The Wild Wild Wests

Here little man is at 6 o clock in the morning in his hospital gown just about to get stuck over and over trying to get an i.v. in. Eventually they stopped sticking and decided to mask him down and then put one in. He was a trooper though. Cried and cried and as soon as Mama picked him up he stopped. Here he is in recovery.  You can see his color isn't great and he was a little irritable, but with some extra TLC he would fall asleep on our chests.  A very BIG thank you to "Nana Kimmie" for making the trip with us. Dave stayed home to take care of the older two boys so he could be gone from the company for Paxtons open heart surgery.  I never had to lift a finger. Kimmie just let me enjoy my man. She got me my diet cokes, food, let me sleep and loved on our baby boy as if he were her own and that above all is all we can ask for. We love you. Another thank you goes out to "Auntie Eyeween". Eileen is Jackson's mom and my bff. She traded cars with me and became ...

Paxton is out of surgery and resting in recovery. His heart cath went well. The doctor said there is some narrowing of his shunt, but nothing that is immediate. He feels his heart is strong enough to handle the next open heart surgery which will be in approximatly 2 to 3 weeks.  Recovery for the cath is much easier than for the open heart, obviously.  He is in and out of sleep and enjoying extras cuddles.  He has already eaten 5 ounces of formula and even cracked a smile or two.  Mostly he just enjoys looking at the oxygen monitor light wrapped around his thumb and talking to it in between naps.  The nurses are amazed at how big he is and keep telling us how amazing he looks for an HLHS baby.  I am proud and honored to be Paxton's mommy. Time and again he shows me what strength, courage and never giving up means.  Between now and his Glenn ( the next heart sx) we will continue to love him and pray that he sails through that just as he has sailed through everything thus far. Thank y...

We got here at 6 am and they checked us in. We went to pre op where they tried to get an i.v. in and they were unable to. So they took him back to surgery, masked him down and were able to get one in once he was under anesthesia.  They have started his cardiac cath and the wait will be approximately two hours.  I will update as soon as I am able! In the mean time any prayers for our little fighter are greatly appreciated! Thank you ALL for the amazing comments, they have lifted me up.

So in my last post earlier tonight I wrote about tomorrows surgery plans.  During the day, in the midst of the hustle and bustle of ekg's, echos, blood pressure checks and pre op instructions I am ok. I go into auto pilot. I listen to the risk of a stroke, cardiac arrest, blood clots, to much pressure to the lungs, death... While I hear it I don't grasp it until the sun sets, the world quiets and I am alone. Right now I am alone and I feel that at any moment I may vomit. My stomach is in knots so tight I can barely breathe.  I try to calm. I close my eyes to try and rest and all I see is my beautiful boy and fear paralyzes me.  Fear that the worst could happen to us. Why not? Life picks some of the most amazing people to do the most awful things to, so why not us... I cannot stop the tears.  I hate that he is oblivious to his day tomorrow and yet I love that just the same.  I want to take this all away from him and do it myself so he never has to feel another needle stick him, ...

We left around 9 am this morning. Arrived around noon and did not get back to the hotel until around 4. It's been a long day full of lots of pre op tests, of which I am thankful for so that we know he is able to handle the anesthesisa .  All of the tests came back "unchanged", blood pressures were good and oxygen saturation's were low, but acceptable.  They are thrilled beyond thrilled with his weight! Most HLHS babies that go for the Glenn are only able to get to 4.5 kilos and our boy is 7.5 kilos. I am so proud. I was so proud today as nurses pored over him and his doctors bragged about how well he is doing. It warmed my heart and lessened the punch of the risks that had to be thrown at me.  There are many things that can go wrong from a routine cath procedure when dealing with the heart.  He said around 1 in 500. I pray and pray and pray he is not that one.  Paxton is the first heart cath of the day. We will arrive around six to prep him and are able to stay w...

Well, the time has come to pack up my monkey and take him to Tampa for his cath to get an up close and personal look at his heart.  This will determine whether his heart is strong enough to make it through his next open heart surgery. They will put my little man under anesthesia and lead a camera up through his groin to see his beautiful half a heart.  I am nervous. I am scared.  While this is nothing compared to five hours of open heart surgery, it is   always something when you only have half a heart.   I don't know what to make of it all except to keep moving. I feel like it's all happening to fast.  I am ready. I am not ready. I don't want to sit there and listen to all the risks tomorrow, I know them.  I don't want to hand my baby over with zero control of the outcome. I don't want that feeling in the pit of my stomach while I sit and wait for word that he made it out of anesthesia. I am scared to hear the results of the cath.  I am scared of it all. It's ...

OH. MY. HEAVENS. It just doesn't get any better...