In Between Surgeries at CHOP

I have never been happier to return home. Not even from the NICU. For some reason, well many reasons, our stay in Philly was really hard on me. There were many days it was just Me, Wright, and baby Brendan. I missed Mabel so so so much. Luckily, after being here a week with my mom, my Dad flew her up to see me for a few days. That cheered me up for a little while. Brendan came for the last week of our stay and I was happy to have the company. Being in a new town, during lock-down and riots with your child miserable in the hospital and no friends and family is r o u g h. So, again, I have never been happier to be home.

Brendan is THRIVING at home. We had to tube feed him a bit when we returned but within a week or two, we were exclusively bottle feeding! What a relief! When he came home he no longer required oxygen, breathing treatments or a pulse-oximeter! That made his and our day so much more enjoyable. Plus the real bonus.. we moved both boys out of their SNOOS, out of swaddles, and dropped all of their overnight feeds! SLEEP! Sleep is amazing! I know I don't need to tell any other mom this, because they already know..... but my goodness you don't know how tired you were until you actually get a night of uninterrupted sleep!

Brendan was still way behind on all of his milestones due to being bed bound for a month and his level of prematurity. He had poor muscle tone and very rigid muscles and torticollis. After a few weeks of physical therapy he has improved so much! He still has a long way to go but he's gotten so much stronger. His torticollis (stiff neck) has almost corrected and he can bare weight on his legs and roll front to back and scoot all over the floor on his back. He tolerates the bouncer and walker now! He'll bounce, bounce, bounce! He pushes backwards in his walker, but I know that's the first steps. We still need some work sitting, but he's doing great and is my little superhero!

Wright, although slightly behind, impresses me everyday. He's sitting up on his own. Has been bearing his full weight on his legs for months and is just about to crawl. (I'm writing this update while I'm out of town so I hope he doesn't start while I'm gone. I'd hate to miss it)! He can roll and scoot all over the floor on his tummy or back. He LOVES to bounce and can race in his walker. He loves to eat! Avocados, bananas, baked cheetos, turkey, purees, you name it, he loves it! He's very close to pulling up so I think free standing will happen a little after their first birthday!

Our plan is to keep letting Wright click right along and to get Brendan's distractors and G-tube removed. Distractor removal is scheduled for September 8th and G-Tube removals is scheduled for October 7th. Then one month until their 1st Birthday on November 6th! Where has the time gone?!