Friday, May 14, 2010

Flashback

Ok, I know it's been way too long since I have posted. I find myself busier than usual for me and blogging has fallen down on the priority scale several notches. I'm more likely these days to post something on Facebook than write a blog post, mostly because it's quicker. Then I realized, that my blog post does not have to be long, well thought out or deeply poetic...I can just write.

So, here goes. I had a flashback this morning and not the kind my parents have about the 70s. This one was of me getting away from the NICU to do laundry at my cousin Lynda's house during our stay in Philly. Jaxson was probably 3 weeks old and I did not feel like doing his laundry in the hospital that day. As I loaded the washing machine, I remember thinking how cute his little clothes were, how amazing they smelled and how weird it was to be doing laundry at someone else's house, while my son lay in a NICU crib. We were not at our house, in our laundry room with a newborn upstairs.

In that moment I became pretty angry. All of the feelings about why me, why my son, why CDH just crashed down. I let myself get upset, which was something I didn't want to exhibit while at the hospital. I wanted to be the strong mommy, there for her son, not afraid. And then just as quickly as the anger had hit me, the feelings went away and I was fine. I folded the few onesies, button down jammies and blankets that we had for him and made the drive back to the NICU to be with Jaxson. I felt better, but still wanted to be home with my son.

That time seems so far away now. Jaxson will turn two next week and when I look at him today I see an amazingly healthy, boisterous, curious little boy growing in leaps in bounds right before my eyes. He says three words in a row now and he gets a little air when he jumps. And I'm not angry anymore about why me, why my son, why CDH. It's a journey we were handed for a reason. Reason being to share our story, to help other families dealing with CDH and to be the best parents we can be to Jaxson.

Welcome Jaxson's CDH Journey

Jaxson is a CDH survivor and this blog follows his story and our ongoing efforts to spread the word about CDH.

Jaxson was diagnosed with LCDH at our 20 week ultrasound. His stomach, intestines, spleen, apendix and left lobe of the liver had all herniated into his chest cavity. We were told his chances of survival were less than 50% and that he had an 80% chance of going on ECMO.

He was born at Hospital of the University of Pennsylvania and transported next door to CHOP on 5-19-08. He did not go on ECMO, had his repair on 5-23-08, came off the ventilator on 6-6-08, breathing on his own by 6-12-08 and was discharged after 37 days in the NICU.

He is our CDH rock star!