Tuesday, August 5, 2008

Simon's Gifts

Another day, so much love and baby steps for Simon.
Jaime and I are home once again in the hopes of getting some solid rest before Simon has his ventilator tube taken out (extubated). The loose plan right now is for extubation sometime between 4 and 7am early tomorrow morning.
Today has been all about offerings. Simon has been offering us baby steps in recovery in that he has started initiating breaths on his own, been able to be stepped down on some of his medication and has been maintaining a strong and consistent heart rate for most of the day. His ventilator is working on providing only 13 breaths per minute down from 22 and then 18 today and even though the ventilator number is at 13 the breaths are staying around the mid 20's which means that Simon is doing the rest.
He was able to get some breastmilk through his feeding tube and has already pooped his pants twice. Little shitter :-)
The catheter was taken out if his little penis and one IV was able to be removed from his left foot.
Given all this there is a good chance that they will try an extubation but we were also told that it's not unusual for baby's to need to be re-intubated three to four times.
After a wonderful breakfast of CHO cafeteria food Jaime and I both agreed that we can begin to sit in the "complete faith" place, so for right now, tomorrow is extubation day and we only move forward, however slowly, from here.
Jaime and I are slowly feeling like ourselves (although forever changed) with familiar ways of being coming back into our days. We're still feeling our hearts wrenched but we're also getting back to familiar ways of being (with each other, friends and family, Simon's nurses and doctors, and even the security guard who checks us out of the parking garage each day). So along with the heart wrenching there's some joy, some humor, some sassiness, and lots of talk about food. We even had a nurse share some of her borscht with us tonight because we've made a fabulous connection with her.
We forgot to mention that yesterday Simon got a powerful several hour healing from Vicki Noble, a dear friend and colleague of Dianne, Jaime's mom. Vicki was able to settle just about everyone within a 10 foot radius around her but more importantly Simon responded in no uncertain terms with a strong pulse right within his optimal range and several hours of solid rest.
For the most part he's continued that today and the gifts just keep coming.
Simon got some wonderful cards with hearts on them, a homemade hat, a dream catcher with hawk and eagle feathers (from a drum circle that sings for him every Monday and Tuesday), we switched out his snugglies with two new ones that Jaime and I kept in our shirts all day so that they'd be strong with Mommy smells, some wonderful fresh lavender, and of course many many emails and messages from the Army of Simon lovers that are out there.
Right now there seem to be thousands of people holding him in their hearts with so many of you sharing his name and situation with your extended communities, houses of faith, and wonderful families. The love is felt. It truly is amazing.
Thank you Thank you Thank you.
More later.

6 comments:

Peggy said...

Indeed, I've shared news of Shimmy with my church group and they're praying mightily for all of you. Dr Vichinsky (Diane's hubby) should be checking in on you folks too. Love to you all. Peggy (and Pepper).

Kristine said...

Keep the poops coming, Simon!!

Yeah for baby steps...of all kinds.

Love you, Kris

karen said...

zuzu says I love you simon...mom says you are like my cousin in the picture on our fridge...we're going to make a picture for you. Mom says aunties L&J are superheroes though they don't feel like superheroes.

Anonymous said...

I've been talking to Simon, and yesterday I got the wonder and excitement from him at being in his body. He was so interested in what was going on around him that he at first couldn't focus on "talking". He was not experiencing pain, or at least not at that moment, and he is very much with the folks around him.
Love,
Jen

Anonymous said...

Good for you both to take care of yourselves in this incredibly stressful time. Simon's mommies are so very smart! We are thinking of him, and when he is a bigger boy, River will share all of his knowledge about trucks with Simon! (There is quite a bit to know.)

Sending love and healing, Claire xo

winter said...

Shimmy Shimmy Coco Bop.

Holding you all in my thoughts and sending tons of love and planning a visit.
Love,
Winter