Friday, July 25, 2008

A Cool kid?

Another big thank you to all of you who have written and emailed and commented to us over the last 30 hours or so. Your thoughts have really kept us going.

An update: Amanda is feeling much better - a sponge bath and some Vicodin can work wonders, I'm told, but she's still in obvious pain. The say we'll be discharged in the normal 48 hours, so we'll head home Sunday morning if all goes well. She's also on a liquid diet, which sucks, but she just inhaled her lunch of broth, tea, milk, grape juice, and "strawberry health shake," which smelled as good as it sounds.

Although we will go home Sunday, Jude won't. His type of trauma and the fact that he starting exhibiting signs of seizures made him an ideal candidate for cooling blanket therapy, a new treatment in which babies under six hours old with oxygen-deprived brains are cooled to mild controlled hypothermia over the course of three days in order to slow the brain's metabolism and possibly halt further damage to brain cells. It's a well-received treatment from my cursory research, with no reported adverse effects, and the Cerebral Palsy society cited that it can defend against 16-27% of potential brain damage. Also, the RN assigned to Jude participated in the original two clinical trials of the treatment, so she knows what she's doing with it.

Of course, we don't know for sure that there's anything wrong yet. The best-case scenario, according to the NICU head, is that there was some trauma, but no lasting damage, and that he'll be fully functional (a story that some of you have shared with us, and, believe me, inspired us with). The worst-case scenario involves possible CP, Mental retardation, blindness, deafness, and other assorted neurological conditions.

Right now, he's listed as being "Guarded, Stable," which means he's not getting any worse, and they really don't know what's wrong, if anything at all. The scary part is that he was having mild seizure-like symptoms (without the telltale BP drop).

Amanda and I know, though, that whatever Jude does or doesn't have, we'll work with it, love him, and give him everything we can. We're a great team, and I feel like we're up to any challenge as parents.

Update: He turned to face Amanda when he heard her voice. Awesome. Maybe no deafness?

7 comments:

Christina said...

So good to hear that you both got to see him! Everyone here (including my entire family) is thinking about you and keeping you all in their prayers.

Love you!
Chrissy

Lucy said...

I know you have a lot on your plate right now, but if Amanda is thinking of pumping, you may want to set up the rental today. Most of the places that rent pumps are small, independent drugstores, and most of them are not open on Sundays. Your insurance may cover it, though they may require it be "prescribed".

If you want to buy a pump, I have heard nothing but raves about Medela.

If you are not breastfeeding, no worries, I have one who I didn't, and he turned out great, so you won't get any guff from me. :)

Jon said...

She's meeting with the lac consultant right now! She'll be pumping since Jude can't eat for a few days, but we're on it! We have the Medela, and got a great price from the Hospital on it.

Thanks for the advice!

Anonymous said...

I know that no matter what, you all will be more than capable parents. You are both extraordinary people and Jude is lucky to have you. Sending you lots of love from Kentucky.

Love,
Tara

Joan said...

Brendan's mom is sending all the "wanna be a gramma some day" love and prayers to Little Jude and Amanda and Jon as well. He has a very powerful saint name.
Love, Joan

Catherine said...

You're brave. Love to you both. I've been praying for you all. Jude is so lucky to have you. Keep us posted as you feel able.
love love.
catherine

Unknown said...

We are still praying for you guys....keep your faith! God can heal!

I just want to hug you, Jon Michael, so badly! My heart hurts that you and Amanda are having to face this. You are so right, though, in your blog that God will give you the strength to be the parents that Jude needs you to be - whatever that may include. I am here for you if you need me.

Tell Amanda if she needs to talk or gets discouraged with nursing, to call....it may be very frustrating at first - especially with your situation, but stick to it if she can :)

Love you both,
Amanda