Saturday, March 17, 2012

Busy Getting Stronger...

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 diagrams telling us what three surgeries this "fetus" would require to live and here we are.  Can I get a Whoot! Whoot!  2 1/2 years later!  Oh dear lord!!!! So many emotions! SO much to sort through still!  So much to process!  It is all still marinating and I am letting it. I am not trying to work through it. Not rushing it. This will take some time and a lot of writing. This is where the book will come in.  This is why I don't think I could begin because I never knew the end.  I can start now.  I don't even have words, and that is saying something, to tell you the way that my heart feels write now.  To express to you all as I sit here on old reliable, you know that ole' vinyl couch here at ACH, looking across at my sleeping boy post op, alive and doing well, how I feel.  This has been 2 1/2 years in the making.  2 1/2 years of living in fear. Of never knowing how this would play out. Of never knowing the final chapter.  I still don't know how long these surgeries will ultimately last for him, but that's not what we are focusing on. We are focusing on the endless hurdles we have bulldozed over and in their wake is this:

So while I haven't been able to update as much as I would like and you know all of this has left me with much to say, but my boy comes first so my endless chatter will have to wait.


In the meantime we're busy eating. French fries of course, a West favorite all around.


We're busy walking. Mind you, this boy walked 24 hours post op as shown below in the video. I would like all of you to redefine your definition of tough because I sure have.

mommy pride at its best

We're busy loving and being grateful that we can

And in the words of Sara Evans:
We're Busy Getting Stronger....

Love and hugs~

For the heart moms out there:
Fontan surgery took 4 hours:
He came out with a central line, art line, ra line, 3 chest tubes (our surgeon always puts piggytails in as a precaution so he doesn't have to go back in after, I am so down with this thinking) pacing wires, foley cath, various iv's. He was sedated throughout the night the first night and into the next morning. Mid day next day, just 24 hours post op, central and art lines were pulled. Foley was pulled. Milrinone dc'd. He was allowed to drink.  They wanted him to walk to allow the fluid to drain down and out his chest tubes and while painful, my little tough guy walked about 10 step further out the door than most do the first time. He continues to blow my mind hour by hour with his resilience and strength. Today, his chest x-ray shows he is still really wet so chest tubes will remain and we are most likely going to add another diuretic to his already q 6 lasix in an effort to get all that fluid off. Possibly pull big chest tube and leave piggytails...still unsure on that at this point due to amount of drainage still coming off.  We want none.

Check out his pink foot!  We no longer have a "blue baby" anymore!!!!!!
To an HLHS parent this is EPIC!

My other two angels:

They are amazing and being such big boys about my being gone. They are explaining to everyone where I am and what is happening to their baby brother. "How his heart is getting fixed" and "how he won't hurt anymore".  My heart physically hurts with missing them, but I know one day they will understand it all!


Anonymous said...

What a strong boy you have (as you know of course) and such a strong mom you are. So glad to hear everything went well. He is so lucky to have such a wonderful family to help him through this. In my eyes he's a super hero!

Amy Bennett said...

Oh, how I freaking LOVE this update! LOVE LOVE LOVE! He looks amazing - and that pink foot, oh that is fantastic. I have been waiting for the pink toes picture! (Cannot wait till we have one of our own!) And thank you for the stats at the end - that's totally what I was wanting to know about! Go love on your boy - and tell him is is absolutely amazing!!!

Anonymous said...

AMAZING news!!! Been stalking your blog n loved hearing these news!
Your boy is amazing!
So glad all went to plan!

Now only to recover n get home.

Elis xx

Suzanne said...

WOOT WOOT!!! Way to go Pax~Man! Continuing to pray for you here on Freedom Hollow Farm in middle TN.

You stinkin' rock big guy!! So does your mommy and daddy and big brothers!

Anonymous said...

What a tough guy...amazing in all ways! What a journey. Strength to Paxton and ur family to continue healing!

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