Monday, July 9, 2012

Be careful what you wish for...

We have known the date for sometime (July 6th =pre-op/July 9th=surgery), but somehow figured that if I didn't publish it, it wouldn't happen...that the extra time we had been given with her would naturally extend.

This time it is much harder. (This is the 4th surgery in less than 2 years) Shana began doing more research, we had been intentionally ignorant. The surgery itself has a tremendous risk factor of less than 1%.  It's the other that we didn't think about. The heart and lung machine-loss of oxygen-potential for strokes afterwards, and then the surgeon told us that she has about 20 years with her existing heart. It will have to be replaced.

So, here we are. It is happening now. No more wait. It's completely out of our hands, and quite frankly, it sucks. We chose the path and are walking it, and right now it sucks. I won't lie.

The six weeks leading up to this have been sweeter, the moments have been savored, the night time rituals counted down. I would often find myself just staring at her and watching, taking it in.  Listening to her voice. Trying to take the pictures with my mind. She and her sister played together yesterday and it was very sweet. Very fitting. Picture perfect.

Liking the TV setup & the phone "GIGI" keeps calling 

Wednesday, May 16, 2012

On Your Mark. Get Set. Reschedule.

Wren Adeline Tarver  |  Mother's Day 2012

We had held out hope that October of 2011 was going to be the date or a schedule of the date. It would be the Fall a year later. That's what we call it...the date. Looming. Hanging there. Ever present in the back of our minds. Like an annoying countdown that never quite counts all the way down.

I keep telling myself, it has to be done. Let's get past it. This wait. It will end.

Wren was held out of school for the Fall semester in preparartion. She would start in January. There was a plan. We could coordinate around the holidays. So ready to do this.

We went in for the catherization in October, and all seemed ready to go. It was a no go. The wait again. Too risky going into flu season in January. We will look at late Spring or early Summer.

Now here we are, today. The wait clock reset. The sleeplessness, the fear, the stress, the date is upon us. Shana brings Wren down the stairs and notices that Wren is scratching her neck. No big deal, we held her out of school, kept her clear of all outside contact for a week -as much as possible-what could go wrong?

Blood Pressure. Check.
We got to Texas Children's henceforth (TCH) reasonably quick- mental note- there are about 9 school zones between our house and the hospital. I read Wren some book about an old lady who eats things and then burps them up again. Odd, yet midly entertaining, for me anyways. I mean, I have to read them so I might as well enjoy them too.

Temperature. Check.
Beepy Finger Monitor. Check.
Weight. Check.

Checked in, and they checked her weight and temperature. Then we noticed the rash. It had spread and went across where the incision would be, and that was it. They called it.

The Wait. Double Check.

Please understand, we are glad they did. The circumstances need to be perfect, so we will wait. The date is moved again. The clock is reset. We will know the new date on Friday.

I spotted a mermaid later on in the day.