Honora's Journey Part 3: An Unexpected Diagnosis and Settling in to NICU Life
Isn't it funny how sometimes you can only see things in retrospect? I look back at the days leading up to Honora's birth and I realize there was something really wrong. My ankles, face, hands, and legs were ridiculously swollen and I was exhausted. Not just normal pregnancy exhausted; "I have no will to live" exhausted. I was a ticking time bomb for something disastrous. John, with his medical background thinks I had undiagnosed preeclampsia.
Similarly, today I looked at pictures of Honora from just last weekend. I couldn't see it then, but she looks like such a sick baby compared to now. Her little abdomen was swollen, puffy, and green before her emergency surgery to correct the perforated bowel (in common speak for non-medics like me, that means she had a hole in her intestines that was letting free air and bacteria into her abdomen. The surgery put a little hole in her tummy to release the air and drain the infected fluids.) Now she looks so much better; her color is improving a little every day and I noticed a sweet pink blush on her cheeks. Her eyes are brighter and more alert. I can't wait to get some fat on those cheeks and get her really thriving!
To the hundreds of amazing, generous people flooding my inbox with offers to help, prayers, and kind messages: Your generosity is unparalleled. I am touched, humbled, and so grateful, and I will respond as soon as I can. Some people are even setting reminder timers every single day to pray for her until she's out of the hospital. I'm overwhelmed.
Overall, sweet baby Nora is doing well and the weight of your prayers storming heaven on her behalf plays no small part in that. We got an unexpected long-term diagnosis I'll share more about, but first the more immediate practical updates (and a lil spam of that sweet baby face:)
Saturday's emergency surgery went well. The doctors feel very confident that Honora's bowel is healing and that she won't need a more invasive surgery. Her x-rays show that there's only a tiny bit of free air in her bowel.
This weekend they'll strive to establish whether the bowel is fully healed; if so, we'll start working with speech therapy to get her interested in learning to eat.
She had a picc line inserted in her leg all the way up to nearly her heart (ugh, makes me queasy to think about,) but it doesn't bother her, and that's how she'll receive her nutrition for now.
Did you notice that ventilator's gone??? She's a champ breathing on her own, although her poor little throat is so sore from being intubated. She's still coughing up phlegm, but is doing a great job breathing and getting all cleared out.
I've heard her make two tiny pitiful cries but nothing more so far. Her poor vocal chords have been through a lot being intubated. I was intubated for an hour during my emergency surgery and my throat was killing me for 3 days afterward. I can only imagine how much her throat hurts! Watch her end up being the whiniest of my children once she's a teen ;) #karma
Her brain MRI showed mild to moderate brain damage. Could be better, could be much worse. Time will tell what delays and/or deficits she has. We got an unexpected diagnosis, which I'll share more about later.
John and I have held her several times, FINALLY. This morning I sat holding her while she slumbered for 2 1/2 hours. Absolutely heavenly. I miss her being safe and close to me, and I think it was as healing for me as it was for her. (Pic is from 2 days ago when she was still intubated.)
All vital signs seem to point to her being stable and having a very strong chance of survival, if nothing goes horribly wrong. Deo gratias.
So, on to the diagnosis...
John and I discussed our fears about hearing the MRI results. We agreed that the only thing we're really afraid of is Nora being in chronic pain. I knew it'd be a heavy cross for my mama's heart to watch my child be uncomfortable or in pain her entire life.
I knew the MRI goal was to establish a baseline to assess the damage to her brain during her traumatic, dramatic delivery. I expected they'd refrain from giving us definite answers. I also knew baby's brains can heal in unexpected ways that no doctor could predict. I suspected they'd err on the side of caution as doctors do, being sure to explain the possibility of a worst-case scenario. But what I didn't expect was a definite diagnosis of a condition...
