Gratitude for Life, Many Little Deaths: Honora's Journey Part 6
It’s day 67 in the NICU. Only about 10 have been uneventful. Gift bags reserved for ‘medically complex’ babies showed up in our room. I guess it's the NICU's way of saying “We don’t know if we can fix your kid.” I’d rather have a healthy baby, but bougie Beauty Counter baby products are a small consolation.
Honora was full term on March 4th. Happy belated due date to our sweetheart! She’s a whopping 8 lbs and looking for all the world like a healthy little lass with those incredible cheeks! One of the local angels (aka so-called “NICU nurses”) aided me in a fun little photo shoot. Despite our poor gal mysteriously throwing up loads of green bile for two weeks, I managed to have a little fun…
Many of you have asked when Honora will come home.
Short answer: If I knew, I’d be shouting it from the rooftops.
Real answer: Honora’s poor little GI tract, which has been through so much, needs to be able to tolerate enough nutrition to sustain and grow her. Most of her life she's been fed artificial nutrition through the PICC line inserted in her ankle. My sister calls it "foot feeding!"
Our bodies are incredibly smart, and when there’s oxygen deprivation, some organs will be ‘sacrificed’ to save the brain and heart. The intestines were ‘sacrificed’ when she was deprived of oxygen, which is why they had perforations necessitating three surgeries. This week she went through her 3rd and biggest surgery yet. If you want to skip the technical details of that, scroll down until you see a picture of a leprechaun. For anyone interested in the details, I’ll explain what happened in surgery…
Right now, Nora has a problem with both the upper part (mouth) and lower parts (intestines) of her digestive system. Remember that surgery six weeks ago where she her intestines were cut in half and she was was pooping into an ostomy bag? Yup, fun times. That was reversed this week, so now her intestines are put back together. (Side note: it was kinda hilarious to hear her toot into bag and see it puff up like a balloon…we’ll take any humor we can get these days!) Hopefully now we can get her up to full feeds with her whole digestive system back in play.
Nora was an absolute champ through her biggest surgery yet on 3/16/21. And I'm proud of how much I've learned; I can tell you what each of those wires and toggles is for, how long it'll be on, and why it's important. I accidentally fooled our insurance rep into thinking I'm a medical professional on the phone because I speak NICU fluently now!
This same surgery inserted a Gastrostomy tube, otherwise known as a G tube or feeding tube. In the picture you can see it on the left side of her tummy. Nora needs it because she hasn’t made good progress breastfeeding. She has the right instincts, but she doesn’t usually know what to do with them. We practiced for three weeks without much progress. It was a little death for me to accept that she can’t eat yet on her own and the G tube is necessary. It’s a button with an open/close component that hooks up to a pump to insert food directly into the stomach. Babies with brain damage like Honora’s sometimes have delays or deficits in being able to feed themselves. In Honora’s case, hers is further complicated by prolonged anemia and a bowel obstruction that makes her exhausted and irritable. She’s dealt with crisis after crisis in her short life, so no wonder she hasn’t been hungry, poor baby. We hope she can learn to eat once she goes home.
I’ve stopped pumping milk, and that’s another little death. Producing milk was the one non-medical thing I could do for her (besides holding and loving her,) and with the stress of the latest crisis where she was throwing up bile for 2 weeks, I just couldn't do it any more. My supply was tanking from the continued stress and I was totally exhausted from pumping round the clock. In motherhood my natural tendency is to guilt myself, so I have to fight it. I’ve been mourning the loss of the breastfeeding relationship I’d hoped for and reminding myself over and over to let go of the guilt.
My dream was to introduce Nora to her siblings on their birthdays, March 12 and 13. But best case scenarios haven’t been our story lately. Mid-March has come and gone, and it was hard to accept that we’ll be in the NICU until Easter at the earliest. But I did snap a picture of this cute leprechaun the day before her surgery!
This onesie says "kiss me." Um, yes please!!!
The surgery went well, thank God!!!
