Just wanted to update you all on how our afternoon and evening have gone. For Alex’s 1pm feeding and medications, I gave only 2 ounces of formula (typical is 8oz), 2 oz of water and scheduled medications. Within minutes of giving those things, she threw up. I showered her and then my phone rang. I didn’t even have to call Dr. LePichon to see what to do, I guess God whispered in his ear and he called just to check on her. He said that since she had thrown everything up so quickly that she did not get the medications we put through her feeding tube and to give them again immediately so that she didn’t reach a higher level of pain. We also decided to hold formula for a day or two to let her tummy rest and just push small amounts of fluid very often. So, all day we have been giving one ounce of Pedialyte every 20 minutes to keep her hydrated. She fell asleep about 1:45pm and has been asleep ever since. Drew and I have had our moments to cry, to talk, to pray and to just sit with Alex in silence. We are continuing scheduled medications and, in all honesty, we are hoping that she does not wake up. She is so peaceful when she is sleeping and we do not want to reach a situation where she is experiencing pain that we cannot control. Her breathing is slow and becoming more labored and periodically, for our own curiosity and information, we check her oxygen levels. The fluctuate from a high 98% to as low as 79%.
Thank you all for your kind words and for lifting us up in prayer. Drew and I are feeling a sense of calm and peace and that can only be attributed to our God. We are so grateful to have her in our home and for her final moments on this earth to be spend surrounded by a sense of peace that surpasses all.
“And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.”