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Winters Journey

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My name is Monique, however most of you know me as Mo. I wanted to take such an important pause in life to share with everyone the life of my baby girl Winter Moon. When Edwin (EJ) and I found out we were having a beautiful baby girl we were so ecstatic, but we didn't even begin to understand the kind of challenges that were ahead of us all. At 23 weeks we were told that we had a week to make a big decision. To either terminate this pregnancy or continue while knowing all the risks. At 23 weeks we found out our baby girl had a heart condition called Tetralogy of Fallot. Winter has two holes in her heart. Her pulmonary valve is smaller than average. Her right chamber is bigger than her left and is constantly pumping harder and faster to try to delegate all the blood flow. Which means her lungs are working harder to keep up. At a very early stage in her life we found out that she also has a hard time swallowing which is making her aspirate. Therefore, Winter has been fed through the NG tube almost her whole life so far. The risk of Winter being born stillborn were very high.. But still I had hope. She was kicking and she was here. Delivery day she was born and cried on the spot. She made her arrival! Later on we found out with chromosome testing that Winter was diagnosed with Charge Syndrome. Charge syndrome is a very rare condition affecting 1 out of 10,000 infants. Due to Charge syndrome her hearing was affected. Baby girl not only has heart problems but also mild hearing loss so far. Charge syndrome also affects the vision and she is looking at having glasses in the near future as well. With Winter's Charge syndrome we are looking at a lot of developmental delays, but hoping with the right help from Early Intervention and all of our help from our team at Luries Children"s Hospital in Chicago; that we will be on the right curve to providing Winter with that extra help that she is going to need. Unfortunately, with Winter needing ongoing care at home, which requires providing her feeds through her NG tube and medications for her acid reflux, monitoring her stats daily and weight daily. Along with just making sure that her oxygen and heart rate are at a good baseline for her well being. But with doing all that I am unable to work. My rent, car note, something as simple as diapers and a phone bill have been unbearable to manage.. I am Winter's main care giver and I must be with her to monitor and ensure her safety, since I have been trained to do so since discharge from the NICU. Winter was born and then stayed in the NICU up to her mid point of 2 months. Never experiencing real air, or hearing the sounds of the morning birds.. But after two long months she got to come home! But it is time already to take on our next challenge. On April 25th Winter has her preop appointment. Then On April 30th Winter has her FIRST open heart reconstructive surgery. She will be getting the Glenn Procedure. Winter already had a catheter of her heart done and they ended up doing two minor interventions. Putting two coils in her heart to correct the blood flow a little bit better. With a heavy and anxious heart I am asking all my loved ones, all my friends and family, the ones who still check in after years passing between us. This is my current life.. My mother Alicia, Edwin and so many people have been such a huge support in Winter's journey. I look forward to sharing all of what Winter has to offer this world with all of you. Until then I am asking for help, for whatever you can provide would be so much appreciated. This journey hasn't been easy. This journey isn’t for the weak. But my Winter Moon is so strong. She is a fighter, She is a warrior, She is my everything that makes me whole. Please take the time to share our story with your loved ones. Her story is just beginning, shes got so much to show us in this world. Come and join our journey. @ Wintersjourney13 .
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Donations 

  • Anonymous
    • $100
    • 1 mo
  • Anonymous
    • $100
    • 1 mo
  • Anonymous
    • $75
    • 4 mos
  • Anonymous
    • $100
    • 4 mos
  • Anonymous
    • $25
    • 4 mos
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Organizer

Monique Carlisle
Organizer
Aurora, IL

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