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Axel has had a gtube/mickey since right before he came home from the NICU. This April will be one year. As hard as I tried to get him to eat something by mouth he wasn't having it. He passed his swallow study back in the beginning of September, but only purees. He still failed thin and thick liquids miserably. So we started slowly giving him purees. But most of the time it ended in failure. We had started therapy with ECI but soon D/C it and asked for an appt at Texas Children's. The soonest opening ...

Avarey Grace Champagne has to be the toughest girl I know! ONE week old and she has already been poked, prodded, and put on big bad ECMO! But she is two days on ECMO and kicking booty! The doctors are pleased with her numbers and are already talking about weening her off in about two days! PRAISE GOD...I know we are not out of the woods yet but we have hit a clearing And as it is with all CDH babies you celebrate the good days and take the bad days with stride! Avarey's brain ultrasound came ...

Been kinda a down day...Avarey stayed stable all night but started having blood pressure issues throughout the day. She is now back on her paralysis medicine because she was becoming to active and trying to breathe on her on and upsetting this vent. All of this led to her blood pressure dropping. She has been added to another blood pressure medicine, but they are weeening her off of one of the stronger bp meds. So we are up to 3 bp meds for the night, but hopefully down to one in the morning! The ...

Good Afternoon, My Gorgeous, Liam!

I have been doing a lot of internal soul searching and talking with just a couple of people. I won't dwell on my milions of thoughts, fears, and questions, but what I've surmised from everything is that I believe with all of my being that you would not want me to dwell and turn myself inside out with the shoulda, coulda, woulda's and what if's. I know that you want us to believe that God had a plan from the very beginning and that God would never ...

Ok...big update on Avarey...first of all thank you for every last thought prayer question well wish and concerbs...it is amazing to see how many peoples hearts Avarey has touched...she sure has grabbed a hold of ours...Kevin and I are so thankful to be blessed with such amazing people in our lives...thank you!! Now the princess has had a great day!!! They kept ger on the jet vent instead of switching to the traditional bc right now it is gentler on her...they have completely turned her paralisys ...