Sorry for the lack of posts...but its been nutz...we wake up in the A.M. and kiss our Lily goodbye and head off to CHOP. The hours fly by and before we know it, it's time to go back home to our Lily J. Its bitter sweet both ways...
So lets recap the past day or two....
Klara: she has been poked, prodded, and pricked...very sad, but necessary. She had the worlds best neurologist and geneticist (thank you charlie) at her bedside and they have begun their testing. It will take 2 weeks or so for any definitive results...so now we wait. In general, her O2 Sat has dropped a bit and some apnic events have begun. The Dr.s seem to relate these events to her imiturity so lets hop that is true. They have increased her oxygen flow and saturation just to keep her comfy...they dont want her working hard to have to breathe.
Its scarey NOT to have any answers, and at the same time to be so afraid of the answers...so i think this has to be the worst time...where our minds run rampid hoping for the best, but thinking of the worst.
On other notes, Lily J has been keeping Grandma Bev on her toes around our house. And her friends took her to an indoor play area today (more to give grandma a break..lol) We are hoping to take Lily Monster to see her little sister tommorow (saturday) but the snow may effect that (great luck we have). So maybe Sunday.
Mom and Dad are tired, look terrible but are doing our best to keep it together. The best medicine we have is our Lily when we get home. Again...Bitter Sweet...
Im going to throw this out there again...WE CANNOT BE THANKFUL ENOUGH FOR ALL THE SUPPORT OF FRIENDS, FAMILY AND EVEN NEIGHBORS. We could not go through something like is w/o everyones support and help. So thank you again. People we dont even know (yet) are offering to help...I could never even have imagined this...Even a vendor of mine...SO THANK YOU EVERYONE.
I will always try to post everyday as i know alot of you are relying on this blog..so i will do better...I promise...now we wait, so ill try to post everyday while bedside...
run grandma bev ragged niecey!! just kidding... kinda;) all of you are in my thoughts and prayers, my peers and patients in washington have put sweet klara on their prayer lists and ask about all of you every day! keep your chins up and tell lily to take good care of her baby sister! i love you all! auntie
ReplyDeleteI am one of Alissa's Washington friends. We are keeping little Klara and your family in our thoughts and prayers. We look forward to the day she gets to come home.
ReplyDeleteHI...It is Stacey DiMeo (Buck). I saw Emily over the summer and she was as sweet and adorable as always!! All of my thoughts and prayers are with you guys! My hearts go out to you! One of my best friends is a NICU nurse at CHOP and is working tomorrow (Sunday) Melissa Cassella. If you need anything ask for her!
ReplyDelete