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  1. looking for others like us...

    We are new to the Cherubs world and are looking for other parents who have lost their baby. We had to let go early due to extreme complications and I was hoping to connect with others that have been in our shoes. Please email me and for those of you who are still fighting, I will hold your hands spiritually and send loving, healing energy and prayers your way.
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  2. Big Bad Mean ECMO

    Prayers please...Avarey is doing well this morning but she has to have a few procedures which are risky! With taking the fluid off it has caused a space between her windpipe and breathing tube...they now have to change her to a bigger breathing tube. This means moving her neck with the blood tubes in...and with being a blood thinners this could cause bleeding. Also they are not pleased with the artery line in her left leg and will be pulling that and placing it in her right leg. Once again this ...
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  3. Practice, practice, practice

    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 ...
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  4. "I'm not there yet, but I am closer then I was yesterday"

    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 ...
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  5. Bad days mean beter days are just around the corner...

    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 ...
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