6 Months of Updates: Honora's Homecoming & Adjusting to Life Post-NICU
Updated: 4 days ago
Wow. Where do I begin? My last blog post was from March, 6 months ago. In the last post Honora was still at Inova Fairfax. She was 3 months into her NICU stay, and we were facing the awful truth that she'd need a 4th surgery. When I recall that time, I still can feel the pit of dread in my stomach. Things are so, so much better now, thank God.
I'll cover a whole bunch of things in this post:
Our final month in the NICU in D.C.
Discharge and homecoming
Nora's prognosis and (miraculous) progress
How I'm doing and what I've learned
The Final Month in the NICU in D.C.
We received absolutely incredible care in Fairfax. The nurses there are SUCH special people. Angels. Some of our nurses live-streamed mass and prayed rosaries with Nora in her room. They all genuinely cared, and no request of mine was too big or small to be honored whenever possible. I still get teary-eyed thinking about that special group. However, John and I desired a second medical opinion about Nora's bowel stricture. It turns out you couldn't get a second opinion from D.C. Children's National Hospital unless you transferred your child there. We were hoping to avoid another surgery at all costs because our Nora had had 3 surgeries already in less than 3 months. D.C. Children's is world-renowned for its specialized doctors and boasted, apparently, the #1 NICU in the USA. Nora's stomach was blowing up like a balloon, bigger and more swollen every day. The stricture got worse and worse. So we pulled the trigger and had her transferred.
Look how swollen her poor tummy is...even her belly button is sticking straight out.
Ironically, Nora's intestines fully closed the exact day we had her transferred. Meaning that, by the time we got her there, there was no viable alternative treatment. She had to go through the same exact surgery that she would have had at Fairfax. On April 22, the surgeon once again opened her stomach, took out her intestines, cut off the section that was blocked, and re-attached them. Our angel was a champion as always.
Immediately post-op, still sedated. Tummy back to a normal size. They used the same incision site as before so she'll have one less scar.
When I think back to our month in D.C., a cloud of fury still covers my memories. I barely got out with my sanity intact. The medical outcomes at that hospital are good, but sadly we found many of the staff viewed nursing as a job, not a calling. A crowd would gather outside your child's room for rounds and no one introduced themselves. I ended up feeling a bit like my child was a guinea pig for scientific observation. They didn't tell you when rounds were happening and if you missed them, no one called to update you on your child's condition. We were used to the doctor coming in and speaking with us one-on-one. It was extremely jarring to move to a less patient-friendly model.
I was also shocked to discover there were no call bells and no nurses' stations at Children's. Being a NICU parent was the most vulnerable time of my life. Nora was tethered by all her leads within 6 feet of the bed and picking her up was painful for her, so I moved her as little as possible. That meant that I relied on the nurses to do much more for me than I normally would ask. Having no way to get in touch with our nurse made me feel desperate, especially if Nora needed pain management medication or one of her alarms was going off. Unfortunately, many days I had to wait hours for any nurse to check on us. Some treated my few small requests as impositions. The worst was the night I found out they let Nora (who had just had major surgery) scream for over half an hour until she wore herself out and never picked her up. I had called to ask why they had turned off Nora's live-stream camera, and the nurse admitted it was because she was screaming. When I asked why she didn't pick her up, she said it was because "We were too busy." Well, I barely slept that night. The next day I spoke with the charge nurse, who told me, "We're an ICU first; our priority isn't to hold the babies." Just what a mom who has no choice but to leave her sick baby every day wants to hear, right?
From then on, John changed his work schedule so that he could be in D.C. with the kids and me 4 days a week. Our goal was to have a parent with her at all times. I feel like I could write a book about stellar vs. poor patient care. Maybe someday.
To all you healthcare workers who view your occupation as a ministry rather than a job: bless you. Your attention and compassion make A WORLD of difference for your patients.
Fortunately, Zelie and Raffy have nothing but fond memories of D.C. We were given a room at the Ronald McDonald House, just 2 miles away from Children's. If you're looking for a charity to donate to, I highly recommend them. When we arrived there were SEVEN big bags packed with presents awaiting us on the bed, one of which held an American Girl Doll! Receiving one of those was the highlight of my childhood, and I still can't believe my 3-year-old has one! They anticipated our needs beautifully. The kitchen was stocked with snacks, and the playground boasted TWO castles,
I did my best to take my older two out for fun times. While all the museums and tourist attractions were closed, we had wonderful walks in Rock Creek Park, the National Mall, and Georgetown. They still ask, "Can we go live at the McDonald house in 'Washing DC'?"
