The Wild Wild Wests

This is not ok with me.  It is what I saw first thing this morning when I walked out the doors of ACH.  The hospital was being decorated for Christmas and it struck me so strongly it took my breath away. Whether Pax and I are here or not, there will be others that will be spending the holiday in the hospital and it just isn't fair.  These babies, these innocent children do not deserve this and yet it's real life.  If Paxton were here then so too would I be.  You just do it when it's your baby, but that's not to say seeing this as the sun was rising over the horizon first thing this morning didn't sting like hell.  It is after all, a harsh reality for many. ********************* So last nights post was hard.  I wasn't sure if I should post it at all, but I pride myself on this blog being "real".  I don't paint pretty pictures if it's not pretty. I want to remember this journey in all of it's glory. The good, the bad, the ugly. So that I c

So I sit here in the wee hours pretending that I did not just arrive back at the hospital with Paxton again after only being home for two days. This can't be happening. How did this day go from running errands to mad dashing it out the door 2 hours north again. I say good bye to another night of sleep again, because lord knows the vinyl couch, my mind spinning and the noises of a hospital just don't make for good shut eye.  My whole body says rest. My head hurts from crying so much today.  My mind is numb.  This is one of those posts where I tell you to move along if you want rainbows and sunshine because tonight you won't find it. I am sad and scared and frustrated. I want answers and I want to be home. I want my older two boys to not cry hysterically for mama because she was just gone for 8 days and now I have up and disappeared on them again dammit. It shatters my heart to do that to them because I know they can only grasp so much of that. Today I melted. Melted like I

Tomorrow is Thanksgiving. Paxton nor I will be home for it. We have been in St. Pete at All Children's Hospital since last Thursday night. I have noticed ever since Paxton started crawling that he turns blue and his breathing is very labored. While I have been told this is very normal is a single ventricle baby, something in my gut was telling me it wasn't with Pax.  I kept mentioning it to anyone that was around and most of the time just brushed it off thinking I was overreacting. After all, just seeing Paxton crawl makes me become helicopter mom wanting to land all heroic like and save him from the struggle that merely crawling after his brothers is for him.  I want to just pick him up every time and take him where he wants, but I know I have to let him be a boy. Annnyway, I noticed last Tuesday/Wednesdayish that he was significantly more cyanotic than even before. So I busted out the O2 monitor and spot checked him. He sat around 77.  Low for him as he is typically 85-87

  (As promised nearly a month late) Our miracle baby's first birthday... I canNOT believe it has been one year since I first met the most amazing, brave, gorgeous, heroic baby ever. Cannot believe the journeys we have traveled in 365 days.  More hospital visits than I can count. More echos, ekg's, meds, syringes, stats, trips to Tampa/St.Pete than I ever imagined for my life, but with that came more love from the happiest little boy!  Pick on me like he's been picked on this past year and I'd be the grumpiest person you'd ever meet, but not Pax. He gets it. He knows he made it. He knows his time here is a precious, precious gift and he has chosen to rock it.  He smiles every day and laughs a belly laugh that is the sweetest sound I have ever known. ( Good lord son, if you didn't get my big ole' mouth!) One year!  It can change everything! (Thank you Nana for baking his first cake!) ******************************* Please note tha