Milestones are dumb, just like due dates

Milestone cards are important to any new parent of a baby. Things like "I sat up today" or "I slept through the night" are all things you might see.

 For a NICU parent, the milestones look, and feel, different. "No longer on cpap", "I doubled my birth weight", "My central line was removed today." Those are all things Gracie has accomplished. We have the milestone cards and photos to prove it 😁

There are two milestone cards I have been saving in the corner of her NICU room, with anticipation, to use. "Today I am feeding tube free" and "today I am off respiratory support". Unfortunately, this is no longer Miss Ava Grace's path...at least for the next few years. 

Due to Gracie's upper airway obstruction, she will be needing a tracheostomy as well as a gastric feeding tube. 

Unfortunately, after a CT scan and extensive measuring from plastics, Gracie is not a candidate for the mandibular distraction surgery. At this point, it would create more issues down the road for her if we were to pull her jaw forward, so the safest (and only) route for her is to create a stable airway via tracheostomy. 

Her new path and needs come with lifestyle complications and are a lot to digest for us as her parents, but both of these will also mean safety for Gracie. And that is truly all we want. 

While a lot is still unkown, she will require these interventions for at least two years from when they are implemented. The hope is that as she grows, she will grow out of her obstructions and can have these supports removed. 

This news also now means Gracie will need extensive daily at home nursing services, medical equipment, training for us, and frequent trips to Philadelphia. 

Life post NICU just got a bit more complicated. 

Our plan is to have Gracie undergo her surgeries towards the end of this week, or in the beginning of next. She will have to stay intubated until they can get her trach placed. 

We are hoping to finally be able to go home as a family of 3 by beginning of summer. Best case is 12 weeks post surgery, but sometimes it takes longer. 

Please continue to keep Gracie in your prayers. She is one strong little fighter. ❤