Celebrate the good days

94 Days Old

Yesterday was an extremely challenging day for Ava Grace... and us. 

Her first two days post surgery were great. She had minimal swelling, her surgical site looked amazing and she seemed very comfortable. On day 3, they started drastically weaning her pain meds and making respiratory changes. 

After that, it seemed as if they could not get her pain under control and the changes were just too much too fast. 

I always say Gracie puts on a good front. Even at Yale, she would look like she is rocking out and ready for a big change, but as soon as you made one, she would say NOPE and need to come back up on support. 

On post op day 3 and 4 over this past weekend, Gracie really struggled. She became much more swollen, very agitated whenever she wasn't sleeping, and her stats were all over the place. The nurses had to keep giving her rescue (PRN) pain meds. These are additional doses of medication she can have if her routine pain regiment isn't enough. Her blood gasses weren't good. She was expelling secretions from her lungs that were yellow and gunky. There were so many things. 

The worst was on Sunday when Nikko and I were having a late lunch. We came back to her NICU room to about a dozen medical professionals in the room. Gracie had just coded and needed to be bagged to come back up. Her oxygen saturation was in the 30s and her heart rate was in the 70s. 

We were terrified. This is the second time she has coded in her short little life, but the first time she needed bagging. 

The medical team decided to give her much more support on her vent and repeat blood gasses and a chest x-ray.

Spoiler alert- the gasses weren't good. Her CO2 rate in her body was extremely high. Her upper lungs showed fluid and collapse. She needed more support from her vent. 

Thankfully today was a much better day. Her blood gasses overnight were better and sustained a good number throughout the day today. Her pain is finally under control and she was adjusted enough with respiratory support that they were able to wean some of her ventilation settings while still providing enough support. 

She is still very swollen in her face. Her tongue and surgical sites actually look great.  Her pain seems well managed now. 

The highlight of our day is when Gracie was alert. She didn't seem to be too uncomfortable and it was so nice to see her pretty baby blues again. 

One thing we have learned through this journey is that not every day will be a good day. So today we are celebrating that her day was good and pray that she has turned a corner and will continue on her path of healing.