the NICU, this mama’s singing to her baby with a heart full of hope.
Blessed Carlo Acutis, St. Gianna Molla, and Holy Family, pray for us!