Pre-op Update

First off let us all wish "Uncle" Scott a Happy 37th Birthday, May 1st! (I just didn't want to forget with surgery and stuff, so I thought I'd wish it to you now!)
Speaking of Uncle Scott, Jared and Jaime received a nice package from their cousins and Aunt Jess and Uncle Scott. Thanks guys, the presents were great! You can see Aunt Jess' creative artwork with Connor and Sophia, proudly hanging on Jaime's "crib." We love them!

Today (Thurs.) was quite a day for Jaime. He had a decent day with a few bumps in the road! Jaime decided to show off how he can change colors and turned blue several times today and even had to be bagged for a few of his color changing "episodes." This, of course is horrifying to Tom and I, but from what we hear, it is completely normal! Normal, HA! Really, Is ANYTHING "NORMAL" ABOUT ANY OF THIS?

As for Jaime's skin, some spots are looking much better, like his lips...they are "perfect" again. However, he did "break out" in other areas. He does look a little like a Mummy. The dermatologists are pretty certain that he does have EB, they even had an EB team here for consult. Jaime had so many drs. and nurses come see him today (Thurs), I lost track of them by early afternoon. It was getting very overwhelming...and then the blue episodes...AHHHHH!!!!
We left for a break and late lunch after rounds and a blue episode. We met up with Carrie and Jeremy, Carter's parents at the elevator. They are just as stressed as we are. We all went to the hospital cafeteria for lunch to "de-stress" a bit. It's so nice to have people who know what we're going through to talk to, especially when our boys are having roller coaster days. We're all hoping that the boys stable out really soon!

After lunch, Jaime was anointed. Gary, a wonderful Chaplain from the hospital, did the anointing, Jaime liked it. He even got a sea shell that held the anointing oil and a cross handkerchief to commemorate the sacrament. It was very nice. Gary said a beautiful blessing before anointing him. We're very glad that he was available for our little guy today!

So, after being at the hospital for 8+ hours, we came back "home" for dinner. We found a catered dinner with a baked potato bar awaiting us here at the house! It was YUMMY! After being home for an hour and half, we went back to see Jaime. He had another blue bagging episode and then calmed down again. We think that we may have even caught him smiling for a minute?!? We stayed up there for a few more hours and once we felt like he was comfy, we left. I must admit, after leaving the hospital, Tom and I did go to a local German bar for a drink, just one, but it was nice to sit outside and relax for a bit-even if we were the oldest people there considering it was on the U of C students' stomping grounds. LOL!

I just called Jaime's nurse, Ashley (who is FABULOUS) to see how he was. She said he had another blue bagging episode, but it was after being suctioned. All of his vitals were stable, except for him desating, so he came back quickly. And, his blood gases were good. So, having said, they are not overly concerned with the episodes, as some babies tend to "forget" to breathe every now and again, especially preemies. Also, Jaime is aware of the tube and he's not liking it, so he "clamps" down which blocks his airway causing the blue and desating. It makes sense, but it's very scary to witness. We're just hoping that he relaxes the rest of the night and stays stable!

Well, I'm off to "sleep." We're going to try and get back up to the hospital before 7:00 A.M.

Please say a little prayer for Jaime and Carter tonight!
Thanks,
Love to all,
Sheryl