Madisyn was born at 25 weeks on Feburary 13, 2014. Weighing in at 1 lb 5 oz due to HELLP syndrome (pregnant mom starts bleeding out and goes into liver failure). Rhonda (her mom) was airlifted from St Mary's in Kankakee to University of Chicago in poor health. Went unresponsive on February 11th and they thought she had a brain bleed. Took me for emergency c-section. Left Rhonda intubated and put all sorts of tubes and lines in me. She didn't get to meet Madisyn for 3 days.
Madisyn coded after delivery, did compressions for 7 minutes
Intubated (breathing tube) for total of 39 days.
CPAP 30 days. Couldn't get off oxygen so came home on oxygen.
Madisyn has had surgery for bilateral (both sides) inguinal hernia repair on 5/19.
-Diagnosed with Hydronephrosis of left kidney- gets kidney ultrasounds for that and close monitoring.
-Diagnosed with Bronchopulmonary Dysplasia- lungs are damaged from long term intubation, on many meds for breathing, apnea monitor at home, pulse oximeter monitor at home, oxygen dependent.
-Diagnosed with Osteopenia of Prematurity- has to have multivitamin for rest of life and see me to monitor her bones.
-Diagnosed with a PFO- whole in her heart that is supposed to close, but hasn't. May require surgery in next year to close.
She has problem gaining weight so she's on high calorie formula.
End of July she developed severe respiratory distress. Was admitted to.Comers Children's hospital PICU in bad shape. She was dehydrated, had unknown infection, blockage of her upper airway. Right away she had nec treatments, lines placed. ENT scoped her above her vocal.cords and found Laryngomalacia- a
Piece of floppy tissue above the vocal cords caused by being small for gestational age. Her breathing was so bad they knew she had some sort of narrowing going on below her vocal cords but would have to take her to OR to look. Her breathing got worse and worse. She ended up being taken emergently to OR by ENT and in route she started vomiting green discharge which was alarming because she hadn't been allowed to eat in over 24 hours. In surgery the ENT discovered 2 large cysts in her upper airway blocking 90%, she left her intubated to heel and to be able to undergo a GI study to make sure she didn't have twisted stomach. 2 mds and 2 nurses had to take her down to radiology to make sure she was going to be ok for GI study because she was so critical after surgery. Great news was no twisted stomach just horrible reflux. GI md consulted for extreme reflux management. During her intubation she was sedated and paralyzed. They placed a PICC line so she didn't have to be poked anymore so often. She started to problems maintaining her temperature, she was hypothermic. They had to warm her with a machine. Her heart rate kept plummeting into the 40-50's and they didn't know why. Cardiologist was working hard to figure it out. At one point she was at the highest settings on ventilator and wasn't saturating well, they had to bag her. Extubated. Swallow study to make sure she wasn't aspiration into her lungs. She thankfully passed that. Because she's so little and is way under what she should be eating we had to put in an feeding tube to help her. She will be going home with that. Through it all she continues to smile. And her brothers continue to love her so very much. And of course her parents would give their lives for her to live if we could.
Brandon (her father), his mom Pam, and my brother Rodney donated blood to her in NICU. She had 5 blood transfusions.
This is Madisyn's Fight, This is her story, This is our mission: To help her family with financial difficulties and show our love and support for this little miracle!
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- KEVIN SIMS
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