Nora has cerebral palsy. I didn't know you could get that from a traumatic delivery. I really don't know anything about cerebral palsy and I couldn't think of what questions to ask. They explained it's a muscular condition in which some muscles may become very tight. There's an entire spectrum of ways it can affect people, from hardly at all to severely limiting.
As the initial shock wore off I began to read up on cerebral palsy. One of the FAQ's was, "What are the effects of cerebral palsy?" The first effect listed was chronic pain. It said that many individuals suffer from inadequately-managed pain. I was so bummed. I allowed myself several minutes for a breakdown in the bathroom. If she could have just stayed inside and had a normal delivery, none of this would have happened, I thought. And now she has to pay for it the rest of her life by being in pain.
I brought my concern up with my favorite doctor. I love his approach; on the first day we met him, he told us that as a rule, he never tells parents that their child won't be able to do something. He has a gentle way of expressing himself and takes all the time I need to have all my million questions answered. I brought up my concern about managing Nora's pain in the future. He said that it's great I'm a dancer because I can really help her with stretching (the first time we met, he asked about a dance sweatshirt I was wearing and remembered I had told him I'm a former touring Broadway performer.) He also reassured me that I'll know her so well I'll be able to read her signals and know what she needs. That helped me a lot. I painted pictures in my mind of Zelie, Honora and me doing morning stretches every day together. Zelie already wants to be a ballerina and asks me all the time to teach her ballet, so we can make it a family thing. It helped me see beyond the fear to know that there will be a million ways I can help. Nora will never struggle alone.
There's still part of me that's thinking, Why did this have to happen at all? Will she have a good life? I wish I were holy enough to see her disability as a gift, and I hope I'll get there soon. I already adore Nora and I will do anything for her. I think it's good and natural for a parent to want her child to be perfectly healthy, because life is hard enough as it is. So I'm allowing myself space to rail against it in some capacity for now. But a quote I read by Fulton Sheen in his book Peace of Soul came to mind:
"(Christian theology’s) primary interest is the soul, the most precious of things. Our Lord balanced a universe against a soul and found the soul worth more than gaining the world."
He chose the soul. Nora is an eternal soul, and nothing that happened in her oxygen-deprived delivery changed that. She hasn't been reduced from perfect to damaged. She's still perfect. Nothing is more important than souls. Nothing. As I let that sink in, the tears begin and I think perhaps I've been looking at life the wrong way round this whole time. It doesn't just apply to Nora. It applies to you and me and the worst person in the world in our brokenness and our bad habits and our filth. Nothing is more important and precious than a soul.
I hope this blog may help parents who find themselves in a similar situation to ours. Below are some thoughts of what I’ve learned in my first week as a NICU parent. When your child is being cared for institutionally, it’s a steep and often overwhelming learning curve (especially if you're still recovering from birth yourself.) It's a blessing to have modern medicine, but this life sure isn't a natural state for families. Here's some advice you never asked for:
You're in the driver's seat. You have parental rights no doctor or nurse can take away from you. You can refuse care or medications you’re not comfortable with your child receiving. They are trying to avoid a lawsuit, so they’ll act accordingly with aggressive and preventative care. You are your child’s best advocate and you know her the best. I try to approach with kindness and respect each member of the care team’s personal style, but no nurse can tell me I shouldn’t touch my child (one tried.) This morning, doctors kept coming in one after the other just as Nora had fallen asleep. She was up since 8am with tests and care routines, and she's totally exhausted. Finally at 11am I asked the surgeon if she could delay her exam until 1pm. Nora had just fallen into a deep sleep I knew she needed. The surgeon was very kind and said no problem.
It's okay to have favorites. Some doctors will be more clinical and others have a better bedside manner. Lean into the caring ones or whoever you resonate with most. Honora absolutely hated her ventilator tube. I knew she didn’t need it because she’d been breathing great on her own last week with just oxygen supplemented from a nasal cannula. I requested from one of our favorite neonatologists that they remove the tube out as soon as possible. He was respectful and kind, and the next day the tube came out! There was no need to prolong her suffering just out of medical caution, and she’s much happier now.
