Susie Newsie
LILY A Story in Pictures
Susanna Grace was born July 2, 1999. Susanna means "A Lily." Susie is quite literally "A Lily of Grace." Susie, dubbed "Miracle Baby," is a blessing to us and an inspiration to many.
Susanna Grace
1. August 6, 1999 Susie is in the PICU, Children's Hospital, hooked up to a "vent" (respirator), bloated with IV fluids and trussed up like a chicken. We will never forget the pitiful look in her eyes. It clearly speaks, "Please help me." Susie is five weeks old. She will spend the majority of her first two months is in the hospital. Finally, she is diagnosed with panhypopituitarism and given medication.
2.3.4. September-November 1999 Home with her family. We see the GRACE of God. Grace is God's favor, undeserved by mankind. Susie is able to drink thin liquids and even breastfeed, after two months of tube feedings, aspiration, and formula thickened with rice cereal. Susie has a trach, and is hooked up to a blue tube that provides cool mist. (She was given the trach before the panhypopituitarism (and later Septo-Optic Dysplasia) diagnosis.) However, she no longer needs extra oxygen.
5. November, 1999: Susie at home, working on her Christmas wish list.
December, 1999 All seems lost as we are told Susie's upper airway has become totally obstructed. Susie is abruptly scheduled for broncoscopy, and as an afterthought, possible "decanulation?" (trach removal). We are totally surprised, as doctors seem to think she is far from ready to get rid of the trach, and that her laryngomalacia is "probably worse." In spite of all negative odds, trach is successfully removed. We are so glad the doctors gave it a try! She is still considered medically fragile, but is able to make it without the trach. We were told almost NO ONE is able to get rid of a trach before one year of age. Susie is five months old and weighs ten pounds, eight ounces.
Sorry, we didn't think to take any pictures in the hospital. It all happened so fast!
Thank you Jesus, and thank you family and friends, for all of your prayers. We are also thankful that Susie's life has touched so many hearts all over the world.
Less than a week after the trach is removed, Susie discovers her voice! She begins to imitate sounds, like "Hi," "Uhuh," and "Lori." We'll have to watch what we say to Susie, if we want her to learn good grammar.
Susie Cruisin' at age One! Happy
Birthday, "Miracle Baby!"
Thanksgiving, 2000: Susie alternates between frequent chattering, with a new word practically every day, to periods of quiet, without talking for weeks. Susie's been cruising for months, and taking a few steps. She began walking in earnest at sixteen months, following her sister and brother around the house. What a wonderful gift!
Update, Christmas 2004: Susie is 5, and loves playing nurse, tea shop, and house. She’s doing homeschool Kindergarten work this year, and is starting to read and write a little. We continue to be thankful for prayers for Susie. If you want to read about some of Susie's health challenges, here's information about Septo-Optic Dysplasia, http://www.focusfamilies.org/focus/ .
Update, October 2005: Susie talks in complete sentences and paragraphs, but articulation is still a problem. We’re Homeschooling first grade, though the grace of the Lord and the help of many friends and family. Since she was two, she has said she wants to be a nurse when she grows up. She’s learning to play chess, and enjoys playing with Polly dolls. She loves people, music, movies (including “Over the Hedge”) and posing for the camera.
Here’s our “Miracle Baby,” posing for the camera at age six. Many people have called her “Miracle Baby,” and even her doctor has said, “She’s a miracle!” Thank you, Jesus.
Do you need help with an illness or trial? Find encouragement at http://www.eaglesnesthome.com/words.htm
Luke 8:2,3 "...and certain women who had been healed of evil spirits and infirmities...and SUSANNA, and many others who provided for Him from their substance."
Song of Solomon 2:1-2 Prophetic of Jesus: "I am the rose of Sharon and the LILY of the valley."
Ephesian 2:8,9 "For by GRACE you have been saved through faith, and that not of yourselves; it is the gift of God, not of works, lest anyone should boast."
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