Home 22q11.2 July 24th, 2021

July 24th, 2021

by Summerly Rowlands

Saturday, 7/24

Last night was really hard.

After getting the positive DiGeorge results, I couldn’t relax my mind.

“no cure” … Stop googling.

“likely to be diagnosed with Autism” … Stop googling.

“much higher chance of psychosis and schizophrenia” … Stop googling.

“can die by the age of 3” … Stop googling.


I fell asleep around 7 am and woke up at 10.

I was so tired and emotional.

I couldn’t do anything but stare at that stupid fucking haunting monitor.

It didn’t help that Izzy continues to majorly struggle with her breathing & feeding.

Her oxygen was constantly dipping into the 70s and 60s. It would always go back up on its own, but that’s besides the point. We can’t take our daughter home with her not breathing every other 10 seconds.

Her bottles caused her to projectile vomit over and over. Now Sterling is with her in x-ray to check the placement of her tube to see if that has anything to do with it.

Good news: X-ray came back normal meaning placement of the tube is where it should be.

Bad news: If the tube placement was off, then that would be an easy explanation and an easy fix to Izzy’s throwing up. But since the tube is in the right place, now doctors are concerned that one of her heart abnormalities is possibly causing a “sling” over her esophagus, which would be the cause for her eating troubles.

Good thing we’ve been told over and over not to worry about anything involving her heart…

Up next: CT scan.

If it shows no sling (God, please, no sling), then baby girl’s reflux is just really, really bad and like we’ve been told before today, maybe she’ll grow out of it.

However, if the scan does show a sling, then Izzy has to have heart surgery.

Here we were, 11 days ago, thinking we were coming in for seizures.

Now we have a daughter with a lifelong genetic disorder who might have to have heart surgery.

Izzy Snow, I hope you know, now and forever, how sorry I am and how much I love you.

0 comment

You may also like

Leave a Comment