Tuesday, August 09, 2005


Yep, Max has finally reached the whopping 5 pound marker...we are thrilled! He is on a VERY high calorie diet (which sometimes gives him stinky gas!) and his medical team is working very hard to get him bigger and stronger. While I am excited about the 5 pound marker, his docs and nurses say he really should have gained more than that by now. According to some various tests, he is not digesting his food too well...and of course he is burning a lot of calories with his labored breathing.

Regarding his heart, the doctors increased his meds again today. However, if this does not work, they are talking about moving up the heart surgery. That would be a temporary fix until they perform the complete open heart surgery.

On another issue (and to end this update on a positive note), oral aversion is very common among children with prolonged stays in the hospital. Feeding tubes, intubation, etc. often cause babies to not want items near their mouth. I have been working nearly daily with an occupational therapist to prevent this problem. And finally today, he took the binky...and sucked away and away! He has taken it before but only for short periods of time. Today he sucked on the binky for over 15 minutes! I was overjoyed and very teary! Very exciting little milestone for us! Little Max is growing up!!!!

Here in the photo, his cuddly friends are congratulating Max for reaching 5 pounds AND for his successful binky sucking! Way to go Max! (The mask in front of him is how he gets his oxygen.)


rebecca said...

Way to go Max!!!!! Amy, thank you for setting up this blog so I can see how Maxwell is doing on a daily basis. The two of you are in my thoughts daily. Can't wait to see Max. Talk to you soon.


Suzanne Holman said...
This comment has been removed by a blog administrator.
Suzanne Holman said...

Amy, your blog is looking great!
I love the photo of Max with all his animals. He is looking so adorable!
It's difficult to be back in Phoenix now after being there with him all his life so far!
I'll enjoy seeing his new photos and reading the updates as they are happening.
Love, Grammy

Kirstin said...

Way to go Max! Amy - thanks for setting this up. I enjoying reading daily about how you both are doing. It makes the miles between disappear. Can't wait to see max. Talk to you soon.

kate said...

Amy, we are so happy to see Max's beautiful pictures and hear about how he is doing. I am so excited that he is sucking on the binky! That is such a big step. We are looking forward to hearing more and more of his firsts on here! Thanks for putting this together and taking the time to keep us all updated. Take care.
Love, Kate

Meredith said...


I love this picture of Max and all his pals! He looks especially cute in that outfit:-)
I'm glad to hear that he is enjoying the binky and is gaining some weight. Keep it up, Maxi-Max!
We loved seeing you and spending time with your angel.
Talk to you soon -

Ruthie said...

Oh my word! This is so cool! Max you look amazing! So big and handsom. Loving how you decorated his bed with all his new friends. Take care!

tessa said...

Amy beatiful job on your blog! I am so happy that i can read your updates and see how maxwell is doing. you are an amazing woman lady. I can't even wait to see you both!

love t

Roberta said...

Way to go Max. Amy, this is wonderful. It's nice that everyone can go and read about Max whenever they want. Kim (curves)has been keeping me updated before this. Max is simply georgeous.

Steph said...

Hey Amy and Maxwell!!! Sooooooo glad you've set up a blog to share all the latest pics and news with us all. We love you both so much and can't wait to see you next week! Drew and I are really excited to meet baby Max. Thinking of you both each and every day, sending love and good thoughts your way.

And just love the latest pic! He's absolutely beautiful.

XOXO Steph and Drew

Drew said...

Congrats on the 5lb mark Max!!

Amy, great blog. Steph and I can't wait to see you guys next week! I can't wait to meet the Max. See ya soon.