A marathon, not a sprint. One of the docs told us “NICU life is a marathon, not a sprint.” How true that is. Get rest as much as you can. Accept all the offers for meal trains and assistance, and make time for your spouse. John and I have spent some intentional time reconnecting with each other and going on mini dates this week. My favorite was when we took turns reading excerpts of great works of American literature aloud to each other. It was intellectually stimulating and a gratifying way to spend time together.
No question is stupid. Don't give in to any voices in your head saying, "don't ask that. The doctor doesn't have time for that." This is your child's life in their hands, people. It's their job to have time for you. So far, we've been blessed with amazing doctors at Inova who take all the time I need to get my questions answered. (Only one gave the impression she'd rather be somewhere else.) Talking through scenarios and asking every question about Nora's care plan and outlook that I can think of has proven enormously helpful in getting the big picture. Most everyone who walks through the door is eager to give more information rather than less, and it's reassuring sometimes to hear the same thing several times over.
Everything is going to sound worst case scenario, but it's probably not. I've learned they always, always have to tell you the risks, no matter how unlikely. It's a hard enough journey so don't burden yourself by letting those worst-case scenarios play out over and over in your mind. If the worst does happen, you'll deal with it when it comes and you'll get the strength to handle it. But it's just as likely your child will surprise you with progress you didn't expect either. Don't drive yourself crazy with worry; you don't deserve it!
Surrender everything. The day Nora was extubated she had a lot of thick phlegm. Poor thing kept coughing it up and choking every few minutes. Once when we pushed the call bell it was several minutes before the nurse came. She apologized and said she heard the alarm but thought it was another room. That didn't do much to allay my fears of what would happen when we left :/ As I was having trouble falling asleep that night I just kept surrendering it to the Lord and asking him to put an angel next to her bed to help her breathe. I couldn't sit by her bed all night long watching her every minute, so I had to just hand it over. And of course, she made it.
You only need 3 comfy outfits... and slippers. In our rush to get from Winchester to Fairfax on Saturday, I only had time to throw 3 pairs of pregnancy leggings, 3 oversized t-shirts, a sweater, and a dress for mass in my suitcase. It's been a week, and as long as I do laundry regularly I don't mind wearing the same outfits on repeat. It's really nice not to worry about what I'm wearing and to opt instead for as much rest as I can get while on a newborn pumping schedule. Eventually I'm gonna miss pretty clothes but for now, comfy reigns. Oh, and my mom gave me these slippers that look like Ugg boots. They're literally not even real shoes. But they are making my LIFE. If you're going to make one purchase, buy these! (Sorry I don't know the brand!)
Skip the guilt. We’re missing our sweet Raffy and Zelie who are in PA with my in-laws this week. My 3 children won't be allowed in the same room with each other until Nora comes home, a highly unnatural situation. I know I can’t care for the toddlers right now with my c-section incision (I can barely even make it up a flight of stairs,) but the part-time parent guilt is real. A kind friend reminded me that St. Therese of Lisieux was sent away to a wet nurse for an entire year when her own mother St. Zelie couldn’t nurse her. The separation didn’t harm their relationship long-term, and they both ended up canonized saints. That made me feel so much better! Rule of thumb for parents is: You do your best, and God fills in the gaps.
MISSING these sweethearts so much 😩
I continue to pray that our Nora will receive a miracle from Blessed Carlo Acutis. Symptoms of cerebral palsy will likely surface in the next weeks or months, and it would be incredible and miraculous if she never did. Thank you, thank you thank you to the army who's praying for her. Please don't let up, and know of our deepest gratitude!
Blessed Carlo Acutis, St. Gianna Molla, and Holy Family, Pray for us!
p.s. I'm going to keep blogging about this whole experience. Please let me know what you'd like to hear about....c-section recovery? Other topics?