Mom has hurdles, too.

Did I tell you all we moved out of the PICU to the Cardiac floor on Sunday?  We did!  It's a huge step toward coming home.  Lydia is not under a 24 hour watch, she has two to three nurses in her pod and is checked on when needed and for assessments and feedings.  We are so happy to be there, though it's a bit overwhelming at first.  We're so used to having a nurse in her room to wait on her hand and foot and now we're transitioning into typical baby care.  We can handle this, but on day one it was like they flipped a switch from night to day.

Enjoying her glow worm.  Thank you Katie and Keeley!

I came home from about 8 hours at the hospital and threw myself a pity party last night.  Your invite must have been lost in the mail!  Dan is the only guest who showed up, but mom joined in via text!  Lydia's MIC-KEY button g-tube and fundoplication change things.  She doesn't need all the lovely handmade burp clothes we were gifted because she doesn't need to be burped.  She doesn't need all the tiny "I love mommy" bibs we were gifted because she doesn't feed orally.  Comfy onesies and zipper pjs aren't ideal because we need access to her MIC-KEY button to feed every three hours so two-piece outfits and pjs with snaps are best.  I keep telling myself that ENT has approved trying oral feeds, which means OT will start to work with her eventually and she may be able to feed from a bottle down the road.  

Love seeing this every morning and night!  Thank you Kate!

After lots of talking, texting and crying I realized that I was wallowing around in a pool of pity and snapped out of it.  Lydia is not two months old and has fought through numerous pokes and pricks, tests and assessments, 3 intubations and extubations, open heart surgery, a supraglottoplasty, fundoplication and gastrostomy.  I need to buck up and look at the bright side, for now, she won't be a messy eater.  No baby spit up on me!  

Lydia has pretty dramatic hand gestures.  "I' m getting verklempt talk amongst yourselves!"

During all this I went for a late walk to think through things.  I went through all the whys that still creep in from time to time: why me, why her, why us, and coached myself out of them.  None of the why did it happen matters.  It happened.  The only thing that matters is that Lydia was given to us as our sweet baby girl and we were chosen to be the parents of this beautiful special tiny person.  She's is amazing and is going to bring great joy to us every day.  That's the good stuff!