Catching Up - Surgery Updates

It’s been a whirlwind of a week. Monday, shortly after I posted about all the good news and asked for prayers, Emilia went back on high flow oxygen. I thought since she had made it over 24 hours, we were on the fast-track home for sure. I had already loaded up the car to take a load back to Dallas so we could be ready to that baby home! I decided to go ahead and take it anyway, I had already rigged the deep freezer with an extension cord and plugged it into the vehicle plus no one needs to pick up a deep freezer to knee height more than once a week.

So off Finley and I went to Dallas. Angelica called me from the hospital with the Ophthalmologist (eye doctor). Today’s eye exam had not gone well. Her blood vessels were not growing out through the zones, they were curling. She would very likely need injections of anti-VegF in both eyes to try to stop the curling and help her vessels continue to grow through the zones.

Zone 2 is essentially your peripheral vision/your ability to play sports. Emilia’s vessels are only partially grown into zone 2.

Dr. Mitchell explains the history of the procedure and I open new search tabs on my phone as he mentions things (vegf, avastin, pre-plus vs plus disease, retinopathy of prematurity). I ask ChatGPT if it thinks a 36 week old preemie with Stage 2 ROP should get anti-vegF shots into the eyeball…it tells me I should consult a doctor.

We make it home and I say “hey buddy” as I round the corner to the living room, looking down like Lucky is going to be there. Of course, he isn’t and I’m not sure where that even came from, just habit, I guess.

My neighbor helps me unload at 10pm (we have the best neighbors) in the sticky hot Dallas air and after a quick rinse I lay down and think of how quickly the day shifted… They aren’t sure if they should do the eye surgery before or after the hernia repair. They also might have to intubate her and then it could be a month before they work her down to room air again. They will try a spinal tap and she will be awake for both procedures if all goes as planned, omgosh. The trauma this baby has been through already.

I reach out to the spot where Lucky laid between Helly & I the last time we were here and cry myself to sleep.

TUESDAY

Tuesday, I worked on the house until 6pm, drove to Lubbock, dropped off Finley at the house and went to the hospital to hold Emilia until 3am when they made me give her back to get her ready for surgery :(

WEDNESDAY - Surgery Day

Emilia is more awake than normal. I worry this is going to prevent them from doing the tap and letting her be awake during surgery, since she must be very still. She is just hungry, constipated, and mad about have an iv in both of her tiny hands and the tube back in her nose. When we give her the pacifier, she sounds like Maggie Simpson trying to get milk out of that thing.

There was an emergency surgery before the scheduled surgeries so by the time she finally goes back it’s nearly 3pm. A team of 10-12 nurses and doctors (partial team pic below) come to Emilia’s bedside and put on full ghostbuster suits and hairnets and we all transport her to the 4th floor. She wiggles the entire way, increasing my anxiety of her staying still for them.

They wheel her through a set of doors we can’t enter, so we sit in the hall and jump to see each time someone exits. After not too long, I get a text that hernia is done, and everything had gone as planned! We are so relieved – no tube means we can possibly go home next week. Now for the eye procedure.

She comes out with red puffy eyes from the eye procedure and hard asleep from the meds. She is still on only 2 liters of oxygen at 22%. Great job strong baby, great job.

THURSDAY – Recovery

Emilia is still groggy and puffy eyed. But she is eating. They moved her from high flow to low flow oxygen (these are the tanks you see hooked to old people’s wheelchairs). They said we can go home next Thursday and ordered us oxygen and equipment to take with us. She’ll be 38 weeks. Tomorrow when she is more awake, they will do some more room air trials.

Next week she’ll do a two-hour car seat test (can’t brady). And Wednesday we’ll be in a private room for 24 hours and must care for her solo before we can take her home.

The end, which is really just the beginning, is near, and boy are we ready.