One More Stop...

Gracie is a rockstar. This week we have had our second trach change and mommy and daddy have taken required care classes, done bedside trach care, g tube care and med pushes. She has weaned off one sedation medication completely and are working on weaning off the other two. She is down to 30 min bolus feeds and is eating 100ml each feed! She is also a very chunky (and happy) girl ❤

While Gracie has had a great week, momma has been struggling a bit. 

We had a team meeting this week about next steps. Gracie is stable enough that we are now thinking about steps to get us home. The plan is that when she is no longer needing the medical side of care, (vent settings locked in and she's is on home vent and totally weaned from her drugs) she is going to be transitioning to Blythedale Children's Hospital in NY for rehab and trach education before being discharged to home!! 

This means Mommy and Daddy can finally come home! She will be in a hospital only 25 minutes away and her grandparents can also come and learn care for her.

This is great news- fabulous even! It means we're closer to being home all together. 

But this meeting also sent me in a tailspin.

Blythedale will be Gracie's fourth hospital since she has been born and the reality of it all- needing a vent, a trach, a g tube and nursing care when we finally do go home is a lot.

It's no longer this arbitrary idea of someday returning home, but it is now becoming a reality...and feeling even more real that we were robbed of all the newborn things, all the new parent things. 

She is now a baby baby, and we will have spent the first 200+ days of her life in a hospital. 

By the time we go home, she will have been inpatient longer than she was in my belly. 

I am super grateful we will be able to bring our baby home and care for her but I'm also super sad. I'm having a very hard time with our reality and I'm learning that being grateful and being heartbroken are two sides of a coin that can coexist. 

I don't share this for sympathy, or to hear, "you're so strong" "she's lucky to have you" or variations of it...I know I am strong and we are damn lucky to have eachother. Sometimes I'm amazed I'm still functioning in any way and I often look at her and cry because I love her so much my heart literally hurts. 

Why do I share all of this then? I share because I am trying to acknowledge my feelings, allow myself to feel them and identify them. Create space for the "this sucks" side of it all. Becuase this does suck. It was not supposed to look like this.

And if by some chance me sharing our story allows someone else to not feel so alone... well that would be pretty great too.