Neonatal Parent-to-Parent Partnership: Helen DeVos Children's Hospital

So Jim and I are in the process of completing our Parent to Parent training to support new parents of preemies at the NICU at DeVos hospital.

I am not sure how Jim feels about it but I know that it has been very emotional and enlightening for me. I have learned so much about other preemies and what other families go through while they are there and after. We are very blessed with Jed's outcome and outlook, but mostly we are blessed by all the family and friends that support us.

I find myself dwelling on the what ifs of Jed's long term prognosis and my unemployed status too much. It is good for me to find an outlet for my insane amount of energy and intensity. Cooking, cleaning and gardening apparently aren't enough for me. And Jed, and biking and walking and scheduling play dates... oh and Jim thinks I need to start writing a book.

Since I am still mulling that over, (and the suggestion kept me up until 1am last night by the way), I decided to start researching memoirs and other blogs. The blog I follow right now sometimes is: http://tricuspid.wordpress.com.  It is called "Adventures of a Funky Heart!" and it is an adult CHD survivor who tells stories of surviving 3 heart surgeries and growing up in rural South Carolina. Steve is great about sharing research on CHD advancements and debunking myths.

I just read an entry about Heart Moms that made me cry. It also made me feel good about fighting for my little Heart Warrior. Jed still has surgeries ahead of him but I know he will be fine. He has to be fine. But I wait for that 1st red flag to go up that it's time for a new Pulmonary Valve. I really don't need to worry until he is 3 to 15 years old though.. really, I don't... RIGHT!

The good news is the boy is walking and actually has been down for a nap for pushing 2 hours, which, in case you didn't know, is a miracle in and of itself. He's like his Mama, doesn't want to miss anything.... 

We are prepping for the March for Babies walk on April 24th and am getting nervous that we won't collect much money but thanks to Thea Van Vander Van... we are over the $200 mark. I am hoping for $400 and have recruited Jim and Courtney to hit up their friends for some dimes... 

Next year I will have to craft a tear jerker letter at Christmas to rally the cash. March of Dimes does some amazing work and without them Jed would not have made it though his 1st weekend of life. So I am very grateful for all that they do...

I am also looking into starting a support group for Mended Little Hearts in the Grand Rapids area. It is a parent group for survivors of CHD surgery. And they have nothing like it here that I know of... so I will find my focus soon I beleive... or maybe I already have?


Lots of Love,

Jana