Now a whole new series of questions about Nora’s future crowd in. She received a preliminary diagnosis of cerebral palsy, a muscular disorder that affects movement and can render some or all limbs unusable. We also don't know at this point whether she'll also have an intellectual disability. At the beginning, the doctors would only tell us there was reason to believe her brain would heal completely. Cerebral palsy is completely unique to each individual, and delays or deficits declare themselves over the course of years. Right now, there’s no way to predict how she’ll turn out. The care team told us over and over how they’ve seen babies’ brains rewire themselves miraculously. I’m so grateful for their positive outlook, BUT as delays in reflexes and eating emerge….
I have to go through a new journey of accepting HER timelines, not ours.
It’s hitting me now that I’ll have to grieve each milestone she won’t hit, for YEARS.
I have to grieve each thing as it happens, not all at once.
I have no idea how I’m going to do that.
And it scares the living daylights out of me.
You’re supposed to celebrate a child’s life, not grieve the life she should have had. And grieving that life while she’s alive just feels cruel. I'm afraid because I’ll have no control over when grief creeps in. It’ll hit me when I least expect it. There will be days where I’ll shut myself in the bathroom to have a breakdown, and nights when I should be having a fun date night with John and instead just want to crawl into bed to cry again. I’ll grieve if she gets teased or bullied, and grieve if she doesn’t get asked to prom. I’ll grieve if people stare at her. Most of all, I’ll grieve if her disability holds her back from doing the things she wants to do.
To me, Honora is perfect. But I know kids stare. I know the world won’t love her as I do. I want to shield her from pain and I just can’t. I couldn’t even shield her from brain damage before she was born. TBH I’m having a breakdown right now just thinking of it.
Until 32 weeks, 3 days and 22 hours, Nora had no injury. Then at 32 weeks, 3 days and 23 hours she was irreparably injured. Why did that hour happen? Why would God allow it?
And even more pressing and necessary, how can I hope for the future?
Besides fearing for how I'll handle the grief, my greatest fear is that Honora won’t love her life. My fear is that she’ll always see herself as ‘apart.’ That she’ll wish she were living someone else’s life.
And I don’t know if my love will be enough to give her security. God has allowed both of us to be hurt so badly that I’m struggling to know how to trust him with our future. I'm super vulnerable with that question on my next episode of the Called and Caffeinated Podcast with Fr. Mark Goring (releasing 3/30/21). I’ve seen Jesus; he’s spoken to me and I can’t deny that he exists. It’s more that I’m having a crisis of trust in his divine plan.
I can't wait to introduce Nora to fresh air, her siblings, flowers, birds, sunlight, toys, music, and so much more. All she's known so far is this room.
Y'all, clearly I'm struggling. But there are nuggets of hope. It’s not all gloom and doom. This week I've connected with some extraordinary people and a prayer experience that are helping me through the mess. To articulate the storm so Jesus will calm it.
The first nugget of hope came a few weeks ago. John and I took a day and night away at a hotel. Oh, how we needed it. I gained space to dream again and just LOOK at and appreciate this man who’s done so much for me and our family. It was pure rest to eat good Asian food, go for a swim in the hotel pool, go for a long walk sans kids, and revisit an old school five-and-dime store I have fond memories of as a child. (We did all the birthday shopping there for Raffy and Zelie and it was FUN!) At mass on the evening of our getaway, I felt I had space to put all my big questions in God’s hands. As it often does, the simplicity of his answer astounded me.
I saw Nora surrounded by light, as if her whole body was swaddled in a halo. Every part of her was illuminated, golden, and whole in an unspeakably beautiful way. I understood that I was being given a moment of insight:
This is how God sees my Honora.
To him, she’s perfect. And it helped me just relax and breathe, to remember that she’s beautiful to the One whose opinion matters most.
The second nugget of hope came yesterday. My friend Mary Lenaburg, whose daughter Courtney went through all this and more, met with me at a Vietnamese bakery for coffee. Mary championed and nurtured me (how does she manage to be everybody’s mother???) She reminded me that this time with Nora is living the reality that we all live all the time, which is that no one is ever guaranteed tomorrow. I could die tomorrow. All any of us ever has is today. And so, the NICU is my school of learning to be grateful for every moment, no matter how difficult that moment is. To be grateful that I get to speak loving words to Nora and hold her hand, even as I experience the emotional pain of watching her suffer post op (and believe me, that’s real and deep pain.)