Thank you for your investment in our little Honora's journey by reading this. You might have donated a gift card to our meal train or brought a meal in person to my parents' house where we're staying: Thank you. You might be praying for my family, and if you're the amazing woman who's waking up at 1:10am (Honora's birth time) every night to pray until she comes home from the NICU: WOW. Thank you.
Our sweet nugget is a woman of mystery, to be sure. While her future husband may love that, right now her daddy and I aren't. The awfulest phrases I've ever heard from doctors are, "We don't know why this is happening," and, "We've never seen this in a newborn before." 🤯 Hate. Hate. Hate those phrases, and we keep hearing them.
One non-mystery is why Honora's skin has a greenish tint. It's an expected symptom of high levels of conjugated bilirubin. (Impressed by my jargon? I'll be a certified NICU neonatologist soon. This is my free medical school!) Basically, she needs to start eating to get rid of the icky green color....which can't happen until her perforated bowel is healed. In the meantime, maybe she could land the role of Elphaba in Wicked on Broadway...fresh newborn take on a classic role?
Tuesday last week was a high point. Honora was off all respiratory support, her kidneys and liver were no longer a concern, the drain was out of her tummy and we THOUGHT the perforated bowel had healed after her first surgery, she'd made it back to her birth weight of 4 lbs. 7 oz, and she'd remained seizure-free. And she's so stinkin' cute.
Then Wednesday happened...
Mystery #1: an abdomen ultrasound revealed and abscess in BOTH kidneys. No doctor on the team has ever seen these in a newborn before. What are they doing there? How the heck did they get there? Are they really abscesses (infected pus,) or the symptom of a deeper problem? No one has answers.
Mystery #2: the free air in her bowel remained. If you recall from the 2nd blog post, she had a hole in her intestines. Hence she was transferred to Inova Fairfax in Northern Virginia where the doctor inserted a small drain to release the free air and infected fluids. However, Honora's daily x-ray revealed that she had persistent free air still sitting in her abdomen. Either any residual air should have been absorbed, OR the perforation was still there.
9 days after her first surgery the docs were scratching their heads. Honora wasn't presenting as a sick baby; she'd made a couple of poops (a good sign) and her bloodwork looked great. Thursday the docs finally ordered a barium contrast study (they put dye into her digestive system) to see if any leaked out as it passed through her intestines. It did.
John and I were so bummed. The perforation hadn't healed after 10 days. The surgeon ordered an immediate surgery, much more invasive than the last, to cut out the perforated section of bowel and bring her intestines it to the surface for an ileostomy. She'll have an ostomy bag (where the poop comes out of the hole in her stomach instead of the usual route,) and then she'll have surgery in 3 months or so to reverse it and put her lil abdomen all back together. Thursday was a crucifixion for me. I snuggled her as long as I could before they took her for surgery. She began really crying hard as they took her out of the room, and as I tried to soothe her the nurses waved me away saying we had no time. My heart broke in a million pieces that I couldn't comfort her. I cried all the way down to the OR, walking behind her transport incubator.
Thankfully she fell asleep during transport!
Fortunately the surgery was successful and it was absolutely the right call. The surgeon told us that when he went in there were still bowel contents that needed to be cleaned out in her abdomen, and that her perforation was just too large to heal on its own.
Flashback to a few months ago to a conversation with John discussing the most difficult things we could think of. I told him that watching my child suffer would be the hardest thing I can imagine. Fast forward: It is. I'd happily go through surgery in her place. Friday, the first day after her surgery, it was wretched to see her in such pain and unable to tell us about it. (Comic relief: When you're finished reading this, go watch one of my favorite comedy sketches by Tim Hawkins called "That's the Worst.")
We're back to "hand hugs," meaning no skin-to-skin, for a few days. She's all swollen from surgery here but was thankfully extubated and able to rest a little better on day 2 after surgery.
Mystery #3: Sunday I called to check in and learned one of Honora's lungs had partially collapsed in the middle of the night. Again, we don't know why. Her respiratory system was one of the few we hadn't had much trouble with! One doctor even joked she had "the best vitals in the NICU." And now, this. Doc suspects it was brought on by shallow breathing after the surgery. I sobbed to my mom on my way out the door to the hospital, "When are things going to get better?"
Clutching her suction tube for comfort as the little angel sleeps.
The stress of these mysteries is compounding. Plus, NICU life by necessity violates all newborn rules. "Don't wake your baby." Nora's awakened day and night by an endless stream of doctors and nurses. "Don't do things that make your baby gag or cry." She's poked with needles, touched by strangers all day, subjected to constant beeping machines, and made to undergo painful procedures. "Hold her and soothe her whenever she fusses." I've only been allowed to hold Honora 4 times in her life and I have to drive an hour each way to see her. "Breastmilk is the best thing for your baby; feed her whenever she's hungry." I've never yet been able to nurse her and currently she only gets nutrition through the PICC line inserted in her left leg. I know we're fortunate to have so many specialists caring for her; she wouldn't be here without their expertise. Still, my momma bear desires and instincts are so frustrated that most days I feel like I'm losing my mind. I have so little control over what happens to my baby.
I have so much support. And I'm so grateful for it. But still I feel like my life is a rollercoaster that keeps crashing. Last Sunday I sobbed through mass seeing a happy chubby little baby get cuddled by her parents 2 rows in front of us. I feel lost and numb and exhausted. I haven't been home in over two weeks. I haven't even begun to process Nora's traumatic delivery or prepare for a life caring for a child with cerebral palsy. I feel angry at the whole stupid crapburger of relocation and separation and pain my family has had to swallow starting with my placental abruption three weeks ago. Last night I researched symptoms of PTSD and I was like, "yup." So I'm definitely gonna be talking to my doctor about that this week.
We hope and wait that the mysteries resolve, but it's so hard. Accurate picture of my prayer life:
Here's a grain of insight that's kept me going. I prayed my rosary today while driving through a snowstorm to the hospital. As it concluded, God dropped a reminder into my mind. It was advice from my True North Discernment Course, and I smiled wryly thinking how it's sometimes hardest to swallow our own counsel.
In the True North Course, one of the worksheets consisted of making two lists: one was what I am responsible for, and the second was what God was responsible for. After making the lists, you look at them and write: "I am only responsible for what I can control. Everything, everything else is in God's department." Having faith means we can leave God's things up to God with great freedom and assurance. In my current situation, I remembered I'm called to a few things:
I'm called to be faithful.
I'm called to love.
I'm called to be present.
I'm called to respond to each situation in the best way I know how.
God is responsible for everything else, so I should stop expecting too much of myself.
Remembering that helped me restore my trust in God. I've been struggling with the nagging thought that he's setting me up for failure. Although I long to do more for Honora, Raffy, and Zelie, as any mother would, I'm not called to do more because I can't. Nothing would lessen the grief of losing my baby if God called her to Heaven. But even then, that situation would be in his department, not mine.
That little dose of reality helped me calm my tears, square my shoulders, and walk into the NICU with composure today. I don't know how her surgery healing, collapsed lung, or mystery abscesses will progress. But I know what I'm called to, and what I'm not. And whatever you're dealing with today, I hope that little insight gives you bravery too.
P.S. In the day since this post was written, Honora's lung appears to be re-inflating slowly. They started her on a C-pap machine that not only ensures she doesn't fall behind in fashion, but also has the side benefit of helping her lungs. She's breathing easier in general. Deo gratias!
Blessed Carlo Acutis, St. Gianna Molla, and Holy Family, pray for us!