The view from Nora's room. Note the Basilica of the National Shrine in clear view!
What an odd time of life. On my way to the hospital I'd pass the Basilica of the National Shrine of the Immaculate Conception and the campus of Catholic U, my alma mater. I got my degree from CUA, but I was keenly aware I was learning much more from "NIC U" in April/May 2021. During Nora's 4th surgery I walked from the hospital to the Basilica. I went straight to the Pieta chapel, with a massive statue of the Blessed Mother holding Jesus after he'd been taken down from the cross. I had never come so close to understanding her before. Homesick and heartsick, there was nothing to do but seek understanding in her face and pray that God would deliver a positive result for Nora. The next day when Nora's pain was out of control (she had built up a tolerance to morphine so even on maximum doses they couldn't keep her comfortable,) she screamed for 6 hours. On those days I wondered that I could live through such emotional pain. But somehow, you do what you need to do. You sit by the bedside and endure for your child. After 4 months of this, I barely knew which way was up any more.
Doing my best to be strong for my girl as she gets a blood transfusion right before surgery on April 22.
"I was a stranger and you welcomed me."
Because siblings weren't allowed at the hospital, I was faced with the problem of finding child care every day in a city where I hadn't lived for over a decade. My campus minister from Catholic U, Emmjolee, opened her home to us. She told us to drop our kids off at her house any time. And she meant it. She and her husband Larry and their 5 children loved and supported mine. Theirs is a house bursting with life and a superabundance of love. They were our angels in D.C. They made room for us. Writing these words still makes me cry to think of their kindness to us.
I'll skip over the rest of our time in D.C., but you can see more from that time on my Instagram account here. You can also watch my Called and Caffeinated interview with Fr. Mark Goring on trusting through difficult times here, which turned into a mini spiritual direction session for me on dealing with NICU grief, and also my Called and Caffeinated episode with my husband John about our marriage through the NICU experience here. Let's just say, I was beyond ready when Nora was finally discharged on May 17, after 126 days in the NICU. Her intestines finally worked for the first time in her life. Until then she'd received nutrition through the PICC line in her foot.
Remember I shared how we named her Honora after my great-grandma, and a month later came to find out her birthday is St. Honorata's feast day? Well, May 16, Nora's last day in the NICU, happened to be the feast of St. Honoratus. I'm telling ya: no coincidences, folks.
This 7 minute video is Nora's story from birth til hospital discharge, with lots of family first looks. Enjoy! (and feel free to subscribe to my channel, if you like!)
Our first few weeks being home were like a dream. Every morning I woke up in my own bed, got to brew coffee in my own pot and drink it from my own mug, got to sit on my own sofa with my WHOLE family together, got to cook in my kitchen.... it's the simple things, y'all. The little, not little, things. I'll never take them for granted again.
As I expected, Nora is so adored by her siblings. While Zelie has a leeeeetle bit of adjusting to do, not being the baby any more and all, they've adapted and adjusted marvelously. We're prioritizing time together as we collectively heal.
What you see at the end of the video above felt like a miracle. Our community of friends. Before our arrival home they banded together to clean our house top to bottom (someone scrubbed my shower curtain! My shower curtain!!!) They filled our pantry and fridge with food. They filled the kitchen sink with dozens of flowers. They stacked our kitchen table with gifts- you get a quick glimpse of how many there were in the video- so many that the overflow went on the chairs and floor. We were showered with love. Like so much about 2021, I cry (again!) just remembering what it was like to receive that homecoming.
When God sends you overwhelming challenges, may he send you people who will love you overwhelmingly, as he has us. And may you feel as loved and grateful as we do.
The little lady has done so well. I'll start with her remaining challenges and then finish with her INCREDIBLE, miraculous progress and a whole bunch of pictures. And then I'll finish up the post with my reflections on how the NICU has changed me and what I've learned.
