The first time my daughter had surgery, she was only three weeks old.
She was born with a condition called bilateral choanal atresia — a medical way of saying that her nasal passages didn’t connect to her airway. We would later learn this can sometimes occur with Cornelia de Lange Syndrome (CdLS), the genetic disorder she was diagnosed with in utero.
One thing I didn’t know before becoming a mom: newborns are obligate nasal breathers — they have to breathe through their noses. But Dot couldn’t.
When she was born, the doctor laid her on my chest for just a few seconds before her umbilical cord unexpectedly tore. She was immediately taken to stop the bleeding, and the NICU team jumped in. They quickly realized something was wrong: she wasn’t crying… or breathing. This was unexpected. They had been prepped for potential heart issues, but none of us expected the cord to break on its own, or breathing issues.
She was intubated and stabilized, and I was given the briefest chance to see her before she was whisked downstairs to the NICU. My dreams of a golden hour, of delayed cord clamping and quiet bonding, vanished. All the hopes I had for my labor and delivery were completely dashed. The next day she was transferred to the children’s hospital NICU, and I was discharged. I shuffled my very sore body home to shower, change, and then right back to the car to go be with her.
(As a side note: I do not recommend hospital recliners for postpartum recovery — but if you must sleep in one, get yourself a very nice donut pillow.)
Those first weeks were full of uncertainty. We didn’t yet know what was wrong or how many hurdles were ahead.
The second surgery came just four days after she was discharged from the NICU. Shortly after arriving home she started to sound more and more congested. I tried to do all the things they told me. Surely they wouldnt have released us if she wasnt ready?? But after an anxiety ridden weekend, I decided something was not right and we needed to go back to the hospital. On the way to the ER, she stopped breathing. I remember reaching behind me trying to stimulate her while praying as hard as I ever had that the Lord would make the last two lights of my drive green. There was ONE space in the lot left.
I brought my gasping blue baby into the ER triage and we were immediately hustled back and re-admitted to the NICU room we had just vacated a few days earlier. he dissolvable stents they had placed in her nose had begun to break down. The natural collapse of the stent along with some really crusty boogers plugged her newly created airway. The ENT reopened the passages and replaced the stents, and we were given strict instructions to see a local ENT immediately after our upcoming move across the country.
Surgery number three happened in our new state. The local ENT said everything looked fine and told us to follow up in six months. But three weeks later, with my husband out of town, Dot had a terrifying night of labored breathing and apneic episodes. I packed her up and drove to the children’s hospital ER with a friend. I explained her history and begged them to page ENT. Thankfully, the ER doctor agreed.
We were admitted in the afternoon and taken to the OR the next morning. But by that night, her nose was completely blocked again. What had been labored whistling breathing through her nose just stopped. Thankfully she was able to figure out breathing through her mouth enough that intubation wasn’t necessary again. But what was supposed to be a minor procedure became a full revision — her airway had scarred completely shut.
Surgery four was preemptive. Our new ENT wanted to stay ahead of the scarring. This one was smoother — surgery, one night in the PICU, and home the next day. We’ve learned the rhythm now. The procedures may be “routine,” but the stress never is. There’s always the anticipation — pain management, sleepless nights, the sound of her whimpering in the dark. Sometimes the dread is worse than the event itself.
After surgery four, we returned for a checkup. Despite our hopes, her airway is scarring shut again. Surgery five is now scheduled.
It’s not an emergency, and we caught it early. That’s a blessing. But the reality that she’ll have been in the OR five times in her first six months of life has me reeling.
I keep crying out to God:
“How long, O Lord? How much more? When will things finally go smoothly for her?”
I don’t have those answers. I don’t know how many more surgeries are ahead or what else this journey will hold.
But I do know this:
We have never walked a single step of this alone.
So as we prepare for Surgery Five, I’m clinging to the truth I’ve seen over and over —
God has been faithful before.
He will be faithful again.