Wednesday, January 25, 2012

CDH... We're not alone!

When we got Parker's diagnosis, neither Mike nor I had ever heard of a Congenital Diaphragmatic Hernia. Upon further research, we now know that CDH is just as common as spina bifida. It has its own Awareness Day and Ribbon (March 31, turquoise). There is a HUGE community of people who have been through this and are more than willing to offer assistance, support, advice, etc.

I spend a LOT of time these days reading survivor blogs. I quickly realized that reading the WebMD and "Dr. Google" information was a scary, dark, yucky place to be. I instead Googled "CDH survivors" and have been much happier. Not only do these babies have happy endings and normal lives, they also help give me a good idea as to what Parker's early days will look like. Every CDH baby is different, but there are some common threads across ALL CDH stories-- NICU stays, GoreTex vs. pig tissue, re-herniation, ECMO, etc.

**side note-- I have realized in the past two weeks that, when talking to people about Parker's condition, I assume they have any idea what on earth I am talking about. I must realize that they do not compulsively read CDH blogs and therefore are not familiar with such things. I intend to have a FAQ post next week!**

I've made several new "imaginary friends" through the online CDH community. There are lots of webpages, forums, and whatnot dedicated to it. I lurked there for about a week before I swallowed my pride and introduced myself. So glad I did-- I'm not sure what I thought I was hiding from or why I was hesitant to put myself out there. All I have gotten, since joining these groups, has been promises of prayers, lots of advice, phone numbers, support, and shared joys/uncertainties from fellow expectant mommies.

Perhaps the most pleasant surprise I have received thus far came in the mail this week-- a huge box from an organization called CHERUBS. They are dedicated to CDH awareness, support, and research. I was completely blown away by the "welcome kit" they sent:

Included were a tote bag, receiving blanket, hand knit hat and booties, disposable camera, footprint molding kit, CDH bracelets, board books. chap stick (for little lips being stretched by a ventilator), travel size toiletries, hand sanitizer, a lock of hair holder, a journal, some cherub wings, and a 200 page booklet with useful information gathered from other parents. Every single item bears a sticker: "Donated in honor of" or "Donated in memory of" and a baby name.

Such a thoughtful gift-- not only the items but also the feeling of community and support they bring. We certainly are blessed to have so many people rallying around us, some of whom are complete strangers... well, not so much strangers anymore!

Off to see Dr. Sermons tomorrow. It seems my appointments with him, which are regular OB visits, are pretty uneventful these days. I'm hoping for no news is good news-- we are fast approaching the dreaded glucose test (GAG) and I have been having some fierce contractions (probably Braxton Hicks, but I am on edge these days). Will update later!

1 comment:

  1. I'm so glad that you decided to reach out to others, like me, who have been in your shoes. The support of other CDH families is such a blessing.

    Always here and always praying for you!
    Lisa, Mom to Ramsey