Baby Madilyn's Health and Rehabilitation
Organized by: Stephanie Mundo
Stephanie Mundo via Crowdrise
September 25, 2014
To all our friends and family, first and foremost we would like to thank you all from the bottom of our hearts for all your thoughts and prayers for Little Miss. Madilyn. As you all know today was her 4th surgery, second one within 4 days. Her doctor was successful in reconnecting her esophagus today. Praise The Lord! She is recovering peacefully at the moment, but these next few days are going to be very rough for her. We ask that you please keep her in your prayers as she fights to heal her tiny little body. We truly believe with The Lord above she can do this. Our love to all,
Shane, Michele, Brayden, Jonathan, and Madilyn
My sister and brother-in-law, Michele and Shane, have been waiting a long time to have their third child. After having two happy and healthy boys, who are now 16 and 12 years old, they always knew they wanted another child but the years kept creeping by. Imagine their surprise and delight when they found out in December 2013 that they were pregnant with that third child --- a baby girl!
Michele's pregnancy was normal until about 30 weeks when she was placed on bed rest. At 32 weeks, Michele began feeling "off" and had gone to the hospital where she was told she would have to stay for the remainder of her pregnancy. Turns out she wouldn't have to stay for very long. Two days after being admitted, it was discovered she had preeclampsia and was in danger of losing her life as well as the baby.
Madilyn Michele was born prematurely via cesarian section at 32 weeks on June 19, 2014. Besides being underweight at 2 lbs 13 oz, all seemed normal until the doctors looked her over and discovered she didn't have an opening for her rectum. She was whisked away for further evaluation.
Madilyn has a condition called VACTERL Association. It is a disorder that affects many body systems. VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. People diagnosed with VACTERL association typically have at least three of these characteristic features. You can read more about this on the NIH Genetics Home Reference website at the following link: http://ghr.nlm.nih.gov/condition/vacterl-association
Madilyn has tracheo-esophageal fistula, anal atresia (imperforate anus), and possibly some cardiac, vertebral and limb defects. She has been in the NICU since the day she was born. She will require several surgeries to repair all that she needs to eat, digest and eliminate properly. She had already undergone her first surgery on the day she was born to place a g-tube so the stomach gases could escape and to make the ostomies so she could expel her waste. For a month and a week, we have all waited patiently for Madilyn to gain the needed weight so the doctors could perform the second surgery.
On Monday, July 28, 2014 at just under 5 lbs, Madilyn had undergone her second surgery. This was a harrowing day for all of us. The doctors managed to repair the tracheo-esophageal fistula and tried unsuccessfully to stretch her esophagus to meet her stomach, which are not connected. They moved on to her lower abdomen and discovered her intestines were malrotated and had to reposition them so they wouldn't twist. This repositioning also required removal of her appendix, which would have been on the wrong side of the body. Madilyn was in surgery for almost 5 hours. She made it through surgery but one of her lungs had collapsed. Needless to say, she and our entire family had a very rough night.
Luckily for us, Madilyn is a fighter and thanks to the tireless hospital staff and hundreds of people praying for her, she is on the mend from this surgery. God-willing, all of her subsequent surgeries will be just as (if not more) successful than the first two.
The family has been traveling over 140 miles each day to visit with Madilyn. Michele goes twice a day, Shane goes after work and both sets of grandparents visit at least 3 times a week. We have all fallen so much in love with this beautiful little angel and can't imagine our lives without her. The emotional, physical and financial impact this event has placed on my sister and her family is immeasurable. We are taking each day as it comes and remain positive and optimistic. This does not discount the fact that the medical bills are piling up. As of July 19, 2014, over $100,000.00 has been billed to insurance with over $10,000.00 being my sister's responsibility. (As of the first week of August, the total amount billed to insurance was $350K.) This is just for the first month of little Miss Madilyn's life and she's expected to be in the hospital for at least 6 more. I am humbly asking for your help to offset some of the financial burden that's being placed on my sister & her family.
Madilyn's Aunt Stephie