Hearing: We were shocked to find out a month after discharge that Nora completely failed her hearing test. The 3-month follow-up in September also showed failed/inconclusive results. It could just be fluid in her ears, or it could be total hearing loss (which she's at a higher risk for, because of her many surgeries.) She's been on antibiotics 3 times since discharge to clear the infected fluid, but it stubbornly comes back. Many kids outgrow the tendency for fluid retention in their ears, which we hope Nora will. One test was able to determine that at least one of her inner ears (cochlea) works, but we don't know which one or if both. And because hearing requires cooperation of both the inner and middle ear, we don't know if she can actually hear. The next step is to get tubes surgically inserted in her eardrums December 3, at which time they'll also do a full hearing test.
Nora will always be perfect to me. It's hard to believe now there was ever a time when she couldn't smile! This was a month or so after she got home, just before she started beaming at us with a toothless grin.
You'd think that, as her mother, I'd be able to tell whether or not Nora can hear by observing her. But it's amazingly difficult to tell! I will say, her siblings jumping down the stairs or yelling near her never awakens her, so I'm almost sure she has reduced/little hearing. But I hope that, when they clear the fluid, she'll be able to hear fully.
Eating: Nora is still fed 100% by G-tube. In the NICU she developed an oral aversion because her mouth and throat were deep suctioned so often. Can you blame her? The poor little thing would throw up if you so much as placed a finger on her cheek. She's only been fed by PICC line and G-tube so we're working closely with her occupational therapist to associate hunger with food and give her positive oral experiences. 4 months out from discharge, her oral aversion is gone and she sucks on her fingers a lot- yay! We let her taste food every day and encourage her to play with it. She's not much of a fan yet, but we find that dipping her fingers in the food and then in her mouth gives the greatest success for her tolerating it. Below is a pic of her playing with food while being fed by G-tube, to associate food with her tummy feeling full. She loves banging that spoon!
I just keep thinking: Wait until her first birthday when I get to let her taste ice cream. I think that'll be game over for the G-tube.
Cerebral Palsy: As you may remember, Nora was given a lifelong diagnosis of cerebral palsy. Her brain scan the day she was born showed significant damage, as well as a brain bleed. The doctors wouldn't tell us anything about her prognosis then: they couldn't say whether she'd walk or talk or anything. But I'm telling you, this baby is amazing. How amazing? Well, I shed a tear yesterday when her physical therapist told me that, had that day been the first time she'd seen her, she would've thought Nora didn't even have cerebral palsy! We do see a little tension/weakness on the right side of her body, but very minimal. And if her brain has healed to the point where even her physical therapist and primary care doctor don't detect muscle tension, that is indeed miraculous.
Nora can roll to both sides, sit up unassisted, and pull up on all 4's for over a minute...basically the same milestones as any other normal 6-month old baby! (She's 8 months but we use her adjusted age since she was a preemie).
Also, when you take into account that she had 4 surgeries and countless medical procedures, how miraculous is that?? The neurologist told us that for every major medical event, children should be "forgiven" a month of development. So Nora, even had she not received a brain injury, would be expected to function at the level of a 2-3-month-old, and here she is showing motor skills that are nearly all caught up!
Like her siblings Nora loves to move, and I think that will serve her extremely well in overcoming any challenges with cerebral palsy. Her doctors now say they can predict that she'll walk and run. What a gift. What an amazing gift. Even if they told us she wouldn't, I know she' have a beautiful life and be so happy.
Speaking of happiness, my favorite thing in the world is seeing how happy Nora is. The agony of knowing she's in constant pain in a hospital room is over, so I can breathe again. I promised her sunshine and flowers and fresh air and kisses from her siblings, and by golly she's getting them. She laughs and smiles all the time. She's the most content, cheerful, snuggly little soul. Everyone in the family works hard to earn the greatest number of toothless smiles and giggles we can!
Nora's first day home from the hospital, meeting Zelie and Raffy. On my face is the smile of the happiest woman in the world (and can you believe how cute Raffy is snuggling her??)
The way he looks at her 🥰
The favorite baby doll of the household always get free rides.
We turned a GI doc specialist visit for Nora in June into a mini family getaway to Charlottesville VA. Bathing Beauty got her first swim at the hotel pool.
On Sundays, we wear pink.
The ol' tongue, her fave play toy.
Daily time outside is one of Nora's favorite things. Her eyes open wide so as not to miss a single thing on our walks.
Nora 8 months old in early October. Just 4 months after hospital discharge she's sitting unassisted, rolling easily to both sides, and loves playing in her exersaucer and watching her siblings' daily tumblings. They are, as one doctor put it, "her best physical therapists."
I'm obsessed with that face.