Tuesday, August 17, 2010

Katy Update

Ok, I know I owe you an update of our break from reality…and it was a wonderful break, and I can’t wait to relive it with you when I blog it. ( CAN’T WAIT) But, the truth is its going to take me a few days to catch up, upload and edit all the pictures. I am half way through that job.

Anyway…we came back to reality with a clinic appointment first thing this morning…ugh. With both kids in tow, which never makes for an easy day. On top of that our cardiologist Dr. Blume was on vacation so we saw Dr. Singh (another transplant doctor) We discussed our concerns, Katy’s lack of appetite, lethargic and so on and it was decided that, yes it is time to have a G tube placed. Much to my dismay. It’s time. Mike and I have always said we would do what was best for Katy… on Katy’s time table and we both believe it is time.

This was a very difficult decision for me. I have shared in the past my concerns regarding Katy and the G tube. Somehow I was more comfortable with her having open heart surgery, transplant etc. etc. then having a damn feeding tube.

I think for me and for a lot of mom’s…our job is to nourish our child. We nourish our sweet babies, when they are growing inside of us, that is our first real responsibility when we learn we are with child. Then when our sweet baby is born we anxiously await for our milk to come in…giving our babies that 1st but most important colostrums or in my case with Katy…pumping it and drawing it into syringes, to be saved for her.

We then nurse our babies, anxiously awaiting to see there numbers on the scale… scrutinizing their dirty diapers. Sending your husband out to 4 different stores to get the Fenugreek to increase your milk supply ( and makes you smell like maple syrup)

You video them the first time you introduce them to sweet potatoes, you squeal in delight when they have a Ritz cracker. You cut each and every teeny tiny grape piece, in an effort to keep them from choking.

You introduce them to new foods, you watch them grow and thrive.

As hard as Mike and I have tried we can’t do all things we are supposed to, to get Katy to grow and thrive. We have done them and more, and its just not enough. It breaks my heart to say that.

So we are making the decision to do what is best for Katy…. and at this time that means another surgery and placement of the G tube so that Katy can grow and thrive and be as healthy as possible for when her sparkly new heart arrives.

So much to my dismay…Katy came home with another NG tube today while we wait for a surgery date.

Also, as you may know I have connected with a heart family Gabriella & her mom. Gabriella was given the gift of a new heart 3 months ago, and is doing great. Her mom has recently connected with her donor family. Amazing story on her blog.


Kristi Vega said...

XOXO- I know how hard it was for you to make that decision, but I think your reasoning sounds right and you sound like you have come to some acceptance of it. It's not permanent, so just keep remembering that! Once she has a strong new heart, everything else will work and she will THRIVE! Such an amazing word we so desire to hear, huh?
Thrive. Yeah, Katy rocks.

Sarah said...

oh Amiee, how my heart is breaking for you! A G-tube doesn't reflect failure on your part to properly nourish your daughter... her heart just isn't working well enough to allow her body to be nourished the old fashioned way. A G-tube will give her body what it needs, the easiest way possible... placing the least strain on her little heart.
love to you & yours!

McKay Family said...

Oh Amiee...my thoughts and prayers are with you! I really don't have any words of wisdom...but know that you are amazing and strong and doing the right things at the right times!

SpoiledMama said...

You write so poetically after a battle I can only imagine and hope to never have to. I know that this is not what you were hoping for but I do hope it helps miss. katy. You are in my thoughts and prayers!

btw fenugreek really does make you smell like maple syrup it always made me want pancakes hahahaha