There’s a rhythm that has emerged in the goings on here on the PICU. Typically they try new things during the day – vent settings, new meds and the like – and then spend the night letting Julia rest and regroup, making only small adjustments in a “steady as she goes” attitude. So the rhythm we are going to try on the blog is an morning update on the night’s progress and the plans the team makes during morning rounds, followed by a short evening update reviewing the days progress; peppered, of course, with my prattling and unsolicited observations!
The great news is that our little girl did very well overnight! I won’t go into the medical details, but her “numbers” look very good; so good that the team set a goal of weaning her off the ventilator and, if everything goes well, removing her breathing tube sometime this afternoon or evening. She has been taken off of the sedative because there’s a tendency for laziness on the part of the baby to rely too much on the ventilator, but Julia was active and even a little squirmy this morning when we arrived, requiring Jocelyn to use her super mama powers to relax her (along with a stiff dose of morphine to dull the discomfort). Today, if we stay on this plan, will be the toughest and the most necessary. Getting her off the vent is the first big step toward recovery, but the way that will happen remains to be seen. Suffice it to say there are a few options.
Dr. Walters came in later and started adjusting Julia’s pacemaker as well. Getting her off the vent is priority one, followed closely by encouraging her heart to find its own sustainable rhythm. We’re not going to tax her too much today, but he reduced the settings a bit and will be monitoring throughout the day.
We are all walking a fine line of having desires for Julia’s progress, but not expectations. She and God are firmly in the driver’s seat and will be telling us in their own time about what the way forward is. There’s even a strange reverence on the part of the medical team for the dance we are entering into. It is a willingness to live in the tension between the active and passive not unlike our walk with the Infinite Good. It’s a willingness to live in the “middle voice” and responding to one another instead of actively driving.
You’ll be hearing more in the evening. I gotta go be with my girl! Thanks for the prayers and concern.
7 Responses
Comon Giulia, u Are olmost there!!!!!!
Give us another 72 h of good news!!!!
We kno u can do it!!!!!
Love
An italian aunt.
I like the “rhythm we are going to try on the blog” plan, but the last thing you need is to worry about all of us out here, your friends and family, worrying about Julia and you all if you can’t get around to posting twice a day. So, speaking for all the Julia/Joce/Chris fans and supporters, promise to give yourself a break from photos/writing for us (though I know this forum can also be therapeutic for you, and we hang on every blog post!) whenever you need to, and we agree to wait faithfully until you can get back to us.
Signed with love,
A Watchful Older Sister
P.S. Julia is looking right at Joce above, correct? Awesome!
gut wrenching…praising God she is doing so well, and moved to tears by the progress still needed. She is so beautiful, so vulnerable, and so very His. Stay strong. We will not stop praying.
Chris,
I was “directed” to your blog by Jocelyn on the Babycenter Heart board, just before Julia’s surgery. I just wanted to tell you what an amazing keepsake your blog will be for your amazing daughter. Having walked many of the same steps you are now walking, in the same halls you are walking them, your blog brings tears to my eyes, and prayers to my heart for Julia and her recovery.
From a perfect stranger,
Karen
Hi! i am glad that Julia is doing so well! I know this is a tough road to walk, something I wouldn’t wish on my worst enemy, but these babies are SO strong. And Julia is one of the strongest!
Jocelyn, I think I know you from Babycenter too, but I didn’t make the connection until now (SN is MaggieMae06). Anyway, my son was at CHM for surgery in ’09 and I think they’ve managed to make the x-ray process even more painful since his surgery. 🙁 Hopefully that is the last time she has to endure that procedure.
Keeping you all close in thought and prayer during this time.
~Mary
Chris & Jocelyn,
Just saw your message on facebook and read your blog. We had heard you had a baby girl but didn’t know she was having problems. The pictures are just precious! She is such a cutie!! So glad for the encouraging progress!! We will pray for Julia and you both as you go through this challenging time. We pray she is home with you soon!!
praise God, julia is blessed child, she is special for God ,because every second He looks her.she get very speed recovery.we belive our God is Wondurfull God. In His name Julia fully healed soonly. CEM family continue prayers for sweety julia’s health.
It’s a heart touching blog. thanking you.