Thursday, June 3, 2010

Round Three, or is it Four, wait, maybe it is Five,, ooh who knows

Terrified/stressed/nervous,,,,, to explain my feelings i use this analogy,,, have you ever played a competitive sport?? Have you ever made it to a final in that sport? Do you know the "game day jitters"? Ok, mulitply that by 1,000, and you have me,, 24/7....
Asher's Echo was not what we were expecting, really, he looks great, gaining weight, echo shows heart function is down...
So he has two issues right now, collaterals ( veins going in a big circle heading to no particular place) those are taking blood, and making the heart make/pump more blood,,,, also narrow aortic arch ( which was enlarged/made during 1st open heart) due to scar tissue more then likely.
The hope is that the collaterals/aortic arch are causing the heart to work harder, thus causing lower funtions, the right ventricle ( his only) is getting tired of supplying these crap collaterals for no reason.
The SMALL BUT SCARY possibility is that the collaterals, and aortic arch are not causing the low function that it is in itself his heart slowly getting tired of using 1/2 to do the work that a whole heart would that case things could get ugly.
Also the cath lab is where this surgical proceedure is going down,, it is a good thing, no open heart,,however they need to A. get to his heart B. make the balloon things work..... both especialy getting to the heart can be tricky since he has sooooo many clots in the areas that the cath usually gains entry.
Sooooo with all of those risks, and as if I were not enlightned to the suckiness of this defect the word Transplant was brought up...
My mind went right to that word, and FREAKED OUT, big time.
I also have a lot of work to do, not just being a mom, but coordinating this thing,, asher has serious health issue which include strokes,,, clots, and he has a lineup of docs,,, lately been very concerned with staying at our hospital, and keeping these doctors informed, so that if things head south they can nip it in the bud........Do I like this job, NOPE, but hey it is better then mistakes, or confusion,.
I am not looking forward to being admitted, to being taken from my home, to have Asher in a strange crib, strange room, strange dirt, strange smells, sounds, lights you name it,,,,again I enjoy my privacy, and def dont get that in a ICU.
I tend not to dwell on the INCONVIENANCE as my thoughts are swaying toward survival,, with both baby brain, and limbs intact,,, i say this because both were almost lost last surgery.
We had a small break, went home, revcovered, licked our wounds from what we saw, heard, and felt,,, Now going back seems harder, we got a taste of peace, love, comfort, and the beautiful sight of our son, not screaming, struggling, and fighting to survive,, this admission may be easy, this surgery may be a piece of cake, or it could really be just the opposite, we are used to the opposite, and that is where the fear comes from,,, it is not the unknown that we fear, it is what we already KNOW,,, it haunts us,,.

I walk around, go to therapy, pick up dinner, clean, play with asher, hug asher,, all the while mentally GEARING up, prepping myself, working on my "game face",, brushing up on my anatomy of the heart, going through the details of his medical history in my mind, preparing for yet another battle, gathering for a big one, and praying for a small one.
I wold looooove to dig a trench and hide in it,,, but i promised Asher before he was even born,, I am with him till the end, this Mama is not going anywhere, i am scared out of my mind and miserable just knowing that he will hurt, but i made a promise, and no matter what the outcome this is a War that we are fighting till the end TOGETHER,...
God has not left us,, he has not led us this far to take his foot of the brake, and say "see ya " not a chance,, so we march on,,, hand in hand, we will go forward scared, but willing to do what it takes for Asher,, all the while knowing he is important both in heaven and on earth.


  1. I firmly believe God has not gotten Asher thus far to change things now. Keep the faith and believe in his purpose here. Remember all that he has taught so many people on his journey thus far. He isn't done yet. It's ok to take a moment and cry. It's ok to be scared. Don't bottle it up, but know in the end that Asher has God's hand on him and when you think of where he has been you begin to realize he far far more to go. Love you girl! Give Chublet kisses from Auntie Jenn and his heart brother ; ) Keep me updated please!

  2. We have learned to count each and every blessing GOd has given us. +Ever so small or large. I know that He is there with you three. YOu said Marching forward hand in had Remember God has his hands wrapped arounnd yours. We will be praying!

  3. We can't pray enough for little Chublet and you and your husband!! You are all very strong and Asher has proven to be the strongest little baby boy!!