Tuesday, April 12, 2011

Thank you for your support...

Our sweet babygirl, Addison Avery, was born 6 weeks premature on November 10, 2010 weighing 4 pounds. After an uneventful NICU stay, we were thrilled to take her home in what appeared to be perfect (although tiny) health. But once we got her home, things started to fall apart. First, she stopped pooping - and we were concerned, but not alarmed. We used suppositories to help her go, and it was written off as a 'preemie thing'. Then, she stopped growing. 

A week went by, then two, and she was eating and eating and not gaining a single ounce. Two more weeks, and her height and head had stopped growing too. We were hospitalized...and the search for Answers for Addison had begun.

I never thought I would be sitting here with a 5 month old still fighting for those answers. It seemed so simple - we took her in for what we thought was constipation - we never could have guessed what it would become. She's in a lot of pain now most of the time, but when her tummy doesn't hurt, she is the happiest baby in the world. The first thing people say when they see her is that she just exudes joy, you would never know she's had so many problems - I pray this ability follows her into adulthood, where being a light in a dark world is an unusual thing.

As you read on, you'll learn of our desperate search for answers. It is a battle that all too often feels impossible to win. But God has brought peace to our hearts and minds, and the courage to endure with her whatever lies ahead. Addison has seen so many doctors and been through so many tests that it's hard to keep believing we will ever truly be able to cure her problems and relieve her pain.

But as long as she's too little to fight for herself, as her Mommy - I'll do everything I can to find her an answer.
I'll never let anyone give up on you sweetheart...

History: 34 week preemie; Low birth-weight baby, 7 days in the NICU, Abnormal Hemoglobin, 5 weeks of Jaundice, Inability to Stool, Slow weight gain, Heart murmur, Anemia, Failure to Thrive, GI Bleeding, Intussusception, Intermittent Vomiting, Abdominal Pain, Rectal Mucus Discharge, Recurring Urinary Tract Infections.

Tests: 24 Xray's, Ultrasound, Electrocardiogram, Dozens of Rectal Exams, Upper GI Study, 2 Barium Enema's, Sweat Chloride test, Genetic Cystic Fibrosis screening, Countless tubes of blood, MRI, Suction Rectal Biopsy, Full Thickness Rectal Biopsy, Voiding Cystourethrogram, Stool Analysis, Urine Analysis, Sigmoidoscopy, Sigmoid Biopsy

Hospitals: Mott Children's at University of Michigan, Toledo Children's Hospital, St. Anne's, St. Vincent's, St. Joseph's Ann Arbor, Children's Hospital of Michigan, Nationwide Children's Hospital in Columbus.

Diagnosis: Still 'Chasing Zebras'... (To learn more, click the 'chasing zebras' link up top.)

Pharmacy: Biogiaa Probiotic Drops, Simethicone, Miralax, Bactrim, Medela Infant Scale, 2x Daily Rectal Irrigations, Infant Suppositories, Zantac, 24-Calorie Feedings

1 comment:

  1. I recently read a study online linking vitamin d deficiency to autism. I don't know if they have checked this with Addison or if she gets vitamin d. Her timeline where it suddenly happened seems to line up with what this article says the section you would want to read is towards the bottom