$4,845 of $6,000
77 donations

This fundraiser ended on 01/21/13

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The family and friends of Manny and Katie are uniting to help raise money for their 5month old daughter, Sophia. Your support is appreciated

Sophia's diagnoses: Omphalocele, ASD, Interrupted IVC, Chronic lung disease, Lobar emphysema, GERD, Hemi-vertebrae, Pulmonary hypertension, and Hydronephrosis
Manny and I have 2 beautiful girls, Layla who is 5 and Sophia who is 5months. Our girls are beautiful, smart and full of character. We are truly blessed to have them in our life. On December 11, 2011,during a routine pre-natal ultrasound a large sac was shown on Sophia's belly. Filled with panic and fear, we were referred to a specialist who diagnosed our baby girl with having an omphalocele, meaning her liver and intestines were developing outside her body. A giant omphalocele is an abdominal wall defect and affects 1 in 10,000 babies. On top of that, 2/3 of omphalocele babies are boys. Our Sophia really beat the odds and upon finding out these statistics, we knew she was mean to be ours. The next 5months of pregnancy were filled with weekly ultrasounds, non stress testing and hospital visits. Manny and I decided to have Sophia's middle name be Esperanza, which means hope in Spanish. With faith and hope, we knew our baby girl could overcome any obstacle thrown in her path.
Sophia was born in 5/20/2012 And had 2 surgeries within her first 5 days of life. She was paralyzed and put into a coma to allow her body to heal. Once she had the breathing tube out, she was never able to breathe on her own and required oxygen 24hours a day. Because her lunges were is sick and required constant oxygen and because she was always working so hard to breathe, she could not suck a bottle. The only way she was fed is through a feeding tube in her nose. After 63 days in the NICU at Loyola, Sophia was able to come home with oxygen and fully tube fed. It was an emotional day that we had waited an eternity for. Manny, Layla and I were thrilled!!!!!
Our excitement was short lived once Sophia's oxygen requirements keep increasing and she was aspirating her feeds. After just 8weeks home, it was decided that sophia was going to need a 3rd surgery to insert a g-tube, a tube in her stomach so she can eat, in order to gain weight properly and grow. During this surgery she also needed a fundoplication, diaghram plication and hernia repair. She was only supposed to be in the hospital for 2-3 days. We are now going on day #22 and a discharge date is no where in sight. Doctors are estimating she will be here through the holidays and into the new year.
She is having several tests done trying to figure out what is going on. Her heart and lungs are extremely sick and she is currently paralyzed and in an induced coma. She also has a breathing tube in, as she is unable to breath on her own. Doctors have taken the breathing tube 3 times in the last 2 weeks, hoping that she would be able to breath on her own. Each time, Sophia does great for 2-3 days before both lungs start collapsing and she needs to have the breathing tube put back in. Why Sophia was able to breathe on her own before surgery and now cannot, is a mystery everyone is working to solve.
Within the next few months she will be needing, thoracotomy (part of her lung removed) because of her lobar emphysema, open heart surgery to fix the whole in her heart and possibly a tracheostomy (breathing tube through her throat) if she cannot tolerate breathing on her own. We have a Long road ahead and I will be living at the hospital until Sophia is finally back home. Even though I am a nurse, I am unable to work because staying with Sophia is my main priority right now. The stress of this situation is unimaginable and Manny, Layla and I are trying to cope the best we can. Not being there everyday to get Layla off to school, to help her do homework, or even put her to bed is extremely difficult for both of us. Prayers and positive thoughts are what Sophia needs in order to keep fighting. The strength Sophia has is amazing. I am so lucky to have her.
We are doing this fundraiser to help with the expenses of having a chronically ill child. Although the inpatient hospital care is paid for, therapies are not fully covered and add up very quick. Also, since I am living at the hospital with Sophia and unable to work, daily expenses prove difficult. Manny is often unable to come and visit me and and Sophia due to high gas prices and expensive parking. No donation is too small. Everything will help. I appreciate everyone's prayers and positive thoughts. Keep fighting Sophia!!
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