Elaina had a very special visitor today. Her big brother Ben came for the first time since Elaina's open heart surgery. This was a very difficult decision for me to make, and to be honest, I had to pray about it for almost a week before finally feeling good about it. It is SO hard for me to see Elaina hooked up the way she is; not only to the ventilator and draining tubes, but to see the cuts, pokes and bruises, some old and some new. I can only imagine how scary and confusing this could be to a 5 year old. I think that as a mother, I want to shield my child from these kind of things. BUT, I have now been at the hospital for 12 days without leaving, and Ben has only had the opportunity to spend an hour with me during that time. I finally decided that if Ben had the ability to see Elaina, that he would understand why Mommy had to be here instead of being with him. Ben was an only child for most of his life, and for all intents and purposes, he truly is a Mama's boy. Being apart has really taken a toll on the poor kiddo. Anyway, to make a long story short, Ben came at 1:30 and took me to lunch in the cafeteria. (Thanks Grandma for the $10!) Then we met with Joy, who is a child life specialist. She helped Ben make a "Buddy" doll and explained everything that Elaina was hooked up to. Ben was then ready to come and visit his sister. He did a lot better than I expected, but didn't want to stay very long at first. We took a trip to the playroom, he made a couple of crafts and then he wanted to go back and visit Elaina some more. It was a very positive experience, and now I feel a whole lot better about letting him have additional visits. He's going to be staying with my Mom now for a little while. He's been with my Aunt and Uncle almost exclusively since Elaina was first admitted to the hospital. On a side note, my Mom is currently staying with my Grandma who is recovering from kidney stones. Since Grandma is closer to the hospital than my house, I should be seeing more of Ben. Also, I'm hoping that in the near future I'll feel confident enough with Elaina's stability that I can go out to my Grandma's for dinner and to spend some time with Ben.
Anyway, quick Elaina update! Elaina had a very good day today! Her nurse practitioner called her "tenuously stable", but I think it was a good day. She got rid of 2 of her chest tubes, the main median tube is still in. She also got rid of the IJ (intra jugular) and her foley catheter. They started her on a couple of new medications to help in weaning her off of the nitric oxide and ventilator. She got down to 50% on her oxygen today! She did need to get a small blood transfusion this morning, and it seems to have made her look a little red - which for a "blue" baby means a little purple, but the nurse tonight is calling it her version of ruddy. They also put her NJ back in and started her feeds. She's on a high risk protocol, so right now she's only getting 1 cc per hour of Pregestimil. She had her eyes open quite a bit today and seemed to be comfortable, so all in all I feel like it was a good day. It's her first little baby steps on the road to recovery.
Now it's picture time!! What a day we had!!
The nurse last night was able to switch Elaina to a smaller crib. Perfect timing for a visit from Big Brother Ben!
Awww, he loves to pose for the camera! (She's awake looking at him!!)
Ben had to give her kisses. The only spot he could reach was her hand...
Do you see her stitches? This is just one of the many spots that will become her "medals of honor" from this visit. They had her subclavian central line here, and then removed it when Dr Hawkins attempted to do the axillary fistula attachment during her last surgery. She has a matching incision on the other side.Another one of her medals of honor. This is from the cut-down arterial line that was done before her first surgery. The line stopped working last Wednesday and had to be removed. They now have a cut-down arterial line in her other wrist. (Next to "normal" colored skin, you can tell how pink she really isn't.....)
She woke up for a little while and was looking around. She's still pretty zonked with all the sedation and pain meds. At least she's opening her eyes when you move her and talk to her.
The nurse got the best blood gas of the day shortly after this picture was taken. Way to go Elaina!!
Well, now I'm off to bed. It's actually 11:45pm. The pictures weren't uploading and it took me forever to get this done. I just had to post them though....
Thank you all again. I know I say it every day, but I know that the reason she is doing so well is because so many people are praying for her well being.