Healing is not linear

92 Days Old

 Today was a difficult day. 

Ava Grace was in a lot of pain. I am not sure if you have ever seen an infant in pain, but it is absolutely heartbreaking. She arches her back, squirms her body, turns beat red, her oxygen drops and her heart rate elevates. If she is in a lot of pain, she may even have an episode of bradycardia. 

It is awful. 

And there is nothing you can do as a parent except be there. 

Overnight her meds were changed from intravenously, to enteral (which means they are giving them through her feeding tube). Basically the meds are less potent and take longer to get throughout her body. It's the natural weening process they'd like to see post surgery. and they do have rescue doses of meds to give her if the pain is too much. 

She needed a few rescues today.  

We were warned that day 3 and 4 are the hardest. It's when this ween typically occurs. It's a balancing act between allowing her to heal, and keeping her comfortable- not too overmedicated. The team here is incredible and only wants her to be comfortable, but finding that balance takes some time and trials. 

As well, some of her blood gasses were elevated at the beginning of the day, so they had to up her settings on the ventilator. By the end of the day, her gasses were getting better, which means the setting changes were working. 

She also has some haziness in her lungs they are watching closely.

We knew this process won't be easy. We know healing is not linear and in the NICU you often take two steps forward, one step back. 

We knew that it would be hard, but this is heartbreaking. 

We are hoping for a much better day for our Miss Ava Grace, our little fighter.