6 Months of Updates: Honora's Homecoming & Adjusting to Life Post-NICU
Updated: Oct 14, 2021
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.
This month, October, we fulfilled a dream of mine: A family trip to the National Zoo in D.C. Sadly we didn't get any photos of all 5 of us- John was the photographer here! The Zoo was closed when Nora was in the NICU at Children's, and I dreamt then of a time when we could all enjoy it together in the sunshine. Take nothing for granted, my friends.
Chunky, happy, pink, bright-eyed, and snuggled on daddy's chest at the Zoo.
Nora got to briefly meet her 96-year-old Great-grandma in June, two months before Grandma passed away. This is the day she was discharged from the NICU, wearing a gorgeous dress my mom smocked and sewed for her. We miss my Grandma very much.
Me and my girl, 5 days after coming home. I've been prioritizing self-care as I adjust to life as a special needs mom. Putting on a nice outfit every day and revamping my wardrobe are some of the fun outlets that help me feel sane every day.
Daddy feeding both her mind with knowledge and her tummy through G-tube. The bag holds her milk while the blue pump on the IV pole pushes the milk through the plastic tubing to her stomach.
The eyes have it.
Tea parties pair well with nap time. Just after coming home Nora slept nearly all day. I think she was a bit overstimulated sometimes...I wonder why???
John helped me build these bookcases and window seat in our living room shortly after we returned home. We used Ikea Billy bookcases and an Ikea tv stand as well as John's mad carpentry skills to make them look like built-ins. So, so happy with this project and it cost less than $500! I spent so much time missing my home for the 4 months I was gone. I tell John that redecorating is "part of my healing process." We laugh, but it's true. 😂
An afternoon out celebrating our 5 year wedding anniversary soon after Nora was discharged. If you haven't fed your baby by G-tube at a winery, you haven't lived! 😂😂😂
John has been absolutely amazing. Someone told us an experience like this either brings you closer as a couple or drags you apart...for us, it's been the former. We truly feel greater tenderness and joy together, having supported each other through such challenges.
Which leads me to the last part of this post...
How am I doing and what have I learned?
I'm such a student of the school of life that I don't think I have too much wisdom to offer. But I suppose if there's an appropriate place to share my half-formed thoughts, my blog would be it!
A few observations in development that I'm learning/have learned:
Overall, I'm doing great. Therapy and talking with John are helping me process the entire experience. Last week John saw one of the NICU nurses who helped save Nora's life when she was first born (if you recall, it took 22 minutes of CPR to bring her heart rate back,) and the nurse told him, "If anyone didn't believe in miracles before, they would after hearing Nora's story." I wish I'd been there to talk to that nurse too. I was suddenly beset with a desire to fill in the gaps of what I missed that night when I was under anesthesia. To know and come to grips with it. And I think it'll be that way for a while: I'll remember a specific hard day and it'll grow in my thoughts. I'll cry and need to talk about it and make peace with it. But I don't dwell on it most days. I do the things I wanted to do when my entire life was on hold: hanging out with friends, lots of family TOGETHER time, thrift store shopping for a wardrobe refresh (finding deals is a hobby of mine!), and cultivating my many, many houseplants.
There's definitely a link between happiness and empathy. Every once in a while, I encounter someone who hears my story and is unmoved. It's almost like they stopped listening after they hear me say "I've had a hard year" and are just waiting for me to stop talking so they can spill their (usually much less severe) story. It's jarring when it happens, but I don't dwell on it. On further observation, I've noticed that these people who lack empathy have something in common: they're the unhappiest people I know. Can I read anyone's soul? No, and perhaps I'm making too many assumptions. But each time I see them they seem deeply uneasy. They seem almost constantly preoccupied with their own thoughts and problems.
The ultimate empathy is demonstrated in the person of Jesus Christ, God who entered into our reality fully by becoming human. I'd never linked Jesus becoming human with empathy or happiness before. I'll leave this half-formed thought here and maybe expound on it in future...
