March 28, 2010 - Visiting Jayden

March 28, 2010 7:59 pm 

(From CaringBridge Page)

It's been two weeks since Jayden's passing and sometimes it still seems like yesterday & at other times it seems so long ago. 

Another baby, A.J., has lost his fight against CDH and another baby little Joshua hangs on by a tiny thread, his parents at the same decision point Alicia was this day just 2 weeks ago. 

This condition is a TERRIBLE one. Only one of the babies we know of born this month has had their surgery & are doing well, breathing on their own, learning to eat & looking forward to going home soon. We are so happy for them, yet look for answers why not Jayden? We hope that maybe his short time here will help to make others aware of CDH and how important it is to spread the word & support CHERUBS as they work towards research & awareness so that others may be saved from this sadness also.

Alicia & Grandma Shelly went up today to bring Jayden fresh flowers & add the pinwheel & balloon (it looks like the deer ate the roses Grandma Shelly brought up a week ago). Alicia is saving for a headstone but it will likely be summer before she will have enough funds to do it.

Alicia still has good days & bad. She still has several follow-up appointments with several specialists & the doctors are still trying to decide how to proceed with the blood thinners to prevent another embolism. Hopefully it will only be a couple more weeks on blood thinners.

Added a few more pictures. I am working on a video to put the pictures to music but as technical as I am on computers this is one area where I am a novice so it may be a bit before it is ready. I will post a link to it when it is ready.