The Wild Wild Wests

Hayyyy! What's up my peeps!  I know, I know I have left you hanging. RUDE!   We are home again.  We were admitted for exactly 24 hours and discharged the very next afternoon. Paxton is walking, in fact he walked the tunnel from clinic to hospital just minutes after his doctor decided to admit him~ naturally~murphys law.  I am unsure about the "fluid returning to his lungs" diagnosis at this point because they did absolutely nothing to him cardiac wise in the 24 hours we were there and "miraculously" it was gone by the next day to be discharged.  While beyond grateful we are home, I am admittedly concerned that this is twice now we have been told he needs a cath only to have them retract with no explanation.  We will be getting a second opinion on Wednesday and I am incredibly curious to see what this doctor has to say.  I don't want Pax to go through anything more, but I also don't want an emergent event happening because this has not been dealt with ...

Oh hell yah!!!! *************************** We broke out peeps!!! I type this to you from my very own bed!!! We were discharged last evening. We didn't tell Daddy and walked into the house around 7:30 without him ever knowing. He was beyond surprised!  So surprised in fact, that he was chillin in his "man pants"  when we walked in so no pictures are able to posted of the Daddy/Pax reunion. ; D The older two boys were already down for the night which was good because it allowed us to get Pax acclimated. We gave him a shower/bath to keep his incision from being submerged, yet allowed us to wash all of that hospital off of him so much better than the brotha baths he got for two weeks. He stumbled around like a drunken soldier (he is still sooo weak) from room to room checking everything out and playing with his toys.  I hovered like the helicopter mom I so am not. I put him to sleep in his very own bed...

It's dusk here. I love this time of day. It is when the world starts to settle.  Calm makes its way in to take over from the chaos of the day. It is when the aroma of dinner begins to fill the house and freshly bathed littles in their jams start to mellow for the night.  I am looking out over the window of Paxtons hospital room, staring at the setting sun with longing; "fighterman" asleep behind me.   I am reminded of how much bigger life is than we can even imagine.  Just as the miracle of babies growing in our belly's is more than just a science, so too is the rising and falling of the sun each day.  Life is big, but there is ever so much more to it when you stop to take it all in. We are amidst life and death right this very moment. Babies on either side of us cling to life. As I stare out I am acutely aware of this.  As far away and lonely as I feel right now from life on the outside, I am also incredibly aware that...

Tonight I cried.  Tonight was one of these nights.  I am sad and I want home.  I want my boy to not be poked anymore. I want him to crawl into his own bed and smell the softness and comfort of home. I want to do the same in my bed.  Daddy came to visit today. He surprised us and it was wonderful because we were sad this morning.  The H word was mentioned about this weekend and no sooner was it brought up that it is snatched out from beneath us.  Paxton's CRP test (a blood protein test to look for infection) not only came back positive but doubled from 7.5 to 19.5 in a matter of 12 hours.  Not good. His body is fighting something somewhere, it's just a matter of finding out what and where.  Cardiologists came in today and went back and forth about why the drastic spike and what it could be from. They talked more testing and more sedation and my heart broke.  I want him home, where he belongs.  I want that normal I talked about, that I ha...

Paxton West status post Norwood, Glenn and Fon-freaking-tan!!! ************************* 8 days post op and nothing remains on this child, but IV access in his right arm.  All chest tubes pulled, pacing wires pulled and all art lines pulled.  Peg tube replaced for a mickey button today and all his meds are PO.  Meds being lasix, asprin, tylenol and clindamycin. It's close!  So close I can smell it.  Smell it as in my home, dinner in the oven, laundry wafting through the house, the nape of my older boys necks. The book that started it all is coming to a close.  Who's ready for the sequel.... Love and hugs~ j

It's a stream of consciousness kind of night because I am not going to lie, today was tough.  Pax and I got roughly two hours sleep last night and that compiled with the lack of sleep in the last week altogether sort of sent us both over the edge today. There came a point where my head was so foggy I thought for sure I was getting the flu. That has since passed, thank God, but it never ceases to amaze me how the body begins to shut down when it hasn't had enough rest.  I kept reminding myself over and over how much worse it could be and I let myself cry when I needed to.  I missed field trips and baseball games today. I am homesick for my boys and it hurts my heart. I have these amazing people stepping in to do these wonderful things with my babes, but I am sad and jealous that I cannot be there.  That is the truth and I think any mother would agree that you can be grateful and jealous all at the same time. Half of my heart is here and the other half is 2 hours away ...

I haven't written because I haven't been able to because I have this amazing little boy who is doing so awesome and needs his Mommy every minute of the day. ********************** I am all and by all I mean,  ALL,  he wants. Which is the most, and by most, I mean,  MOST ,   wonderful feeling there is in the entire freaking world!  He has called out my name approximately 3,678 times since he has come out of anesthesia and it is music to my ears, absolutely the most beautiful sound ever. I am not sure everyone around us thinks so, but oh' is it ever. the fist time i got to hold my boy post op ******************** Paxton's surgery could not have gone any better. He has now rocked the Norwood, The Glenn and The Fontan.  All 3 are behind us. History.  He did it!   I remember sitting at the table 31 weeks pregnant watching the doctor draw diagr...

After nearly nine months and a lifetime of wisdom, I have finally written Paxtons birth story. Oh this journey. So scary and yet so divine.  Grab a cup of Joe, cozy up on the couch and read about our little mans entrance into the world.   ************************ A t 33 weeks, I went in for a routine ultrasound to see if my cervix had thinned at all. I was notorious for early labor and this was just a quick peek to be sure I hadn't changed. I jumped up on the table oblivious as all get out thanking the ultrasound tech for the complimentary 4 D peek we had just received of our baby the week prior.   She began scanning la ti da when all of a sudden she stopped on the heart and stayed for far to long without saying anything. I asked her if she saw something.  My heart was racing before the words ever came out. Sometimes you just know.  She said now let me look.  I laid my head back down, already hyperventilating.  It was then she said that she s...