Mr. Buttons

Max may have found his forever friend... we've noticed he's so snuggly with blankets, burp cloths, bibs, etc.. that we knew we needed to find him someone to snuggle.












I stumbled upon this adorable elephant with the belly button and stitches on his tummy and immediately thought of our Mighty Max and all his scars. He latched onto that thing and hasn't let go since!

New tricks...

Not only is Max giggling and smiling and cooing... he is working on sitting up (with support) and his physical therapy sessions focus on rolling over.

Here are just a few pics of him today in the Bumbo seat.... I posted a great video of this on Facebook... sorry, but it's too large for the blog.

Enjoy!

Max giggles

It's like a secret, or I'd post a video. He was smiling at me last night just started giggling. Troy could hear him in the kitchen. But as soon as he comes to watch, Max stops. It's like Troy is the warden or something, and he clamps up anytime Daddy is around. So, for now, Troy keeps at a distance, listening, and laughing along with us. I'll catch it on the camera eventually...

Trying to remember...

There is still so much I don't remember about Max's first days in the NICU. I was pulling together photos from the year today as I start to work on our Christmas card. when I found this one...It's from his first day of life and I don't think I've every posted it anywhere. You can see how battered and bruised he is, that black on his shoulder is a massive bruise, just from being born. He was black and blue up his back and all around his head. I can remember seeing the horrible bruises and wondering what was wrong until the nurse told me it was because my body was shoving him out, until they did the surgery and took him to make it less traumatic on his little body.

I feel like I want to remember these things. These were the early days of Max's life, his beginning. We saw a 7 day old baby at Costco this weekend. She was just a few pounds smaller than Max is now. (although he's almost 6 months) It made me realize that I missed all that time, the first time holding and carrying him around when he was so tiny. When I held him at that size, he was on a ventilator and he had to be taped to my shirt, so he could keep the tubes in to help him breathe.

I found a piece of that tape on a sweater in my closet today. It's a sweater I would drag up to the NICU to put on over my clothes. I guess I hadn't worn it in several months, and that piece of tape survived all this time. It just reminds me how difficult it was, waiting for someone else to tell me it was okay to hold him, to hand him to me, to tape him up so he was secure to let us be together.

Now, sometimes, I just sit and hold him for hours, because I can. I can walk with him talk on the phone with him, sleep with him in my arms and no one can tell me it's not okay. He's finally ours. Finally home.

Those early memories are finally coming back to me. I cherish them. Even the difficult times, because I know all 5 of us carry those scars. We endured so much to get him here.

Marathon doctor day...

Max had all his follow-up appointments Wednesday. We were up at 5 and on the road early to head down to KU med center for his follow-up visit with the surgeon, Dr. Schropp.

This is the surgeon who talked NICU docs through is emergency penrose drain procedure, then performed surgery on Max 3 times himself. Once to explore his bowels and create the ostomy, then to reverse the ostomy and perform his circumcision, and finally to repair his dual inguinal hernias.

Dr. Schropp was THRILLED to see how big, strong and healthy our boy is! Max just grinned at him for the whole exam and it was wonderful. Dr. Schropp was telling his resident just how tiny and sick Max had been and how differently this could all have gone. He says from a surgical standpoint, Max is perfect, healed, and he cleared us to start feeding him rice cereal as soon as his pediatrician give the OK.

Max also weighed in at more than 12 lbs! 6 times his birth weight.

Next we picked up big sister and all of his headed back to the hospital for Max's NICU follow-up. They calculated his weight gain at about an ounce a day, since we left the NICU, which is at the high end of what they hope to see, so, he's doing great. He has NOT grown in height since we left, but they say height is the last thing to catch up.

His bone labs and liver labs were GREATLY improved! So much in fact, that we can stop the medication for his liver levels. His bones are much stronger, but we have to continue on the special formula for a few months longer, probably until after the first of the year.

Since everything is going so well, we also, DO NOT have to follow up with the NICU docs! Just regular well-baby visits to the pediatrician now! WOOHOO! That next well baby exam is coming up later this month. He'll be 6 months!

On the normal childhood front, Max appears to be cutting his first tooth. He's drooly and cranky and the docs confirmed that's likely what's going on. YEAH for normalcy! Let's keep that coming!

We start his therapy with infant/ toddler services next week and they can do the physical therapy with out worries about his bones, which is a real plus. More to come after our first session...