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

Jed is Drug Free

Apparently, I haven't really used the blog like I thought I would but maybe someday I will.

Jed is drug free. He was weened from his last heart medicine last week.
He had his 6 month appointment with Dr. Lacina, his Cardiologist. Overall, Jed is doing well.

There is some back flow in his repaired pulmonary valve. Which I understand to mean that some oxygenated blood is flowing back into his heart. Not enough to be worried about at this point but they will continue to watch it over the next year.

He will need to have a pulmonary in 3 to 15 years. I am all about him having it sooner than later so he won't remember so much but we will do what needs to be done when the time comes.

He is starting to show some signs that he is a "heart baby." He starts to breath fast when he gets too excited. It only lasts a minute or two and at first I thought it was a normal baby thing. But I have sinse learned that it is his heart trying to keep up with him.

Overall, Jed is a normal, happy teething cutie who loves to play and snuggle. He is not walking yet because he is convinced that crawling will get him there fastest.

He loves his babysitter, Jessie Carr. And we are hoping I find a full time job soon so I can stop worrying so much about money and Jed can play with kids his own age 2 days a week. I have found a couple of day care providers that I think Jed would love. Jessie is currently watching Jed on Tuesdays and Thursdays and will take him one more day if I find full time work.

We are blessed and I need to be more grateful for the blessings we have been given. I am so proud of our little family and the life we have together is so very important to me.

We are spending a lot of time praying for our other heart baby friends Samantha P. ease and Henry Doyle. Both babies were born with Hypoplastic Left Heart Syndrome and have to undergo 3 surgeries to correct their hearts. Both babies are doing well and we continue to pray for their good health and the continual research that goes into Congenital Heart Defects at MOTT and around the work.

Lots of Love,

J3

Amazing

I have been at this Mom thing about a year now and wonder, "am I a good Mom?" Lots of people share opinions, and tips on Motherhood. Some I take to heart and store the advice for future reference.
Advice I like is the recommendation to take Jed out on lots of adventures and don't be afraid of new places and things.And always giving myself the "out" clause gives me the strength to throw on that backpacked baby and go.
Experiencing his first sled ride was amazing. The look on his face was spiritually uplifting. Jed's face lit up with joy, Hs cheeks turn bright red. His nose glows like Rudolf. His neon blue eyes widen, and blink, just as a slow smile creeps over his face. 6 teeth shine out at me. Amazing, motherhood. Simply amazing.
Advice I hate, or maybe it is comments I hate, are from the Moms that make motherhood sound like such a burden. "Oh, you want him to never walk, once he walks it is over." What's over? The backaches? Trips to the Chiropractor?
I want him to grow, because every step he takes, literally and figuratively, is Amazing. Sometimes I wish I had the grace to keep my mouth shut. I think I do when the negative, bitter Mom shares and tries to commiserate. hopefully I at least have the grace to change the subject. I think I fail at that though, because I am so overjoyed to be Jed's mom, that I annoy people.
I am okay with that.

Happy New Year.