Day 80: Brady watch and Christmas miracle?

So as of yesterday morning we have been given the official thumbs up that the clock has begun on “Brady watch”. Basically, we are holding our breath that Sofia goes 5 days straight with no dips in her heart rate (bradycardia) that would occur during sleep and require stimulation. If she does we could be released by the 22nd. This is amazing because just last week all indicators were showing that we would most likely be spending the holidays in the NICU and most likely through the new year. But that’s the thing about the NICU shuffle, as soon as you take two steps back…you could be taking one big twirl forward!

Here’s how the story went. Last week Sofie was struggling with consistency on taking her feeds by bottle. She would have a great day where she would take 5 out of 8 full bottles one day and the next day would require the majority of her feeds be placed by tube. Here is the frustrating part with how feeds work…
First of all, the nurses work on a “cue based” feeding initiative. They wait to see if baby shows signs of interest in feeding such as crying and rooting. Our issue is that Sofia rarely cries when not in pain or for extreme frustration. She would wake up early (about 15-20 min) for her assigned feeding time and just lay patiently waiting to be fed, if the window of opportunity was not noticed for too long, she put herself to sleep, at which time, a nurse would check on her and she would be asleep and deemed “uninterested”. She’s not the squeaky wheel and with 2-3 other babies on the same feeding schedule, she needs to be sometimes. So, I became her squeaky wheel.
I spoke with the nurses manager and she made sure to speak to our nurses. Friday afternoon Sofia took the liberty of removing her own feeding tube. The nurses took the liberty of replacing it when she refused to take more than 15mls at her next feed. On Saturday, Sofia made the executive decision to remove it again. I tried to unwrap her one hand as she pulled it and she lifted her other hand up and yanked it out completely! She meant business. The nurse practitioner decided to give her one more chance to prove herself and she stepped up to the challenge! As of today she’s taken every feed and has not had any Brady’s. We are hoping and praying with all of our might!!! All prayers are welcome…we need a Christmas miracle to be home with family for the holidays.

Look Mom, no tubes!