RCNIC Ups and Downs

Today, as stated in my previous post, we received good news. Also, Gia was successfully extubated...also good! Carter A. got his immunizations today that made him a bit crabby, but over all he's good. Carter M. was reintubated the other day, not great, but he's stable. Then, days ago I mentioned that we had 2 new CDH babies, well the new little boy, at 8 days old, passed away this evening. It was so incredibly sad to see his nurse walking in the hall with his tiny little body wrapped in blankets with a security escort! (I was walking Bev out when they came down the hall) I know I have said this before (daily), but I absolutely HATE CDH. What an unfair condition for these little babies to have. This little guy did have to be placed on ECMO and we have no doubt that he fought hard! I only briefly met his parents, but they are great people and our condolences go out to them. Unfortunately, he makes number 3 who lost their CDH battle out of the 8 CDH babies that have been here since Jaime was born.
They say that deaths come in three (Ed McMahon, Farrah Fawcett, Michael Jackson), the RCNIC is no different. Jaime's pod neighbor passed away yesterday morning, then Gia's podmate passed away this afternoon, followed by the CDH little guy mentioned above. Being in the RCNIC for so long truly puts things in perspective. Life is WAY to short for pettiness. If I've learned anything from all of this, I've learned that!

I can remember years ago working at the nursing home hating when the residents passed away and going to so many funerals. Then, I worked in the ER and saw too many middle aged people pass. Now, we have spent 73 days in the NICU watching babies come and go. I can not even begin to describe what that feels like. I wish that no one would ever have to go through this! It's not easy constantly walking on eggshells not knowing what you're going to walk in to. Fortunately, we have amazing NICU staff to help make that walk easier for us each day.

We are just so incredibly grateful for every day we have Jaime. I know that our other CDH friends feel the same way. Thinking back to 6 months ago when we received our diagnosis seems like an eternity to me. No one would have EVER imagined Jaime would progress like this. It's truly amazing to us. This whole journey seems so surreal!

We would like to extend our deepest sympathy to all of the families mentioned above who have lost their little ones this week. Please pray for them, as they need all of the strength they can get during this very difficult time.

Thank you,
Sheryl