Thursday, December 08, 2005


We have had a good few days...some ups, some downs...but positive for the most part. :)

We are making progress in bringing my lil' guy home. I have been working with the discharge nurse and the team closely to make this happen...there is A LOT to do to get ready! From home nursing and medical equipment to final tests and evaluations, there is much, much to coordinate. Additionally we are getting therapy lined up so we can begin as soon as we get home. Max has a lot of catching up to do. Spending nearly six months in a hospital doesn't allow for much development unfortunately.

Along those lines, I am quite nervous right now about his vision or his ability to process what he sees. I am hoping it simply is a reaction to the hospital surroundings and Max just being apprehensive because of all that has happened to him (rightly so). I have requested several consults. Or perhaps "demanded" is the more appropriate word. I told them I will sit outside their office until Max is seen that considered "demanding???" Oh well! You gotta do what you gotta do! Anyway I have requested/demanded consults with opthamology and neurodevelopmental doctors and am very anxious to hear their thoughts.

Last night Max was able to get a real bath for the first time in two months (in the ICU he was only able to get a sponge bath due to his fragile health and the breathing tube, etc). It was very exciting! Well it was exciting for me, but as you can see in the photos, Max actually fell asleep a few minutes into it! :) It was so funny! He was so relaxed and just zonked out. This also was the first time I was able to give him a bath by myself. Before he had so much "equipment," two people were necessary. Additionally, I know him well enough now that I can safely take him off the monitors for a few minutes and know if there is any trouble. Great to now feel that comfortable.

Max also had fun today in his swing...the first time in over two months. It's wonderful seeing him enjoying typical baby activities! He found his mouth this week and loves sticking his hand into it. I love watching him doing that.

We are working on changing his feeding regime so that he is not stuck to his feeding tube 24/ far he is making good progress and can be off the feeds for four hours. That will allow me to take him to the doctors, etc. and not have to worry about bringing his feeds with us. Yesterday we had a little "oopsy!" with his Gtube. I was putting him back in bed and we pulled it out. He didn't seem impacted by it, but it brought me to tears. I was so scared that milk would just start pouring out, but of course we got it under control immediately and his new Gtube is much more attractive. The doctors were teasing me that it was passive aggressive behavior on my part and I should have just asked for the new and improved tube. :) In a month it will be replaced with an even better, more permanent version.

Last but not least, his CO2 numbers look slightly better than earlier this week. That certainly is promising but it still is a concern. Time will tell...

We did a gorgeous photo shoot this week with Maxwell for his Christmas cards. He looks absolutely adorable. WOW! We actually fit him INTO a stocking (made by Mary Mom while she visited me on bedrest!). I will post for the holidays!

Enough for now, I am absolutely exhausted and need to catch some zzzz's. Thank you everyone for all of the "welcome home" letters and emails for Max. He is very appreciative and feels very very LOVED!!! :)


Dylan (and Kristy) said...

Looking good Max. Obviously you liked your bath. We can't wait for when you come home. Keep improving on those CO2 levels..okay? Give your Momma a hug for us.

Kristy, Ray, and Dylan.

Anara said...

What a handsome guy!!! I think it is so sweet that Max can fall asleep while his Mommy gives him a bath, now that's a baby that is
totally connected to his Mother. How wonderful!! I'm glad to hear that you are still moving toward Max coming home soon, that will be so good for Max and you. You stated that Max's Co2 levels have improved some, I told you he would figure it out. That's one smart guy you have there. I am without e-mail at the moment so I have to come over to my sister's to use the internet. I should have internet again on the 14th. I will let you know as soon as I have it.
I love you two.. BIG hugs and kisses from Auntie Anara XOXOXO