Grief over Nora's disability has been replaced by hope. Through many of my blog posts I've shared how I agonized about Honora's future after the shock of hearing her disability diagnoses. I've been completely, painfully honest because I know other people coming after me will need that honesty. And so here's my honest update: Over time, as I've seen Nora blossom at home, there's been a gradual shift in my mindset. Now that she's out of pain, I don't worry about her future any more. I think the shift started when I got to see her enjoying her life. And then, from there, I realized that grief over her disability only happened in my heart. She wasn't grieving; she's happy to be alive! And once I realized that she was going to be okay (in the big sense of the word,) I was okay. I don't need to grieve what she doesn't perceive as a loss. And truly since then, I haven't worried about her CP or her potential deafness. I just love her and keep her close to me and help her make as much progress as she can. We do a lot of PT and OT and are going to help her achieve the best mobility she can. I pray that every special needs parent receives this peace and hope as well.
One of my favorite Bible passages makes more sense to me now than ever before: "We even boast of our afflictions, knowing that affliction produces endurance, and endurance, proven character, and proven character, hope, and hope does not disappoint, because the love of God has been poured out into our hearts through the holy Spirit that has been given to us." -Romans 5:3-5
My priorities have changed. Perhaps it sounds cliche, but I can see more clearly how every day is a gift. Not just a gift if everything goes right, but 100% a gift. I almost died in January and any day we get to be together is a good day. I tend not to take on too much these days. I do the projects I'm passionate about, like my podcast and filming Ascension Presents videos (coming out November 2021- yay!) I say no to what doesn't resonate with a deep-down YES. Spending time building community with in-person gatherings is more important than before. Social media is much less important.
Often faith isn't a feeling; it's a choice. I can't tell you how many people have told me they're encouraged by my faith. I always want to say, "but I mostly didn't have faith! I have no idea what you're talking about!" I felt completely devoid of any feeling of God's presence through the NICU months. I prayed all the time but it felt like play-acting. The one place I could see God was in the many, many wonderful people who were praying for and providing for us. It felt to me like God was behind a closed door I was banging on, but somehow others could see something I couldn't. Now, months later, I can see God's action and providence and provision throughout our time, and it amazes me. My faith is deeper, but I can't yet express exactly how that happened.
I write all this for the people coming after me who are suffering: Even if you hear and feel nothing, keep talking to God. Keep choosing to acknowledge him as the One in charge. Your prayers in your time of suffering are very precious to him.
Do the big ask. My spiritual director told me to pray that Nora have no lifelong disability whatsoever. Even though that's what I wanted too, I was a bit embarrassed to ask God. Maybe I felt like it was disrespectful to ask for something so big...I don't know. But I did pray for that. And here we are, nearly 5 months out and Nora's showing almost no effects of her brain injury. She continues to get better and better. When you look in the Bible and see stories of how God loves to raise up the disadvantaged, the disenfranchised, the poor, the disabled, the infertile, and make from them unlikely heroes, it makes sense. Why did I think he couldn't do that in my life? As Sarah Christmeyer said in her Called and Caffeinated episode, "God loves to plant life where there is none." (She gave such an incredible interview btw!!!) It's God's way. And I'm so honored my family's story is another manifestation of his glory.
Don't wait; take care of yourself now. I used to think I had to wait for my kids to grow up to own and wear nice clothes. Hence, I fell into wearing yoga pants and sweatshirt as my norm around the house. There's nothing inherently wrong with that, but doing it all the time made me feel schlumpy and a bit resentful that other people "are allowed" to enjoy style and getting dressed up, while I "couldn't." I've learned the value of putting on a great outfit in order to feel great, especially now as a mom of 3 small kids, one of whom has special needs. I need to feel worthy of being seen, and the time I've invested in looking nice is time well spent. You can watch my interview with the beautiful Nicole Caruso all about the intersection of style and faith here! I see working out and having pieces in my closet that make me feel great as a necessity now, not optional. It started when I found Audrey Coyne on YouTube, as I sat in an armchair holding my sleeping preemie day after day. I needed something fun and failure-free, and discovering her classy style was a major turning point for me! Another favorite I've discovered since is Lydia Jane Tomlinson. I love her timeless style, and have had such fun times investing in developing my own.
And that's it for now! I want to write in future about becoming a special needs mama bear post-NICU because THAT is quite the journey. But I'll leave this here for now. Also, I plan to make a video of Nora's progress so you can see her doing all the cute things she does. Keep an eye out and don't forget to subscribe here so you don't miss it :)
To our prayer warriors, our bringers of meals, our senders of gifts, and anyone who has sent me an encouraging shout-out: I love you. Thank you for loving me. It all helped.
To Nora's guardian angel: Great job. Just wow.