Friday, February 5, 2010

Who KNEW?

Ahhh....I can breathe again...


Who knew our journey down the road of CHDs would start the year out from here:





To Here:





To Here:





Back to Here:





And now Here:





But that is part of the problem! We didn't KNOW! We didn't know what CHDs really were when I was pregnant. We didn't know just how quickly things can change. SO because we didn't know, we are now helping others KNOW!


Our lives changed once those words "Your daughter has a heart defect and needs open heart surgery." Shock, disbelief, and fear struck our hearts! We Googled and WebMD'd AV transitional canal to see what we were really looking at in regards to Jordan's ticker. We were given a little more than a week to get prepared for that 1st surgery. However, I don't think ANYTHING can really get you ready to see your child out of surgery.

Little did we know that we were going to walk down that road again! December was another eye opener to us~

Since Jordan's 1st surgery, we've joined groups to not only support each other but also to help raise awareness of such a deadly disease. We have made some really great friends who we know we can lean on at any time. People who we have never met in person have become part of our Heart Family. We would do anything for them as they would do for us.

This past year I have joined forces to help raise awareness for CHDs! I want to help new and expecting parents to know what to ask for when it comes to prenatal testing. Some things are pretty inexpensive like a pulse ox test before you go home with your newborn. Others are what to ask when having an ultrasound done.


There are 40,000 babies born with a CHD every year. Too many of them will not see their first birthday because their parents didn't KNOW their child even had a CHD. Others will battle with weight and feeding issues like Jordan. CHD babies tend not eat until they are full. They eat until they are satisfied because they are just plain worn out. We don't think about it but could you suck on a bottle for 15-20 minutes when you are tired? It takes a lot of energy for a baby and if you don't have it, you don't do more than what you have to. This is why some kiddos end up on feeding tubes!


We found out about Jordan's CHD only when she was in congestive heart failure. Because her heart had to work harder, a murmur was thought to be heard. It was the swooshing of blood through her septum wall. Had we asked for further testing when her murmur was first heard at 1 day old, we may had KNOWN more. We didn't get Jordan's heart checked out because it was thought to be a ventricular murmur which many babies are born with. These tend to seal up on their own. Because we didn't KNOW, we didn't push.


This week, February 7-14th is Congenital Heart Defect Awareness Week! I, among others, wrote to Governor Culver for this proclamation in Iowa. It was GREAT to receive it on Christmas Eve. Be prepared to see more awareness brought on Facebook, blog sites, and outside events!



------------------

Update on Jordan~ Jordan is doing GREAT! She is still getting her IV treatments every 6 hours (that 2AM is KILLER) but we've talked to the Pharmacist who was able to knock down the dosing time from 1.5 hours to 45 minutes. She is still getting the same about of the antibiotic. She's just not getting as much saline with the dosing.


Jordan has joined what I call the "general population" at daycare since Jeremy went back to work on Thursday. We are also looking at starting preschool again on Monday. Because she will still have her PICC line and recovering from her surgery, she won't be able to get rough with the other kids yet, but she will at least be able to be with her friends again. I know she's been missing them!


How will our year end? Only the Man above knows! In our CHD world, I hope and pray Jordan is back to 100%, Jordan's Heart Friends stay healthy, and more money is spent on CHD research to find more ways to help other kiddos!




Until next time!
Tracey

2 comments:

Stefenie said...

Great post Tracey! Thanks for spreading awareness for CHD to help our kids and the ones we have yet to meet!

Glad that Jordan is doing well!

Stef, Ryan, Wyatt and Logan
www.whenlifehandsyouabrokenheart.blogspot.com

Kristine said...

I love that she's doing so well know. That was a wonderful post. I love how you told us her story in pictures. Lots of love. xoxo Kristine