The Wild Wild Wests

Paxton, as many of you know, had a rough weekend. That is part of the reason my Sunday post was so "angry". While my husband was here on Saturday with the boys, we got the call at midnight that Paxton had taken a turn. When the phone rang at that hour, I literally froze. I had just been there at 9, how could he have changed so quickly, but I am learning that is totally possible with these babies at any given time. Friday the speech therapist came to see why he was so "noisy" when he eats as we all felt there was the possibility he was aspirating his food. Not only did she tell me she really felt there might be damage to his vocal cords during surgery (because the vocal cords are right next to his aorta that they worked on), but I came into his room after leaving for 15 minutes to pump, to see this strange woman holding and feeding my son, when I had yet to be given the chance. I was livid. I am his Mommy and I should have been the first one to hold him and she was...

Some Day... Someday, hopefully, very soon... We will all be together again as a family!

Whatever happened to "easy like Sunday mornings..." Not in our world. Today is Sunday and it has only become a day of dread for me. My boys just left. My Mommy mini van pulled out with my entire family in it while I stood on some stupid sidewalk in some stupid town that I don't even know. Today, I will warn you, I am angry. I am alone in this stupid condo with toys spread about reminding me that the loves of my life were just here and now they are gone and I am here for who knows how long. I am angry. If you don't want to read about it, which I completely understand, then click on your favorites and move along because today I am angry and since I am alone and have no one to hang it all out with except my computer I am writing. Man have this computer and I gotten close lately. It's a wonder it still types with all tears that have dropped in the keys. Today, I want my life back and until I was reminded by a gem of a friend that feeling this way is only HUMA...

Born October 8th, 2009 at 1:38 pm weighing 7 pounds 14 ounces and 22 inches long. First open heart surgery on October 12th at 4 days old lasting 5 hours. Went back under anesthesia 2 days later on October 14th to have chest, that was left open to allow for swelling, closed. Spent the next 8 days on a ventilator. Fighting for his life and slowly healing one day at a time. On October 20th Paxton was well enough to have his ventilator taken out! A very BIG hurdle jumped! A very glorious day! October 21st he tries to eat again. This will take some time and practice. He loves his "pappy" and has from day one. Today, October 22nd, Paxton is moved to a private room! And removed of all oxygen helping him breathe. Paxton breathes room air on his own and the only tube left on his face is his n-g (feeding) tube. He weighs 7 1/2 pounds, has his Daddy's eyes, loves to be swaddled snug as a bug, cannot stand to have a dirty diaper and he will let the world know if he has one, loves h...

Yummy, yummy, yummy he's got milk in his tummy! And again... He is still learning to get his swallow reflex to work so a lot the milk falls out, but give him a little time and practice and this hungry boy will have eating down pat! Another hurdle, very nearly jumped! We just have to make sure he eats enough to sustain him. These babies hearts work so hard that they burn their food off very quickly, so it's super important that they keep their caloric intake HIGH! If he cannot take in enough on his own, then he will keep his feeding tube, where we will give him what food he doesn't take through that. Only time will tell... ************* Last but not least, because he is my main man right now.

I spent last night fretting, hoping and praying that Paxton would tolerate the aggressive approach doctors took all day yesterday in hopes of extubating him today and getting him off the ventilator that has been helping him for the last 8 days of his life. I am and have been prepared for setbacks, for bad news, for worst case scenario. Some may say this is a negative attitude, I like to call it cautious. I was given every worst case scenario for my son from the moment we found out he was sick. I prepared myself for those and knew that anything better than that was a gift. I have sobbed for him, laid on the floor in a puddle of angry tears wishing things were different for him. I have screamed how unfair this is, sobbed on my husbands chest for endless amounts of time. Wiped his tears just as he has wiped mine. I have begged and bargained with God to help our son. Yet, when I walk outside and feel the cool air hit my face and the sun shine warm on my body, I am reminded that Paxto...