The Wild Wild Wests

What is it about the holidays that makes one so sentimental.... My mind wanders about trying to piece it all together...this whole entire year and all of it's chapters.  They seem like only yesterday and yet a lifetime ago all at the same time.  As always, I begin to wonder what a year will bring.  I wonder where life will have lead us 365 days from now. I thought back to last year around this time.  How I was filled with terror every day having just brought our son home, the son who had just had open heart surgery, the son who was housebound from people and germs. The son who was still such a blue baby. Still so critical. Still on a heart monitor 24 hours a day. The son who still had a feeding tube coming out of his belly.  The son who had his formula fattened in order to gain weight. The son who was not allowed to cry for more than 5 minutes.  Oh' the fear that filled me to the brim.  The dread that I had getting in the car to go anywhere for fea...

A mother's perspective You passed me in the shopping mall...(You read my faded tee)You tapped me on the shoulder...Then asked..."What's a CHD?" I could quote terminology...There's stats that I could give...But I would rather share with you...A mother's perspective. What is it like to have a child with a CHD? It’s Lasix,aspirin,Captopril… It’s wondering…Lord what’s your will?… It’s monitors and oxygen tanks… It’s a constant reminder to always give thanks… It’s feeding tubes, calories, needed weight gain… It’s the drama of eating…and yes it’s insane! It’s the first time I held him…(I’d waited so long) It’s knowing that I need to help him grow strong… It’s making a hospital home for awhile… It’s seeing my reward in every smile. It’s checking his sats as the feeding pump’s beeping… It’s knowing that there is just no time for sleeping… It’s caths, x-rays and boo boos to kiss… It’s normalcy I sometimes miss… It’s asking do his nails look blue? It’s cringing inside...

Oh yes it is.  The boys totally "get" it and it is SO much fun! Oh' it is so great to be home, going to Christmas parties with my boo's and getting haircuts and making them breakfast.  I love it!  I appreciate it. I relish it because I never know when I will have to jump ship again. We decorated the tree.  A really, really big one. Like some 10 feet that the boys picked out and thankfully our ceilings are able to accommodate it. The front door. Not so much. After a few lost branches we made er' work though. We fought over ornaments, investigated and laughed big belly laughs... We snuggled and hung, snuggled and hung...   (Holy tired Mommy just home from a week in the hospital batman. Little did I know here I would be going back for another week the next day.) (oh you gorgeous thang you) When all was said and done we sat back and admired... (i phone pic) Erh... or borrowed Mommy's camera and took photography into our own hands (thank you Austi...

I know, I know, it's been far to long.  We all remain at home and doing well. I have been spending a whole heck of a lot of time trying to catch up on life.  There was/is a lot to be done especially with the holidays just around the corner. Gahhh! My list keeps getting longer and longer instead of shorter, but I push on.  Cause I am good like that ; ) As you can see, ole bloggie has gotten a much needed face lift and I love, LOVE, LOVE it! My girl over at Once Upon A Blog did the surgery and as always I gave her free reign and as always she was right on target for what I was looking for. Thank you Jennisa! So, in other news the tree is decorated and gorgeous I might add, mostly because it has all of our previous years christmas cards adorned from it as well as all the boys ones that they made me from school.  I love to unpack those boxes every year and see how big they have gotten!  It really is incredible. And I have some great pics to share only my...

We are home. Having been gone for two weeks, there has been a lot to catch up on.  I am finally able to sit down and write a quick post.  I am beyond grateful to be back to everyday life.  Those days in the hospital where time seems eternal make a person appreciate the every day little things all the more. I have a lot of shout out's to throw out there, like people that rise to the occassions and help my family and I, when at the drop of hat, we have to leave for the hospital.  I could list off names for five minutes, but you know who you are. My chauffers, nannies, errand runners, sleep catcher uppers, clothes bringing, eye roller, diet coke getting,  baby boy loving, spirit lifting peeps! Even my blog readers near and far that either leave comments or send me personal emails, thank you!  You'll never know how much hearing from you makes my day. And I am grateful for my baby boy who always keeps me grounded.  Who always reminds me that while this ...

I am sitting in the dark at RMH while Pax sleeps in the pack n play. It's been two weeks here at the hospital.  I won't lie, today I am dragging serious a*#.  I wonder how much the heart can take. How much tugging and pulling, waxing and waning, highs and lows, full up of loneliness can one take... I want the loneliness to end, but somehow when all you do is step outside to get a diet coke and return to the hospital life you feel alone, because outside, out there, are all kinds of people going about their lives. Perhaps preparing for Christmas or meeting a friend for lunch or falling in love. Then there's me, walking the same walk I have walked oh' so many friggin times back to the electric doors that open with my visitor pass key card to let me into a place I would gladly freaking give that key back to. Only this is normal... This is going about my life and it's lonely.  I want to be Christmas shopping or romping around in the backyard with my boys. I want to n...

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...

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...

  (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...