New Machines

Jane might get hooked up to a different respirator machine, called a (I forgot, oops). This new machine changes the breathing rhythm and pressure, and will hopefully help improve her “blood-gas” — remember I taught you yesterday about this?

As I’m writing this, we just found out Little Jane has a little blood clot. Hematologist is coming in 40 minutes to make a plan. In the meatime, she’s going to get an ultrasound of her brain to see if there’s any clotting there.

Today’s been anything but boring.

Packing Up

We’re all packed up, waiting for the stanford air ambulance. They’re en route to John wayne airport from Sacramento.
Supposedly this small baby surgeon at Stanford (Packard Children’s Hospital) is worldly recognized in this specialty surgery. Babies from around the country come here if they have this defect. We were told the success rate is 60/40.

A Safe Arrival

Jane arrived to Lucille Packard Childrens Hospital at Stanford last night around 11pm. We waited anxiously to greet her. After the team got her all settled we talked to Dr. Shin, one of the cardiologists who told us they have her scheduled for surgery on Tuesday morning. They are going to review her case this morning, look at her heart ultrasounds, and come up with a plan.

We wait…just a little longer…

Stanford

Elisabeth and I left from John Wayne Airport for Stanford at 740pm and arrived at the hospital at about 10pm after dropping off our luggage at Bill & Beth’s, a hospitable family that live about a mile from the hospital.

It was obviously hard leaving Jane; I begged for atleast the mommy to get on the medical plane, but they said they just can’t accommodate more weight — I didn’t know Elisabeth weighs that much, hmm.

We waited til about 11pm, while the new team got Jane’s equipment ready for when she arrived, to hook her up quickly.

We were told that we’d be up here approx 2-3 months, but that’s no promise; it could be longer, could be shorter. Nonetheless, we’re looking today and tomorrow for a place to stay long-term.

Tuesday is the scheduled first surgery. The team is going over the xrays and echos to formulate a gameplan.

I thought about it, and I have 4 goals while up here in Stanford:
1) Jane’s health to improve
2) Elisabeth to have comfortable home
3) work for me
4) Phil’z coffee (best I’ve ever had)

About an hour ago, a complete stranger brought me mexican food and $200. She’s a friend of a friend of a friend. I can’t believe the graciousness we’re receiving. This is just an example of the helpful/heartful people trying to lighten our load. Super-sized thank you.

A few of you have asked for an address for us… Our social worker is looking into accomodations for us while we wait for Ronnie Mac to open up. As soon as that is finalized I will post a mailing address.

In God’s Hands

This morning we laid Jane in the hands of God and the surgical team. They took her to the OR about 7:45am. The procedure should last about 6 hours. We will get updates along the way. The surgeon, Dr. Retty, will be repairing 3 parts of the heart: 1) closing off the pulmonary valve, 2) placing a shunt to re-direct blood flow to the lungs, and 3) sewing up the right atrium to make it smaller to allow the lungs to develop a bit more. While he is in her chest if he sees anything else worth repairing he will do any additional work. Dr. Retty told us that this is the first of three surgeries that Jane will need. This first surgery is the most critical and high risk, BUT when she gets through it the next two will be pretty solid, according the Dr. Retty. One day at a time, though.

So, now we wait for our little girl…

by the numbers

13……………Jane’s age (days)
1012+……..visitors on Jane’s website since birth (checked Sunday, day 11)
34,000+…..total visits on Jane’s website since birth

..

Everyone, I’m so so very extremely fortunate to experience the love and support you’ve shown us. This is the most difficult time I can imagine, more pain I can imagine.

I must say for the first time since Elisabeth went in for C-Section, I’m at ease, I’ve been a huge mess. But it was like a light switch turned on yesterday evening. I can only say that God’s with us.

Jane will be out of surgery around 2-4pm.