We would never wish Infant Botulism on any body's baby, but seeing the overwhelming out pour of love & support, as well as being given the opportunity to truly rely on God's grace has been amazing. This whole experience has now made a wonderful testimony for us to share.
A short summary of last week's events:
On Sunday, July 8th, Riley was tentatively diagnosed with Infant Botulism. All the symptoms were there, but the test results would not be back for a few days. We had just been transferred from Kaiser Anaheim to Kaiser LA, & Riley was getting weaker every hour. When we arrived at Kaiser LA, the doctors were waiting & told us that they wanted to treat her for Infant Botulism ASAP & not wait for the test results. Thank God for smart, efficient & caring doctors. They had to order the medication from the east coast. It was one of the longest days we ever experienced. Aaron & I felt at such a loss as we witnessed our precious baby girl weakening & heard her horrible moaning. Every time she moaned, it just broke our hearts. We were so scared.The first of God's many miracles was that the medication arrived much quicker than expected; & they were able to administer it to her that night! The medication is called Baby BIG & cost $45,000! The amazing thing is that only one dose is needed to trap the poisonous toxin. 
(God - Thank you so much for Baby BIG)
Each day Riley showed improvement - moving her arms & legs, no more moaning, staying more alert, making eye contact, smiling, & eventually gaining head control. Slowly but surely they took her off of her IVs, off her oxygen support, & she even pulled her feeding tube out on her own! We worked with her on her feeding & by Thursday afternoon, she was taking a bottle.
(Riley's face after she pulled out her feeding tube. First day in almost a week without tubes in her)
Nurses with over 20 years experience said that they remember when there was no Baby BIG, & babies stayed in the hospital intibated (sp?) for 7-9 months. Even with Baby BIG, we were told we could be in the hospital anywhere from 14 - 40 days; but Riley is a Rockstar! She was discharged 1 week later & we are at home now! God has blessed us so much!Not only did God bless us with Riley's health, but he has also blessed us with an amazing community supporting us. Thank you to all of you who emailed, visited, prayed, sent cards, fed us, brought clothing & toiletries, brought games/things to keep us busy, sent out updates, CLEANED OUR HOUSE, house sat, etc... I am so sorry if I forgot anything, but please know that each & every one of you blessed us in so many ways.
Thank you God & thank you to all of you, our family & friends in Christ. We are so happy to have our baby girl home.
Love,
The Millsies
1 comment:
GOD IS SO GOOD! We are so happy to hear of your miracle. Thank you for keeping us updated, and allowing us to bless you. You are a precious family! Great are God's plans for your baby girl! ~Nate and Sara Jones
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