I have come across a blog about a newborn named Clara who was just born with CDH. I am now obsessed with following it and nervously waiting for an update. As of last night, they were ready to put her on ECMO. I'm praying for Clara and her family and hoping they have the same joyous outcome that we have had with Ramsey! Please offer your support to them at thehardylife.blogspot.com Now, I understand what it feels like to be in your shoes...I keep checking for an update and praying for baby Clara. At the same time, I can completely relate to Clara's parents. They have fear and uncertainty, and like us, they are extremely touched by the amount of support they have received from friends and strangers.
Ramsey is home now, but a certain level of fear continues. For a 24 hour period, starting Wednesday night, Ramsey's alarm started sounding off and on. This was the first time it happened since we came home two weeks ago. Our instinct told us that it was a false alarm. The hospital said to have the monitor checked since he continued to have good color, a good disposition, and he was still eating well. Although he seemed OK, the whole experience was a bit unnerving. I couldn't help but wonder, what if our instincts were wrong? The monitor was just downloaded today and we are waiting to hear what the doctor thinks about the results. The nurse came this morning and she agreed that he looks great and everything sounded good. I hope it was in fact a faulty monitor and that the doctor will be able to tell that after seeing the results.