Babies with Ramona’s condition, Tetralogy of Fallot, are referred to by the nurses and doctors as “tet babies”. As they are removing some of her sedation (the Versed for those of you keeping score at home), she is becoming more aware of her surroundings, has her eyes open more and is just a wiggleworm in general.


This causes her to get really mad sometimes about her breathing tube and all the shifting around can cause her pain. Last night I spent the night at her bedside. Around midnight she had an episode of distress called a “tet spell” and her oxygen dropped into the 60’s, her heart rate went up to 180’s, and her pressure also rose.

This is so scary for me. They tell me this is normal and she will continue to do this even if we are able to take her home, but it’s so hard to see. Because of her pain meds and sedation, she begins to foam at the mouth, her eyes dart to and fro, it’s very upsetting. I’m trying to trust that the doctors know so much and that they feel she can handle all these changes.

The good news is that she is awake more and her saturation seems good in general. We’re not seeing the high 80’s, low 90’s that we saw yesterday but she is well above the mark of 75 that they have set for her. I keep reminding myself that they have removed a lot of her support these past two days and she has the right to have a reaction to that!

We have been given permission to bring some of her personal things from home. She now has a mobile to look at and a bunch of cozy blankets and stuffed animals. Her two main nurses, Desty and Nicole, keep a ridiculous pink bow vaselined to her head that I have to admit I’ve become quite fond of. They’ve removed the IV in her head too, so we get a chance to see her a little better when they change the brain profusion monitor on her forehead.

So, that’s where she’s at this morning. Hangin’ tough. The plan for the day: remove her chest drains, reduce her nitric oxide to 2, then 1, then off, keep turning down her ventilator rate, start to feed her some breast milk (2 cc’s at a time), cut the pain killer and sedative in half, and generally rock her world. A bit of cardiac trivia: When they are able to finally turn off the nitric oxide (it dilates her arteries), they will give her a dose of VIAGRA to ease the transition. Now that’s something I never thought a doctor would be recommending we give our baby girl!

So wish her luck and pray. The surgeons last comment as he left the room this morning after rounds was “she continues to amaze”.

-Jane